Sunday, 21 July 2013
Coke Floats & Chemo: The Thirty Ninth Time
Coke Floats & Chemo: The Thirty Ninth Time: Awful awful, heartbreakingly dreadful week. Toby, my 19 year old who tackles life head-on like an out-of-control speeding tornado but much m...
The Thirty Ninth Time
Awful awful, heartbreakingly dreadful week. Toby, my 19 year old who tackles life head-on like an out-of-control speeding tornado but much more fun, is extremely ill and in hospital, subdued, so terribly ill, frightened and confused. Toby is also severely learning disabled, with the understanding of an average two-year-old, and with a similar level of speech - he can talk in one and two word sentences, but can only talk about the concrete real things in absolute terms, feelings, abstract concepts and the if, buts, maybes and perhaps of the world are completely beyond his comprehension.
I thought having cancer was tough, but this is so much tougher. Toby is the only person they can find in the whole world who has his particular medical condition, so there is no expertise, no research, no cutting edge treatments, no tried-and-tested treatment protocols that his medical team can facilitate to make him better.
Toby has a long history of baffling the medical profession. When he was little, we spent
most of his first 6 years in hospital, across 38 separate emergency admissions. He would just get progressively sicker and sicker. While the team in charge of his care tried everything they could think of to make him better, I would watch him slipping away by the hour. It was always a race against time, and Toby took us to the very edge over and over again. During each of his 38 admissions, there was at least one crisis point when no one expected him to survive. Each time, from somewhere, he found the Herculean strength to turn the corner at the very last minute, but there were never any guarantees that he would do it every time.
It's been well over 10 years since we last had a life-threatening emergency with him, everyone thought it was a thing of the past, but you know, I've never been able to take my eye off the ball with him, every morning all through his life I just hope that he'll still be well by the evening.
Now we're back in the same place, watching and waiting and hoping and praying that he can turn it around one more time. He has now been in hospital since Tuesday, and we are watching him deteriorate by the hour all over again. It's like he was at the top of a very long, steep slope and he's hurtling towards the bottom at a terrifying speed, and they still can't find out what's wrong with him. Unless they can catch him while he's falling, and push him back up the slope with the right treatment very soon, in a day or two he's going to be in real trouble. At the rate he's going, and based on previous experience from all those years ago, I reckon by Wednesday he will be in intensive care on a ventilator, or Heaven forbid, even worse.
Being Toby's mother has always been a very frightening and lonely experience. Over his early years, by default I became his expert, and I could always see, way before the doctors could tell from his clinical signs, just how much trouble he was in and what was needed to reverse it. Toby's clinical signs are completely at odds with everyone else's, and that's just part of his condition, but it takes a very special doctor to be confident enough to go against everything they have been taught and disregard the findings of blood tests, X-rays and all the other test results. It's also hard for a mother to convey medical knowledge and experience to a new medical team without coming across as neurotic, or pushy or just downright mad. It often felt that they were looking for a needle in a haystack, by laboriously ticking off one by one the 100 tasks on a checklist. They'd be on Number seven or eight, and I would have rushed ahead and found it at about Number 83, shouting "look, here it is, come and get it". They would not be able to grasp that someone completely without medical training has found it so quickly and easily, so either I must be fibbing or a complete loopy-loon.
Eventually they would get there, and I would say, "But I told you that 2 weeks ago". The number of times I had very senior Paediatricians apologising that I hadn't been taken seriously eventually paid off, and they listened. Sometimes that was scary too. Always before I took him to hospital I would have tried every trick in the book I could think of the reverse the onset of illness, and when I was completely stumped I'd want them to have all the answers. When they instead say "And Mum, what do you think we should do first?" it can be quite daunting.
This time around it's the first time he has ever been in the adult part of the hospital. New doctors, new nurses, new ways of doing things, new protocols, it's all a huge learning curve for me, and of course, for the doctors. My biggest fear was that they would simply not entertain an "adult" being allowed to have someone with him around the clock to comfort his distress, advocate for him, and to keep him safe. On that score they have been marvellous. The hospital now has a specialist Leaning Disability Liaison Team, and quite by chance, two of the four-strong team have worked with Toby in the past and love him to bits. (You would need to know Toby to understand this - everyone who is open to getting to know him ends up loving him to bits, because he is so hilariously witty in a very slapstick way, so gregariously loving to everyone, and he has more personality and character than virtually anyone else you'll ever meet!). They have managed to install a recliner chair by his bed for someone to sleep on, they have acquired a parking permit for us, they have even managed to ensure we get teas and coffees offered to us on the same basis as patients. They have firmly established that we are not Toby's Visitors, we are Toby's Carers, or what I prefer to call us, "Toby's Team".
I can't thank my fellow members of the Toby Team enough. There are 9 of us altogether, and between us we are with Toby right around the clock, family and friends that are trying to let Toby understand that he is not alone during this horrible time.
I'm out of practice at knowing exactly what's wrong with him, and how to treat it, but I've got a fair idea which I've shared as gently as I can. This new team are as committed, caring and on-the-case as you could hope for, but I have to respect that they are on a steep learning curve too - Toby is as frightening and new to them as they are to us. They are well on the way down their checklist, and let's just hope they reach the right needle in the haystack in time.
Here are some pictures of Toby, amazingly all 5 of them taken this week. Monday evening he was so well, and so handsome in his new suit and bow tie at his very last ever school Prize-giving evening. By the middle of that night, he was on his way down. The last photo of Toby was taken on Wednesday morning, just 36 hours later, all happening so heartbreakingly quickly.
Any prayers or loving thoughts sent in Toby's direction right now would be so gratefully received, thank you.
I thought having cancer was tough, but this is so much tougher. Toby is the only person they can find in the whole world who has his particular medical condition, so there is no expertise, no research, no cutting edge treatments, no tried-and-tested treatment protocols that his medical team can facilitate to make him better.
Toby has a long history of baffling the medical profession. When he was little, we spent
most of his first 6 years in hospital, across 38 separate emergency admissions. He would just get progressively sicker and sicker. While the team in charge of his care tried everything they could think of to make him better, I would watch him slipping away by the hour. It was always a race against time, and Toby took us to the very edge over and over again. During each of his 38 admissions, there was at least one crisis point when no one expected him to survive. Each time, from somewhere, he found the Herculean strength to turn the corner at the very last minute, but there were never any guarantees that he would do it every time.
It's been well over 10 years since we last had a life-threatening emergency with him, everyone thought it was a thing of the past, but you know, I've never been able to take my eye off the ball with him, every morning all through his life I just hope that he'll still be well by the evening.
Now we're back in the same place, watching and waiting and hoping and praying that he can turn it around one more time. He has now been in hospital since Tuesday, and we are watching him deteriorate by the hour all over again. It's like he was at the top of a very long, steep slope and he's hurtling towards the bottom at a terrifying speed, and they still can't find out what's wrong with him. Unless they can catch him while he's falling, and push him back up the slope with the right treatment very soon, in a day or two he's going to be in real trouble. At the rate he's going, and based on previous experience from all those years ago, I reckon by Wednesday he will be in intensive care on a ventilator, or Heaven forbid, even worse.
Being Toby's mother has always been a very frightening and lonely experience. Over his early years, by default I became his expert, and I could always see, way before the doctors could tell from his clinical signs, just how much trouble he was in and what was needed to reverse it. Toby's clinical signs are completely at odds with everyone else's, and that's just part of his condition, but it takes a very special doctor to be confident enough to go against everything they have been taught and disregard the findings of blood tests, X-rays and all the other test results. It's also hard for a mother to convey medical knowledge and experience to a new medical team without coming across as neurotic, or pushy or just downright mad. It often felt that they were looking for a needle in a haystack, by laboriously ticking off one by one the 100 tasks on a checklist. They'd be on Number seven or eight, and I would have rushed ahead and found it at about Number 83, shouting "look, here it is, come and get it". They would not be able to grasp that someone completely without medical training has found it so quickly and easily, so either I must be fibbing or a complete loopy-loon.
Eventually they would get there, and I would say, "But I told you that 2 weeks ago". The number of times I had very senior Paediatricians apologising that I hadn't been taken seriously eventually paid off, and they listened. Sometimes that was scary too. Always before I took him to hospital I would have tried every trick in the book I could think of the reverse the onset of illness, and when I was completely stumped I'd want them to have all the answers. When they instead say "And Mum, what do you think we should do first?" it can be quite daunting.
This time around it's the first time he has ever been in the adult part of the hospital. New doctors, new nurses, new ways of doing things, new protocols, it's all a huge learning curve for me, and of course, for the doctors. My biggest fear was that they would simply not entertain an "adult" being allowed to have someone with him around the clock to comfort his distress, advocate for him, and to keep him safe. On that score they have been marvellous. The hospital now has a specialist Leaning Disability Liaison Team, and quite by chance, two of the four-strong team have worked with Toby in the past and love him to bits. (You would need to know Toby to understand this - everyone who is open to getting to know him ends up loving him to bits, because he is so hilariously witty in a very slapstick way, so gregariously loving to everyone, and he has more personality and character than virtually anyone else you'll ever meet!). They have managed to install a recliner chair by his bed for someone to sleep on, they have acquired a parking permit for us, they have even managed to ensure we get teas and coffees offered to us on the same basis as patients. They have firmly established that we are not Toby's Visitors, we are Toby's Carers, or what I prefer to call us, "Toby's Team".
I can't thank my fellow members of the Toby Team enough. There are 9 of us altogether, and between us we are with Toby right around the clock, family and friends that are trying to let Toby understand that he is not alone during this horrible time.
I'm out of practice at knowing exactly what's wrong with him, and how to treat it, but I've got a fair idea which I've shared as gently as I can. This new team are as committed, caring and on-the-case as you could hope for, but I have to respect that they are on a steep learning curve too - Toby is as frightening and new to them as they are to us. They are well on the way down their checklist, and let's just hope they reach the right needle in the haystack in time.
Here are some pictures of Toby, amazingly all 5 of them taken this week. Monday evening he was so well, and so handsome in his new suit and bow tie at his very last ever school Prize-giving evening. By the middle of that night, he was on his way down. The last photo of Toby was taken on Wednesday morning, just 36 hours later, all happening so heartbreakingly quickly.
 |
| Too excited to look at the camera |
 |
| He was loving the applause |
 |
| So many certificates too |
 |
| Looking at his "Leavers Book" with his brother, Adam |
Any prayers or loving thoughts sent in Toby's direction right now would be so gratefully received, thank you.
Tuesday, 2 July 2013
Coke Floats & Chemo: Not doing cancer properly
Coke Floats & Chemo: Not doing cancer properly: A thick cloud of overwhelmedness has hidden me away from a lot of reality over the past few weeks. Some sort of mini-hibernation, where I&#...
I'm not doing cancer properly
A
thick cloud of overwhelmedness has hidden me away from a lot of
reality over the past few weeks. Some sort of mini-hibernation, where
I've barely had the energy to go online, engage with friends, or cope
with anything more intellectual that the act of putting one foot in
front of the other. If you are one of many lovely people I haven't
been in touch with recently, please don't take it personally, I've
been here in body but not always in spirit. I think it's the result
of too much happening too quickly over the past year or so, and
spending the year not just fighting for my life, but also
firefighting crisis after crisis after catastrophe, with no time to
stop and process or absorb what's happening. I'm fine, but just
mentally exhausted, but I think I'm beginning to come out the other
side relatively unscathed.
I
think the whole cancer spread news has hit me harder than I wanted to
admit even to myself, and on lots of different levels. There is so
much hype and nonsense surrounding breast cancer, all that pink, all
that earnestness about awareness, and it sometimes feels as if there
is an expectation to do breast cancer “properly”, and everyone
seems to have a “breast cancer survivor” story to tell. I now
that I'm not going to be a member of the
BC Survivor's club, and that I've failed in doing it properly. It's
unspoken, and everyone is lovely, and maybe I'm totally
oversensitive, but I do detect from certain quarters a very real
sense of disappointment, as if I didn't fight hard enough, as if I've
let the side down in some way. Maybe it's coming from me rather than
other people, but there has definitely been a period of adjustment, a
few weeks trying to get my head around the enormity of it all.
Don't
worry, I've no intention of crawling into my death bed for a very
long time to come, and at no stage has anything even close to
full-blown depression threatened to knock me for six. I just needed,
and may continue to need from time to time, some quiet headspace to
catch my breath, rearrange the battle plans, pick myself up and get
going again.
And
heck, have I got going! Three weeks ago, I spoke about needle-phobia
at the NIVAS conference, and it was really well received. WM came
with me, and we were thoroughly spoilt and made to feel like VIPs,
and it was a really lovely day, not least because I was presented
with the largest bouquet of the most beautiful flowers I have ever
seen.
My gorgeous flowers
Well,
word has spread, and I've now been invited to talk to a group of
nurses at UCH, a leading London hospital, as well as to another group
of nurses at the Royal Marsden. In addition, I'm also going to be
leading Laughter Yoga sessions for staff at both the hospitals too.
Laughter
Yoga has featured quite a bit this week, I ran 3 consecutive
workshops at a local school for children with autism. The first one
was with a group of 9 and 10 year old boys, all severely autistic,
then another workshop for the staff, and finally a workshop for the
brothers and sisters of the autistic children. Three very different
sessions, adapted appropriately for each group, but each workshop
went really well, and it was so rewarding to see the autistic boys
come out of their shells and engage, and best of all, laugh long and
loud with us. I wouldn't have missed the day for the world, it left
me with feeling energised and very humbled.
We've
also got another performance of Coke Floats and Chemo on Thursday,
and it's totally sold out! I had better find a minute to revise my
lines or they'll all be clamouring for their money back. To be
honest, I'm really quite looking forward to it.
Sad
news recently is that Steve, our dog, has moved to another house
where I think he'll be more settled and happy. His new family are
very experienced dog-owners, with other dogs, a huge garden and they
live in the countryside. He was with us for four months, and we tried
everything we could, two different trainers, intensive one-to-one
residential training, Saturday morning lessons in the park with other
dogs, we even had him neutered to see if it would calm him down a
bit. Eventually it became obvious that he had picked up that I wasn't
as well as I should be, and he was becoming more and more dominant
around me. I was getting bitten several times a day, which is a
concern because I've lost lymph nodes on both sides; any tiny cut
could result in lymphodema, which is a lifelong disability. We also
had to have him on the lead all the time, even indoors, because he
was so destructive with furniture and belongings. It was a tough
decision, because he was also adorable, and sometimes I think you
fall that little bit more in love with the ones with huge
personalities who can be very naughty. We had a few very sad, tearful
days, but there wasn't really any other choice. It was my youngest
who made the decision in the end that he must go, and I was very
proud of his maturity and judgement in doing so.
My
priority has to now be to stay as well as I possibly can for as long
as I possibly can. I've concocted an “anti-cancer” recipe, and
I'm cooking it up in batches and having it for breakfast every
morning. When I can get my act together, I'll take photos as I cook
it and share the recipe here. I've put a lot of research into it, and
I've found a way to combine all the foods that seem to really work to
kick cancer cells into shape. I'm also doing Laughter Yoga every day
– laughing is incredibly good for you, releasing endorphins,
increasing oxygen intake, and boosting your immune system – as well
as drinking green tea by the gallon and forming an on-going
relationship with my exercise bike. Does anyone actually ever get to
like green tea? I loathe the stuff, but it really does work at
keeping cancer cells in their place, so it's three cups of the horrid
stuff regardless.
One thing's coming up that really is a bit exciting, but also will definitely be a bit tear-jerking poignant too. Toby is leaving school soon, and he has his leaver's ball on Friday. He was so proud to try on his new suit to wear to the ball - it's his first ever posh suit and tie, and was thrilled with it.
 |
| Toby loving trying on his new suit |
There's
so much else that's going on, mostly great stuff, but some less so.
I'd write non-stop til the week after next and bore you senseless if
I talked about everything. So, until next time, and hopefully it
won't be so long until then, please take care of yourselves and your
favourite people, and I'll do the same.
Wednesday, 5 June 2013
Coke Floats & Chemo: Ahead of the curve cancer treatment
Coke Floats & Chemo: Ahead of the curve cancer treatment: Is it just me, or are there any other champion procrastinators around? I've spent all morning doing nothing, not because I've got no...
Ahead of the curve cancer treatment
Is it just me, or are there any other champion procrastinators around? I've spent all morning doing nothing, not because I've got nothing to do, quite the reverse. It's just that when the to-do list gets so overwhelming I get panicky and overwhelmed too, so that some sort of mental paralysis sets in instead.
So, instead of sorting out the junk-crammed utility room, so appallingly cluttered that I'm risking life and limb clambering to and from the washing machine, or cooking another batch of my newly-invented concoction of cancer-healing foods, or getting the last of the admin knocked on the head, or cleaning the kitchen, or even looking over and trying to improve the speech I'm making tomorrow, I've taken the easy option, and I'm writing this instead. There is stacks more, but I'd bore the pants off you and frighten myself to death if I listed it all out here.
I intended to finish telling you about the magical week I had a couple of weeks back. So much has happened since that most of the detail is now a bit of a blur, but there is one bit of news that I'd love to share since it really is rather exciting.
Out of the blue, I had a phonecall from a senior member of my Oncology team. Basically, they are working on a theoretical cancer treatment that isn't even in clinical trials yet, and would I be interested if they were to try it out on me. If the theory is correct, and the treatment worked as they think it should, I wouldn't have incurable Grade IV Metastatic Cancer anymore. Would I be interested? What a silly question!! The lovely doctor described the treatment as being less like cutting edge, more like being ahead of the curve. It would involve a cyber knife and very precise radiotherapy, and the reason they have asked me is that my cancer is quite unusual in that I only have one area of spread, normally by the time they discover metastatic disease there are several areas of concern.
Of course I said yes. Luckily she couldn't see me, but I was actually dancing around the kitchen and punching the air too. The next step is to apply for funding, which is likely to prove very tricky. They have to make a formal application for individual funding on my behalf to the new national NHS Commissioning Body, which has only been in existence for a couple of months, having been formed since the localised Primary Care Trusts have been disbanded. When this type of funding was requested from the old PCTs, the success rate was only about 25%. With the decisions now being taken by a newly-formed body, they are likely to err on the side of caution at least initially, so I bet the odds are now even lower. The doctor explained that there's a bit of a "chicken and egg" situation around this type of funding. They don't like paying for things unless there is evidence that it works, but unless they pay for it and let the first handful of people try out these new things, they'll never get the evidence.
So, we're now in a waiting game, crossing fingers, doing kitchen good-luck dances, praying like crazy and wishing on stars. I should know by the end of next month.
Perhaps I should be grateful that life shows no signs of slowing down even a tiny bit, because being busy is excellent distraction therapy, and means that I don't have time to climb the walls.
We're in the middle of youngest son's GCSE's which is quite enough stress on its own - his college place in September is subject to him doing well in these exams and we haven't got a fall-back plan in place at all. More wishing on stars and dancing around the kitchen is obviously the only way forward at the moment.
Then Steve, our puppy,is taking much longer to learn his manners than we ever expected. Even the trainer has never met a dog quite so strong-willed and resistant to learning as Steve. He is a one-dog destruction zone and just never stops, and I'm finding it all a bit exhausting. He had his man-bits cut off last week in the hope that it might help calm him down, but it'll take three months to see if it makes a difference.
Tomorrow is a big day, up to the Russell Hotel in Central London to speak at a medical conference about needle-phobia. I've written my 30 minute speech already which took a lot of editing and rewrites, but I'm think I've now done the subject justice. It is such a crippling phobia to have, particularly if, like me, you become seriously ill. For me, the needles have been far harder to deal with than having cancer itself. I've done a lot a fascinating research to help me write the speech, and it turns out that it's one of the most prevalent phobias there is, right up there with fear of spiders and fear of heights, yet hardly anyone admits it to their medical team. Most shocking of all, researchers believe that many sufferers just don't ever get themselves in front of a doctor, and die prematurely from things that would be completely curable. The medical profession don't understand needle-phobia either, and really struggle to empathise with the depths and realities of these fears, so tomorrow is quite a big responsibility. Hardly any needle-phobics will open up and talk about it, quite understandably, because it is perceived to be such a silly, immature little fear. When I first went public on the subject I felt very vulnerable and exposed, but I'm very glad I did, if only because so many friends, acquaintances and complete strangers have felt able to voice their own fears to me for the first time ever.
Due to the simple fact that very few people will own up to being needle-phobic, there is a significant under-estimation of the number of sufferers. Researchers estimate that it could be as high as 10% of the population, yet I was speaking to someone at the Marsden last week, and she told me that in the 25 years she has worked there, I'm only the 5th needle-phobic person she has met. I'm sure there must be hundreds, if not thousands more, but they either suffer in silent torment, or they simply never turn up for treatment.
Tomorrow, on behalf of all needle-phobics, I'm getting a chance to put the subject firmly on the map. I speak first tomorrow afternoon, followed by a psychologist and then an NHS team who offer complementary therapies to their cancer patients. I'm really pleased to be getting this chance to say how it feels to be terrified of needle-driven procedures, and I'm hopeful that this will be one small step toward this condition getting better recognition among clinicians, which will hopefully lead to improved ways of dealing with patients like me.
I'd better have something clean to wear, and I'd better not break my leg in the process, so perhaps, now that I'm finishing this, the utility room will just have to be sorted.
So, instead of sorting out the junk-crammed utility room, so appallingly cluttered that I'm risking life and limb clambering to and from the washing machine, or cooking another batch of my newly-invented concoction of cancer-healing foods, or getting the last of the admin knocked on the head, or cleaning the kitchen, or even looking over and trying to improve the speech I'm making tomorrow, I've taken the easy option, and I'm writing this instead. There is stacks more, but I'd bore the pants off you and frighten myself to death if I listed it all out here.
I intended to finish telling you about the magical week I had a couple of weeks back. So much has happened since that most of the detail is now a bit of a blur, but there is one bit of news that I'd love to share since it really is rather exciting.
Out of the blue, I had a phonecall from a senior member of my Oncology team. Basically, they are working on a theoretical cancer treatment that isn't even in clinical trials yet, and would I be interested if they were to try it out on me. If the theory is correct, and the treatment worked as they think it should, I wouldn't have incurable Grade IV Metastatic Cancer anymore. Would I be interested? What a silly question!! The lovely doctor described the treatment as being less like cutting edge, more like being ahead of the curve. It would involve a cyber knife and very precise radiotherapy, and the reason they have asked me is that my cancer is quite unusual in that I only have one area of spread, normally by the time they discover metastatic disease there are several areas of concern.
Of course I said yes. Luckily she couldn't see me, but I was actually dancing around the kitchen and punching the air too. The next step is to apply for funding, which is likely to prove very tricky. They have to make a formal application for individual funding on my behalf to the new national NHS Commissioning Body, which has only been in existence for a couple of months, having been formed since the localised Primary Care Trusts have been disbanded. When this type of funding was requested from the old PCTs, the success rate was only about 25%. With the decisions now being taken by a newly-formed body, they are likely to err on the side of caution at least initially, so I bet the odds are now even lower. The doctor explained that there's a bit of a "chicken and egg" situation around this type of funding. They don't like paying for things unless there is evidence that it works, but unless they pay for it and let the first handful of people try out these new things, they'll never get the evidence.
So, we're now in a waiting game, crossing fingers, doing kitchen good-luck dances, praying like crazy and wishing on stars. I should know by the end of next month.
Perhaps I should be grateful that life shows no signs of slowing down even a tiny bit, because being busy is excellent distraction therapy, and means that I don't have time to climb the walls.
We're in the middle of youngest son's GCSE's which is quite enough stress on its own - his college place in September is subject to him doing well in these exams and we haven't got a fall-back plan in place at all. More wishing on stars and dancing around the kitchen is obviously the only way forward at the moment.
Then Steve, our puppy,is taking much longer to learn his manners than we ever expected. Even the trainer has never met a dog quite so strong-willed and resistant to learning as Steve. He is a one-dog destruction zone and just never stops, and I'm finding it all a bit exhausting. He had his man-bits cut off last week in the hope that it might help calm him down, but it'll take three months to see if it makes a difference.
Tomorrow is a big day, up to the Russell Hotel in Central London to speak at a medical conference about needle-phobia. I've written my 30 minute speech already which took a lot of editing and rewrites, but I'm think I've now done the subject justice. It is such a crippling phobia to have, particularly if, like me, you become seriously ill. For me, the needles have been far harder to deal with than having cancer itself. I've done a lot a fascinating research to help me write the speech, and it turns out that it's one of the most prevalent phobias there is, right up there with fear of spiders and fear of heights, yet hardly anyone admits it to their medical team. Most shocking of all, researchers believe that many sufferers just don't ever get themselves in front of a doctor, and die prematurely from things that would be completely curable. The medical profession don't understand needle-phobia either, and really struggle to empathise with the depths and realities of these fears, so tomorrow is quite a big responsibility. Hardly any needle-phobics will open up and talk about it, quite understandably, because it is perceived to be such a silly, immature little fear. When I first went public on the subject I felt very vulnerable and exposed, but I'm very glad I did, if only because so many friends, acquaintances and complete strangers have felt able to voice their own fears to me for the first time ever.
Due to the simple fact that very few people will own up to being needle-phobic, there is a significant under-estimation of the number of sufferers. Researchers estimate that it could be as high as 10% of the population, yet I was speaking to someone at the Marsden last week, and she told me that in the 25 years she has worked there, I'm only the 5th needle-phobic person she has met. I'm sure there must be hundreds, if not thousands more, but they either suffer in silent torment, or they simply never turn up for treatment.
Tomorrow, on behalf of all needle-phobics, I'm getting a chance to put the subject firmly on the map. I speak first tomorrow afternoon, followed by a psychologist and then an NHS team who offer complementary therapies to their cancer patients. I'm really pleased to be getting this chance to say how it feels to be terrified of needle-driven procedures, and I'm hopeful that this will be one small step toward this condition getting better recognition among clinicians, which will hopefully lead to improved ways of dealing with patients like me.
I'd better have something clean to wear, and I'd better not break my leg in the process, so perhaps, now that I'm finishing this, the utility room will just have to be sorted.
Tuesday, 28 May 2013
Coke Floats & Chemo: On stage during a magical week
Coke Floats & Chemo: On stage during a magical week: Brighton Fringe was just amazing! I remembered all my lines, and performing in front of real audiences was just electric. In each of the two...
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