I started this blog wondering what it felt like just before the bullet hit about those seconds when you realised the fatality, before you could respond to the event; well now I realise that this shock and those events work both ways...for both good and bad news!
Two weeks ago I went to find out the results of the latest PET scan. Hopeful, but afraid, trying to be strong , but resigned. What happened that afternoon stunned me into silence. I mean total, physical, emotional, spiritual all embracing silence...a vacuum of a place, isolated and pristine.
It was not the mediocre news I hoped for, nor the devastating news I expected, it was very good news. Post chemo 3 cycles, they could find no further trace of cancer in my lower body!
Say that again, how can that be, I can't believe this, you are joking, its a mistake, are you sure, what does it mean; all questions tumbling through your mind all clamouring for attention, demanding answers. Smiling faces, reassuring nods, reaffirmations, confusions and, above all, deep inside, silence.
The jigsaw had just been thrown up in the air and where the pieces fell I had no idea.
We shouted, we cried, we made calls, we sent messages, we packed and we ran off to France briefly, afraid someone would take the gift from us. And since then we can't think, can't reason, don't know whether to plan or consolidate. I am by no means in the clear, not cured, I still have to have three more chemotherapy cycles and there are still areas of uncertainty in my upper torso, but maybe, just maybe the jigsaw picture has changed.
Everyone is delighted, but uncertain how to react; is she better, can we stop worrying, so there's radio silence. Its taken me this long & post a forth chemo cycle to actually write the blog again, its as though I daren't risk saying anything, just in case I tempt fate. But is it fate or fear? Am I too anxious ? Can I, dare I even relax a little? I look reasonably well, have not lost my hair or become emaciated? Is this real?
Chemotherapy has levelled all that, knocking me back & reminding me I'm not out of the woods, just not in the deep forest. And for those I love it gives them a glimpse of those far glistening horizons, which I can't see yet, a promise or vibrant dawns and stunning sunsets.
My 'Grey Jigsaw' just got a whole lot more colourful, I need to bathe in that sunlight!
Monday 27 October 2014
Saturday 4 October 2014
Chemo Brain...well you've got to laugh
This blog, by merit of its purpose, as a post cancer journal, tends to be on the heavy side and yet there is a lighter, funnier side to the disease and its indignities.
One of the side effects of chemotherapy is what's called, even by the medics,'Chemo Brain'. This phenomena is about the response that brain makes to the influx of the various poisons which constitute the medicine that attacks the cancer cells. Generally speaking its a cross between forgetfulness, confusion, lack of orientation and a whole series of strange symptoms which make you somewhat 'befuddled'.
I had an extreme version of this when given one of the chemo drugs to which my brain reacted very strangely. I was constantly talking, loosing track of where I was, what I was talking about and talking illogically. Though I was aware of this I was unable to counter it and found my mind solving all sorts of problems and finding all sorts of hidden meanings. I was awake for two nights, not tired, but wired & could have run the country, reorganised the hospital or cured the ills of the world; none of these would have been any good, but I felt anything was possible! I sent texts that made no sense, filled in crosswords where the answers did not fit the clues & in many cases were just random letters/ not real words, to complete the grid. I kept seeing hidden meaning in things; the hospital bed adjuster had a symbol for elevating or lowering, which I really understood to represent the meaning of life & how we live it!
Then there was the early Alzheimer type response; extreme forgetfulness & lack of short term memory. The best example is when I tried to get ready for bed, a simple wash & teeth clean and the bathroom was next to my bed. It took me nearly an hour to get the things I needed together, I kept forgetting I'd got the towel and looking for it again, I mislaid the toothbrush several times even though I had it in my hand. Finally I got to the bathroom and it then took me a similar time to get that wash; I kept repeating the same action, forgetting what I had done, what was next, brain running in a loop.
This sounds nightmarish but even in my confused state was vaguely amusing and, because it was picked up by both patients & medical staff, was quickly assessed as due to one of the drugs & adjusted. But the on going 'normal' chemo brain goes on regardless and its examples are even better. Because of the lymphedema (swelling in the upper leg caused as the lymph nodes having been removed and the system is struggling to deal with the lymph drainage). Hence I was referred to the lymphedema team for advice & exercise.
Ron & I duly attended the first appointment to be greeted by an enthusiastic, rather loud specialist nurse keen to help us understand and apply knowledge to aid my condition. She prescribed some neoprene compression shorts/corsetry and specific exercises. Having shown us the actions herself for the simple movements she then explained that if Ron carried out the massages this might be more beneficial, so she demonstrated on him. Now to understand this you have to realise that there are primary groups of lymph nodes all over the body, but majorly in the neck, armpits diaphragm and groin. So, leaping behind him she explained that the object of the massage was to activate the other nodes so they took up the work of those removed. She vigorously massaged first his neck, then armpits and abdomen and we both felt sure she was about the make a grab for lower areas had it not been for Ron sitting down assuring her that he got the idea! Well we never thought we'd get that sort of treatment on the NHS!
So I took the short things and tried to wear them under trousers, with pants, but they were so hot I ended up red faced & sweating. No problem I thought I'll just wear them as shorts, it was mild weather and they were black neoprene. I voiced the idea to my husband, "Do you think it would look Ok?" and the look of amused shock crossed his face. "Don't forget love they are crutchless" was his barely audible reply, just before he burst with laughter.
Now that would have been chemo brain too far!
One of the side effects of chemotherapy is what's called, even by the medics,'Chemo Brain'. This phenomena is about the response that brain makes to the influx of the various poisons which constitute the medicine that attacks the cancer cells. Generally speaking its a cross between forgetfulness, confusion, lack of orientation and a whole series of strange symptoms which make you somewhat 'befuddled'.
I had an extreme version of this when given one of the chemo drugs to which my brain reacted very strangely. I was constantly talking, loosing track of where I was, what I was talking about and talking illogically. Though I was aware of this I was unable to counter it and found my mind solving all sorts of problems and finding all sorts of hidden meanings. I was awake for two nights, not tired, but wired & could have run the country, reorganised the hospital or cured the ills of the world; none of these would have been any good, but I felt anything was possible! I sent texts that made no sense, filled in crosswords where the answers did not fit the clues & in many cases were just random letters/ not real words, to complete the grid. I kept seeing hidden meaning in things; the hospital bed adjuster had a symbol for elevating or lowering, which I really understood to represent the meaning of life & how we live it!
Then there was the early Alzheimer type response; extreme forgetfulness & lack of short term memory. The best example is when I tried to get ready for bed, a simple wash & teeth clean and the bathroom was next to my bed. It took me nearly an hour to get the things I needed together, I kept forgetting I'd got the towel and looking for it again, I mislaid the toothbrush several times even though I had it in my hand. Finally I got to the bathroom and it then took me a similar time to get that wash; I kept repeating the same action, forgetting what I had done, what was next, brain running in a loop.
This sounds nightmarish but even in my confused state was vaguely amusing and, because it was picked up by both patients & medical staff, was quickly assessed as due to one of the drugs & adjusted. But the on going 'normal' chemo brain goes on regardless and its examples are even better. Because of the lymphedema (swelling in the upper leg caused as the lymph nodes having been removed and the system is struggling to deal with the lymph drainage). Hence I was referred to the lymphedema team for advice & exercise.
Ron & I duly attended the first appointment to be greeted by an enthusiastic, rather loud specialist nurse keen to help us understand and apply knowledge to aid my condition. She prescribed some neoprene compression shorts/corsetry and specific exercises. Having shown us the actions herself for the simple movements she then explained that if Ron carried out the massages this might be more beneficial, so she demonstrated on him. Now to understand this you have to realise that there are primary groups of lymph nodes all over the body, but majorly in the neck, armpits diaphragm and groin. So, leaping behind him she explained that the object of the massage was to activate the other nodes so they took up the work of those removed. She vigorously massaged first his neck, then armpits and abdomen and we both felt sure she was about the make a grab for lower areas had it not been for Ron sitting down assuring her that he got the idea! Well we never thought we'd get that sort of treatment on the NHS!
So I took the short things and tried to wear them under trousers, with pants, but they were so hot I ended up red faced & sweating. No problem I thought I'll just wear them as shorts, it was mild weather and they were black neoprene. I voiced the idea to my husband, "Do you think it would look Ok?" and the look of amused shock crossed his face. "Don't forget love they are crutchless" was his barely audible reply, just before he burst with laughter.
Now that would have been chemo brain too far!
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