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.
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