From Mr Bad Fairy
The last post was taken from The Bad Fairy's notes whilst staying at the Sue Ryder Hospice. She insisted on flying home for the day on Thursday so we took Miss and Master Bad Fairy out of school for the afternoon and had a lovely time on a remarkably sunny day.
Sadly The Bad Fairy passed away peacefully in her sleep at 5.15pm the following day (Friday 8th October 2010), she always had great timing! I kissed her fairwell as she slept to start her on her next adventure.
The Bad Fairy has been an inspiration to all who knew her. She was always modest, selfless, ready to smile and on the side of the nurses! She will leave a big hole in our lives but her spirit lives on in Master and Miss BF.
The fairy dust will be sprinkled in an area of the garden dedicated to wildlife and directly below where the rainbows always rise.
I shall keep an eye on this blog and show it to old friends and new. If anyone reading this needs any help or a sprinkle of magic dust then the BF family will be here.
Saturday 9 October 2010
I told a fib - back to medical stuff!
Apologies all round but this is much more cheerful than normal.
I'm in a local Sue Ryder Hospice. Considering my severe dislike of hospitals this is out of this world.
I have a room to myself, staff who are so cheerful, considerate and just downright lovely!! The chef is brilliant and tempted me to eat again, all fresh and home cooked. I think I'd be perfectly happy to end my days here!
On the treatment side, I can eat, I haven't slept so well for ages, much less pain, (less grumpy!!!) and and and.... haven't been sick for 5 days (Yippee!!).
My legs haven't changed but then my sodium isn't improving quickly! But - at least it's going in the right direction. My super duper friend Dr M came to visit today and we did a bit of an adventure on wheels around the beautiful grounds. She assures me she's a trained wheelchair driver!!
Sunday
And now I'm waiting for visitors - hurrah! 2 wonderful friends from where we used to live and one of their delightful daughters. They arrived with an armful of cards from friends and themselves, along with presents. I have to admit to not being able to read the cards until later as one glance and I was quite choked! Mr Bad Fairy was able to get here too and meet them for the first time which was lovely. Despite living so close originally we never managed it previously, they're now about an hour's drive away from where we live. Anyway it was wonderful and I can't thank them enough for making the effort.
I'm in a local Sue Ryder Hospice. Considering my severe dislike of hospitals this is out of this world.
I have a room to myself, staff who are so cheerful, considerate and just downright lovely!! The chef is brilliant and tempted me to eat again, all fresh and home cooked. I think I'd be perfectly happy to end my days here!
On the treatment side, I can eat, I haven't slept so well for ages, much less pain, (less grumpy!!!) and and and.... haven't been sick for 5 days (Yippee!!).
My legs haven't changed but then my sodium isn't improving quickly! But - at least it's going in the right direction. My super duper friend Dr M came to visit today and we did a bit of an adventure on wheels around the beautiful grounds. She assures me she's a trained wheelchair driver!!
Sunday
And now I'm waiting for visitors - hurrah! 2 wonderful friends from where we used to live and one of their delightful daughters. They arrived with an armful of cards from friends and themselves, along with presents. I have to admit to not being able to read the cards until later as one glance and I was quite choked! Mr Bad Fairy was able to get here too and meet them for the first time which was lovely. Despite living so close originally we never managed it previously, they're now about an hour's drive away from where we live. Anyway it was wonderful and I can't thank them enough for making the effort.
Wednesday 8 September 2010
A brave Bad Fairy......
…..this time I didn’t run away!
I did it! I went to the hospital, stayed in and had the stomach drain done. It has helped and I do feel a bit more comfortable…..but not sure I’d do it again unless entirely necessary. As revenge my body retaliated and I now have water balloons for legs! Oh and, after coming home on Friday, I came down with a lovely tummy bug. Another reason to avoid hospitals where possible.
It’s now Wednesday and despite feeling absolutely shattered I do feel like I’m living on the same planet as other people again which can’t be a bad thing.
After my tummy settled down I also started yet another new chemotherapy. This time we’re trying Capacitabine. This one is a two weeks on tablets and one week off. Dr Socks has started me on a 50% dose in the hope he doesn’t have to suffer my wrath for overdosing me! I’ve no idea how it’s working yet, I don’t actually feel any different. Time will tell I suppose.
In between all of this it’s been “back to school” time too. The Junior Bad Fairies both enjoy school so it’s not too much of a difficult time. Other than the usual spending money like water on uniforms and shoes. Master Bad Fairy came home yesterday, chuffed as a little monkey. He’s been voted onto the School Council by his classmates and couldn’t stop grinning.
Well that’s it for this update, it’s getting a bit tedious all of this medical stuff don’t you think? I shall make a concerted effort to inject a few “off topic” posts over the coming weeks to brighten things up again!
I did it! I went to the hospital, stayed in and had the stomach drain done. It has helped and I do feel a bit more comfortable…..but not sure I’d do it again unless entirely necessary. As revenge my body retaliated and I now have water balloons for legs! Oh and, after coming home on Friday, I came down with a lovely tummy bug. Another reason to avoid hospitals where possible.
It’s now Wednesday and despite feeling absolutely shattered I do feel like I’m living on the same planet as other people again which can’t be a bad thing.
After my tummy settled down I also started yet another new chemotherapy. This time we’re trying Capacitabine. This one is a two weeks on tablets and one week off. Dr Socks has started me on a 50% dose in the hope he doesn’t have to suffer my wrath for overdosing me! I’ve no idea how it’s working yet, I don’t actually feel any different. Time will tell I suppose.
In between all of this it’s been “back to school” time too. The Junior Bad Fairies both enjoy school so it’s not too much of a difficult time. Other than the usual spending money like water on uniforms and shoes. Master Bad Fairy came home yesterday, chuffed as a little monkey. He’s been voted onto the School Council by his classmates and couldn’t stop grinning.
Well that’s it for this update, it’s getting a bit tedious all of this medical stuff don’t you think? I shall make a concerted effort to inject a few “off topic” posts over the coming weeks to brighten things up again!
Sunday 22 August 2010
Ashamed to say...........
….I ran away!
I’ve developed a real dislike for hospitals. I can do the out-patient stuff no problem, lots of people to chat to and generally people who are either only a little bit poorly or dealing with their poorliness quite well. It’s the in-patient stuff that makes the hairs (the sparse few) on the back of my neck stand on end.
Until this cancer malarky I hadn’t had much experiences of hospitals except that Master Bad Fairy was born in hospital. Such a delightful experience that proved to be that Miss Bad Fairy was born at home!
Last Thursday I was admitted for a planned procedure. I need a drain in my abdomen…the build up of fluid makes it look like I’m expecting triplets at least. Anyway, the plan was to go in on Thursday, have an ultrasound, fit the drain and then home on Friday. Can’t say I was looking forward to it but it needs to be done so with gritted teeth off we set. Unbelievably I was admitted and allocated the same bed as the one I had during my “visit” in June when I was neutropenic and had the hugely manky mouth. That set the first hairs bristling.
The ultrasound went ahead with much muttering from the radiographer. The idea of the ultrasound is that the radiographer picks the safest place for a doctor to stick a needle in without hitting anything vital….she marks the spot with a big X. Sadly there was no safe spot. The procedure will need to be done whilst the doctor can see the scan. The solution, stay in an extra few nights until this can be organised or go home and come back at a later date, probably in more discomfort and definitely with the equivalent of quads not triplets. Hairs bristling like no-ones business I legged it home!
Now I know most people will think that’s not the most sensible option, especially if you know me and know that I don’t get easily spooked so let me explain.
It all stems from my “visit” in June. I know I was ill and needed to be there and I’m grateful to all the staff for sorting me out and getting me back on my feet. My newly found dislike of hospital is nothing to do with the staff or the care they give, it’s simply down to the other patients. That sounds really callous doesn’t it? They can’t help being there either. But let me tell you, it was awful.
It’s a six bed, single sex oncology ward. One woman did nothing but whinge in one of those pathetic helpless little girlie voices, “I’m neutropenic, who made this sandwich, I have to be careful you know”, and in the next breath whinging that her takeaway Indian meal she’d had brought in was leaking sauce all over the floor. (It went on!). Another lady lay in her bed, I suspect close to the end of her life. Whether she was aware of much going on around her I don’t know but I’m sure her family were. A third lady spent her time talking, quite loudly, on her phone telling the world how the staff were with-holding morphine from her and then making racist comments about one of the nurses. There was also mention of sweet jars filled with pills being knocked over by cats and GPs confiscating the lot! The fourth lady sadly had the start of dementia to deal with along with her other ailments. She slept for much of the day but came to life at visiting time and continued through the night. She had conversations with people who weren’t there, getting cross because they weren’t doing what she asked. One night I found her next to my bed (she was in the furthest bed from me!). Apparently I had a hidden stash of chocolate and alcohol and she wanted some. I tried to carefully disentagle her zimmer frame and feet from my drip lines and guide her back to bed but had to use the “call” button to get the night nurse to come and help out. The next night she needed a wee and shuffled to the middle of the ward and did what she had to do. Again I had to get up and go and find the night nurse, fearing that she’d slip and really hurt herself.
The fifth lady was in the bed next to me. She was elderly and obviously very poorly. She still had a smile on her face and tried so hard to not inconvenience the nurses. I had no option but to lie in my bed and listen to the medical team trying to clear her lungs to help ease her discomfort and perform various other procedures to help her last hours or days be more comfortable. No option but to overhear the conversations her family had around her bedside, remembering that they had to speak loud enough to be heard above the shouting into telephones on the other side of the room. Lady number five died.
So now you know, that’s why I ran away. Cowardly? Maybe. Preserving my sanity? Definitely.
I’ve developed a real dislike for hospitals. I can do the out-patient stuff no problem, lots of people to chat to and generally people who are either only a little bit poorly or dealing with their poorliness quite well. It’s the in-patient stuff that makes the hairs (the sparse few) on the back of my neck stand on end.
Until this cancer malarky I hadn’t had much experiences of hospitals except that Master Bad Fairy was born in hospital. Such a delightful experience that proved to be that Miss Bad Fairy was born at home!
Last Thursday I was admitted for a planned procedure. I need a drain in my abdomen…the build up of fluid makes it look like I’m expecting triplets at least. Anyway, the plan was to go in on Thursday, have an ultrasound, fit the drain and then home on Friday. Can’t say I was looking forward to it but it needs to be done so with gritted teeth off we set. Unbelievably I was admitted and allocated the same bed as the one I had during my “visit” in June when I was neutropenic and had the hugely manky mouth. That set the first hairs bristling.
The ultrasound went ahead with much muttering from the radiographer. The idea of the ultrasound is that the radiographer picks the safest place for a doctor to stick a needle in without hitting anything vital….she marks the spot with a big X. Sadly there was no safe spot. The procedure will need to be done whilst the doctor can see the scan. The solution, stay in an extra few nights until this can be organised or go home and come back at a later date, probably in more discomfort and definitely with the equivalent of quads not triplets. Hairs bristling like no-ones business I legged it home!
Now I know most people will think that’s not the most sensible option, especially if you know me and know that I don’t get easily spooked so let me explain.
It all stems from my “visit” in June. I know I was ill and needed to be there and I’m grateful to all the staff for sorting me out and getting me back on my feet. My newly found dislike of hospital is nothing to do with the staff or the care they give, it’s simply down to the other patients. That sounds really callous doesn’t it? They can’t help being there either. But let me tell you, it was awful.
It’s a six bed, single sex oncology ward. One woman did nothing but whinge in one of those pathetic helpless little girlie voices, “I’m neutropenic, who made this sandwich, I have to be careful you know”, and in the next breath whinging that her takeaway Indian meal she’d had brought in was leaking sauce all over the floor. (It went on!). Another lady lay in her bed, I suspect close to the end of her life. Whether she was aware of much going on around her I don’t know but I’m sure her family were. A third lady spent her time talking, quite loudly, on her phone telling the world how the staff were with-holding morphine from her and then making racist comments about one of the nurses. There was also mention of sweet jars filled with pills being knocked over by cats and GPs confiscating the lot! The fourth lady sadly had the start of dementia to deal with along with her other ailments. She slept for much of the day but came to life at visiting time and continued through the night. She had conversations with people who weren’t there, getting cross because they weren’t doing what she asked. One night I found her next to my bed (she was in the furthest bed from me!). Apparently I had a hidden stash of chocolate and alcohol and she wanted some. I tried to carefully disentagle her zimmer frame and feet from my drip lines and guide her back to bed but had to use the “call” button to get the night nurse to come and help out. The next night she needed a wee and shuffled to the middle of the ward and did what she had to do. Again I had to get up and go and find the night nurse, fearing that she’d slip and really hurt herself.
The fifth lady was in the bed next to me. She was elderly and obviously very poorly. She still had a smile on her face and tried so hard to not inconvenience the nurses. I had no option but to lie in my bed and listen to the medical team trying to clear her lungs to help ease her discomfort and perform various other procedures to help her last hours or days be more comfortable. No option but to overhear the conversations her family had around her bedside, remembering that they had to speak loud enough to be heard above the shouting into telephones on the other side of the room. Lady number five died.
So now you know, that’s why I ran away. Cowardly? Maybe. Preserving my sanity? Definitely.
Friday 13 August 2010
Busy days and.....
....lumps ‘n’ bumps!
I’m cream crackered! Pleasantly cream crackered it has to be said.
Yesterday was a busy day. We took the children to watch the Severn Bore. It wasn’t the most spectacular one I’ve seen, it was a three star version (the best being a five star). For their first one they were suitably impressed with the power of nature! The wave was big enough for the surfers brave enough to dodge the water propelled tree trunks to surf for a while, although I don’t suppose anyone broke any records. The bore is one of those natural events which is quite breath-taking to witness, the natural power of the tide in a quickly narrowing river can only reinforce any respect you have of water. Personally I wouldn’t set foot in the river, one it’s cold, two it’s very powerful and three it’s wet!!
Then it was off for chemo. All went smoothly and it was back home ready for the Juniors bed time.
Not that they stayed there for too long. Mr Bad Fairy had promised to wake them up to watch the meteor shower! So at midnight Master Bad Fairy sat ooohing and ahhing accompanied by constant “Wow did you see that?” and chatter chatter chatter. Miss Bad Fairy sat on my knee with three coats on her and a hot water bottle and couldn’t resist the offer of a second tucking into bed for the evening!
And now the lumps and bumps bit. Slight exaggeration, it’s only one lump or even bump. Right at the bottom of my breast bone. Dr Socks says it’s a “tumour deposit”, in other words this grotty disease has now shown it’s presence in my skin. Hrmph! It started as a little bump, possibly a bite or spot so I didn’t think much of it. It’s now about a centimetre in diameter and is looking very attractive….not. Luckily it hasn’t broken through the skin so it doesn’t need dressing or fussing over. Dr Socks thinks it could be a useful indicator as to whether this chemo is being effective but has said that if it becomes troublesome or painful he’ll zap it with radiotherapy. The only troublesome bit, if you can call it that, is that I’m now having to do an impression of a free spirited 70’s hippy chic or maybe it’s a radical feminist. Bras have had to be abandoned as the band rests on the lump and I’m not risking damaging or irritating the skin any more than necessary. But then, as I’m not in the habit of hoisting my t-shirt over me head in public places I don’t suppose it will have a huge impact on my lifestyle!!
I’m cream crackered! Pleasantly cream crackered it has to be said.
Yesterday was a busy day. We took the children to watch the Severn Bore. It wasn’t the most spectacular one I’ve seen, it was a three star version (the best being a five star). For their first one they were suitably impressed with the power of nature! The wave was big enough for the surfers brave enough to dodge the water propelled tree trunks to surf for a while, although I don’t suppose anyone broke any records. The bore is one of those natural events which is quite breath-taking to witness, the natural power of the tide in a quickly narrowing river can only reinforce any respect you have of water. Personally I wouldn’t set foot in the river, one it’s cold, two it’s very powerful and three it’s wet!!
Then it was off for chemo. All went smoothly and it was back home ready for the Juniors bed time.
Not that they stayed there for too long. Mr Bad Fairy had promised to wake them up to watch the meteor shower! So at midnight Master Bad Fairy sat ooohing and ahhing accompanied by constant “Wow did you see that?” and chatter chatter chatter. Miss Bad Fairy sat on my knee with three coats on her and a hot water bottle and couldn’t resist the offer of a second tucking into bed for the evening!
And now the lumps and bumps bit. Slight exaggeration, it’s only one lump or even bump. Right at the bottom of my breast bone. Dr Socks says it’s a “tumour deposit”, in other words this grotty disease has now shown it’s presence in my skin. Hrmph! It started as a little bump, possibly a bite or spot so I didn’t think much of it. It’s now about a centimetre in diameter and is looking very attractive….not. Luckily it hasn’t broken through the skin so it doesn’t need dressing or fussing over. Dr Socks thinks it could be a useful indicator as to whether this chemo is being effective but has said that if it becomes troublesome or painful he’ll zap it with radiotherapy. The only troublesome bit, if you can call it that, is that I’m now having to do an impression of a free spirited 70’s hippy chic or maybe it’s a radical feminist. Bras have had to be abandoned as the band rests on the lump and I’m not risking damaging or irritating the skin any more than necessary. But then, as I’m not in the habit of hoisting my t-shirt over me head in public places I don’t suppose it will have a huge impact on my lifestyle!!
Tuesday 10 August 2010
The wanderer.....
….returns!
Dr Socks is back! He didn’t go to Cromer in a caravan, neither did he sail between exotic tropical islands and sadly I don’t think he bought himself any commemorative holiday socks…but he’s back.
I was quite surprised at how pleased I was to see him. Not in a weak at the knees in awe of the great doctor way, I don’t do that sort of thing. Besides, when you’ve been told of the entertaining antics of the off-duty version it’d be hard to be in awe and keep a straight face!! These unexpected feelings were probably because I’d been feeling more unsettled than I realised what with the last few weeks of ups and downs, the stay in hospital, the manky mouth and delays in treatment etc. Strange really as I have every faith in his team. Dr Tink’ is brilliant and I trust her judgement, sometimes I suppose it’s just nice to hear things from the Big Cheese. (No dubious connections between socks and cheese please!!)
Anyway, now I feel happier, more confident and reassured. It’s also written in black and white on my notes that I’m not ready to be consigned to the bin yet! The plan of attack is to have another dose of Taxotere this week and hope that my improved liver function will “rinse” it out before it attacks my mouth too severely but not before it’s done its job. If all goes to plan then I can continue on a weekly dose. If it doesn’t then next out of the chemo cupboard will probably be Gemcitabine.
Home we headed and as a reward for being so patient I spent some time teaching the Junior Bad Fairies the fine arts of playing poker. Okay, not poker, I never was any good at poker … I have to have a written list of what beats what because I can never remember. As for having a ’poker face’, no chance! We played Rummy and Trumps, very exciting I know but when you’re eight and nine it makes no difference what you play as long as you have a chance of beating Mum. Sadly they did and no I didn’t sulk, but they did have to do some bedroom tidying!
Dr Socks is back! He didn’t go to Cromer in a caravan, neither did he sail between exotic tropical islands and sadly I don’t think he bought himself any commemorative holiday socks…but he’s back.
I was quite surprised at how pleased I was to see him. Not in a weak at the knees in awe of the great doctor way, I don’t do that sort of thing. Besides, when you’ve been told of the entertaining antics of the off-duty version it’d be hard to be in awe and keep a straight face!! These unexpected feelings were probably because I’d been feeling more unsettled than I realised what with the last few weeks of ups and downs, the stay in hospital, the manky mouth and delays in treatment etc. Strange really as I have every faith in his team. Dr Tink’ is brilliant and I trust her judgement, sometimes I suppose it’s just nice to hear things from the Big Cheese. (No dubious connections between socks and cheese please!!)
Anyway, now I feel happier, more confident and reassured. It’s also written in black and white on my notes that I’m not ready to be consigned to the bin yet! The plan of attack is to have another dose of Taxotere this week and hope that my improved liver function will “rinse” it out before it attacks my mouth too severely but not before it’s done its job. If all goes to plan then I can continue on a weekly dose. If it doesn’t then next out of the chemo cupboard will probably be Gemcitabine.
Home we headed and as a reward for being so patient I spent some time teaching the Junior Bad Fairies the fine arts of playing poker. Okay, not poker, I never was any good at poker … I have to have a written list of what beats what because I can never remember. As for having a ’poker face’, no chance! We played Rummy and Trumps, very exciting I know but when you’re eight and nine it makes no difference what you play as long as you have a chance of beating Mum. Sadly they did and no I didn’t sulk, but they did have to do some bedroom tidying!
Tuesday 3 August 2010
Woe is me.....
…..but don’t despair!
It was the weekly jaunt to see the consultant today to get the ok for chemo this week and woe is me ….the little toe-rag is on holiday! Fancy that, holidays in August tut tut, how dare he. Mr Bad Fairy muttered under his breath about Dr Socks probably being on a yacht sailing to and fro between exotic islands. I was thinking more caravan at Cromer maybe?
After a mere two hour wait and numerous cups of tea I was summoned in to see the covering doctor. A quick chat and a glance down my throat was all it needed for it to be confirmed that the thrush birds are still in residence. Not as many but still lingering. So no chemo for this week. My liver function is relatively stable despite having last week’s dose cancelled so it wasn’t too hard to agree with the doctor that the best thing was to wait another week, speak with Dr Socks next Tuesday and see where we go from there (the Bahamas would be nice but I don‘t think the NHS would pay for that as a therapy!). The decision was helped along by my comment about not wanting to be admitted to hospital again and the doctor’s return comment that chemo can kill!
I don’t know how effective the limited amount of this chemo I’ve had has been on the cloudy tumours but it’s done the deed with my hair and nails. Each eye has about a dozen lashes left (yes I did try, unsuccessfully, to count them without poking myself in the eye). I do wonder why it is that even the bottom lashes when they fall manage to defy gravity and fall up into my eye. Why is that? My eyebrows are also doing their own thing. I could start yet another new trend here. For some weird reason I’ve lost a horizontal stripe right through the middle of one eyebrow. I now look like I have “go faster” stripes above my right eye! As for nails, let’s just not go there …. Mr Bad Fairy has been told he is the official scratcher and will have to scratch any itchy bits for me!!
It was the weekly jaunt to see the consultant today to get the ok for chemo this week and woe is me ….the little toe-rag is on holiday! Fancy that, holidays in August tut tut, how dare he. Mr Bad Fairy muttered under his breath about Dr Socks probably being on a yacht sailing to and fro between exotic islands. I was thinking more caravan at Cromer maybe?
After a mere two hour wait and numerous cups of tea I was summoned in to see the covering doctor. A quick chat and a glance down my throat was all it needed for it to be confirmed that the thrush birds are still in residence. Not as many but still lingering. So no chemo for this week. My liver function is relatively stable despite having last week’s dose cancelled so it wasn’t too hard to agree with the doctor that the best thing was to wait another week, speak with Dr Socks next Tuesday and see where we go from there (the Bahamas would be nice but I don‘t think the NHS would pay for that as a therapy!). The decision was helped along by my comment about not wanting to be admitted to hospital again and the doctor’s return comment that chemo can kill!
I don’t know how effective the limited amount of this chemo I’ve had has been on the cloudy tumours but it’s done the deed with my hair and nails. Each eye has about a dozen lashes left (yes I did try, unsuccessfully, to count them without poking myself in the eye). I do wonder why it is that even the bottom lashes when they fall manage to defy gravity and fall up into my eye. Why is that? My eyebrows are also doing their own thing. I could start yet another new trend here. For some weird reason I’ve lost a horizontal stripe right through the middle of one eyebrow. I now look like I have “go faster” stripes above my right eye! As for nails, let’s just not go there …. Mr Bad Fairy has been told he is the official scratcher and will have to scratch any itchy bits for me!!
Friday 23 July 2010
Who needs sleep?.....
…..Me, I do and lots of it!
I know, you know and lots of other people know that it’s not advisable to take steroids after about 6pm. My chemo appointment yesterday was running a bit late and it was about 5.45pm when my pre-chemo steroids were sent firing through my veins.
Oh what a night! It was quite obvious that it wasn’t going to be an early one, steroids make me a bit hyper. I leave the chemo suite ready to dance around the car park … the reason why Mr Bad Fairy won’t let me drive myself home! Quite sensible really, goodness knows where I’d end up.
The hours ticked by, chattering about complete nonsense to Mr BF until he couldn’t take it anymore and had to go to bed. A few more hours on the computer …..chatting. The hours ticked past and my little brain was whizzing around, no sign of letting up.
4am arrived and I decided I really should try to sleep. Off I went to bed, little brain still whizzing. Do I want a cup of tea? Why does Tabitha the cat purr so loudly? Can I feel the chemo doing some Kung Fu fighting with those cloudy tumours? Why is it getting light outside so early? Wish Bertie hadn’t scoffed my cake, I could just nibble a bit now. I wonder if the person who loses a shoe in the middle of the road realises they’ve lost a shoe? Surely that’s something you’d notice? Flap the quilt about a bit, rearranged so it’s just right. Punch the pillows into submission, flip them over to get the benefit of the cooler side.
Right, time for the tried and tested relaxation techniques. Flex and relax each muscle individually starting at the toes, this usually works by the time I get to my knees. Picture a tranquil scene complete with winding paths and a waterfall cascading into a crystal clear pool. Repeating the word ‘relax’ or ‘sleep’ or strangely enough ‘black’ over and over and over. And all of the time the clock keeps ticking.
Failed miserably. The clock ticked and reached 5.30am. Definitely need that cup of tea now. The twittering, tweeting and occasional screech of the dawn chorus outside the bedroom window had reached a volume that was becoming irritating! I swear I could hear the rabbits bouncing across the lawn looking for that particular lush bit of grass that would make the perfect breakfast feast.
Ah well …..who needs sleep? Me, I do! Maybe I should have used up that energy dancing across the car park?
Night night, sweet dreams and mind the bed bugs don’t bite!
I know, you know and lots of other people know that it’s not advisable to take steroids after about 6pm. My chemo appointment yesterday was running a bit late and it was about 5.45pm when my pre-chemo steroids were sent firing through my veins.
Oh what a night! It was quite obvious that it wasn’t going to be an early one, steroids make me a bit hyper. I leave the chemo suite ready to dance around the car park … the reason why Mr Bad Fairy won’t let me drive myself home! Quite sensible really, goodness knows where I’d end up.
The hours ticked by, chattering about complete nonsense to Mr BF until he couldn’t take it anymore and had to go to bed. A few more hours on the computer …..chatting. The hours ticked past and my little brain was whizzing around, no sign of letting up.
4am arrived and I decided I really should try to sleep. Off I went to bed, little brain still whizzing. Do I want a cup of tea? Why does Tabitha the cat purr so loudly? Can I feel the chemo doing some Kung Fu fighting with those cloudy tumours? Why is it getting light outside so early? Wish Bertie hadn’t scoffed my cake, I could just nibble a bit now. I wonder if the person who loses a shoe in the middle of the road realises they’ve lost a shoe? Surely that’s something you’d notice? Flap the quilt about a bit, rearranged so it’s just right. Punch the pillows into submission, flip them over to get the benefit of the cooler side.
Right, time for the tried and tested relaxation techniques. Flex and relax each muscle individually starting at the toes, this usually works by the time I get to my knees. Picture a tranquil scene complete with winding paths and a waterfall cascading into a crystal clear pool. Repeating the word ‘relax’ or ‘sleep’ or strangely enough ‘black’ over and over and over. And all of the time the clock keeps ticking.
Failed miserably. The clock ticked and reached 5.30am. Definitely need that cup of tea now. The twittering, tweeting and occasional screech of the dawn chorus outside the bedroom window had reached a volume that was becoming irritating! I swear I could hear the rabbits bouncing across the lawn looking for that particular lush bit of grass that would make the perfect breakfast feast.
Ah well …..who needs sleep? Me, I do! Maybe I should have used up that energy dancing across the car park?
Night night, sweet dreams and mind the bed bugs don’t bite!
Thursday 22 July 2010
As if to prove a point.....
…. Bertie scoffed my cake last night.
It was a delicious cake, or at least the bits I’d eaten were. A spiced Dorset apple cake (or a Dorset spiced apple cake maybe?) made by my lovely, slightly loopy, terribly gorgeous (please note any single, handsome gentlemen that may be reading), friend Pippa.
Bertie is confined to the dog naughty corner for the next week and I’ve ordered some padlocks for the kitchen cupboards!
It was a delicious cake, or at least the bits I’d eaten were. A spiced Dorset apple cake (or a Dorset spiced apple cake maybe?) made by my lovely, slightly loopy, terribly gorgeous (please note any single, handsome gentlemen that may be reading), friend Pippa.
Bertie is confined to the dog naughty corner for the next week and I’ve ordered some padlocks for the kitchen cupboards!
Monday 19 July 2010
Animals do the....
…….naughtiest things!
Who said pets are good for you? Therapeutic? Reduce stress levels? Excuse me whilst I splutter into my cup of tea.
The Bad Fairy household is a bit of a zoo. Not a proper zoo, we don’t have a giraffe, a hippopotamus nor an elephant. (Although the jury is out on the elephant after a rather large hole appeared in the bottom field…..suspicions have been voiced that a rogue elephant may be trying to break in!)
We did have some orphaned lambs that grew up to be big sheep. They were re-homed after I had to retrieve one from next door, he was mooching around the living room watching the television. Presumably he was a bit put out at having to miss the Jeremy Kyle Show because after this incident the only way I could walk through the field without being butted was if I held him in a head lock!
Chickens are much easier. Except Milly. Milly thinks she’s a dog. She can frequently be found, head tucked under her wing, having a nap under the kitchen table. After being evicted she sulks and stares longingly through the window waiting for the next chance to sneak in. She comes running (you’ve never seen a chicken sprint so fast!) when she hears the dog food being served up and follows the dogs around to make sure she isn’t missing out on anything.
I suppose that brings us nicely to dogs. There are three Bad Fairy dogs, all Labradors. Anden (needless to say there’s a story behind the name) and Penny are both nine. Very loyal, very gentle and generally very good. They have had their moments but have mellowed like a fine wine. And then there’s Bertie.
Bertie (named because I thought he had hints of Bertie Wooster about him) is naughty. If there was a naughty corner for dogs Bertie would live in it. He just can’t help himself. He lulls you into a false sense of security by being a model dog for a few days, gazing at you with those soppy big brown eyes, resting his head in your lap and then it all gets too much for him. Nothing is safe. Bertie can open the pedal bin and will cheerfully retrieve any goodies he can find there. He’s a super-swift worktop surfer and helps himself to anything that takes his fancy, loaves of bread, cake, table mats, a bottle of Ribena and yes that last one did make a bit of a mess! Worse than all of that he dared to steal my Jaffa Cakes, slobbered on them all then ate the cardboard box. Therapeutic? Yeah right!
Anyone want a dog?
Who said pets are good for you? Therapeutic? Reduce stress levels? Excuse me whilst I splutter into my cup of tea.
The Bad Fairy household is a bit of a zoo. Not a proper zoo, we don’t have a giraffe, a hippopotamus nor an elephant. (Although the jury is out on the elephant after a rather large hole appeared in the bottom field…..suspicions have been voiced that a rogue elephant may be trying to break in!)
We did have some orphaned lambs that grew up to be big sheep. They were re-homed after I had to retrieve one from next door, he was mooching around the living room watching the television. Presumably he was a bit put out at having to miss the Jeremy Kyle Show because after this incident the only way I could walk through the field without being butted was if I held him in a head lock!
Chickens are much easier. Except Milly. Milly thinks she’s a dog. She can frequently be found, head tucked under her wing, having a nap under the kitchen table. After being evicted she sulks and stares longingly through the window waiting for the next chance to sneak in. She comes running (you’ve never seen a chicken sprint so fast!) when she hears the dog food being served up and follows the dogs around to make sure she isn’t missing out on anything.
I suppose that brings us nicely to dogs. There are three Bad Fairy dogs, all Labradors. Anden (needless to say there’s a story behind the name) and Penny are both nine. Very loyal, very gentle and generally very good. They have had their moments but have mellowed like a fine wine. And then there’s Bertie.
Bertie (named because I thought he had hints of Bertie Wooster about him) is naughty. If there was a naughty corner for dogs Bertie would live in it. He just can’t help himself. He lulls you into a false sense of security by being a model dog for a few days, gazing at you with those soppy big brown eyes, resting his head in your lap and then it all gets too much for him. Nothing is safe. Bertie can open the pedal bin and will cheerfully retrieve any goodies he can find there. He’s a super-swift worktop surfer and helps himself to anything that takes his fancy, loaves of bread, cake, table mats, a bottle of Ribena and yes that last one did make a bit of a mess! Worse than all of that he dared to steal my Jaffa Cakes, slobbered on them all then ate the cardboard box. Therapeutic? Yeah right!
Anyone want a dog?
Friday 16 July 2010
Bill Oddie....
…..would be proud of me.
My mouth and throat are a sanctuary it seems for thrush. Ok, so maybe Mr Oddie wouldn’t be that impressed as it’s not the feathered variety of thrush but you can’t please all of the people all of the time! I actually thought I was doing quite well clearing them out of the nesting spot at the back of my throat but Dr Tinkerbell said otherwise and Tuesday’s chemo was postponed.
Did you notice that it was Dr Tink’ and not Dr Socks I saw? I fear Dr Socks is avoiding me. Probably because I told him he didn’t look guilty enough after putting me in hospital the other week. Or maybe because I suggested he might be trying to finish me off ……can’t think why he’d want to do that, a model patient such as myself!
Short one today, I have to go and create a white rabbit costume for tomorrow. Miss Bad Fairy is going to an Alice in Wonderland birthday party. Much easier if it was a ‘Wearing mum’s wellies’ party!!
My mouth and throat are a sanctuary it seems for thrush. Ok, so maybe Mr Oddie wouldn’t be that impressed as it’s not the feathered variety of thrush but you can’t please all of the people all of the time! I actually thought I was doing quite well clearing them out of the nesting spot at the back of my throat but Dr Tinkerbell said otherwise and Tuesday’s chemo was postponed.
Did you notice that it was Dr Tink’ and not Dr Socks I saw? I fear Dr Socks is avoiding me. Probably because I told him he didn’t look guilty enough after putting me in hospital the other week. Or maybe because I suggested he might be trying to finish me off ……can’t think why he’d want to do that, a model patient such as myself!
Short one today, I have to go and create a white rabbit costume for tomorrow. Miss Bad Fairy is going to an Alice in Wonderland birthday party. Much easier if it was a ‘Wearing mum’s wellies’ party!!
Thursday 8 July 2010
"I've looked at clouds....
….from both sides now”
Clouds …why clouds? On Tuesday I had my weekly consultant consultation and we discussed my latest ct scan images. Clouds, that’s what I have!! I can’t remember if I said in an earlier post but I’ve developed an allergy to the IV contrast they use to enhance the images of scans so now mine are a bit blurry to say the least. Rather than defined ‘blobs’ on my liver I now have clouds. On a steroid sleepless high last night I spent ages picturing my clouds. Are they white fluffy cotton wool ones, big black thunderous ones or somewhere in between? After much deliberation I settled on crisp grey clouds with fluffy edges, a hint of showers but the potential for the sun to break through.
The outcome of the consultation, other than discovering clouds, was that I had more chemo yesterday. Because my last ‘weekly’ dose put me in hospital for a week and then took a further three to four weeks to be cleared from my system by the unclouded bits of my liver, this weeks dose of Docetaxol/Taxotere was reduced by 50%. Hopefully this will do the good stuff it needs to do and allow me to continue with the weekly cycles. The best way of telling if it’s doing good seems to be how I’m feeling and how stable my liver function is …..scans will just show clouds, hopefully with the odd ray of sunshine peeking through.
You can’t have rainbows without a few clouds!!
Clouds …why clouds? On Tuesday I had my weekly consultant consultation and we discussed my latest ct scan images. Clouds, that’s what I have!! I can’t remember if I said in an earlier post but I’ve developed an allergy to the IV contrast they use to enhance the images of scans so now mine are a bit blurry to say the least. Rather than defined ‘blobs’ on my liver I now have clouds. On a steroid sleepless high last night I spent ages picturing my clouds. Are they white fluffy cotton wool ones, big black thunderous ones or somewhere in between? After much deliberation I settled on crisp grey clouds with fluffy edges, a hint of showers but the potential for the sun to break through.
The outcome of the consultation, other than discovering clouds, was that I had more chemo yesterday. Because my last ‘weekly’ dose put me in hospital for a week and then took a further three to four weeks to be cleared from my system by the unclouded bits of my liver, this weeks dose of Docetaxol/Taxotere was reduced by 50%. Hopefully this will do the good stuff it needs to do and allow me to continue with the weekly cycles. The best way of telling if it’s doing good seems to be how I’m feeling and how stable my liver function is …..scans will just show clouds, hopefully with the odd ray of sunshine peeking through.
You can’t have rainbows without a few clouds!!
Wednesday 30 June 2010
A celebration, an anniversary....
….or what?
A difficult one to decide. I think I’ll opt for the celebration simply because any excuse for a party seems good to me! So why a celebration? Believe it or not it’s a year ago since I was diagnosed with secondary breast cancer. A year which has flown past and seen a huge change in “normal” life for all in the Bad Fairy family. According to some a year which I was unlikely to see through ……as if I’m going to accept that, some people just don’t know me at all!! Like it or not here I am a whole year on and for those who are wondering I don’t intend to be painting any rainbows for a few more years yet! (And yes Mum, when I do eventually paint the rainbows I’ll remember to wear knickers!!)
Who knows what surprises the next year will hold?
Not me that’s for sure. Crystal balls and Bad Fairies don’t mix well …in fact anything breakable and Bad Fairies don’t really mix very well if I’m honest! I do know what’s planned for next week though. If my mouth has returned to normal then I will probably have another (smaller!) dose of Taxotere, preferably out of the bottle which says “No hospital admissions”. The reasoning behind this is that despite the last dose being so hideous it has stabilised my liver function. Difficult decision! If, for whatever reason, the Taxotere is a no go then next out of the box of tricks is likely to be Capecitabine. We’ll just have to wait and see how things go.
In the mean time there’s a party to organise …… sausage on a stick anyone?
A difficult one to decide. I think I’ll opt for the celebration simply because any excuse for a party seems good to me! So why a celebration? Believe it or not it’s a year ago since I was diagnosed with secondary breast cancer. A year which has flown past and seen a huge change in “normal” life for all in the Bad Fairy family. According to some a year which I was unlikely to see through ……as if I’m going to accept that, some people just don’t know me at all!! Like it or not here I am a whole year on and for those who are wondering I don’t intend to be painting any rainbows for a few more years yet! (And yes Mum, when I do eventually paint the rainbows I’ll remember to wear knickers!!)
Who knows what surprises the next year will hold?
Not me that’s for sure. Crystal balls and Bad Fairies don’t mix well …in fact anything breakable and Bad Fairies don’t really mix very well if I’m honest! I do know what’s planned for next week though. If my mouth has returned to normal then I will probably have another (smaller!) dose of Taxotere, preferably out of the bottle which says “No hospital admissions”. The reasoning behind this is that despite the last dose being so hideous it has stabilised my liver function. Difficult decision! If, for whatever reason, the Taxotere is a no go then next out of the box of tricks is likely to be Capecitabine. We’ll just have to wait and see how things go.
In the mean time there’s a party to organise …… sausage on a stick anyone?
Thursday 24 June 2010
A fortnight of.....
……fun and frolics!
OK, who forgot to pack the fun and frolics? I can do the odd funless day with no frolics but not two weeks worth thank you very much!
It all started (surprisingly enough) about two weeks ago. After a chat with Dr Socks we all agreed that the Red Devils needed to be sacked as they appear to have done what little good they are capable of. Next question, what to replace them with. The pin the tail on the donkey game came down with the tail pinned in Taxotere, again as a weekly chemo, possibly for ten weeks but we’d see how we go.
That same day (Dr Socks doesn’t hang around…..must’ve had “go faster" stripes on the socks that week!), I had my first dose of Taxotere. Seemed ok, no reactions, all good stuff.
Fast forward to that weekend and my mouth is revolting. Oral thrush, ulcers and tasting like the bottom of a monkey’s cage. Mr Bad Fairy says I can’t say that …I should say bird cage but I think monkey’s cage is far more descriptive!! Monday sees me sulking (in between sleeping) in hospital. Dehydrated, neutropenic and in need of five days of IV antibiotics. Big Hrmph! The worst part? Not the fact that I couldn’t eat or drink, no, the fact I couldn’t speak. A silent and huffy Bad Fairy is not a Bad Fairy you’d want to spend much time with!
Luckily for me, a few were brave enough to visit. Mr Bad Fairy did a brilliant job of managing to hold a conversation with me without me feeling like I wasn’t getting a word in, he knows how much that would have annoyed me! Fairy Godmother made a surprise visit too. She really shouldn’t have, not because it wasn’t lovely to see her but because she has so much stress and worry to deal with of her own at the moment. And the wayward purple Pippa called in on numerous occasions, raising a smile each and every time.
By Friday things were improving slowly. Still couldn’t eat but at least I could manage to sip drinks which saved being constantly pumped full of liquids! Also a squeak of a voice had returned. Dr Socks braved a visit. I think he’d been waiting until I could at least mutter again ….not entirely sure he could have coped with a barrage of hand signals and gestures!!
Saturday afternoon and I was finally released, with a bag full of pharmaceutical goodies. Now all I need is the last bits of my mouth to heal up and then I’m going to have the greasiest, squishiest, sloppiest take-away burger I can find!
OK, who forgot to pack the fun and frolics? I can do the odd funless day with no frolics but not two weeks worth thank you very much!
It all started (surprisingly enough) about two weeks ago. After a chat with Dr Socks we all agreed that the Red Devils needed to be sacked as they appear to have done what little good they are capable of. Next question, what to replace them with. The pin the tail on the donkey game came down with the tail pinned in Taxotere, again as a weekly chemo, possibly for ten weeks but we’d see how we go.
That same day (Dr Socks doesn’t hang around…..must’ve had “go faster" stripes on the socks that week!), I had my first dose of Taxotere. Seemed ok, no reactions, all good stuff.
Fast forward to that weekend and my mouth is revolting. Oral thrush, ulcers and tasting like the bottom of a monkey’s cage. Mr Bad Fairy says I can’t say that …I should say bird cage but I think monkey’s cage is far more descriptive!! Monday sees me sulking (in between sleeping) in hospital. Dehydrated, neutropenic and in need of five days of IV antibiotics. Big Hrmph! The worst part? Not the fact that I couldn’t eat or drink, no, the fact I couldn’t speak. A silent and huffy Bad Fairy is not a Bad Fairy you’d want to spend much time with!
Luckily for me, a few were brave enough to visit. Mr Bad Fairy did a brilliant job of managing to hold a conversation with me without me feeling like I wasn’t getting a word in, he knows how much that would have annoyed me! Fairy Godmother made a surprise visit too. She really shouldn’t have, not because it wasn’t lovely to see her but because she has so much stress and worry to deal with of her own at the moment. And the wayward purple Pippa called in on numerous occasions, raising a smile each and every time.
By Friday things were improving slowly. Still couldn’t eat but at least I could manage to sip drinks which saved being constantly pumped full of liquids! Also a squeak of a voice had returned. Dr Socks braved a visit. I think he’d been waiting until I could at least mutter again ….not entirely sure he could have coped with a barrage of hand signals and gestures!!
Saturday afternoon and I was finally released, with a bag full of pharmaceutical goodies. Now all I need is the last bits of my mouth to heal up and then I’m going to have the greasiest, squishiest, sloppiest take-away burger I can find!
Thursday 10 June 2010
Straight talking......
…..junior style.
Picture the scene, the Bad Fairy family trundling along in the car early on a Monday morning and the following conversation takes place.
Master BF, “Where’re we going? Oh, it’s the hospital. Why? It’s sooo boring!”
Me, “I have to have my weekly blood test so we won’t be here long.”
Master BF, “That’s no fun. It’s so sooooo boring.”
Miss BF, “ Don’t moan! It’s not fun for Mum either. She has to have blood tests so she can have her medicine. If she doesn’t have her medicine she’ll die because her liver won’t work and you don’t want that do you?”
Master BF (sheepishly!), “No.”
Miss BF (after a few moments pondering), “Mum, when you’re dead what will you be like?”
Me, “ ……..Smelly!”
Miss BF, “Hmmm, I don’t think you’ll be bad smelly, I think you’ll be good smelly like when you’ve had a shower.”
Not a tear shed, although I admit to a slight lump in the throat, and the conversation ended up discussing Egyptians and cats!!
I think that’s a good sign that the jumbled boxes are slowly being put in order again. Last week that same overheard conversation would have had me in pieces and certainly wouldn’t have received the same contribution from me.
Children, so accepting, so innocent and so utterly loveable and wonderful. All the more reason to do everything to prolong this adventure for as long as possible.
Picture the scene, the Bad Fairy family trundling along in the car early on a Monday morning and the following conversation takes place.
Master BF, “Where’re we going? Oh, it’s the hospital. Why? It’s sooo boring!”
Me, “I have to have my weekly blood test so we won’t be here long.”
Master BF, “That’s no fun. It’s so sooooo boring.”
Miss BF, “ Don’t moan! It’s not fun for Mum either. She has to have blood tests so she can have her medicine. If she doesn’t have her medicine she’ll die because her liver won’t work and you don’t want that do you?”
Master BF (sheepishly!), “No.”
Miss BF (after a few moments pondering), “Mum, when you’re dead what will you be like?”
Me, “ ……..Smelly!”
Miss BF, “Hmmm, I don’t think you’ll be bad smelly, I think you’ll be good smelly like when you’ve had a shower.”
Not a tear shed, although I admit to a slight lump in the throat, and the conversation ended up discussing Egyptians and cats!!
I think that’s a good sign that the jumbled boxes are slowly being put in order again. Last week that same overheard conversation would have had me in pieces and certainly wouldn’t have received the same contribution from me.
Children, so accepting, so innocent and so utterly loveable and wonderful. All the more reason to do everything to prolong this adventure for as long as possible.
Sunday 6 June 2010
Hard hats and.....
…..steel toecaps required!
AAAAAAARRRRRRRRRRRRRGGGGGGGGGGGGGHHHHH. Hmm, that feels a bit better.
Someone has upended the special storage boxes in my head. The ones that I file things away in until I’m ready to deal with them. I’ve gone back over the past few weeks and can’t recall doing any spectacular gymnastics or other twizzly stuff that might have inadvertently scattered their contents everywhere, so why have they all got muddled up?
It’s very frustrating. The boxes were doing a really good job of keeping my thoughts and feelings in their place and now I’ve got to start again putting it all away. Maybe I’ve overloaded some of them and they just burst? Actually, if I’m honest, I’ve probably got lazy and just been cramming things in, sitting on the lids in the hope that they’d hold together.
Now there’s no other option than to start the big clean up …. in reinforced boxes!
The Anger Box - anger at this stupid disease.
The Guilt Box - feelings of guilt because of how it affects everyone around me.
The Sadness Box - sadness at the shadows cancer casts over so many lives.
The Frustration Box - frustration with everything …when the mood takes me.
The Scared Box - this new life is scary.
On a brighter note, when the above boxes are sorted then I can indulge in dipping into the happier boxes. The memory box, the laughter box, the Mr Bad Fairy box, the Junior Bad Fairy box, the embarrassing moment box, the friends box and the giggle ‘til you cry box.
Wish me luck!
AAAAAAARRRRRRRRRRRRRGGGGGGGGGGGGGHHHHH. Hmm, that feels a bit better.
Someone has upended the special storage boxes in my head. The ones that I file things away in until I’m ready to deal with them. I’ve gone back over the past few weeks and can’t recall doing any spectacular gymnastics or other twizzly stuff that might have inadvertently scattered their contents everywhere, so why have they all got muddled up?
It’s very frustrating. The boxes were doing a really good job of keeping my thoughts and feelings in their place and now I’ve got to start again putting it all away. Maybe I’ve overloaded some of them and they just burst? Actually, if I’m honest, I’ve probably got lazy and just been cramming things in, sitting on the lids in the hope that they’d hold together.
Now there’s no other option than to start the big clean up …. in reinforced boxes!
The Anger Box - anger at this stupid disease.
The Guilt Box - feelings of guilt because of how it affects everyone around me.
The Sadness Box - sadness at the shadows cancer casts over so many lives.
The Frustration Box - frustration with everything …when the mood takes me.
The Scared Box - this new life is scary.
On a brighter note, when the above boxes are sorted then I can indulge in dipping into the happier boxes. The memory box, the laughter box, the Mr Bad Fairy box, the Junior Bad Fairy box, the embarrassing moment box, the friends box and the giggle ‘til you cry box.
Wish me luck!
Wednesday 26 May 2010
Question time......
…..ponderings, Bad Fairy style.
Why does it seem that only my white hairs are falling out with this chemo and not the dark ones? My yellow Labrador seems to “melt” more than the black two do, maybe there‘s an explanation in there somewhere! Or maybe there are just more white ones to fall out in the first place.
Why are young children so accepting and resilient when life throws them some tough stuff to deal with?
Why do I manage to set the smoke detector off whenever I make toast?
Why is it that I go from feeling guilty to emotional in thirty seconds? An example, having my pre chemo blood test done on Monday, I told the phlebotomist I felt guilty jumping the queue (after dodging daggers in the waiting room). She pointed out that she didn’t think there was one person in the waiting room who, knowing my circumstances, would offer to change places with me and I wasn’t to feel at all guilty. I hadn’t thought about it like that before but I think she had a point.
Why do I now have freckles?
Why do people use the words fight, battle and lost when they talk about cancer? I‘m not saying these are the wrong words, after all we all have to use language which inspires us to keep going. Fighting and battling to me means that there is a winner and loser. One day I will lose because I started with an uneven playing field, I don’t mind being the underdog, but this is more like being the underdog’s underdog! It’s a bit like a knight going to battle against a dragon and he doesn’t get issued with a horse or a sword, slightly unfair and doesn’t really give him much of a chance does it? Anyway despite all of that I’m not a loser (and never will be where cancer is concerned)… so to me this is an adventure. I’m having new experiences, new challenges, making new friends and seeing the world through different eyes ….and you can’t lose on an adventure!
Why do I always ask questions?!
Why does it seem that only my white hairs are falling out with this chemo and not the dark ones? My yellow Labrador seems to “melt” more than the black two do, maybe there‘s an explanation in there somewhere! Or maybe there are just more white ones to fall out in the first place.
Why are young children so accepting and resilient when life throws them some tough stuff to deal with?
Why do I manage to set the smoke detector off whenever I make toast?
Why is it that I go from feeling guilty to emotional in thirty seconds? An example, having my pre chemo blood test done on Monday, I told the phlebotomist I felt guilty jumping the queue (after dodging daggers in the waiting room). She pointed out that she didn’t think there was one person in the waiting room who, knowing my circumstances, would offer to change places with me and I wasn’t to feel at all guilty. I hadn’t thought about it like that before but I think she had a point.
Why do I now have freckles?
Why do people use the words fight, battle and lost when they talk about cancer? I‘m not saying these are the wrong words, after all we all have to use language which inspires us to keep going. Fighting and battling to me means that there is a winner and loser. One day I will lose because I started with an uneven playing field, I don’t mind being the underdog, but this is more like being the underdog’s underdog! It’s a bit like a knight going to battle against a dragon and he doesn’t get issued with a horse or a sword, slightly unfair and doesn’t really give him much of a chance does it? Anyway despite all of that I’m not a loser (and never will be where cancer is concerned)… so to me this is an adventure. I’m having new experiences, new challenges, making new friends and seeing the world through different eyes ….and you can’t lose on an adventure!
Why do I always ask questions?!
Saturday 22 May 2010
A cunning plan.....
….and an update.
In reverse order. Ten weeks of the little “Red Devils” followed by a scan and then we’d see where we were going next. Ten weeks have gone and the scan has been done. Despite my reservations that nothing feels any different and my liver function hasn’t improved tremendously, Dr Socks has cast his “untrained eye” over the scan and thinks it’s worthwhile doing, possibly, another six weeks with the “Red Devils”. Shows what I know! Besides, untrained eye or not, Dr Socks has seen far more of my insides than I have and is much more familiar with the lumpy bits …..I think it only right that I trust him on this one!
In the mean time a cunning plan has been devised. It involves glamorous assistants, preferably ones with feather boas and lots of sequins and the Magic Circle.
Picture the scene, a late night magic show, all swishing curtains, dramatic music and the aforementioned glamorous assistant. The magician brings on a long box and helps the glamorous assistant lie inside. The drapes fall. He slices the box into three. And then, as if by magic, he separates and moves the three boxes around the stage. Now comes the tricky bit. The Bad Fairy sneaks on stage and steals the middle box. Ha! One new liver and an hour glass figure to boot!
Ok, so maybe not practical but wouldn’t it be fun trying? Don’t think I’ve been banned from a magic show before!!
In reverse order. Ten weeks of the little “Red Devils” followed by a scan and then we’d see where we were going next. Ten weeks have gone and the scan has been done. Despite my reservations that nothing feels any different and my liver function hasn’t improved tremendously, Dr Socks has cast his “untrained eye” over the scan and thinks it’s worthwhile doing, possibly, another six weeks with the “Red Devils”. Shows what I know! Besides, untrained eye or not, Dr Socks has seen far more of my insides than I have and is much more familiar with the lumpy bits …..I think it only right that I trust him on this one!
In the mean time a cunning plan has been devised. It involves glamorous assistants, preferably ones with feather boas and lots of sequins and the Magic Circle.
Picture the scene, a late night magic show, all swishing curtains, dramatic music and the aforementioned glamorous assistant. The magician brings on a long box and helps the glamorous assistant lie inside. The drapes fall. He slices the box into three. And then, as if by magic, he separates and moves the three boxes around the stage. Now comes the tricky bit. The Bad Fairy sneaks on stage and steals the middle box. Ha! One new liver and an hour glass figure to boot!
Ok, so maybe not practical but wouldn’t it be fun trying? Don’t think I’ve been banned from a magic show before!!
Sunday 16 May 2010
Mirror mirror on the wall....
…….whoops! It broke.
Who needs mirrors anyway? Any good friend worth their salt would tell you if you had a bit of greenery stuck in your teeth or if you’d dribbled your spaghetti down your chin.
Picture this. Take one friendly but hungry hamster. Take one bag of hamster snacks. Put hamster and hamster snacks in a small enclosed space and let the hamster stuff his little podgy face. When he’s stuffed and has cheeks bulging with goodies, carefully remove him from the enclosed space. Now for the difficult bit. Gently squeeze the stuffed cheeks of Mr Hamster, not hard enough that he spits his stash at you like a machine gun, I did say gently. Look carefully at his tightly closed mouth and you’ll see that the strain of keeping the near exploding cheek contents safe will have created wrinkles the size of the Grand Canyon around his hairy little mouth. Because this is an imaginary exercise (as if I’d encourage anyone to do that to a hamster), replace the hamster with ……..me!
Yup, that’s me. All puffed up cheeks with a little but hugely wrinkled mouth. It’s a very attractive look and one I’m expecting to see emulated by companies in New York and Paris next year. It’s ok though, wrinkly and squashed up mouths can still do smiling!
Who needs mirrors anyway? Any good friend worth their salt would tell you if you had a bit of greenery stuck in your teeth or if you’d dribbled your spaghetti down your chin.
Picture this. Take one friendly but hungry hamster. Take one bag of hamster snacks. Put hamster and hamster snacks in a small enclosed space and let the hamster stuff his little podgy face. When he’s stuffed and has cheeks bulging with goodies, carefully remove him from the enclosed space. Now for the difficult bit. Gently squeeze the stuffed cheeks of Mr Hamster, not hard enough that he spits his stash at you like a machine gun, I did say gently. Look carefully at his tightly closed mouth and you’ll see that the strain of keeping the near exploding cheek contents safe will have created wrinkles the size of the Grand Canyon around his hairy little mouth. Because this is an imaginary exercise (as if I’d encourage anyone to do that to a hamster), replace the hamster with ……..me!
Yup, that’s me. All puffed up cheeks with a little but hugely wrinkled mouth. It’s a very attractive look and one I’m expecting to see emulated by companies in New York and Paris next year. It’s ok though, wrinkly and squashed up mouths can still do smiling!
Wednesday 12 May 2010
Teeth ....
….again!
If you read about the evil endoscopy you will remember that teeth have been my Achilles’ heel since I was about seven.
Everything is out to get my teeth, it’s a conspiracy I tell you!! Carefully cleaning my pegs the other morning and a quick glance in the mirror revealed a line of manky looking tombstones. Yuk! My gums have done a runner, my teeth are covered in nasty splurges of yellowness thanks to medicated mouthwash and they look like they’d really like to leave home sometime very soon.
I didn’t mind my hair falling out with the chemo but didn’t bank on the teeth going too. Hopefully they’ll hang on for a bit longer. I can’t have any dental work done because of the “bonio” medicine (Zoledronic Acid) that I have every three weeks. It’s doing a great job keeping my bones strong but like all things it has its side effects. No invasive dental treatment for fear of the jaw bone dying … mmm… think I’ll try and avoid that one. Then there’s the chemo and limited dental work anyway because of infection risks.
Gentle cleaning with a baby toothbrush, mouthfuls of mouthwash and the occasional rub with a bit of bicarbonate of soda is all I can do for now. Either that or I may have to make a new feature of them and paint them different colours!
Does anyone have the phone number for a very generous tooth fairy?
If you read about the evil endoscopy you will remember that teeth have been my Achilles’ heel since I was about seven.
Everything is out to get my teeth, it’s a conspiracy I tell you!! Carefully cleaning my pegs the other morning and a quick glance in the mirror revealed a line of manky looking tombstones. Yuk! My gums have done a runner, my teeth are covered in nasty splurges of yellowness thanks to medicated mouthwash and they look like they’d really like to leave home sometime very soon.
I didn’t mind my hair falling out with the chemo but didn’t bank on the teeth going too. Hopefully they’ll hang on for a bit longer. I can’t have any dental work done because of the “bonio” medicine (Zoledronic Acid) that I have every three weeks. It’s doing a great job keeping my bones strong but like all things it has its side effects. No invasive dental treatment for fear of the jaw bone dying … mmm… think I’ll try and avoid that one. Then there’s the chemo and limited dental work anyway because of infection risks.
Gentle cleaning with a baby toothbrush, mouthfuls of mouthwash and the occasional rub with a bit of bicarbonate of soda is all I can do for now. Either that or I may have to make a new feature of them and paint them different colours!
Does anyone have the phone number for a very generous tooth fairy?
Wednesday 5 May 2010
A grand day out......
….with sleeping bag and camping stove!
Well that’s what was intended for yesterday and that’s what I was going to write about but it didn’t quite go as planned, no surprises there then! It wasn’t really a camping trip or anything half as exciting or even exotic, it was a day trip to the hospital. A weird day thanks to the bank holiday messing up the usual schedule.
A normal week would see me either rushing to Gloucester on a Monday morning (about an hours drive) after taking the junior Bad Fairies to school to have a blood test done. Someone from the oncology team would then ring me Monday afternoon to say if everything from the test was ok and I could have treatment on the Mobile Unit on the Tuesday.
As faffy and annoying as this would seem for many, it’s become our “normal” so we don’t get stressed about it and just incorporate it into the week as best we can.
However yesterday was going to be different! We were prepared for a long day, hence the sleeping bag and camping stove. Fairy Godmother was all ready to collect the children from school, a bag with books, snacks and drinks was packed and mobile phones were fully charged!
The plan was … drop the children off at school, rush (within the speed limit!) over to Cheltenham to have the blood test done by 10am ready to see Dr Socks at 12pm and then have treatment at 4.30pm. In between times we were going to set up a campsite in the corner of the waiting room and make it a little home-from-home! Adding in the hour to get home again, Mr Bad Fairy and I were planning on getting home in time for the Juniors to be going to bed!
Remembering that this is the Tuesday after the bank holiday, lots of extra patients being fitted in and staff under loads of extra pressure, we started off well by only waiting until just after 11am for the blood test to be done. Then amazingly Dr Socks was early by a few minutes, a first since I‘ve had the pleasure of visiting him, it’s not unheard of to be an hour late. (As a patient I don’t get cross about delays, I understand that sometimes it’s impossible to discuss all of the things you need to in a short time slot. It’s inevitable that a percentage of patients will take more time on some days, other days you only need five minutes.)
Back to the waiting room for a light lunch and the expected wait for treatment. Sadly the wine waiter didn’t show up but I suppose you can’t have everything. What do you know though ….they provided entertainment! Not entertainment that was to everyone’s liking admittedly but it was different and not offensive. A man came in and played his piano accordion for an hour. Not something you expect in the Oncology Reception “Lounge”. Shame that the lovely elves in reception were so busy, they could have come out and done a nice little dance routine to accompany him. I did volunteer but was told to sit down in no uncertain terms! I wouldn’t be surprised if someone had got wind of our idea to become squatters in the corner and brought him in to scupper our plans!!
Whilst mooching around the corridors a short while later, something you have to do occasionally, I just happened to see the nurse who was co-ordinating the treatment room that day. Knowing that we have Juniors to think about, a fair old trip to and from the hospital, administering my Red Devils only takes about half an hour, my appointment wasn’t until 4.30 and I was (obviously!) already there … she squeezed me in early without putting anyone to too much trouble. By 2pm we were on our way home. How fantastic is that? I think that might cost me a couple of boxes of chocolates next week, well worth it.
So no squatting required, the sun was shining, lounge bar (minus the bar) entertainment and good company in the form of Mr Bad Fairy and the other “guests” , what more could you wish for on a day trip to Oncology?
Well that’s what was intended for yesterday and that’s what I was going to write about but it didn’t quite go as planned, no surprises there then! It wasn’t really a camping trip or anything half as exciting or even exotic, it was a day trip to the hospital. A weird day thanks to the bank holiday messing up the usual schedule.
A normal week would see me either rushing to Gloucester on a Monday morning (about an hours drive) after taking the junior Bad Fairies to school to have a blood test done. Someone from the oncology team would then ring me Monday afternoon to say if everything from the test was ok and I could have treatment on the Mobile Unit on the Tuesday.
As faffy and annoying as this would seem for many, it’s become our “normal” so we don’t get stressed about it and just incorporate it into the week as best we can.
However yesterday was going to be different! We were prepared for a long day, hence the sleeping bag and camping stove. Fairy Godmother was all ready to collect the children from school, a bag with books, snacks and drinks was packed and mobile phones were fully charged!
The plan was … drop the children off at school, rush (within the speed limit!) over to Cheltenham to have the blood test done by 10am ready to see Dr Socks at 12pm and then have treatment at 4.30pm. In between times we were going to set up a campsite in the corner of the waiting room and make it a little home-from-home! Adding in the hour to get home again, Mr Bad Fairy and I were planning on getting home in time for the Juniors to be going to bed!
Remembering that this is the Tuesday after the bank holiday, lots of extra patients being fitted in and staff under loads of extra pressure, we started off well by only waiting until just after 11am for the blood test to be done. Then amazingly Dr Socks was early by a few minutes, a first since I‘ve had the pleasure of visiting him, it’s not unheard of to be an hour late. (As a patient I don’t get cross about delays, I understand that sometimes it’s impossible to discuss all of the things you need to in a short time slot. It’s inevitable that a percentage of patients will take more time on some days, other days you only need five minutes.)
Back to the waiting room for a light lunch and the expected wait for treatment. Sadly the wine waiter didn’t show up but I suppose you can’t have everything. What do you know though ….they provided entertainment! Not entertainment that was to everyone’s liking admittedly but it was different and not offensive. A man came in and played his piano accordion for an hour. Not something you expect in the Oncology Reception “Lounge”. Shame that the lovely elves in reception were so busy, they could have come out and done a nice little dance routine to accompany him. I did volunteer but was told to sit down in no uncertain terms! I wouldn’t be surprised if someone had got wind of our idea to become squatters in the corner and brought him in to scupper our plans!!
Whilst mooching around the corridors a short while later, something you have to do occasionally, I just happened to see the nurse who was co-ordinating the treatment room that day. Knowing that we have Juniors to think about, a fair old trip to and from the hospital, administering my Red Devils only takes about half an hour, my appointment wasn’t until 4.30 and I was (obviously!) already there … she squeezed me in early without putting anyone to too much trouble. By 2pm we were on our way home. How fantastic is that? I think that might cost me a couple of boxes of chocolates next week, well worth it.
So no squatting required, the sun was shining, lounge bar (minus the bar) entertainment and good company in the form of Mr Bad Fairy and the other “guests” , what more could you wish for on a day trip to Oncology?
Friday 30 April 2010
Cannula Queens....
…...and Fairy Godmothers.
Everyone needs a Fairy Godmother. I’ve got a special one and I’m not sharing because she also has hidden talents.
Not only is she completely loopy, absolutely hilarious in her observations on life and the most naturally caring individual you could know, she can ….wait for it…..cannulate!
Having weekly chemotherapy means a twice weekly prodding of the veins. Once for a blood test and once to have a cannula inserted for the “Red Devils” (or drug of the week) in be infused through.
So far I’m lucky to be complimented by the nurses on the good behaviour of my veins. They don’t run away and hide and none of them have so far collapsed. It does happen for many patients though, particularly when veins are regularly abused by needles and toxic potions, so only time will tell if mine suddenly see the light and disappear.
Should the old veins dare to play up then the Cannula Queen has permission to be let loose on me. I shall either smuggle her into the treatment room or insist on a home supply of equipment so she can stab my veins over a coffee!
Needless to say she has other medical skills too, you don’t tend to learn these things just by chance. Some of these could be quite useful, for instance, she knows just how to unstick an inadvertently superglued toe from a sandal. One that I do draw the line at though is the precordial thump ….the whack on the chest you might get if ever you’re unfortunate enough to have a heart attack. Well if she thumps me I’d have to thump back now wouldn’t I? She wouldn’t expect any less from a Bad Fairy!
As Fairy Godmothers go, mine is up there with the five star ones. Obviously everyone will look for different qualities in their Fairy Godmothers. For me the things that stand out are the glistening heart of gold that’s impossible to hide, the naughty twinkle in the eye, the tear inducing giggle, the instinct that allows us to talk, at just the right time, about things others shy away from and the feeling that despite not knowing each other for long it feels like forever ….in a good way. Oh and did I mention that she cannulates AND bakes cakes?
Everyone needs a Fairy Godmother. I’ve got a special one and I’m not sharing because she also has hidden talents.
Not only is she completely loopy, absolutely hilarious in her observations on life and the most naturally caring individual you could know, she can ….wait for it…..cannulate!
Having weekly chemotherapy means a twice weekly prodding of the veins. Once for a blood test and once to have a cannula inserted for the “Red Devils” (or drug of the week) in be infused through.
So far I’m lucky to be complimented by the nurses on the good behaviour of my veins. They don’t run away and hide and none of them have so far collapsed. It does happen for many patients though, particularly when veins are regularly abused by needles and toxic potions, so only time will tell if mine suddenly see the light and disappear.
Should the old veins dare to play up then the Cannula Queen has permission to be let loose on me. I shall either smuggle her into the treatment room or insist on a home supply of equipment so she can stab my veins over a coffee!
Needless to say she has other medical skills too, you don’t tend to learn these things just by chance. Some of these could be quite useful, for instance, she knows just how to unstick an inadvertently superglued toe from a sandal. One that I do draw the line at though is the precordial thump ….the whack on the chest you might get if ever you’re unfortunate enough to have a heart attack. Well if she thumps me I’d have to thump back now wouldn’t I? She wouldn’t expect any less from a Bad Fairy!
As Fairy Godmothers go, mine is up there with the five star ones. Obviously everyone will look for different qualities in their Fairy Godmothers. For me the things that stand out are the glistening heart of gold that’s impossible to hide, the naughty twinkle in the eye, the tear inducing giggle, the instinct that allows us to talk, at just the right time, about things others shy away from and the feeling that despite not knowing each other for long it feels like forever ….in a good way. Oh and did I mention that she cannulates AND bakes cakes?
Tuesday 27 April 2010
Feeling guilty ....
…..for being quiet and grumpy!.
Bad Fairies aren’t known for being quiet so sometimes we have to put a bit of practise in and that‘s what I‘ve been doing.
The past three weeks have been very busy in the Bad Fairy house, school holidays, meeting up with an old school friend, parents visiting and parents staying. All very lovely and thoroughly enjoyable but here’s the rub. I hate admitted that my energy levels aren’t what they were. Giving in to feeling tired isn’t something I do. Spur of the moment is my style and unfortunately spur of the moment is a bit of a drain on the limited fairy resources ….and then I pay the price.
Being sociable is something I enjoy, certainly not something which used to use up much energy. Weird how now it does if I don’t pace myself better. It’s not just physical energy either, mental energy leaks out of my ears like little puffs of dragon’s smoke! A combination of being poisoned weekly, having lumpy bad bits tapping into vital energy supplies and doing all of the usual mum stuff should give me a hint that reserves are likely to be lower but I choose to ignore that.
The lack of mental energy can cause problems. Lack of concentration which can make conversations really weird. The appalling memory skills. Knowing that it really isn’t worth my while trying to do Junior Bad Fairy homework are some of the less troublesome. The worst is that I read too much into what others say and could very easily over react. I want to shout (but don’t) that it’s not important that you had sugar in your tea and didn’t want it, who cares if a plate got smashed, does it really matter that someone pushed into a queue of traffic …. I want to be very selfish and shout (but still don’t!) that what’s important is that I’m grateful to have woken up this morning and I’m alive.
The solution. Well, I suppose I could be sensible and space things out better but that seems a bit boring and predictable. So the Bad Fairy solution is, wear yourself out to the point where you can’t remember how to spell your own name and then spend some time in quiet reflection. Not sleeping, just sitting. No company, apart from some very gentle burbling bubbles, no interruptions. Reorganise the cluttered mental filing cabinets, wear a grumpy face and relax! Works a treat.
In my defence I have to say, the grumpy face isn’t grumpy. It’s my thinking face. It’s just relaxed, not smiling or frowning, not doing anything really just being there, sort of non-expressive I suppose. Miss Bad Fairy calls it my grumpy face but I think that’s because she gets confused with quiet and grumpy, neither of which come naturally to her either!
Bad Fairies aren’t known for being quiet so sometimes we have to put a bit of practise in and that‘s what I‘ve been doing.
The past three weeks have been very busy in the Bad Fairy house, school holidays, meeting up with an old school friend, parents visiting and parents staying. All very lovely and thoroughly enjoyable but here’s the rub. I hate admitted that my energy levels aren’t what they were. Giving in to feeling tired isn’t something I do. Spur of the moment is my style and unfortunately spur of the moment is a bit of a drain on the limited fairy resources ….and then I pay the price.
Being sociable is something I enjoy, certainly not something which used to use up much energy. Weird how now it does if I don’t pace myself better. It’s not just physical energy either, mental energy leaks out of my ears like little puffs of dragon’s smoke! A combination of being poisoned weekly, having lumpy bad bits tapping into vital energy supplies and doing all of the usual mum stuff should give me a hint that reserves are likely to be lower but I choose to ignore that.
The lack of mental energy can cause problems. Lack of concentration which can make conversations really weird. The appalling memory skills. Knowing that it really isn’t worth my while trying to do Junior Bad Fairy homework are some of the less troublesome. The worst is that I read too much into what others say and could very easily over react. I want to shout (but don’t) that it’s not important that you had sugar in your tea and didn’t want it, who cares if a plate got smashed, does it really matter that someone pushed into a queue of traffic …. I want to be very selfish and shout (but still don’t!) that what’s important is that I’m grateful to have woken up this morning and I’m alive.
The solution. Well, I suppose I could be sensible and space things out better but that seems a bit boring and predictable. So the Bad Fairy solution is, wear yourself out to the point where you can’t remember how to spell your own name and then spend some time in quiet reflection. Not sleeping, just sitting. No company, apart from some very gentle burbling bubbles, no interruptions. Reorganise the cluttered mental filing cabinets, wear a grumpy face and relax! Works a treat.
In my defence I have to say, the grumpy face isn’t grumpy. It’s my thinking face. It’s just relaxed, not smiling or frowning, not doing anything really just being there, sort of non-expressive I suppose. Miss Bad Fairy calls it my grumpy face but I think that’s because she gets confused with quiet and grumpy, neither of which come naturally to her either!
Friday 16 April 2010
Comments .....
…… thank you.
A little interruption to the usual flow of the blog. I’d like to say thank you to all of you that read my ramblings and most importantly to everyone who has posted a comment, on the blog, on the Macmillan site and elsewhere, along with all of the lovely emails.
Your comments and feedback are truly appreciated, not only by myself but also Mr Bad Fairy and hopefully in years to come by the Junior Bad Fairies too.
I’ve always said that my only intention with writing this was to try and show people that you don’t have to lose your humour, you don’t have to change the way you think or behave in the face of cancer. If my ramblings are able to make one person smile, that otherwise wouldn’t be, then I’ve succeeded in what I set out to do.
So thank you. Please keep commenting, good and bad, along with any suggestions of things you think I may have missed or could explain better.
From a humble Bad Fairy x
A little interruption to the usual flow of the blog. I’d like to say thank you to all of you that read my ramblings and most importantly to everyone who has posted a comment, on the blog, on the Macmillan site and elsewhere, along with all of the lovely emails.
Your comments and feedback are truly appreciated, not only by myself but also Mr Bad Fairy and hopefully in years to come by the Junior Bad Fairies too.
I’ve always said that my only intention with writing this was to try and show people that you don’t have to lose your humour, you don’t have to change the way you think or behave in the face of cancer. If my ramblings are able to make one person smile, that otherwise wouldn’t be, then I’ve succeeded in what I set out to do.
So thank you. Please keep commenting, good and bad, along with any suggestions of things you think I may have missed or could explain better.
From a humble Bad Fairy x
Wednesday 14 April 2010
Toxic burps.......
..….how to clear a room in an instant!
Have you ever stood in a queue and just wished that everyone in front of you would miraculously disappear? I have, I’m not the most patient of shoppers at the best of times, shopping fights for the prized last place on the to-do list with housework. I now have a secret weapon which clears an aisle/bar/queue in an instant!
The Toxic Burp. It’s a rather rank and putrid burp admittedly but it does a fantastic job so mustn’t be criticised too heavily. I think it’s brought about by the culmination of so many drugs to counter act the side effects of the side effects that the side effects cause … if you get my drift!!
Toxic burps seem to be rather selective which I suppose is a good thing. They pick one week at a time and then shuffle off and retreat to some little pit somewhere to be infused with smelly things until their next outing a couple of weeks later. The recipe would probably make for interesting reading.
Why not do the ladylike thing and keep them to yourself I hear you ask? Hah! Have you had toxic burps? Have you tried to suppress a toxic burp? Easier said than done. They have a mind of their own and will not be stopped in their flow. Their need to release that pent up stink, ideally accompanied by a rather loud expulsion of air, green puffs of smoke and a muttered “pardon me”, is far greater than any need to attempt to make me anything like ladylike!
Still, at least they’re top toxic burps and not bottom toxic burps. They’re visiting this week. Not sure why this week is special. Maybe it’s in the treatment plan? Yesterday was week five of the “Red Devil” and they appeared on week two as well. I might have to have a look at the schedule, make sure I make full use of any future visits!
Oooh….is that Mr Bad Fairy and the Juniors I see scrambling down the driveway clutching half-packed suitcases?!
Have you ever stood in a queue and just wished that everyone in front of you would miraculously disappear? I have, I’m not the most patient of shoppers at the best of times, shopping fights for the prized last place on the to-do list with housework. I now have a secret weapon which clears an aisle/bar/queue in an instant!
The Toxic Burp. It’s a rather rank and putrid burp admittedly but it does a fantastic job so mustn’t be criticised too heavily. I think it’s brought about by the culmination of so many drugs to counter act the side effects of the side effects that the side effects cause … if you get my drift!!
Toxic burps seem to be rather selective which I suppose is a good thing. They pick one week at a time and then shuffle off and retreat to some little pit somewhere to be infused with smelly things until their next outing a couple of weeks later. The recipe would probably make for interesting reading.
Why not do the ladylike thing and keep them to yourself I hear you ask? Hah! Have you had toxic burps? Have you tried to suppress a toxic burp? Easier said than done. They have a mind of their own and will not be stopped in their flow. Their need to release that pent up stink, ideally accompanied by a rather loud expulsion of air, green puffs of smoke and a muttered “pardon me”, is far greater than any need to attempt to make me anything like ladylike!
Still, at least they’re top toxic burps and not bottom toxic burps. They’re visiting this week. Not sure why this week is special. Maybe it’s in the treatment plan? Yesterday was week five of the “Red Devil” and they appeared on week two as well. I might have to have a look at the schedule, make sure I make full use of any future visits!
Oooh….is that Mr Bad Fairy and the Juniors I see scrambling down the driveway clutching half-packed suitcases?!
Friday 9 April 2010
Tears of a clown......
……when there’s no-one around.
Quite apt words I suppose. Clowns do cry and so do Bad Fairies.
This blog post has been rambling around my head for a while and after a few “moments” this week I feel I can now put the detail to it and be brave and share. I’m very conscious of the fact that I tend write as I think and most of the time I’m naturally quite cheerful and chirpy. Sometimes though the tears roll.
I’ve always cried, it’s not a new thing. Films, books, songs have all been known to set me off. The sort of crying that involves a few tears meandering slowly and discreetly down a cheek.
But something has changed. My emotions are more free-flowing and more open than ever before. I haven’t got time to waste bottling things up so I’m less guarded, I can’t think of a better way to describe it.
These tears are a whole new experience. They’re not tears for me or indeed anyone else, they’re not tears of sadness, frustration or even anger. They’re tears brought about by the kindness and thoughtfulness of others towards me, including strangers. That sounds awful doesn’t it? You’d think no one had ever been kind to me before! They have, but I’ve never been so touched emotionally by it, or at least not to the extent that I bawl my eyes out and turn myself into a soggy faced, unable to talk, crumpled heap for five minutes at a time! As you can see it passes quickly but it is unbelievably intense whilst it lasts and usually happens totally out of the blue.
Some examples of the things that have set me off this week alone…..
An email from a wonderful lady to say thank you for some flowers I‘d given her. Apparently my timing, unbeknownst to me, was perfect and the flowers had lifted her just when she needed a little boost.
My mum’s hairdresser Ali, asking if I would allow her to wear my name on her back when she and some friends run the “Race for Life” this year. Ali doesn’t really know me, but is a good friend of Mum’s and (unfortunately for her!) she gets to hear all about me.
Another email, forwarded by an aunt from a friend of hers who had read this blog. Such encouraging and supportive words, again from someone I don’t know but full of care, compassion and positive vibes for the Bad Fairy family.
And finally my Fairy Godmother. She reads me like a book, touches on subjects no one else has the courage to discuss and always with impeccable timing. She just “knows” if you know what I mean. Where would we be without a Fairy Godmother? I think she deserves a blog post dedicated just to her!
I’ve no idea how to label these tears …..any suggestions?
Quite apt words I suppose. Clowns do cry and so do Bad Fairies.
This blog post has been rambling around my head for a while and after a few “moments” this week I feel I can now put the detail to it and be brave and share. I’m very conscious of the fact that I tend write as I think and most of the time I’m naturally quite cheerful and chirpy. Sometimes though the tears roll.
I’ve always cried, it’s not a new thing. Films, books, songs have all been known to set me off. The sort of crying that involves a few tears meandering slowly and discreetly down a cheek.
But something has changed. My emotions are more free-flowing and more open than ever before. I haven’t got time to waste bottling things up so I’m less guarded, I can’t think of a better way to describe it.
These tears are a whole new experience. They’re not tears for me or indeed anyone else, they’re not tears of sadness, frustration or even anger. They’re tears brought about by the kindness and thoughtfulness of others towards me, including strangers. That sounds awful doesn’t it? You’d think no one had ever been kind to me before! They have, but I’ve never been so touched emotionally by it, or at least not to the extent that I bawl my eyes out and turn myself into a soggy faced, unable to talk, crumpled heap for five minutes at a time! As you can see it passes quickly but it is unbelievably intense whilst it lasts and usually happens totally out of the blue.
Some examples of the things that have set me off this week alone…..
An email from a wonderful lady to say thank you for some flowers I‘d given her. Apparently my timing, unbeknownst to me, was perfect and the flowers had lifted her just when she needed a little boost.
My mum’s hairdresser Ali, asking if I would allow her to wear my name on her back when she and some friends run the “Race for Life” this year. Ali doesn’t really know me, but is a good friend of Mum’s and (unfortunately for her!) she gets to hear all about me.
Another email, forwarded by an aunt from a friend of hers who had read this blog. Such encouraging and supportive words, again from someone I don’t know but full of care, compassion and positive vibes for the Bad Fairy family.
And finally my Fairy Godmother. She reads me like a book, touches on subjects no one else has the courage to discuss and always with impeccable timing. She just “knows” if you know what I mean. Where would we be without a Fairy Godmother? I think she deserves a blog post dedicated just to her!
I’ve no idea how to label these tears …..any suggestions?
Monday 5 April 2010
Tigger Juice .....
…..please Sir, can I have some more?
Rest assured, it does state on the packaging that ‘No Tiggers were harmed in the making of this product.’ I can’t honestly believe anyone would allow a Tigger to be juiced anyway, can you imagine the wailing and gnashing of teeth it would cause? Eeyore wouldn’t know what to mope about first!
Good thing it’s not real Tigger Juice then and only a nickname for more medication (I can hear the sigh of relief from here!). Tigger juice is the Bad Fairy nickname for the dexamethasone steroids given along side chemo. I had them with the last lot and am having them again. Taking into account that not too many of us would be clapping our hands in glee at the thought of chemotherapy, I do when Tigger Juice is mentioned.
The medical opinion is that it helps as an anti-sickness treatment, along with reducing any inflammation, reducing the risk of allergic reactions to the rest of the cocktail and can increase the appetite of those who lose theirs as a result of the rest of the chemical cocktail given. I’m sure it does a lot more besides but those are the reason I’m aware of.
Good news is it does the trick with me. No sickness (the important bit in my book!), a slimmer liver and thankfully no allergies.
It does however have side-effects. It makes me bounce …. Just like Tigger! Hence the name. Now normally I could be described as a sort of laid-back kind of person. I don’t rush out to run marathons, nor does housework appear that often at the top of my list of jobs to do, there are far more enjoyable things to spend my energy on. But, Tigger Juice messes up my sleep. I’m a night owl anyway and tend not to be in bed much before midnight and then catch up with a lie-in at the weekend if needed. This week has seen me up at 4am most mornings, and that’s after going to bed at about …ooh….1.30am!
Without Tigger Juice, this lack of sleep would have me sulking, stamping my feet and having tantrums and tearful outbursts, in much the same way as a sleep-deprived child. With Tigger Juice I find myself loading the washing machine at 4am, cleaning out kitchen cupboards (sorry spiders!), baking and writing blog posts (well at least I can do that quietly!!). I have a sneaky feeling that Mr Bad Fairy is quite relieved that the days of me waking him at 4am to share a cup of tea and look at the gorgeous sunrises have passed.
The Bad Fairy household would like to reassure you that I’m only allowed the Tigger Juice for four days of the week …. shame really, but there you go, I quite like the Tiggered-up me!
Rest assured, it does state on the packaging that ‘No Tiggers were harmed in the making of this product.’ I can’t honestly believe anyone would allow a Tigger to be juiced anyway, can you imagine the wailing and gnashing of teeth it would cause? Eeyore wouldn’t know what to mope about first!
Good thing it’s not real Tigger Juice then and only a nickname for more medication (I can hear the sigh of relief from here!). Tigger juice is the Bad Fairy nickname for the dexamethasone steroids given along side chemo. I had them with the last lot and am having them again. Taking into account that not too many of us would be clapping our hands in glee at the thought of chemotherapy, I do when Tigger Juice is mentioned.
The medical opinion is that it helps as an anti-sickness treatment, along with reducing any inflammation, reducing the risk of allergic reactions to the rest of the cocktail and can increase the appetite of those who lose theirs as a result of the rest of the chemical cocktail given. I’m sure it does a lot more besides but those are the reason I’m aware of.
Good news is it does the trick with me. No sickness (the important bit in my book!), a slimmer liver and thankfully no allergies.
It does however have side-effects. It makes me bounce …. Just like Tigger! Hence the name. Now normally I could be described as a sort of laid-back kind of person. I don’t rush out to run marathons, nor does housework appear that often at the top of my list of jobs to do, there are far more enjoyable things to spend my energy on. But, Tigger Juice messes up my sleep. I’m a night owl anyway and tend not to be in bed much before midnight and then catch up with a lie-in at the weekend if needed. This week has seen me up at 4am most mornings, and that’s after going to bed at about …ooh….1.30am!
Without Tigger Juice, this lack of sleep would have me sulking, stamping my feet and having tantrums and tearful outbursts, in much the same way as a sleep-deprived child. With Tigger Juice I find myself loading the washing machine at 4am, cleaning out kitchen cupboards (sorry spiders!), baking and writing blog posts (well at least I can do that quietly!!). I have a sneaky feeling that Mr Bad Fairy is quite relieved that the days of me waking him at 4am to share a cup of tea and look at the gorgeous sunrises have passed.
The Bad Fairy household would like to reassure you that I’m only allowed the Tigger Juice for four days of the week …. shame really, but there you go, I quite like the Tiggered-up me!
Thursday 1 April 2010
Over the rainbow.....
….....don’t panic!! I’m not about to burst into song, I promise. That would be far too cruel of me.
Aren’t rainbows the most beautiful, awesome natural creations? I still see them through the eyes of a child and feel all tingly and amazed whenever I spy one. I’ve no idea if my reaction is because of their magnificent yet simple colours, a fascination with the power of nature or a wish to hold on to innocent childhood fantasies of Leprechauns leaving crocks of gold at their ends! Whatever it might be, I stop and stare with wonder at them all. Luckily for me we seem to have picked an ideal rainbow spotting area in which to live. Since moving here I’ve seen more rainbows than ever, included double rainbows, something I’d never witnessed before and I never get bored of gazing at them.
Rainbows weave their way through many cultures, faith systems and folklore and have done for thousands of years. Some believe it is a pathway or bridge, others that it is a symbol of their God (or Gods and Goddesses). The stories are endless and fascinating in their diversity. For some a rainbow brings peace, hope or comfort, to others fear. After losing a much loved (and very ancient) cat a friend emailed me a copy of the poem “Rainbow Bridge”, a poem I’d never previously read but am now unlikely to forget.
So, rainbows … I know a secret. Leprechauns were only ever taking cheeky advantage of something created by fairy magic (ok … and a bit of science and nature!). Bad Fairies have a special affinity to rainbows. Many moons ago Bad Fairies were punished for minor infringements of fairy rules with a fairy ASBO. This resulted in pots of paints and brushes being issued and the instruction to repaint any fading rainbow seen. Now being Bad Fairies following explicit instructions can be very trying and does go against the grain somewhat. So they improvised. Splash the colours by all means but ladders and scaffold (elf n safety at it’s best!)? No chance! The best way to paint a rainbow is to scramble up one in the most ungainly way possible, attach a sodden paintbrush to a belt around your waist and slide down yelling “Wheeeeeeeeeeeeeeeeee” at the top of your voice! Hey Presto, great fun and leaves a rather haphazard stripe of colour in your wake ….job done!
When my time comes and I’m not here to ramble, I shall be sliding down rainbows. No star in the night sky for me, nor cold stone in the ground. Rainbow sliding’s where I’ll be! Bad fairies are good at hiding, but one day if you keep looking you might catch a glimpse of a paint covered, scruffy little fairy out of the corner of your eye, riding the rainbows with a massive grin on her face!
Aren’t rainbows the most beautiful, awesome natural creations? I still see them through the eyes of a child and feel all tingly and amazed whenever I spy one. I’ve no idea if my reaction is because of their magnificent yet simple colours, a fascination with the power of nature or a wish to hold on to innocent childhood fantasies of Leprechauns leaving crocks of gold at their ends! Whatever it might be, I stop and stare with wonder at them all. Luckily for me we seem to have picked an ideal rainbow spotting area in which to live. Since moving here I’ve seen more rainbows than ever, included double rainbows, something I’d never witnessed before and I never get bored of gazing at them.
Rainbows weave their way through many cultures, faith systems and folklore and have done for thousands of years. Some believe it is a pathway or bridge, others that it is a symbol of their God (or Gods and Goddesses). The stories are endless and fascinating in their diversity. For some a rainbow brings peace, hope or comfort, to others fear. After losing a much loved (and very ancient) cat a friend emailed me a copy of the poem “Rainbow Bridge”, a poem I’d never previously read but am now unlikely to forget.
So, rainbows … I know a secret. Leprechauns were only ever taking cheeky advantage of something created by fairy magic (ok … and a bit of science and nature!). Bad Fairies have a special affinity to rainbows. Many moons ago Bad Fairies were punished for minor infringements of fairy rules with a fairy ASBO. This resulted in pots of paints and brushes being issued and the instruction to repaint any fading rainbow seen. Now being Bad Fairies following explicit instructions can be very trying and does go against the grain somewhat. So they improvised. Splash the colours by all means but ladders and scaffold (elf n safety at it’s best!)? No chance! The best way to paint a rainbow is to scramble up one in the most ungainly way possible, attach a sodden paintbrush to a belt around your waist and slide down yelling “Wheeeeeeeeeeeeeeeeee” at the top of your voice! Hey Presto, great fun and leaves a rather haphazard stripe of colour in your wake ….job done!
When my time comes and I’m not here to ramble, I shall be sliding down rainbows. No star in the night sky for me, nor cold stone in the ground. Rainbow sliding’s where I’ll be! Bad fairies are good at hiding, but one day if you keep looking you might catch a glimpse of a paint covered, scruffy little fairy out of the corner of your eye, riding the rainbows with a massive grin on her face!
Tuesday 30 March 2010
Hope for Tomorrow....
....Where would we be without hope? We all need some. Whether it’s hoping for a good day tomorrow, hoping for happiness, success or health for ourselves, family and friends or hoping we pick the right numbers on the lottery!
Thanks to the hope of others I’ve had a very “easy” day of chemo today. No driving for over an hour to the hospital and another hour back again. No waiting for the inevitable delay in treatment in a large oncology department. Was my treatment handled any less professionally? Certainly wasn’t. I could have shut my eyes and quite easily imagined myself in the usual chemo suite.
The secret of this “easy” day? The secret was that today I had my treatment on a Mobile Chemotherapy Unit supplied by Hope for Tomorrow. A hope transformed into a reality.
The only downside to this option is that it deprives Mr Bad Fairy and myself from some entertainment. The car park of a hospital isn’t a place usually seen as competition to the Comedy Store but on a good day ours is! We must have spent hours over the past nine months sniggering into take-away cups of tea at the shenanigans that take place in the car park. I’m the first to admit that my parking skills are not the greatest, yet I come away feeling quite competent. We’ve had a little old lady getting out of her car to rip verbal shreds off a younger man who had dared to sneak into the space she’d been so carefully measuring up and shuffling to and from for the past fifteen minutes…..he moved! Then there are those who seem to believe that the white line must be perfectly aligned under the centre of their car. The “If I back into a dead end then I can grab your space even though you can’t actually get out of it” brigade. The ones who believe all kerbs are naked unless carefully and deliberately smeared with the bits of rubber you don’t really need to keep on your tyres. And Mr BF’s favourites, the ones who have to open the car door (after umpteen manoeuvres to drive up in a straight line) to reach the ticket machine at the exit barrier! The joys, who said life was dull?
Thanks to the hope of others I’ve had a very “easy” day of chemo today. No driving for over an hour to the hospital and another hour back again. No waiting for the inevitable delay in treatment in a large oncology department. Was my treatment handled any less professionally? Certainly wasn’t. I could have shut my eyes and quite easily imagined myself in the usual chemo suite.
The secret of this “easy” day? The secret was that today I had my treatment on a Mobile Chemotherapy Unit supplied by Hope for Tomorrow. A hope transformed into a reality.
The only downside to this option is that it deprives Mr Bad Fairy and myself from some entertainment. The car park of a hospital isn’t a place usually seen as competition to the Comedy Store but on a good day ours is! We must have spent hours over the past nine months sniggering into take-away cups of tea at the shenanigans that take place in the car park. I’m the first to admit that my parking skills are not the greatest, yet I come away feeling quite competent. We’ve had a little old lady getting out of her car to rip verbal shreds off a younger man who had dared to sneak into the space she’d been so carefully measuring up and shuffling to and from for the past fifteen minutes…..he moved! Then there are those who seem to believe that the white line must be perfectly aligned under the centre of their car. The “If I back into a dead end then I can grab your space even though you can’t actually get out of it” brigade. The ones who believe all kerbs are naked unless carefully and deliberately smeared with the bits of rubber you don’t really need to keep on your tyres. And Mr BF’s favourites, the ones who have to open the car door (after umpteen manoeuvres to drive up in a straight line) to reach the ticket machine at the exit barrier! The joys, who said life was dull?
Sunday 28 March 2010
Why the name "Bad Fairy" .....
.... I suppose I should explain.
My lovely aunt has just emailed to tell me that she's concerned about me branding Mr BF and the junior BFs with my title of Bad Fairy throughout my blog! She quite rightly associates the word "bad" with the cancer.
So, an explanation for anyone wondering the same thing.
A good while ago, after a particularly giggly conversation with a friend, she announced that I must have a bad fairy sat on my shoulder. Her reasons for this were related to the belief that we all have an angel and a devil sat on opposite shoulders, whispering into our ears and acting as our conscience.
Apparently, although I have a slightly naughty streak, it never makes me behave maliciously or vindictively and therefore can't be the voice of a devil, but must simply be a bad fairy encouraging me to say and do the things that get me into trouble!
Henceforth I was known as the Bad Fairy.
Apologies if you've heard this before, but I don't want you all imagining a fairy that's rotting from the inside out .... although with a dose of toxic burps after chemo it's an easy mistake to make!
My lovely aunt has just emailed to tell me that she's concerned about me branding Mr BF and the junior BFs with my title of Bad Fairy throughout my blog! She quite rightly associates the word "bad" with the cancer.
So, an explanation for anyone wondering the same thing.
A good while ago, after a particularly giggly conversation with a friend, she announced that I must have a bad fairy sat on my shoulder. Her reasons for this were related to the belief that we all have an angel and a devil sat on opposite shoulders, whispering into our ears and acting as our conscience.
Apparently, although I have a slightly naughty streak, it never makes me behave maliciously or vindictively and therefore can't be the voice of a devil, but must simply be a bad fairy encouraging me to say and do the things that get me into trouble!
Henceforth I was known as the Bad Fairy.
Apologies if you've heard this before, but I don't want you all imagining a fairy that's rotting from the inside out .... although with a dose of toxic burps after chemo it's an easy mistake to make!
Saturday 27 March 2010
Wrinkles should merely indicate where smiles have been....
…..goes without saying I must smile a lot then!
Although Miss Bad Fairy disagrees, she thinks I could do more smiling apparently and Master BF says in his lovely, sincere and gorgeous tones, “Mum, I don’t want to upset you or anything, but your tummy’s looking really fat!” Now, remind me … Miss BF said what?? In fairness to them their comments did make me laugh, along with causing another impromptu amateur human biology lesson, which only made them laugh when they were shown the accompanying sketches on the back of an envelope!
Some people just seem to have a knack for making others smile and laugh don’t you think? On this new adventure, one which given a choice I’d have probably passed on buying a ticket for but there didn’t appear to be an opt out clause, I’ve found so many who are gifted in this area of facial expression.
Dr. Socks (not his real name), wears snazzy, smiley socks which we have to inspect before each consultation. Despite the serious side of our discussions there is usually a reason to smile before each has finished. Last time it was a story about steak tartare which I won’t repeat for fear of any repercussions and then me referring to the chemo consent form as a last requests form (oops!). His able assistants are just as cheerful, Dr. Tinkerbell (she rustles up the magic and gets things done) and Dr Boy Scout (too young by half and our first conversation started with a tongue in cheek chat about coming to consultations with a “Be Prepared” attitude….sleeping bags, camping stove and picnic!
The oncology nurses, too many to mention by name, although a couple (who have psuedonyms) can be mentioned without me needing extra sticky plasters next week … there’s the singing nurse, she lights up the room with her renditions of various tunes, Winston’s mum, always smiling and keeping me up to date on how many wires Winston has sneakily chewed. Peter Pan Nurse, the first chemo nurse to ever have the dubious pleasure of treating me. I’ll have to work on the names so I can mention a few more… Road Runner is a possibility but we’ll see, depends how the Race for Life goes! All wonderful and invariably smiley. Ignoring the needles, sticky plasters, “kiss me quick” hats/sick bowls and the colourful and toxic concoctions they distribute, they make a visit to the chemo suite quite an entertaining trip.
And finally (drum roll please, Hula dancers enter stage left and strike up the ukuleles), we have the airport lounge …sorry, I mean the reception staff, have you seen the new reception at Cheltenham? Puts Terminal 5 to shame!! They work away like little elves on a miniature paper mountain that resembles Mount Vesuvius (in this paper free society that we have). The computer screens constantly flash and ping and the phones are never left to ring and ring. They put people at ease, give directions, listen to moans and gripes, answer questions, organise replacement blood paperwork that numpty patients forgot to take home with them and realise on Friday afternoon they need first thing on Monday ….ho hum. And still they smile.
One particularly smiler can be mentioned by name (’cos I asked!). I think, going on the twinkle in her eye that she’s also a secret bad fairy. Not related you understand, but made from a similar mould, she’d probably tell you she’s the Mark 2 version with me being the experimental model!
She was the first person I met at Cheltenham hospital, by virtue of the fact she was sat at the reception desk where I had to check in. What a welcome to this strange new world. She smiled. Without saying a word she let me know that it was ok to be me and not put on my “library” face. What a weight that was lifted off my shoulders. Pippa hasn’t had a lot to smile about herself lately and yet she still manages it. She gives smiles away for free. When I’m no longer visiting the hospital, Pippa will be one of those memories that will reassure Mr BF and, in particular, the junior bad fairies that there are some wonderful people in this world who made what could be a depressing time, quite cheerful and full of those all important smiles. Thank you Pippa. I’ll raise a glass of Cheeky Vimto to you and suffer the consequences for the next week … but you’re worth it!!
“A Smile costs nothing, but gives much
It enriches those who receive, without making poorer those who give
It takes but a moment, but the memory of it sometimes lasts forever
None is so rich or mighty that he can get along without it,
and none is so poor, but that he can be made rich by it
A Smile creates happiness in the home, fosters good will in business,
and is the countersign of friendship
It brings rest to the weary, cheer to the discouraged, sunshine to the sad,
and it is nature’s best antidote for trouble.
Yet it cannot be bought, begged, borrowed, or stolen,
for it is something that is of no value to anyone, until it is given away
Some people are too tired to give you a smile;
Give them one of yours, as none needs a smile so much as he who has no more to give.”
Now….how many smiler recruits can I rustle up today?
Although Miss Bad Fairy disagrees, she thinks I could do more smiling apparently and Master BF says in his lovely, sincere and gorgeous tones, “Mum, I don’t want to upset you or anything, but your tummy’s looking really fat!” Now, remind me … Miss BF said what?? In fairness to them their comments did make me laugh, along with causing another impromptu amateur human biology lesson, which only made them laugh when they were shown the accompanying sketches on the back of an envelope!
Some people just seem to have a knack for making others smile and laugh don’t you think? On this new adventure, one which given a choice I’d have probably passed on buying a ticket for but there didn’t appear to be an opt out clause, I’ve found so many who are gifted in this area of facial expression.
Dr. Socks (not his real name), wears snazzy, smiley socks which we have to inspect before each consultation. Despite the serious side of our discussions there is usually a reason to smile before each has finished. Last time it was a story about steak tartare which I won’t repeat for fear of any repercussions and then me referring to the chemo consent form as a last requests form (oops!). His able assistants are just as cheerful, Dr. Tinkerbell (she rustles up the magic and gets things done) and Dr Boy Scout (too young by half and our first conversation started with a tongue in cheek chat about coming to consultations with a “Be Prepared” attitude….sleeping bags, camping stove and picnic!
The oncology nurses, too many to mention by name, although a couple (who have psuedonyms) can be mentioned without me needing extra sticky plasters next week … there’s the singing nurse, she lights up the room with her renditions of various tunes, Winston’s mum, always smiling and keeping me up to date on how many wires Winston has sneakily chewed. Peter Pan Nurse, the first chemo nurse to ever have the dubious pleasure of treating me. I’ll have to work on the names so I can mention a few more… Road Runner is a possibility but we’ll see, depends how the Race for Life goes! All wonderful and invariably smiley. Ignoring the needles, sticky plasters, “kiss me quick” hats/sick bowls and the colourful and toxic concoctions they distribute, they make a visit to the chemo suite quite an entertaining trip.
And finally (drum roll please, Hula dancers enter stage left and strike up the ukuleles), we have the airport lounge …sorry, I mean the reception staff, have you seen the new reception at Cheltenham? Puts Terminal 5 to shame!! They work away like little elves on a miniature paper mountain that resembles Mount Vesuvius (in this paper free society that we have). The computer screens constantly flash and ping and the phones are never left to ring and ring. They put people at ease, give directions, listen to moans and gripes, answer questions, organise replacement blood paperwork that numpty patients forgot to take home with them and realise on Friday afternoon they need first thing on Monday ….ho hum. And still they smile.
One particularly smiler can be mentioned by name (’cos I asked!). I think, going on the twinkle in her eye that she’s also a secret bad fairy. Not related you understand, but made from a similar mould, she’d probably tell you she’s the Mark 2 version with me being the experimental model!
She was the first person I met at Cheltenham hospital, by virtue of the fact she was sat at the reception desk where I had to check in. What a welcome to this strange new world. She smiled. Without saying a word she let me know that it was ok to be me and not put on my “library” face. What a weight that was lifted off my shoulders. Pippa hasn’t had a lot to smile about herself lately and yet she still manages it. She gives smiles away for free. When I’m no longer visiting the hospital, Pippa will be one of those memories that will reassure Mr BF and, in particular, the junior bad fairies that there are some wonderful people in this world who made what could be a depressing time, quite cheerful and full of those all important smiles. Thank you Pippa. I’ll raise a glass of Cheeky Vimto to you and suffer the consequences for the next week … but you’re worth it!!
“A Smile costs nothing, but gives much
It enriches those who receive, without making poorer those who give
It takes but a moment, but the memory of it sometimes lasts forever
None is so rich or mighty that he can get along without it,
and none is so poor, but that he can be made rich by it
A Smile creates happiness in the home, fosters good will in business,
and is the countersign of friendship
It brings rest to the weary, cheer to the discouraged, sunshine to the sad,
and it is nature’s best antidote for trouble.
Yet it cannot be bought, begged, borrowed, or stolen,
for it is something that is of no value to anyone, until it is given away
Some people are too tired to give you a smile;
Give them one of yours, as none needs a smile so much as he who has no more to give.”
Now….how many smiler recruits can I rustle up today?
"Red Devil" unleashed ....
…..and a new red bucket list toy!
Miniscule red devils are marauding through my veins doing battle as I type. Hopefully they’re tackling those nasty, sneaky cancer cells that have invaded the rather essential Bad Fairy liver. Only time will tell, so I’m doing my bit by cheerleading from the outside willing the little devils along and dropping hints that if they’d like to avoid some of the good Bad Fairy bits it’d be much appreciated!
My marbles haven’t completely left me (although some might argue differently), “red devil” is a nickname for Adriamycin/Doxorubicin, the chemo drug of the week … and next week and a few more weeks after that.
The red devils were unleashed for the first round on Thursday. A relatively non-event, thankfully! So far so good, no sickness thanks to the copious amounts of anti-emetics. The only downside is heartburn and lots of acid, probably from the steroids. I do have some stuff (technical term!) to wipe out stomach acid but am thinking about possibly risking reducing the steroids next week to see if that helps. One hint of sickness and I’ll change my mind!!
I do wonder sometimes, I have breast cancer yet my breast tumour is rarely discussed. All discussions and concern centre around my liver. I understand completely that being a vital organ if it stops working there is no more Bad Fairy, something the breast tumour alone is unlikely to cause, or at least not in the very near future. Yet it frustrates me! Mr BF is under strict instructions that when I keel over and am no more he MUST make sure that everyone is aware that it is breast cancer that started all of this. The probability is that liver failure will take me, but labelling me as a liver failure death would be wrong and detract from the essential awareness of breast cancer research and the importance of early detection, particularly in young women in which it is harder to detect. Does that make sense or am I stamping my fairy foot for nothing?
Rant over ... soapbox returned to the corner!
And now …the new red bucket list toy. It was my 41st birthday in February and an opportunity to strike something off the bucket list couldn’t be missed.
When Mr BF and I met, I was driving around in an old tatty mini. My pride and joy and the only car I’ve ever owned that I felt really attached to. (Cars to me are usually a metal box which gets me from A to B and I was quite happy not to feel any emotions about them!)
This little mini had a pet name which was used by everyone who knew her, friends, family, mechanics, even at petrol stations. She was well loved. Anyway, Mr BF and I moved on and the first Master BF arrived. Now I’m not sure how many of you would have tried to put a rear facing baby seat into an old style mini, not an easy task I can tell you! Particularly not when four months later Miss BF had been created!! So the beloved little mini had to go for something more grown up and practical (groan!).
Since then, a new mini was put on the retirement list, for when the children were off and not requiring a taxi service on a regular basis!
But events dictate that the retirement list needed bringing forward and morphed into a bucket list.
This being a red week, I am now the proud owner of a bright red convertible Mini Cooper S ….and to top it all, Mr BF surprised me with a personalised plate which names her officially with the Fairy household pet name for my minis!
Now I just need sunshine …!!!
Miniscule red devils are marauding through my veins doing battle as I type. Hopefully they’re tackling those nasty, sneaky cancer cells that have invaded the rather essential Bad Fairy liver. Only time will tell, so I’m doing my bit by cheerleading from the outside willing the little devils along and dropping hints that if they’d like to avoid some of the good Bad Fairy bits it’d be much appreciated!
My marbles haven’t completely left me (although some might argue differently), “red devil” is a nickname for Adriamycin/Doxorubicin, the chemo drug of the week … and next week and a few more weeks after that.
The red devils were unleashed for the first round on Thursday. A relatively non-event, thankfully! So far so good, no sickness thanks to the copious amounts of anti-emetics. The only downside is heartburn and lots of acid, probably from the steroids. I do have some stuff (technical term!) to wipe out stomach acid but am thinking about possibly risking reducing the steroids next week to see if that helps. One hint of sickness and I’ll change my mind!!
I do wonder sometimes, I have breast cancer yet my breast tumour is rarely discussed. All discussions and concern centre around my liver. I understand completely that being a vital organ if it stops working there is no more Bad Fairy, something the breast tumour alone is unlikely to cause, or at least not in the very near future. Yet it frustrates me! Mr BF is under strict instructions that when I keel over and am no more he MUST make sure that everyone is aware that it is breast cancer that started all of this. The probability is that liver failure will take me, but labelling me as a liver failure death would be wrong and detract from the essential awareness of breast cancer research and the importance of early detection, particularly in young women in which it is harder to detect. Does that make sense or am I stamping my fairy foot for nothing?
Rant over ... soapbox returned to the corner!
And now …the new red bucket list toy. It was my 41st birthday in February and an opportunity to strike something off the bucket list couldn’t be missed.
When Mr BF and I met, I was driving around in an old tatty mini. My pride and joy and the only car I’ve ever owned that I felt really attached to. (Cars to me are usually a metal box which gets me from A to B and I was quite happy not to feel any emotions about them!)
This little mini had a pet name which was used by everyone who knew her, friends, family, mechanics, even at petrol stations. She was well loved. Anyway, Mr BF and I moved on and the first Master BF arrived. Now I’m not sure how many of you would have tried to put a rear facing baby seat into an old style mini, not an easy task I can tell you! Particularly not when four months later Miss BF had been created!! So the beloved little mini had to go for something more grown up and practical (groan!).
Since then, a new mini was put on the retirement list, for when the children were off and not requiring a taxi service on a regular basis!
But events dictate that the retirement list needed bringing forward and morphed into a bucket list.
This being a red week, I am now the proud owner of a bright red convertible Mini Cooper S ….and to top it all, Mr BF surprised me with a personalised plate which names her officially with the Fairy household pet name for my minis!
Now I just need sunshine …!!!
An update....
... on the medical front.
For those who have risked looking in for the first time, a brief summary of my treatment so far. Weekly Taxol chemo from July to November last year which did a wonderful job of shrinking the tumours. December to February this year I've been on Arimidex (hormone therapy). A CT scan at the end of February showed that the Arimidex had done nothing and the time spent on it has allowed the tumours to progress again.
So next week it's back on to weekly chemo for me but this time on Doxorubicin as fairy dust is out of stock!
On the plus side, the Doxorubicin is bright red (my favourite colour) .... ok clutching at straws on the plus side but every little helps!
For those who have risked looking in for the first time, a brief summary of my treatment so far. Weekly Taxol chemo from July to November last year which did a wonderful job of shrinking the tumours. December to February this year I've been on Arimidex (hormone therapy). A CT scan at the end of February showed that the Arimidex had done nothing and the time spent on it has allowed the tumours to progress again.
So next week it's back on to weekly chemo for me but this time on Doxorubicin as fairy dust is out of stock!
On the plus side, the Doxorubicin is bright red (my favourite colour) .... ok clutching at straws on the plus side but every little helps!
A woman's prerogative...
.... to change her mind!
Hrmph ... well, the last blog about first impressions was dated 2nd of the month and today is the 21st. That'll be nineteen days later, or two weeks and five days depending on how you want to look at it.
No, I haven't become obsessed with my calendar, nor am I conducting a countdown to some forthcoming extravagant event. I'm simply counting the days until my new found friend, or advocate as she likes to be thought of, the BCN (star of the previous blog) makes the return phone call she promised. It was due on the 3rd.
All I can say is it's a good job I knew not to rely on her and have the wherewithall to go out, ask questions and demand answers for myself.
Hrmph ... well, the last blog about first impressions was dated 2nd of the month and today is the 21st. That'll be nineteen days later, or two weeks and five days depending on how you want to look at it.
No, I haven't become obsessed with my calendar, nor am I conducting a countdown to some forthcoming extravagant event. I'm simply counting the days until my new found friend, or advocate as she likes to be thought of, the BCN (star of the previous blog) makes the return phone call she promised. It was due on the 3rd.
All I can say is it's a good job I knew not to rely on her and have the wherewithall to go out, ask questions and demand answers for myself.
First impressions count....
…. but aren’t always right!
Hands up … who amongst us judges others on their first impression of them? If we’re honest I think we all do to some extent.
I should know not to really, considering I have great fun changing the impressions people make of me!
Roll back the clock to diagnosis day. Everything happened backwards anyway, secondaries were diagnosed first, the next day the primary was confirmed and then in to the office of the last person to be introduced, the Breast Care Nurse (BCN).
For the past six months I’ve wondered if I was just unlucky. Everyone has raved about the BCN allocated to them. How helpful they are, understanding, always on the end of the phone. That first day, Mr BF and I sat opposite a specialist nurse, there to help us process and deal with the horrendous diagnosis and prognosis that had just landed in our laps and she had tears in her eyes when there were none in ours! The “helpful” literature presented to us was useless and only served to reinforce the message that I had bypassed the hoped for intervening “healthy” years between primary and secondary diagnosis. Didn’t this nurse understand what a secondary diagnosis meant? I guess she did, why else were the tears there? Surely this wasn’t how every new patient was received?
Shove the clock forward again to last week and there’s me, sat at the kitchen table with a friend, enjoying a cup of tea and a fair bit of chattering! It just so happens that this friend is a doctor. For whatever reason the conversation turned to nurses, specialist nurses in particular and how Dr. M thought that they were quite useful people particularly when things needed doing and questions needed answering. The story was told of the teary eyed BCN. Now Dr M is a straight talker if ever I saw one and a very competent doctor. She’s also a wife and mum and an incredibly caring person. She asked how I feel when her eyes fill up. Well that’s ok isn’t it? She’s a friend first and foremost, she knows me well and knows my family. I can accept and understand if her eyes fill up! Then she added that on occasion she has shed a tear for a patient, touched by their story or situation. No different to reading a book, watching a film or listening to music ….we can all find ourselves filling up at unexpected moments.
Now I feel guilty. I’ve judged this nurse because she is human. What right do I have to decide that because the nurse had shown her emotions that she was somehow less able to do her job? How do I know what has happened in her life that may have affected her that day?
With Dr M’s words swimming about in my head, I buried my first impressions and telephoned the nurse. After apologising profusely about possibly giving her the impression that her help and advice weren’t welcome we started again.
I now understand the role she is willing and able to play in my life. She now knows that my acceptance of my situation and fate is genuine and not a state of hysteric denial.
We will work together from here on in. As she said, she is officially my advocate and will do all she can to assist me. I suppose that makes me officially her patient …. I hope she isn’t expecting a model one!!
First impressions do count but there’s no shame in changing your opinion!
Hands up … who amongst us judges others on their first impression of them? If we’re honest I think we all do to some extent.
I should know not to really, considering I have great fun changing the impressions people make of me!
Roll back the clock to diagnosis day. Everything happened backwards anyway, secondaries were diagnosed first, the next day the primary was confirmed and then in to the office of the last person to be introduced, the Breast Care Nurse (BCN).
For the past six months I’ve wondered if I was just unlucky. Everyone has raved about the BCN allocated to them. How helpful they are, understanding, always on the end of the phone. That first day, Mr BF and I sat opposite a specialist nurse, there to help us process and deal with the horrendous diagnosis and prognosis that had just landed in our laps and she had tears in her eyes when there were none in ours! The “helpful” literature presented to us was useless and only served to reinforce the message that I had bypassed the hoped for intervening “healthy” years between primary and secondary diagnosis. Didn’t this nurse understand what a secondary diagnosis meant? I guess she did, why else were the tears there? Surely this wasn’t how every new patient was received?
Shove the clock forward again to last week and there’s me, sat at the kitchen table with a friend, enjoying a cup of tea and a fair bit of chattering! It just so happens that this friend is a doctor. For whatever reason the conversation turned to nurses, specialist nurses in particular and how Dr. M thought that they were quite useful people particularly when things needed doing and questions needed answering. The story was told of the teary eyed BCN. Now Dr M is a straight talker if ever I saw one and a very competent doctor. She’s also a wife and mum and an incredibly caring person. She asked how I feel when her eyes fill up. Well that’s ok isn’t it? She’s a friend first and foremost, she knows me well and knows my family. I can accept and understand if her eyes fill up! Then she added that on occasion she has shed a tear for a patient, touched by their story or situation. No different to reading a book, watching a film or listening to music ….we can all find ourselves filling up at unexpected moments.
Now I feel guilty. I’ve judged this nurse because she is human. What right do I have to decide that because the nurse had shown her emotions that she was somehow less able to do her job? How do I know what has happened in her life that may have affected her that day?
With Dr M’s words swimming about in my head, I buried my first impressions and telephoned the nurse. After apologising profusely about possibly giving her the impression that her help and advice weren’t welcome we started again.
I now understand the role she is willing and able to play in my life. She now knows that my acceptance of my situation and fate is genuine and not a state of hysteric denial.
We will work together from here on in. As she said, she is officially my advocate and will do all she can to assist me. I suppose that makes me officially her patient …. I hope she isn’t expecting a model one!!
First impressions do count but there’s no shame in changing your opinion!
Alternative suggestions for ....
…… stress relief!
We’ve all read about it, all no doubt thought about it and now we’re going to deal with it. Stress. It’s perfectly natural to be stressed at various points in life and no doubt, in small doses, stress can be quite healthy. In bigger doses most of us would agree that it’s unhealthy. What I want to know is how to relieve stress when it builds up to volcanic levels, any ideas?
I can do the meditation stuff, focus on my breathing and all that but you do get some strange looks if you plonk yourself down in the middle of the freezer aisle in the supermarket after suffering the latest episode of inconsiderate trolley driving to focus on your breathing.
Driving I used to find quite a focussing and enjoyable stress reliever. Due to having numb toes and crunchy joints this has been pushed down the list. I need to concentrate like a learner on the pedals these days and cheerfully remind the children how much it would cost for a similar ride experience at a theme park!
Meaningful debates …. nope … off the list too. When you’re regularly beaten in an exchange of words by a quick witted seven year old you have to accept that the chemo fog hasn’t quite lifted yet.
A gentle stroll through the field with the dogs, that fell of the list ages ago … probably around the time of Labrador Jnr’s arrival. He just isn’t designed for stress relief no matter how much I squint and hop on one leg when trying to convince myself that he is that cute loo roll puppy.
I need some new ideas, preferably enjoyable stress relievers, if a giggle can be raised then that’s even better. So far my “To Try” list is limited so all suggestions are welcome, serious and amusing.
Top of the list at this point is a bit of Greek dancing ….. the sort accompanied by lots of plate smashing!
We’ve all read about it, all no doubt thought about it and now we’re going to deal with it. Stress. It’s perfectly natural to be stressed at various points in life and no doubt, in small doses, stress can be quite healthy. In bigger doses most of us would agree that it’s unhealthy. What I want to know is how to relieve stress when it builds up to volcanic levels, any ideas?
I can do the meditation stuff, focus on my breathing and all that but you do get some strange looks if you plonk yourself down in the middle of the freezer aisle in the supermarket after suffering the latest episode of inconsiderate trolley driving to focus on your breathing.
Driving I used to find quite a focussing and enjoyable stress reliever. Due to having numb toes and crunchy joints this has been pushed down the list. I need to concentrate like a learner on the pedals these days and cheerfully remind the children how much it would cost for a similar ride experience at a theme park!
Meaningful debates …. nope … off the list too. When you’re regularly beaten in an exchange of words by a quick witted seven year old you have to accept that the chemo fog hasn’t quite lifted yet.
A gentle stroll through the field with the dogs, that fell of the list ages ago … probably around the time of Labrador Jnr’s arrival. He just isn’t designed for stress relief no matter how much I squint and hop on one leg when trying to convince myself that he is that cute loo roll puppy.
I need some new ideas, preferably enjoyable stress relievers, if a giggle can be raised then that’s even better. So far my “To Try” list is limited so all suggestions are welcome, serious and amusing.
Top of the list at this point is a bit of Greek dancing ….. the sort accompanied by lots of plate smashing!
All I want is ....
... is my bubble back!
It's gone. Don't know where but I wish it would come back. Maybe it hasn't gone completely and is just deflated and sulking under the sofa or something. But I want it back please.
It's a very useful bubble. Some days it's a bouncy hopper type bubble and we just bound through life together. Other days it becomes lots of little bubbles that fizz around and keep me laughing. Occasionally my bubble acts as a cushion and takes the edge of the not so nice stuff that happens.
The one I like the most is the gentle bubble bit. Not over the top and not always noticeable to others, the little bubbly bits that are me and are just accepted as me. The ones that help me chatter cheerfully, that make me chuckle about silly things. The bubble that stops me sitting in a corner with a blanket over my head wishing this merry-go-round would stop and I could get off.
So if you see a stray bubble with my name on, please return it. In the mean time I've added a bubble to my wish list in the hope that someone might have a new one for me ..... failing that a puncture repair kit would do just in case it is sulking under the sofa after a run in with the resident house cat!
It's gone. Don't know where but I wish it would come back. Maybe it hasn't gone completely and is just deflated and sulking under the sofa or something. But I want it back please.
It's a very useful bubble. Some days it's a bouncy hopper type bubble and we just bound through life together. Other days it becomes lots of little bubbles that fizz around and keep me laughing. Occasionally my bubble acts as a cushion and takes the edge of the not so nice stuff that happens.
The one I like the most is the gentle bubble bit. Not over the top and not always noticeable to others, the little bubbly bits that are me and are just accepted as me. The ones that help me chatter cheerfully, that make me chuckle about silly things. The bubble that stops me sitting in a corner with a blanket over my head wishing this merry-go-round would stop and I could get off.
So if you see a stray bubble with my name on, please return it. In the mean time I've added a bubble to my wish list in the hope that someone might have a new one for me ..... failing that a puncture repair kit would do just in case it is sulking under the sofa after a run in with the resident house cat!
I like my teeth ....
...... and I wasn't ready to part company with them!
No, I wasn't about to join the local rugby team, not even the ladies one! This is the story of the hospital's one and only attempt to perform an endoscopy on me. Somehow I don't think they'll bother trying again!!
It has to be said the hospital porter was lovely, very chatty and cheerful as we whizzed along the corridors. On arrival in the sparkling new endoscopy suite the welcoming committee were nice and cheerful too. Lots of reassurances and "over in a flash" type comments. Then the consultant arrived and quick introductions made. That's when it all started going wrong.
I was originally referred to this consultant but as I needed seeing urgently and he was on two weeks holiday I was referred to another consultant. Not a problem in itself but why was he here now and about to stick a camera down my throat when he should be on holiday? So I asked. Maybe it came out as gobbledegook but my question went unanswered and I was wheeled into his lair.
Standing there was a miniature nurse, ok she wasn't miniature but she was little! She wasn't much taller than me and I was lying on a hospital bed. Nice calm words about the sedative going in and blah blah blah ...........then miniature nurse tried to do some unexpected dental work on my gnashers.
Now I'm quite fond of my gnashers, we've been through a lot together, like the day when I was seven and tried to knock all of them out on the playground. (My mum cried. Interestingly she didn't cry when I came home from the park with a gaping hole in my scalp!) I'm now the proud owner of some long standing crowns and a number of character defining chips and cracks. In my hazy, sedated mind miniature nurse was trying to push my prized and superglued front teeth down my throat with great force aided by a piece of black plastic. Well I wasn't having that, so in good Bad Fairy fashion I put up a fight and tried to move the black plastic weapon away. I'm sure I tried politely and calmly to indicate that I'd prefer her not to ram the offending bit of plastic quite so hard against my teeth but it seems that the message didn't come across like that. Mr Consultant didn't want to risk his expensive camera ending up a mangled mess so called a halt to the proceedings.....miniature nurse agreed (well she would wouldn't she?)
As revenge they left me as "nil by mouth" for the next 24 hours .......grrrrrrr!!!!
For anyone who hasn't had the pleasure of an endoscopy, they put a plastic guard in your mouth. It has a lip at the front which stays on the outside of your teeth and the rest lies inside your mouth to guide the camera down whilst protecting the camera from any inadvertent bites!
No, I wasn't about to join the local rugby team, not even the ladies one! This is the story of the hospital's one and only attempt to perform an endoscopy on me. Somehow I don't think they'll bother trying again!!
It has to be said the hospital porter was lovely, very chatty and cheerful as we whizzed along the corridors. On arrival in the sparkling new endoscopy suite the welcoming committee were nice and cheerful too. Lots of reassurances and "over in a flash" type comments. Then the consultant arrived and quick introductions made. That's when it all started going wrong.
I was originally referred to this consultant but as I needed seeing urgently and he was on two weeks holiday I was referred to another consultant. Not a problem in itself but why was he here now and about to stick a camera down my throat when he should be on holiday? So I asked. Maybe it came out as gobbledegook but my question went unanswered and I was wheeled into his lair.
Standing there was a miniature nurse, ok she wasn't miniature but she was little! She wasn't much taller than me and I was lying on a hospital bed. Nice calm words about the sedative going in and blah blah blah ...........then miniature nurse tried to do some unexpected dental work on my gnashers.
Now I'm quite fond of my gnashers, we've been through a lot together, like the day when I was seven and tried to knock all of them out on the playground. (My mum cried. Interestingly she didn't cry when I came home from the park with a gaping hole in my scalp!) I'm now the proud owner of some long standing crowns and a number of character defining chips and cracks. In my hazy, sedated mind miniature nurse was trying to push my prized and superglued front teeth down my throat with great force aided by a piece of black plastic. Well I wasn't having that, so in good Bad Fairy fashion I put up a fight and tried to move the black plastic weapon away. I'm sure I tried politely and calmly to indicate that I'd prefer her not to ram the offending bit of plastic quite so hard against my teeth but it seems that the message didn't come across like that. Mr Consultant didn't want to risk his expensive camera ending up a mangled mess so called a halt to the proceedings.....miniature nurse agreed (well she would wouldn't she?)
As revenge they left me as "nil by mouth" for the next 24 hours .......grrrrrrr!!!!
For anyone who hasn't had the pleasure of an endoscopy, they put a plastic guard in your mouth. It has a lip at the front which stays on the outside of your teeth and the rest lies inside your mouth to guide the camera down whilst protecting the camera from any inadvertent bites!
Talking to children ...
….about cancer.
How do we do it? It’s hard enough sometimes talking to adults and explaining things but children are a completely different kettle of fish.
This isn’t a text book way of talking to children when a parent has cancer, this is just our experience.
Master and Miss Bad Fairy are eight and seven. We started off explaining that things had gone wrong in my liver, as that was the obvious bit, what with me being all yellow. Children are little sponges and before long we were having discussions about anatomy and human biology around the breakfast table. Then things got confusing! How did the bad bits get there? What will the chemo do? Will it go away again? It’s so easy to forget, particularly when they ask intelligent questions, just how old they are.
In the midst of all this, Master Bad Fairy mentioned laser guns (he’s a Star Wars fanatic) and there the story began which enabled them to “see” what was happening in a way which they felt comfortable with.
The bad bits were made from little black lego bricks which kept building walls. The chemo put some “goodies” into me (think lego versions of Luke Skywalker) and the “goodies” charged around inside my body blasting the bad bits with their laser guns! They get gentle reminders that the bad bits will be here forever and that the laser guns will run out of power and we’ll have to try new ones. For the time being they’re happy with that.
We’ve also taken them with us to the hospital so they can see where I get treated. They’ve met a couple of the chemo nurses, been a big hit with the receptionist, had a very close inspection of blood being taken (I’d offered them the chance to sit outside … but no, they wanted to see!) and a tour of the ct scanner. With the amazing powers of imagination that children have the fear of the unknown can be immense. Now they don’t worry when I have to go to the hospital because they know where I’ll be and who I’ll see.
The one thing we’ve promised them is that we will tell them whenever we’re told anything new. The most important thing, I think, is that they know they can ask anything at anytime and we will always have the time to sit and listen to their thoughts and fears.
How do we do it? It’s hard enough sometimes talking to adults and explaining things but children are a completely different kettle of fish.
This isn’t a text book way of talking to children when a parent has cancer, this is just our experience.
Master and Miss Bad Fairy are eight and seven. We started off explaining that things had gone wrong in my liver, as that was the obvious bit, what with me being all yellow. Children are little sponges and before long we were having discussions about anatomy and human biology around the breakfast table. Then things got confusing! How did the bad bits get there? What will the chemo do? Will it go away again? It’s so easy to forget, particularly when they ask intelligent questions, just how old they are.
In the midst of all this, Master Bad Fairy mentioned laser guns (he’s a Star Wars fanatic) and there the story began which enabled them to “see” what was happening in a way which they felt comfortable with.
The bad bits were made from little black lego bricks which kept building walls. The chemo put some “goodies” into me (think lego versions of Luke Skywalker) and the “goodies” charged around inside my body blasting the bad bits with their laser guns! They get gentle reminders that the bad bits will be here forever and that the laser guns will run out of power and we’ll have to try new ones. For the time being they’re happy with that.
We’ve also taken them with us to the hospital so they can see where I get treated. They’ve met a couple of the chemo nurses, been a big hit with the receptionist, had a very close inspection of blood being taken (I’d offered them the chance to sit outside … but no, they wanted to see!) and a tour of the ct scanner. With the amazing powers of imagination that children have the fear of the unknown can be immense. Now they don’t worry when I have to go to the hospital because they know where I’ll be and who I’ll see.
The one thing we’ve promised them is that we will tell them whenever we’re told anything new. The most important thing, I think, is that they know they can ask anything at anytime and we will always have the time to sit and listen to their thoughts and fears.
It just fell off .....
..... and I didn't touch it, honest!
It would never have won any prizes or been held up as an example of perfection but I was rather attached to it. Maybe I should have paid it more attention. Lavished some time and effort to lift its self esteem. To be honest it did always look a bit like the poor cousin and never as grand or imposing as its near neighbours.
Anyway it's gone now, superglue and bodge tape won't make any difference. Yes, today I said goodbye to my little toe nail. It's a good few weeks since my last chemo (Taxol) but it held out for as long as possible.
It was attached to the only bone I've ever broken. Miss Bad Fairy and I had a skipping incident a couple of years ago. (Is skipping covered by 'elf n safety? If not then it should be!) My little toe was the only casualty. It was strapped up very elegantly and spent a good couple of weeks fixing itself admirably until one of my dogs lolloped in and promptly sat on it. Have you ever seen a GP rolling on the floor laughing?
It would never have won any prizes or been held up as an example of perfection but I was rather attached to it. Maybe I should have paid it more attention. Lavished some time and effort to lift its self esteem. To be honest it did always look a bit like the poor cousin and never as grand or imposing as its near neighbours.
Anyway it's gone now, superglue and bodge tape won't make any difference. Yes, today I said goodbye to my little toe nail. It's a good few weeks since my last chemo (Taxol) but it held out for as long as possible.
It was attached to the only bone I've ever broken. Miss Bad Fairy and I had a skipping incident a couple of years ago. (Is skipping covered by 'elf n safety? If not then it should be!) My little toe was the only casualty. It was strapped up very elegantly and spent a good couple of weeks fixing itself admirably until one of my dogs lolloped in and promptly sat on it. Have you ever seen a GP rolling on the floor laughing?
I feel lucky .....
.... lucky to have been diagnosed with secondary cancer?
We are forever reminded of the uncertainty of life and the fact that life can end unexpectedly at any age. I've had an advanced warning. That advanced warning has prompted me to look at my life and appreciate all of the good things in it, something I may not have had the opportunity to do had I plodded on assuming that I'd live for a long time. So I am lucky!
Lucky to have a wonderful and gorgeous husband. The fact he leaves his socks on the bathroom floor is no longer something I nag about. It's not important. I love spending time with him, just being in the same room makes me feel contented and happy.
Lucky to have two amazing and beautiful children. They make me smile when I least feel like it. They fascinate me with their observations and thoughts. The world is an enchanting place when seen through the eyes of a child!
Lucky to have such brilliant friends and family.
The list could go on but I'll stop there. I'm lucky, despite and because of the cancer. All of these things were there before but now I look at them and appreciate every last little bit of them. More importantly, I feel, I have the opportunity to let these important people know how lucky I feel to have them as part of my life.
We are forever reminded of the uncertainty of life and the fact that life can end unexpectedly at any age. I've had an advanced warning. That advanced warning has prompted me to look at my life and appreciate all of the good things in it, something I may not have had the opportunity to do had I plodded on assuming that I'd live for a long time. So I am lucky!
Lucky to have a wonderful and gorgeous husband. The fact he leaves his socks on the bathroom floor is no longer something I nag about. It's not important. I love spending time with him, just being in the same room makes me feel contented and happy.
Lucky to have two amazing and beautiful children. They make me smile when I least feel like it. They fascinate me with their observations and thoughts. The world is an enchanting place when seen through the eyes of a child!
Lucky to have such brilliant friends and family.
The list could go on but I'll stop there. I'm lucky, despite and because of the cancer. All of these things were there before but now I look at them and appreciate every last little bit of them. More importantly, I feel, I have the opportunity to let these important people know how lucky I feel to have them as part of my life.
Friday 26 March 2010
Hair loss, the positives....
.... always look for the positives!
It seems I've taught my children well. When my long, thick and curly (some would say unruly) dark brown hair started parting company with my head we took control. Can you imagine the twinkle in the eyes of a pair of primary age children being told they can cut Mum's hair? Typical children they soon got bored but then I did say it was thick and it was hard work! Mr Bad Fairy came to the rescue when it was suitably shorn with his hair clippers and razor. Definitely not a job for children if I wanted to keep my eyebrows for as long as possible! So now for the positive side of having no hair ....
1. Save on hair products.
2. No need to unblock the shower every day.
3. Save on hair dye. Contribution courtesy of 7 year old Miss Bad Fairy. This one made me realise that over the years I must have spent over £1500 colouring my hair!! (I haven't told Mr Bad Fairy that yet!!)
3. No need to drag a nit comb through it on a regular basis. Kindly thought of by 8 year old Master Bad Fairy. I did point out that if he and his sister would refrain from rubbing heads with their school friends I wouldn't need to own a nit comb never mind use it!!
4. I would now have an understanding of Mr Bad Fairy's life. This being the latest contribution from Mr Bad Fairy after I moaned about how painful it was being hailed on with a bald head!
So there are positives afterall. ;-)
It seems I've taught my children well. When my long, thick and curly (some would say unruly) dark brown hair started parting company with my head we took control. Can you imagine the twinkle in the eyes of a pair of primary age children being told they can cut Mum's hair? Typical children they soon got bored but then I did say it was thick and it was hard work! Mr Bad Fairy came to the rescue when it was suitably shorn with his hair clippers and razor. Definitely not a job for children if I wanted to keep my eyebrows for as long as possible! So now for the positive side of having no hair ....
1. Save on hair products.
2. No need to unblock the shower every day.
3. Save on hair dye. Contribution courtesy of 7 year old Miss Bad Fairy. This one made me realise that over the years I must have spent over £1500 colouring my hair!! (I haven't told Mr Bad Fairy that yet!!)
3. No need to drag a nit comb through it on a regular basis. Kindly thought of by 8 year old Master Bad Fairy. I did point out that if he and his sister would refrain from rubbing heads with their school friends I wouldn't need to own a nit comb never mind use it!!
4. I would now have an understanding of Mr Bad Fairy's life. This being the latest contribution from Mr Bad Fairy after I moaned about how painful it was being hailed on with a bald head!
So there are positives afterall. ;-)
Thrown in the deep end....
... without a snorkel or so it felt!
After such a quick diagnosis there was no time to worry or do any scary internet research. Looking back this was probably a good thing. Mr Bad Fairy and I shed a few tears and had no choice but to move on and deal with this new life that had been forced on us. Life goes on doesn't it? Being optimists we were determined to seek out, no matter how deeply they were buried, any tiny little positive moments along with any hint of something which might raise a giggle at a later date. (See? Positive thoughts .... there will be a later date!)
So there we were meeting the oncologist for the first time on a Monday. On Wednesday I was hooked up to an IV pump having the first of ten weekly doses of Taxol. What a strange new world!
Daft as it sounds I was quite pleased to be starting this journey with my vivid yellowness. Logic says that if the chemo started to work then the tumours would shrink and the yellowness would fade. It worked! Family and friends could slowly see a difference on the outside which reflected the changes on the inside.
Nine weeks later and I was flat on my back in the CT scanner to check on progress. Yeah hey! On average an 80% reduction in tumour sizes. It was working!
The plan was to have three more doses on a three weekly cycle. The last one was cancelled and I'm now on Arimidex tablets and Zoladex implant/jabs whilst waiting for an appointment to discuss having my ovaries removed.
Another CT scan (last week) showed that things had remained unchanged except for on my bones .... bones? No one had mentioned bones before. It seems that on the previous scan there were a couple of spots on my spin but as it was a CT scan and not a bone scan it wasn't obvious what these "spots" were so they didn't tell me. Seems that on the latest scan there has been a noticeable change which could be new bone growth resulting from the effects of the chemo. This new revelation now means a three weekly trip to the chemo unit for IV Zometa to strengthen my bones.
So there you go, that's where I am (medically) today only five months into this journey! Mr Bad Fairy keeps reminding me that I never did like being predictable and that I've always been impulsive rather than taking things at a leisurely pace!!
After such a quick diagnosis there was no time to worry or do any scary internet research. Looking back this was probably a good thing. Mr Bad Fairy and I shed a few tears and had no choice but to move on and deal with this new life that had been forced on us. Life goes on doesn't it? Being optimists we were determined to seek out, no matter how deeply they were buried, any tiny little positive moments along with any hint of something which might raise a giggle at a later date. (See? Positive thoughts .... there will be a later date!)
So there we were meeting the oncologist for the first time on a Monday. On Wednesday I was hooked up to an IV pump having the first of ten weekly doses of Taxol. What a strange new world!
Daft as it sounds I was quite pleased to be starting this journey with my vivid yellowness. Logic says that if the chemo started to work then the tumours would shrink and the yellowness would fade. It worked! Family and friends could slowly see a difference on the outside which reflected the changes on the inside.
Nine weeks later and I was flat on my back in the CT scanner to check on progress. Yeah hey! On average an 80% reduction in tumour sizes. It was working!
The plan was to have three more doses on a three weekly cycle. The last one was cancelled and I'm now on Arimidex tablets and Zoladex implant/jabs whilst waiting for an appointment to discuss having my ovaries removed.
Another CT scan (last week) showed that things had remained unchanged except for on my bones .... bones? No one had mentioned bones before. It seems that on the previous scan there were a couple of spots on my spin but as it was a CT scan and not a bone scan it wasn't obvious what these "spots" were so they didn't tell me. Seems that on the latest scan there has been a noticeable change which could be new bone growth resulting from the effects of the chemo. This new revelation now means a three weekly trip to the chemo unit for IV Zometa to strengthen my bones.
So there you go, that's where I am (medically) today only five months into this journey! Mr Bad Fairy keeps reminding me that I never did like being predictable and that I've always been impulsive rather than taking things at a leisurely pace!!
The story begins ......
... towards the end of June 2009.
As happens frequently at primary schools the dreaded lergy was doing the rounds. My two children seemed to have avoided it along with myself and my husband. That was until I got up on the Monday and felt a bit queasy. Needless to say I was a bit miffed to still be feeling a bit "off" by the end of the week, usually bouncing back from these things quite quickly ... and was quite unnerved to discover a tinge of yellow in my eyes the next Monday morning. By the following Monday I looked like I was doing a very bad impression of a canary and had grown a hard lump at the top of my breast. I know the lump wasn't there the week before because I'd checked just before I noticed the yellow tinge in my eyes.
Off to the GPs I went .... after checking exactly where the surgery was being such an infrequent visitor! Little did I realise what lay ahead. I'd convinced myself that my canary yellow appearance was due to nothing more alarming than a wedged gallstone (not that I'd ever had them!) and the breast lump would be just one of those things that would go away as quickly as it appeared. Luckily for me my GP wasn't happy to leave me yellow for any length of time and arranged for an ultrasound within days and a two week referral to the breast clinic.
The ultrasound caused concern and I was admitted to the local hospital the next Monday (why is it always a Monday?) for a CT scan and an endoscopy booked for the Tuesday. The endoscopy didn't happen but that's another story for another day. The CT scan was enough and on the Thursday the liver chap mumbled, very apologetically, that it wasn't a stray gallstone it was cancer. Secondary breast cancer to be exact ... "Oh and there are a couple of bits on your lungs". Friday, a rushed appointment with the breast specialist, quick biopsy taken just to confirm they were (officially) right and then a bizarre conversation with a Breast Care Nurse (yet another story for another day!) and an appointment with an oncologist arranged for the Monday.
Where did that come from?? I'm 40, never been ill ... still don't feel ill, maybe a bit less energetic than normal but nothing to worry about and now here I am an official cancer patient who is "manageable" but not curable......
As happens frequently at primary schools the dreaded lergy was doing the rounds. My two children seemed to have avoided it along with myself and my husband. That was until I got up on the Monday and felt a bit queasy. Needless to say I was a bit miffed to still be feeling a bit "off" by the end of the week, usually bouncing back from these things quite quickly ... and was quite unnerved to discover a tinge of yellow in my eyes the next Monday morning. By the following Monday I looked like I was doing a very bad impression of a canary and had grown a hard lump at the top of my breast. I know the lump wasn't there the week before because I'd checked just before I noticed the yellow tinge in my eyes.
Off to the GPs I went .... after checking exactly where the surgery was being such an infrequent visitor! Little did I realise what lay ahead. I'd convinced myself that my canary yellow appearance was due to nothing more alarming than a wedged gallstone (not that I'd ever had them!) and the breast lump would be just one of those things that would go away as quickly as it appeared. Luckily for me my GP wasn't happy to leave me yellow for any length of time and arranged for an ultrasound within days and a two week referral to the breast clinic.
The ultrasound caused concern and I was admitted to the local hospital the next Monday (why is it always a Monday?) for a CT scan and an endoscopy booked for the Tuesday. The endoscopy didn't happen but that's another story for another day. The CT scan was enough and on the Thursday the liver chap mumbled, very apologetically, that it wasn't a stray gallstone it was cancer. Secondary breast cancer to be exact ... "Oh and there are a couple of bits on your lungs". Friday, a rushed appointment with the breast specialist, quick biopsy taken just to confirm they were (officially) right and then a bizarre conversation with a Breast Care Nurse (yet another story for another day!) and an appointment with an oncologist arranged for the Monday.
Where did that come from?? I'm 40, never been ill ... still don't feel ill, maybe a bit less energetic than normal but nothing to worry about and now here I am an official cancer patient who is "manageable" but not curable......
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