On August 8th, a gloriously sunny day, my daughter and I went up to Stratford
on the train to visit the Oympic park and later in the evening watch the
preliminary womens 10 metre platform diving competition. I'm so glad I went, I
even wonder if I'd not had cancer if I'd have made the effort to get the
tickets! You know what it used to be like in the pre-cancer days...... oh I'll
do that tomorrow. But, as we all well know, at sometime, tomorrow will be too late
for some of us to do these things. I don't for a minute regret the cost which
included kitting us out in Team GB T-shirts, wrist bands, etc, nor the miles we
walked gasping at the enormity of the Olympic Park, nor the numb bum sitting up
in the Gods on hard plastic seats cheering on all the competitors. I have never
witnessed such a well run event, from the British rail employees at our local
station decked out in their pink Olympic vests telling us the right stations to
use, the volunteer Olympic greeters who kept the crowds moving all around
Stratford and the Park, they answered every question we had (mostly where the
nearest loo's were!) they were cheerful, friendly and still full of Olympic
spirit 13 days into the games. The loos to my amazement, weren't crowded and
spotlessly clean, right up to leaving at 10pm (and being a 'bag lady' I'm an
expert on loo facilities!) The buildings are iconic, a heritage for our youth,
the river wends its way peacefully through the park, which has banks of the most
beautiful wild flowers alongside. There are seats to just rest and soak up the
atmosphere, to listen to the cachophony of languages around you, to watch the
children with their faces painted with the flags of their homeland, to watch the
groups of performers entertaining the public. I have never been anywhere before
where there have been so many people, a mass of humanity, all enjoying
themselves, all happy, all friendly, in any queue we exchanged stories of why we
were there, took each others photo's and high fived when the queue moved on. I
wore my gold bum badge proudly on my Team GB T-shirt, the pin collectors all
wanted it...... it was not for sale or exchange, hopefully a few more people are
aware of bowel cancer.
The diving was spectacular, you do not realise how
high up a 10 metre board is until you are there in the pool, watching these
young girls tumble and pirouette into the clear waters below. Quiet was asked
for before each dive and quiet was what they got, you could have heard the
proverbial pin drop for each of the 140 dives we saw that evening, then came the
roar of the crowd a few thousand of us, when the dive was complete, the roar
reached a crescendo when the 2 girls from team GB dived, 18 out of the 26 girls
competing were put through to the semi-final the next day, unfortunately our
girls came 19th and 20th, but they did us proud and I admire their nerves of
steel.
We left the park just before 10pm along with a huge river of
humanity from all the different arenas, there was no pushing or pulling, just
everyone walking towards their exits in an orderly fashion, so it moved smoothly
with the volunteers again guiding and directing so cheerfully.
I am SO
glad I experienced Britain at it's best, a summer where the news of our
successes have thwarted anyone with ideas of rioting or causing worse scenarios.
I hope the powers that be use the euphoria of the games to stimulate our youth
to do worthwhile activities, to use our new facilities. I hope they promote our
medal winners and those who took part to encourage the children of our nation to
look up to them and what they achieve instead of those who just promote glamour
and money.
I can say 'I was there', I experienced positivity on a huge
scale, some of it has rubbed off and is now firmly wedged in my soul to help me
beat this disease that is testing me to the utmost.
Saturday, 25 August 2012
Wednesday, 22 August 2012
Second Bite of the Cherry....... More Chemo!
Last November I visited my liver consultant at Kings to review how successful the RFA (radiofrequency ablation therapy) I'd had done 6 weeks previously on a stubborn tumour on my liver had been. A week before I'd been up there to have a CT scan so they could assess the results. The RFA, I was told had been a success, but, and isn't there always a but in this game, tumours had again reappeared on my lungs. It was a complete smack in the face, good news followed up by bad, so no time to celebrate the successful op. I was told I'd need more chemo as they were not in good places, they were deep and some attached to the branches of the lungs.
So back to my oncologist in Kent and hoping to start chemo ASAP. Nothing is as simple as that! First the CT had got mislaid on route from Kings, so another one was ordered and I was keen to see a cardio-thoracic specialist, as I wanted to hear from the horses mouth that they were inoperable and what he thought my best course of action would be. So another CT scan and an MRI to have done and then an appointment again in London to see my cardio-thoracic consultant. By this time it was early March and I was worrying about how much the tumours had grown.
So a Monday morning in March saw me waiting to see my consultant, I'd gone on my own as I wasn't expecting to hear anything all the experts so far hadn't told me i.e. there were too many, they were the wrong size, they were too deep, they were too near major branches of the lungs. So imagine my surprise when my consultant told me he could operate, for once I had no words, the wind was taken totally out of my sails and I think the look on my face totally fazed the consultant as he paused, looked at me and said "At this point most people jump out of their chairs and hug me, you don't look too pleased!" I was just totally flummoxed, it was the last thing I was expecting and has taught me not to take everything people tell me as gospel! He went on to show me how he would operate, that I would need 2 ops and that maybe RFA would be possible on a couple of the tumours. I went home on the train with my mind in a whirl, totally excited on one hand and totally confused on the other.
My excitement was short lived, I received a letter from my consultant 4 days later to say they had reviewed my case again at their MDT and had decided it was too complex an op and had decided against going ahead at present, suggesting I go back to my oncologist and discuss chemo and if I went down that route and the tumours reduced in size they would review my case again then. My world crumpled, I'd had 4 days to get used to the idea of major surgery, I'd told everyone, I was excited and feeling optimistic about my uncertain future. I was at home alone when the letter came, I had to read it several times before I could believe what I was seeing. I was angry, very angry. How could someone build up a patient so much, explain the whole operation and options, tell me how lucky I was, give me hope for the future and then in a single letter bring my whole world crashing down?
I just didn't know what to do. But as in other situations, when my pathway was unclear I phoned a nurse at Beating Bowel Cancer and sobbed through explaining my situation. As usual, I was calmed down, the letter was dissected word by word and explained that perhaps it was too big an op, it may be better for me to go down the route suggested, it would take longer if chemo was successful, but would be better for me in the long run.
So, back to my oncologist and we agreed to try more chemo, this time Irinotecan and 5FU again, I was to have 6 sessions and then rescanned. I was already booked in to have an operation on my stoma, as it was constantly blocking and causing me severe pain. I elected to go ahead with my op before starting chemo as I could not keep putting up with the pain and emergency admittances to hospital. So chemo started in May with each session 2 weeks apart.
My first line of chemo Oxaliplatin and 5FU, I had managed well, working through it with minimal tiredness, no sickness and I managed to put up with the peripheral neuropathy, which eventually left my body after 6 months. My 2nd line of chemo was to be an altogether different ball game. I'd decided to forgo all but 2 of the steroid tablets for this line of chemo as they had given me really bad headaches with the first line. I'm still glad I decided on this as I had no headaches, but they were replaced by nausea. During the infusion I would start to feel 'bad' after about the first hour, sweating and feeling really spaced out, fortunately this would wear off when the Irinotecan infusion was finished and I was being hooked up to the 5FU pump that I would wear at home for the next 46 hours. I felt well enough to drive myself home after each infusion, but that evening or the next day tiredness would hit me. I can only explain it like sleeping sickness, I would go to bed on the Thursday evening and virtually sleep through until about midday on the Monday, just getting up for bathroom needs and the occasional meal. My appetite was gone, I felt constantly nauseous, that was helped somewhat with anti-sickness tablets, nothing tasted normal and my mouth had the constant taste of bile in it. Once the deep tiredness and lethargy had gone, I was more able to function normally and when possible I went into work, trying to gain some semblance of normality. Mostly I just wanted to be left on my own, I think I went through a few days of depression each cycle, but again as with my first line of chemo a year before, each cycle was slightly different to the one before. It was lovely if I was able to attend social events or feel up to meeting friends and this enabled me to see light at the end of the tunnel and that things would be normal again when chemo was ended. My last session of chemo was particularly bad and I can remember lying in bed sobbing at the thought that if my tumours hadn't shrunk enough, I would have to decide if I could face another 3 months of this chemo, with the severity of the symptoms escalating.
Ten days after the last cycle of Irinotecan and 5FU, I had the dreaded CT scan to determine my fate! Anyone with cancer will tell you how awful the time is coming up to these scans and the inevitable result that follows. So it was with trepidation I walked into my oncologists consulting room another week later. I needn't have worried, again my body had responded positively to chemo and all the tumours in my lungs had reduced by about 50%, my oncologist beamed at me (a rare occurrence!) and said he was sending the scans to my cardio-thoracic surgeon straight away and he hoped they would reconsider surgery or RFA.
Just over a week later in the middle of August I was again seen by a cardio-thoracic surgeon (a different one this time!) in London, this time I took my husband for support. He was pleased to inform me that the result was so good there was no need for surgery and I was suitable for RFA. This is to be carried out in 2-3 sessions (under a general anaesthetic) and approximately 3 weeks apart and and surgery would be possible if there was an awkward one as they would not have to remove so much lung.
So, I am awaiting the phone call to go in for the first treatment. I'm excited about having the treatment that will hopefully rid me of these stubborn little blighters. I know it's not going to be an easy time and will tie up a lot of the Autumn and mean that my family will again have to take on the domestic chores, but if it gives me more time to appreciate the life I love, my family and my army of good friends then bring it on. Oh..... and that awful chemo? It's in the past, it did it's job. Would I have it again? .........yes, yes, yes!
So back to my oncologist in Kent and hoping to start chemo ASAP. Nothing is as simple as that! First the CT had got mislaid on route from Kings, so another one was ordered and I was keen to see a cardio-thoracic specialist, as I wanted to hear from the horses mouth that they were inoperable and what he thought my best course of action would be. So another CT scan and an MRI to have done and then an appointment again in London to see my cardio-thoracic consultant. By this time it was early March and I was worrying about how much the tumours had grown.
So a Monday morning in March saw me waiting to see my consultant, I'd gone on my own as I wasn't expecting to hear anything all the experts so far hadn't told me i.e. there were too many, they were the wrong size, they were too deep, they were too near major branches of the lungs. So imagine my surprise when my consultant told me he could operate, for once I had no words, the wind was taken totally out of my sails and I think the look on my face totally fazed the consultant as he paused, looked at me and said "At this point most people jump out of their chairs and hug me, you don't look too pleased!" I was just totally flummoxed, it was the last thing I was expecting and has taught me not to take everything people tell me as gospel! He went on to show me how he would operate, that I would need 2 ops and that maybe RFA would be possible on a couple of the tumours. I went home on the train with my mind in a whirl, totally excited on one hand and totally confused on the other.
My excitement was short lived, I received a letter from my consultant 4 days later to say they had reviewed my case again at their MDT and had decided it was too complex an op and had decided against going ahead at present, suggesting I go back to my oncologist and discuss chemo and if I went down that route and the tumours reduced in size they would review my case again then. My world crumpled, I'd had 4 days to get used to the idea of major surgery, I'd told everyone, I was excited and feeling optimistic about my uncertain future. I was at home alone when the letter came, I had to read it several times before I could believe what I was seeing. I was angry, very angry. How could someone build up a patient so much, explain the whole operation and options, tell me how lucky I was, give me hope for the future and then in a single letter bring my whole world crashing down?
I just didn't know what to do. But as in other situations, when my pathway was unclear I phoned a nurse at Beating Bowel Cancer and sobbed through explaining my situation. As usual, I was calmed down, the letter was dissected word by word and explained that perhaps it was too big an op, it may be better for me to go down the route suggested, it would take longer if chemo was successful, but would be better for me in the long run.
So, back to my oncologist and we agreed to try more chemo, this time Irinotecan and 5FU again, I was to have 6 sessions and then rescanned. I was already booked in to have an operation on my stoma, as it was constantly blocking and causing me severe pain. I elected to go ahead with my op before starting chemo as I could not keep putting up with the pain and emergency admittances to hospital. So chemo started in May with each session 2 weeks apart.
My first line of chemo Oxaliplatin and 5FU, I had managed well, working through it with minimal tiredness, no sickness and I managed to put up with the peripheral neuropathy, which eventually left my body after 6 months. My 2nd line of chemo was to be an altogether different ball game. I'd decided to forgo all but 2 of the steroid tablets for this line of chemo as they had given me really bad headaches with the first line. I'm still glad I decided on this as I had no headaches, but they were replaced by nausea. During the infusion I would start to feel 'bad' after about the first hour, sweating and feeling really spaced out, fortunately this would wear off when the Irinotecan infusion was finished and I was being hooked up to the 5FU pump that I would wear at home for the next 46 hours. I felt well enough to drive myself home after each infusion, but that evening or the next day tiredness would hit me. I can only explain it like sleeping sickness, I would go to bed on the Thursday evening and virtually sleep through until about midday on the Monday, just getting up for bathroom needs and the occasional meal. My appetite was gone, I felt constantly nauseous, that was helped somewhat with anti-sickness tablets, nothing tasted normal and my mouth had the constant taste of bile in it. Once the deep tiredness and lethargy had gone, I was more able to function normally and when possible I went into work, trying to gain some semblance of normality. Mostly I just wanted to be left on my own, I think I went through a few days of depression each cycle, but again as with my first line of chemo a year before, each cycle was slightly different to the one before. It was lovely if I was able to attend social events or feel up to meeting friends and this enabled me to see light at the end of the tunnel and that things would be normal again when chemo was ended. My last session of chemo was particularly bad and I can remember lying in bed sobbing at the thought that if my tumours hadn't shrunk enough, I would have to decide if I could face another 3 months of this chemo, with the severity of the symptoms escalating.
Ten days after the last cycle of Irinotecan and 5FU, I had the dreaded CT scan to determine my fate! Anyone with cancer will tell you how awful the time is coming up to these scans and the inevitable result that follows. So it was with trepidation I walked into my oncologists consulting room another week later. I needn't have worried, again my body had responded positively to chemo and all the tumours in my lungs had reduced by about 50%, my oncologist beamed at me (a rare occurrence!) and said he was sending the scans to my cardio-thoracic surgeon straight away and he hoped they would reconsider surgery or RFA.
Just over a week later in the middle of August I was again seen by a cardio-thoracic surgeon (a different one this time!) in London, this time I took my husband for support. He was pleased to inform me that the result was so good there was no need for surgery and I was suitable for RFA. This is to be carried out in 2-3 sessions (under a general anaesthetic) and approximately 3 weeks apart and and surgery would be possible if there was an awkward one as they would not have to remove so much lung.
So, I am awaiting the phone call to go in for the first treatment. I'm excited about having the treatment that will hopefully rid me of these stubborn little blighters. I know it's not going to be an easy time and will tie up a lot of the Autumn and mean that my family will again have to take on the domestic chores, but if it gives me more time to appreciate the life I love, my family and my army of good friends then bring it on. Oh..... and that awful chemo? It's in the past, it did it's job. Would I have it again? .........yes, yes, yes!
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