I love writing my blog, writing about my cancer is very therapeutic for me, helps me get things out of my system and I hope helps others either who suffer this horrible disease or know people with it and helps them understand what their relatives or friends are going through. I have been complimented on my writing, which is a real boost to my morale and thought you may like to hear how I acquired my writing skills.
I went to an all girls grammar school, I passed my 11 plus by the skin of my teeth, solely because I had been coached in maths which I was never any good at and still only tolerate it for basic needs! I was always out of my depth at the school, I should have gone to a technical school as I am much more practical. Because I was always out of my depth I played around at school, always the class clown, but I excelled at sport and in the gym and on the sports field I felt at home. I left school with no 'O' levels and no real idea of what to do, my hopes of being a P.E. teacher had gone with my abysmal results. I liked children and went to work as a classroom assistant at an independent school for profoundly deaf children in London. After 4 years I decided I'd like to work abroad and as the school took in children from abroad as well, I was asked to go and teach a 5 year old profoundly deaf girl who's father worked in the American Embassy in Tehran. I lived in Tehran for a wonderful year, met some fantastic people, visited amazing places and grew up!
When I came back to England I was taken back at the school for the deaf, but this time employed as an unqualified teacher, a job I held for 7 more years. I realised during this time that I really needed more qualifications and enrolled at my local college of education to redo my English Language and Maths 'O' levels. It was a big step for me, it was 1974 and I was 21 and definitely not an academic, but I wanted some qualifications and hoped that further education would be right for me. On the first evening of my English language course, I sat in the room looking at my fellow students, there were a lot of young people straight out of school who for some reason or other needed to resit their 'O' level, I remember one couple, who were there to study and take the exam, so that they could experience what their son who was about to embark on 'O' levels would encounter so that they could help him. I really admired what they were doing and could never imagine my parents doing the same!
So we were all there ready, wondering what we had let ourselves in for and I was desperately hoping that our tutor would be someone who would be able to 'get me through the year and the exam at the end of it'. So, I was bitterly disappointed when through the door came a scruffy, long haired individual, not much older than me, wearing the smelliest afghan coat (those children of the '70's will remember them!) and carrying a guitar. My hopes of passing went down the drain in an instant! It just goes to show how much we judge people by their clothes, hair etc. He introduced himself..... he was then the unknown Mark Knopfler of Dire Straits fame. He was working as a journalist for a local paper at the time, his dream was to be a famous rock musician and he was always broke, hence the evening job teaching English! I soon realised through his individual ways of teaching that I could understand exactly how he was trying to teach us to write, we were told to write from the heart, as if we were having a conversation with someone on the telephone who needed a full description of everything. He told us that he wrote songs and that was how he wrote the lyrics. He would often play us a new song at the end of the class, trying it out on us and asking for our thoughts. As he and I were of a similar age, we would often sit together in the canteen, discussing our hopes and dreams, he told me I was a good writer and to carry on once I left the college. He had no car, so as he lived on my way home I always gave him a lift, he still owes me petrol money!
The English Language 'O' level? I passed with an A* grade and for the first time I had a little belief in myself!
Saturday 15 September 2012
Saturday 25 August 2012
A Day at the Olympics
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.
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.
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!
Wednesday 1 August 2012
Cancer Initiative Aims To Share Good Practice Across The NHS
This press release from QiC Oncology shows the success of the inaugural year of awards for excellence in oncology, with over 100 entries in 12 catagories.
Have been glad to be involved in this, putting forward the patients perspective.
Alison
Have been glad to be involved in this, putting forward the patients perspective.
Alison
Cancer initiative aims
to share good practice across the NHS
QiC Excellence in Oncology awards ceremony will take place in November, 2012
QiC Excellence in Oncology awards ceremony will take place in November, 2012
Winners of
the first Quality in Care (QiC)
Excellence in Oncology programme will be announced on November 6 at The Hilton, Liverpool, during the National Cancer Research Institute (NCRI) annual conference ahead of plans
to share the ideas behind this good care to an audience throughout the UK
Supported by
Cancer 52, Beating Bowel Cancer, the National
Cancer Action Team, and industry partners such as Pfizer, BMS and Novartis to name but a few, the programme evolves
from Pfizer’s successful Excellence in Oncology Awards and aims to recognise
individuals or teams involved in the support,
care and treatment of cancer patients in the UK across the NHS, voluntary and commercial sectors, with joint working and collaboration key to the
QiC Programmes.
In its
inaugural year, the programme has received more than 100 entries across 12 categories, which include Cancer Professional of the Year and Cancer Charity Initiative of the Year, as well as awards in line with the
NHS Outcomes Framework, such as Patient
Experience and Patient Safety.
There is
also a Lifetime Achievement Award,
given to an individual who has made an outstanding contribution to the field of
cancer throughout their lifetime.
Regarding
the number and quality of entries, Rob
Day, UK
Following
the awards, winning work will be showcased at events across the country, and
will feature in QiC Connect – an
online knowledge hub for healthcare practice in the UK
Stephen Parsons, Director, National
Cancer Action Team
said: "The National Cancer Action Team believes that QiC Excellence
in Oncology provides an effective means of both celebrating and learning
from new ways of working which will help to drive up the quality of care."
Jenny Ritchie-Campbell, Director,
Cancer Services Innovation, Macmillan Cancer Support
said: "Macmillan Cancer Support aims to support people with cancer
every step of the way and push for better cancer care. We are delighted to
support the Quality in Care Oncology programme which will identify and share
good practice and help to spread the expertise and knowledge of successful
innovations."
Pat Haye, Director, Thames Valley Cancer Network said: "Cancer Networks are a vehicle to drive
quality improvements, which is achieved by working in collaboration with many
clinical teams and partners. The TVCN sees these awards as a way of recognising
the invaluable work and contribution of these teams that continuously deliver
innovative, effective cancer care.”
Visit www.qualityincare.org/oncology for further
details on QiC Excellence in Oncology, including the full list of categories
and supporters. Finalists will be announced on the QiC website in the middle of
September.
For details
on how to book a ticket for the
awards ceremony in November, contact Louise Bellamy at
lbellamy@qualityincare.org.
Further information about QiC Excellence
in Oncology:
Quality in Care is a series of programmes aimed at
recognising quality and productivity in line with the Department of Health
agenda around QIPP. The
ultimate aim of the programme is to identify, showcase and share initiatives
which have been created in the NHS and are already helping to improve the
quality and productivity of diabetes care. Other current QiC programmes include
QiC Diabetes, while future programmes will cover rheumatology and respiratory
disorders.
Website: http://www.qualityincare.org
Blog: http://www.qualityincareblog.org
Twitter: @qicprogramme
Website: http://www.qualityincare.org
Blog: http://www.qualityincareblog.org
Twitter: @qicprogramme
PMGroup is a leading international multi channel media
group, dedicated to the pharmaceutical sector, extending beyond the UK into Europe and the US
http://www.pmgrouplive.com/
http://www.pmgrouplive.com/
Friday 20 July 2012
Ode To a Stoma
You know you have a stoma when....
You change the bed thrice in a night.
But, you are still here to sleep in your bed.
You know you have a stoma when....
People are banging on the door of the train's loo you've been in for half an hour.
But, you are on that train going somewhere special.
You know you have a stoma when....
The dress you dreamed of wearing to your sons wedding doesn't quite hide the bulge.
But, you are there to see your son marry his beautiful bride.
You know you have a stoma when....
You have a RADAR key to open the door to every disabled loo in the country.
But, you are here to travel the length and breadth of our beautiful Island.
You know you have a stoma when the only other option is death.
But, you revel in the new life you have, the grandson you might never have known and the new friends that come into the life you never properly appreciated.
Thursday 31 May 2012
Radiofrequency Ablation Therapy (RFA) ...The Patients Version!
After my first line of chemotherapy, Oxalyplatin and 5FU (FOLFOX) although it was very successful in destroying all the tumours in my lungs, there was one particularly stubborn one in segment 3 of my liver that was left behind and was now small enough to be treated by RFA (Radiofrequency Ablation Therapy).
I went up to London to speak to the liver team to check that I was fit enough for the procedure and that I fully understood what was being done, the risks and benefits.
A few weeks later, I was admitted the night before the procedure was to take place and put on nil by mouth at midnight. Now, I have an ileostomy and my fluid intake is necessarily more than the normal patient, as I lose it out of my stoma before it has gone to all the right places! So, when I am nil by mouth I dehydrate quicker than the normal patient, so I always ask to be put on a drip to counteract the dehydration and the inevitable headache that comes with it!
The next day dawned and I was taken to the procedure room and given my general anaesthetic. General anaesthetic is used more often these days than local anaesthesia and sedation, to minimise discomfort and ensure that there is no movement, as the procedure is a very precise art and any movement can displace the siting of the probe, therefore not hitting the right spot!
When the patient is under the general anaesthetic they are placed in a CT machine, so that the consultant radiologist can pinpoint accurately the tumour. A probe ( electrode), or several probes are then inserted through the abdominal wall, guided by the CT machine, into the centre of the tumour(s). The electron is then heated to a very high temperature to destroy the tumour from the inside out! The joy of this is that no other tissues are damaged during this process and there are no entry or exit burns. Hopefully all the tumour will be destroyed, but treatment can be done again if the tumour unfortunately starts to grow again.
My procedure took about 2 hours and I woke up in recovery very quickly as the amount of anaesthetic used is minimal. My consultant radiologist came to see me there, to tell me that as far as he was concerned the procedure had been successful and he had not needed to do as much work as he had first thought. He warned me that I was likely to get pain in my shoulder from the procedure, which would last approximately a day, this is because nerves in the liver are damaged during the procedure and they are connected to feeling in the shoulder area. Later on I was also likely to get localised pain in my liver but this was unlikely to be severe and both pains would be managed by analgesia. A small dressing had been placed over the tiny hole made by the probe and that was the only visible evidence of the RFA.
I was taken back to the ward and rested for a while before being allowed to eat, I like my food and little is likely to spoil my appetite! The pain in my shoulder did indeed kick in later and was worse than I was expecting, it actually felt as if I'd been kicked by a horse! As I'd been informed the pain lasted for only a day, but by this time my liver was extremely sore and was making walking difficult as it was making me bend double, it was decided to keep me in another night to monitor the pain. The next day dawned and although the pain was still bad, the after affects of the anaesthetic had lifted and I was managing the pain better so was allowed home that afternoon. I improved daily at home and was back at work the next week with no after affects.
So RFA is a very simple procedure, yes there are always risks with any procedure including the anaesthetic, but the success rate is high, you can have RFA multiple times on an increasing range of tumours both in the liver and lungs. It is quick, minimally invasive, with no side effects and as in my case has eradicated that particular tumour from my liver.
Yes, I would certainly consider it again, at the moment I have six tumours on my lungs that are too big or in the wrong place to be considered for RFA, but if chemo is successful in shrinking them, then maybe RFA will be considered for them and with time and increased knowledge and practice, RFA may also be suitable for tumours that would not have been considered for treatment before.
RFA is an exciting development in the treatment of tumours and I look forward to its increased success and the use of it in in many more hospitals in the UK.
I went up to London to speak to the liver team to check that I was fit enough for the procedure and that I fully understood what was being done, the risks and benefits.
A few weeks later, I was admitted the night before the procedure was to take place and put on nil by mouth at midnight. Now, I have an ileostomy and my fluid intake is necessarily more than the normal patient, as I lose it out of my stoma before it has gone to all the right places! So, when I am nil by mouth I dehydrate quicker than the normal patient, so I always ask to be put on a drip to counteract the dehydration and the inevitable headache that comes with it!
The next day dawned and I was taken to the procedure room and given my general anaesthetic. General anaesthetic is used more often these days than local anaesthesia and sedation, to minimise discomfort and ensure that there is no movement, as the procedure is a very precise art and any movement can displace the siting of the probe, therefore not hitting the right spot!
When the patient is under the general anaesthetic they are placed in a CT machine, so that the consultant radiologist can pinpoint accurately the tumour. A probe ( electrode), or several probes are then inserted through the abdominal wall, guided by the CT machine, into the centre of the tumour(s). The electron is then heated to a very high temperature to destroy the tumour from the inside out! The joy of this is that no other tissues are damaged during this process and there are no entry or exit burns. Hopefully all the tumour will be destroyed, but treatment can be done again if the tumour unfortunately starts to grow again.
My procedure took about 2 hours and I woke up in recovery very quickly as the amount of anaesthetic used is minimal. My consultant radiologist came to see me there, to tell me that as far as he was concerned the procedure had been successful and he had not needed to do as much work as he had first thought. He warned me that I was likely to get pain in my shoulder from the procedure, which would last approximately a day, this is because nerves in the liver are damaged during the procedure and they are connected to feeling in the shoulder area. Later on I was also likely to get localised pain in my liver but this was unlikely to be severe and both pains would be managed by analgesia. A small dressing had been placed over the tiny hole made by the probe and that was the only visible evidence of the RFA.
I was taken back to the ward and rested for a while before being allowed to eat, I like my food and little is likely to spoil my appetite! The pain in my shoulder did indeed kick in later and was worse than I was expecting, it actually felt as if I'd been kicked by a horse! As I'd been informed the pain lasted for only a day, but by this time my liver was extremely sore and was making walking difficult as it was making me bend double, it was decided to keep me in another night to monitor the pain. The next day dawned and although the pain was still bad, the after affects of the anaesthetic had lifted and I was managing the pain better so was allowed home that afternoon. I improved daily at home and was back at work the next week with no after affects.
So RFA is a very simple procedure, yes there are always risks with any procedure including the anaesthetic, but the success rate is high, you can have RFA multiple times on an increasing range of tumours both in the liver and lungs. It is quick, minimally invasive, with no side effects and as in my case has eradicated that particular tumour from my liver.
Yes, I would certainly consider it again, at the moment I have six tumours on my lungs that are too big or in the wrong place to be considered for RFA, but if chemo is successful in shrinking them, then maybe RFA will be considered for them and with time and increased knowledge and practice, RFA may also be suitable for tumours that would not have been considered for treatment before.
RFA is an exciting development in the treatment of tumours and I look forward to its increased success and the use of it in in many more hospitals in the UK.
Saturday 26 May 2012
It's not just the body cancer changes.....
I've had bowel cancer now for just under 2 years....... well diagnosed with bowel cancer, how long it's actually been in my body subtly changing and mutating cells and organs I will never know.
Yes, my body has changed, surgery has taken away the whole of my colon and most of my rectum, not visual signs, but I know they've gone, my body doesn't digest food the same, for 19 months I had to really think before I ate something, about how it would affect me the next day, would it block the whole digestive tract at the point where my ileum goes through the stomach wall. The cut in my stomach to allow the ileum through was made too small, it's a difficult feat for the surgeon, judging the size, too small, the stoma can block, too big and it can herniate. So I had to learn to avoid certain foods, mushrooms, sweetcorn, nuts, celery, popcorn, raw pineapple and raisins. Of course I didn't always, I like my food too much, so then I had to chew these foods for ever to reduce them to a pulp in my mouth, of course that doesn't always happen, if you're talking, watching TV, just not thinking etc. A stoma blockage is extremely painful, comes on suddenly with no warning and lasts for hours, it's rather like childbirth and goes as suddenly as it started when the blockage is passed. I've had surgery to correct the problem now and food again is a pleasure.
I have as I mentioned, a stoma, which I've talked about in a previous blog. Another change, psychologically and visually. Who on earth would want their bum on their stomach? Who on earth would want to attach to their stomach bum, a bag to collect poo? It's a lot to get your head around, but do it you must, there is no ignoring the conveyor belt of poo that almost continuously emits from the stoma into the bag, you can't clench your 'new butt cheeks' there aren't any, you have no control whatsoever, you can't feel the stoma working, a stoma has no feeling at all, so another thing to get your head around, something with no feeling is easily damaged with fingernails, dogs jumping up, small children suddenly deciding to launch themselves on your lap. Your stoma has a HUGE blood supply, so bleeds easily, it's very strange to have something bleeding copiously but is never sore, you never know you've damaged it until you see the blood! Of course although the stoma and bag are invisible to the general public, they are there, on your stomach a small bulge, when the bag is empty, that gradually enlarges over about 4 hours until it needs emptying. So tight clothes are out, no flaunting yourself around town in the tightest of tight (if you are ever able to get into the tightest of tight in the first place), no laying on the beach in an itsy, bitsy, teeny, weeny, yellow polka dot bikini! You have to be imaginative, creative or just dead lazy like me and spend most of the time in jeans/trousers and long tops.
Scars, the visible signs of cancer and yes, I have many. Thank goodness I've never been vain, for some people they are a huge problem to get over mentally. A lot of colo-rectal surgery is still performed by open surgery, the one where you get a nice 9-10 inch zip like scar right down the middle of your stomach, skirting around your belly button and ending just above your pubic bone.
Not a good look for the young adult in their 20's....... yes, bowel cancer has no age limit, I have too many friends in their 20's and 30's with bowel cancer..... who are still searching for that special person, but now they have to be extra special, they have to look past the zip scar, the stoma and the bag full of poo. Keyhole surgery is more commonly used when it can be for bowel cancer, I was lucky enough for my surgery to be performed this way. A cut is made either above or below the centre of your belly button for the camera to go through, then smaller cuts, usually about 3 or 4 are made radiating out about 4-6 inches away from the belly button, for the tools of the trade to be inserted to carry out the surgery. I also had a 4 inch cut made along my bikini line to remove the diseased organs and tissue. The op I had a few weeks ago to repair my stoma, was also carried out by key hole surgery, so new holes had to be made so my stomach now is like a clock face of scars!
Chemotherapy, another minefield of visible signs of cancer. Most people know about hair loss, a woman's pride and glory may start to fall out in clumps as she brushes it in the morning, when she takes a hat off, when she just goes about her everyday tasks, the pillow is covered in it on awakening in the morning; men who are the butt of baldness jokes suddenly find that they are just that.... BALD. It's not just the hair on your head, you lose your eyebrows, your lashes, your beard and moustache (men..... before there are any rude jokes from my husband), your pubic hair, your body hair. Of course there always is an upside..... no more shaving! So you have to decide to 'wig or not to wig', or to wear a scarf or hat or just go commando. Another thing to get your head around and brace yourself for the inevitable 'Oh, you poor thing...', nothing else in cancer provokes quite the same reaction as hair loss. I've just had the second dose of my second line of chemo and was warned that this lot (Irinotecan) may cause hair loss and indeed it is thinning, only gradually at the moment, but I'm constantly aware of loose hair around my shoulders, whether I'll succumb to a wig in the heat of this summer or brave it and go commando remains to be seen!
Chemotherapy as I've gone into in a previous post is delivered often through a PICC line in the arm or a central line in the chest, just above your heart, more visible signs, easily covered in the winter, but a whole different ball game in the summer!
Visible signs are often as difficult for the onlooker as they are for the patient, they can't avoid what they see, a constant reminder of the cancer that may still be attacking the patient somewhere inside their body. Or just reminders of a battle won, but never forgotten, constantly at the back of the former patients mind whenever a new ache or pain arises.
So it's the invisible scars and changes that no-one thinks about, that aren't mentioned on first diagnosis, that creep up on you and like the cancer mutate in your mind and on your character.
In just under two years since I was first told the news no-one ever wants to hear. I have changed, visually in my body for me to see, my family to witness and others to hear about. But it is 'me' who has changed most. I am not the person I was two years ago, I am not the same wife Bob was used to coming home to each night. I am not the same mother to 'M' and 'H', both adults now, that they thought they knew how to handle. I know I've changed, so it must be obvious to others too.
I've had to learn to be tough, both in body and mind. Daily sometimes, I have to fight the system that should be helping me to fight this disease. To check and double check that appointments are made, scans arranged; that departments in the same hospital are co-ordinating with each other, that different hospitals notify each other of procedures carried out or need to be carried out. I shouldn't have to do this, it is yet more stress and stress causes cancer! But the system is collapsing before our eyes, the eyes of patients fighting the system like me, the eyes of specialist nurses who are dealing with hundreds of patients like me, too many for one nurse, but some of them are fighting to keep their jobs because the system deems them unnecessary, too expensive; the eyes of the surgeons and oncologists who have to juggle their meagre budgets, to encompass fairly for all their patients.
I know I'm living with a time bomb, a very unpredictable time bomb with an indeterminate length of fuse. I know that the result of a scan can send me into euphoria or the depths of despair, I have to deal with this a minimum of every 3 months, in 5 months between last November and March I had 9 different scans, only one of them brought reasonable news.
So this time bomb has changed me, it's hardly surprising. I don't suffer fools gladly anymore, I speak my mind, whereas before I would have smiled sweetly and let whatever it was pass me by. I am watching me, 'someone who knows they are approaching their latter years' who says thing as they are, who needs to put their family in order while they can. I am doing things for me now, putting myself first a lot of the time. It's still not too late for regrets, I can change, I am enjoying a new 'career' doing things two years ago I wouldn't have dreamt of, meeting people I would never have met, made new lifelong friends. I am the confident person now, that other people thought I was, but wasn't, it was a front I struggled with mentally for all my adult life, yet cancer has rid me of my anxiety and depression, too high a price to pay? I'll probably never be able to answer that question.
So when you look at the relative, friend, patient, colleague with cancer, don't just look at the scars, the hair loss or the tubes and bandages, look into the eyes of the person and see the changes inside, I am lucky, my cancer has made me stronger, but to my family and friends, sometimes I am a stranger, not the person they thought they knew, sometimes they struggle to understand the new me, I'm not surprised, sometimes I struggle too.
Yes, my body has changed, surgery has taken away the whole of my colon and most of my rectum, not visual signs, but I know they've gone, my body doesn't digest food the same, for 19 months I had to really think before I ate something, about how it would affect me the next day, would it block the whole digestive tract at the point where my ileum goes through the stomach wall. The cut in my stomach to allow the ileum through was made too small, it's a difficult feat for the surgeon, judging the size, too small, the stoma can block, too big and it can herniate. So I had to learn to avoid certain foods, mushrooms, sweetcorn, nuts, celery, popcorn, raw pineapple and raisins. Of course I didn't always, I like my food too much, so then I had to chew these foods for ever to reduce them to a pulp in my mouth, of course that doesn't always happen, if you're talking, watching TV, just not thinking etc. A stoma blockage is extremely painful, comes on suddenly with no warning and lasts for hours, it's rather like childbirth and goes as suddenly as it started when the blockage is passed. I've had surgery to correct the problem now and food again is a pleasure.
I have as I mentioned, a stoma, which I've talked about in a previous blog. Another change, psychologically and visually. Who on earth would want their bum on their stomach? Who on earth would want to attach to their stomach bum, a bag to collect poo? It's a lot to get your head around, but do it you must, there is no ignoring the conveyor belt of poo that almost continuously emits from the stoma into the bag, you can't clench your 'new butt cheeks' there aren't any, you have no control whatsoever, you can't feel the stoma working, a stoma has no feeling at all, so another thing to get your head around, something with no feeling is easily damaged with fingernails, dogs jumping up, small children suddenly deciding to launch themselves on your lap. Your stoma has a HUGE blood supply, so bleeds easily, it's very strange to have something bleeding copiously but is never sore, you never know you've damaged it until you see the blood! Of course although the stoma and bag are invisible to the general public, they are there, on your stomach a small bulge, when the bag is empty, that gradually enlarges over about 4 hours until it needs emptying. So tight clothes are out, no flaunting yourself around town in the tightest of tight (if you are ever able to get into the tightest of tight in the first place), no laying on the beach in an itsy, bitsy, teeny, weeny, yellow polka dot bikini! You have to be imaginative, creative or just dead lazy like me and spend most of the time in jeans/trousers and long tops.
Scars, the visible signs of cancer and yes, I have many. Thank goodness I've never been vain, for some people they are a huge problem to get over mentally. A lot of colo-rectal surgery is still performed by open surgery, the one where you get a nice 9-10 inch zip like scar right down the middle of your stomach, skirting around your belly button and ending just above your pubic bone.
Not a good look for the young adult in their 20's....... yes, bowel cancer has no age limit, I have too many friends in their 20's and 30's with bowel cancer..... who are still searching for that special person, but now they have to be extra special, they have to look past the zip scar, the stoma and the bag full of poo. Keyhole surgery is more commonly used when it can be for bowel cancer, I was lucky enough for my surgery to be performed this way. A cut is made either above or below the centre of your belly button for the camera to go through, then smaller cuts, usually about 3 or 4 are made radiating out about 4-6 inches away from the belly button, for the tools of the trade to be inserted to carry out the surgery. I also had a 4 inch cut made along my bikini line to remove the diseased organs and tissue. The op I had a few weeks ago to repair my stoma, was also carried out by key hole surgery, so new holes had to be made so my stomach now is like a clock face of scars!
Chemotherapy, another minefield of visible signs of cancer. Most people know about hair loss, a woman's pride and glory may start to fall out in clumps as she brushes it in the morning, when she takes a hat off, when she just goes about her everyday tasks, the pillow is covered in it on awakening in the morning; men who are the butt of baldness jokes suddenly find that they are just that.... BALD. It's not just the hair on your head, you lose your eyebrows, your lashes, your beard and moustache (men..... before there are any rude jokes from my husband), your pubic hair, your body hair. Of course there always is an upside..... no more shaving! So you have to decide to 'wig or not to wig', or to wear a scarf or hat or just go commando. Another thing to get your head around and brace yourself for the inevitable 'Oh, you poor thing...', nothing else in cancer provokes quite the same reaction as hair loss. I've just had the second dose of my second line of chemo and was warned that this lot (Irinotecan) may cause hair loss and indeed it is thinning, only gradually at the moment, but I'm constantly aware of loose hair around my shoulders, whether I'll succumb to a wig in the heat of this summer or brave it and go commando remains to be seen!
Chemotherapy as I've gone into in a previous post is delivered often through a PICC line in the arm or a central line in the chest, just above your heart, more visible signs, easily covered in the winter, but a whole different ball game in the summer!
Visible signs are often as difficult for the onlooker as they are for the patient, they can't avoid what they see, a constant reminder of the cancer that may still be attacking the patient somewhere inside their body. Or just reminders of a battle won, but never forgotten, constantly at the back of the former patients mind whenever a new ache or pain arises.
So it's the invisible scars and changes that no-one thinks about, that aren't mentioned on first diagnosis, that creep up on you and like the cancer mutate in your mind and on your character.
In just under two years since I was first told the news no-one ever wants to hear. I have changed, visually in my body for me to see, my family to witness and others to hear about. But it is 'me' who has changed most. I am not the person I was two years ago, I am not the same wife Bob was used to coming home to each night. I am not the same mother to 'M' and 'H', both adults now, that they thought they knew how to handle. I know I've changed, so it must be obvious to others too.
I've had to learn to be tough, both in body and mind. Daily sometimes, I have to fight the system that should be helping me to fight this disease. To check and double check that appointments are made, scans arranged; that departments in the same hospital are co-ordinating with each other, that different hospitals notify each other of procedures carried out or need to be carried out. I shouldn't have to do this, it is yet more stress and stress causes cancer! But the system is collapsing before our eyes, the eyes of patients fighting the system like me, the eyes of specialist nurses who are dealing with hundreds of patients like me, too many for one nurse, but some of them are fighting to keep their jobs because the system deems them unnecessary, too expensive; the eyes of the surgeons and oncologists who have to juggle their meagre budgets, to encompass fairly for all their patients.
I know I'm living with a time bomb, a very unpredictable time bomb with an indeterminate length of fuse. I know that the result of a scan can send me into euphoria or the depths of despair, I have to deal with this a minimum of every 3 months, in 5 months between last November and March I had 9 different scans, only one of them brought reasonable news.
So this time bomb has changed me, it's hardly surprising. I don't suffer fools gladly anymore, I speak my mind, whereas before I would have smiled sweetly and let whatever it was pass me by. I am watching me, 'someone who knows they are approaching their latter years' who says thing as they are, who needs to put their family in order while they can. I am doing things for me now, putting myself first a lot of the time. It's still not too late for regrets, I can change, I am enjoying a new 'career' doing things two years ago I wouldn't have dreamt of, meeting people I would never have met, made new lifelong friends. I am the confident person now, that other people thought I was, but wasn't, it was a front I struggled with mentally for all my adult life, yet cancer has rid me of my anxiety and depression, too high a price to pay? I'll probably never be able to answer that question.
So when you look at the relative, friend, patient, colleague with cancer, don't just look at the scars, the hair loss or the tubes and bandages, look into the eyes of the person and see the changes inside, I am lucky, my cancer has made me stronger, but to my family and friends, sometimes I am a stranger, not the person they thought they knew, sometimes they struggle to understand the new me, I'm not surprised, sometimes I struggle too.
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