I got my referral to the oncologist and saw him last week. Although I am going to have to go to QA at Cosham for my chemo sessions, I was able to have my first outpatients consultation with him at St Richard's in Chichester. The 'Fernhurst Centre' is where they deal with such matters and, as you might expect in these enlightened times, it was a bright and airy building with no hint of gloom and doom. The staff were friendly and welcoming and everyone in the waiting area seemed quite cheerful, considering what they were all there for. Lots of smiles and animated conversation all around.
The oncologist was accompanied by the Macmillan nurse who had been present at my diagnosis a couple of weeks earlier. I liked him straight away - I guess you have to be a special sort of person to have to deal with cancer the whole time - and it felt as if I was striking up a positive relationship from the outset. As he is going to be THE key player in whatever unfolds over the next few months, it is reassuring to be in the hands of someone you think you are going to get on with.
He went back over the diagnosis I had been given and, as ever, I asked for explanations of some of the more technical terminology - I do like to understand what is going on. We talked about all sorts of other things too, including the sort of work I do now, and have done over the years. Inevitably, my nine years as a publican attracted the most interest! All in all, a very positive experience.
He wants to arrange my chemo sessions on Fridays so that they coincide with his main clinic day at QA. This could work quite well in terms of the rest of my week, assuming the chemo doesn't wipe me out for 7 days out of 7. I am working on the assumption that weekends will be unpleasant, apart from the fact that I might be forced to sit in front of the TV and watch the Six Nations Rugby without a hint of conscience. Mondays might offer the chance to do a bit more and the middle days of the week are my working days, so I hope I can still do that too. Then back to QA on Friday for another dose of poison.
The plan is to do three Fridays out of four for three months. After that, another scan to compare and contrast with the one on which my diagnosis was based. That forms the basis of the first review. Is it having any impact on the tumour? How am I tolerating the chemo? Depending on the answers to those two questions, we can make a decision on whether to continue. Assuming that we do, the cycle gets repeated. I am assuming that we will.
Saturday, 31 January 2015
Monday, 26 January 2015
Decisions, decisions
One day, there you are fit and well, the next, you are living with a devastating bit of news for which there is no real preparation. The weird thing is that I AM fit and well. I don't look, sound or feel any different. So, in this wholly unreal scenario, what am I supposed to do now? Who do I tell? What do I tell them? How much will they want to know? How much information am I happy to share? What do I do about work? Should I carry on, or should I pack it in and make the most of the free time I have left?
All difficult decisions, so, since getting my diagnosis, I have spent a fair amount of time thinking about all of those things.
Last things first: I told my head of department the very next day - she could not have been more supportive. "Tell me what you want to happen and I will move heaven and earth to achieve it." For now, I have decided to keep on working. I think it helps to have another focus for your thoughts. Not only that but I haven't had a day off sick since I joined the organisation in 2001 so I feel 'entitled' to some paid time off if I need it!
Family members have to be told, always difficult, made the more so because I wanted to tell them all myself, face to face wherever possible. A phone call is a poor substitute and email even worse. I also spoke to as many friends as I could, although there is a limit to how often you can repeat this stuff without losing the plot!
Work colleagues next - made all the more difficult because senior managers have to keep your information in confidence unless you give them express permission to share it. And then you have to be able to say who you want them to tell. We got there in the end and the grapevine is now starting to work. The early trickle of good wishes is turning into a bit of a torrent but, having had this news for over a fortnight, I am much better able to cope with it.
My approach to this whole thing is entirely positive so I really hope that the wailing and gnashing of teeth can wait until the appropriate time. I was particularly dreading meeting the grandchildren as I wasn't at all sure how they would react. I just knew that I would crumple if they did! In the event, that meeting was a light-hearted affair (in the circumstances) and all went well. I am sure that my own attitude is contributing to that. Inevitably, we have all had little 'wobbles' at odd moments but I hope that's a phase we all have to work through.
The main decision now is how to make best use of my time. I have an embryonic bucket list, of which more later on. Carl, Caroline and Luca are off to Abu Dhabi this weekend and will probably be there for a couple of years. There is nothing that can be done about it, even if we all wish it were not so. I have seen a lot of them since my diagnosis and I am truly grateful that they were in the UK at this critical time. We intend ticking another item off the bucket list before the weekend, unless the weather intervenes. Duxford here we come!
All difficult decisions, so, since getting my diagnosis, I have spent a fair amount of time thinking about all of those things.
Last things first: I told my head of department the very next day - she could not have been more supportive. "Tell me what you want to happen and I will move heaven and earth to achieve it." For now, I have decided to keep on working. I think it helps to have another focus for your thoughts. Not only that but I haven't had a day off sick since I joined the organisation in 2001 so I feel 'entitled' to some paid time off if I need it!
Family members have to be told, always difficult, made the more so because I wanted to tell them all myself, face to face wherever possible. A phone call is a poor substitute and email even worse. I also spoke to as many friends as I could, although there is a limit to how often you can repeat this stuff without losing the plot!
Work colleagues next - made all the more difficult because senior managers have to keep your information in confidence unless you give them express permission to share it. And then you have to be able to say who you want them to tell. We got there in the end and the grapevine is now starting to work. The early trickle of good wishes is turning into a bit of a torrent but, having had this news for over a fortnight, I am much better able to cope with it.
My approach to this whole thing is entirely positive so I really hope that the wailing and gnashing of teeth can wait until the appropriate time. I was particularly dreading meeting the grandchildren as I wasn't at all sure how they would react. I just knew that I would crumple if they did! In the event, that meeting was a light-hearted affair (in the circumstances) and all went well. I am sure that my own attitude is contributing to that. Inevitably, we have all had little 'wobbles' at odd moments but I hope that's a phase we all have to work through.
The main decision now is how to make best use of my time. I have an embryonic bucket list, of which more later on. Carl, Caroline and Luca are off to Abu Dhabi this weekend and will probably be there for a couple of years. There is nothing that can be done about it, even if we all wish it were not so. I have seen a lot of them since my diagnosis and I am truly grateful that they were in the UK at this critical time. We intend ticking another item off the bucket list before the weekend, unless the weather intervenes. Duxford here we come!
Wednesday, 14 January 2015
Background to a Serious Diagnosis
It's not easy to determine where this should start. I am 66 years old and hoping to make it past 67. For a number of years I have had various medical 'scares', none of which have really materialised into anything significant That changed on 13th January 2015 when, almost completely out of the blue, I was given a serious diagnosis and a pretty poor prognosis to go with it. That's probably as good a place to start as any.
For about two years, I have been on a preventative drug called Azathioprine to control ulcerative colitis. It's a pretty powerful drug, known to have side effects, particularly on liver function. So over the whole period, I have been subject to regular monitoring, including quarterly blood tests. So far so good. I imagined that, if anything unpleasant was going to happen, it would be picked up early and 'nipped in the bud'. More reassurance came last autumn when my colitis was declared to be in remission and my Azathioprine reduced by 25%. In November, my liver function tests started to show a negative trend. The Azathioprine was stopped altogether, although the consultant didn't believe it was causing the problem. The search began for other possible causes with more frequent blood tests, all of which showed further deterioration in the LFT results. What next?
The consultant had a pretty good idea that it was going to be repeat of a problem I had four years ago and went looking for it via an MRI scan. He was expecting to see some sort of obstuction in the bile duct, as this was entirely consistent with what was happening to my LFTs and with the symptoms I was beginning to experience.
At this point, I have to shout long and loud about how incredible our NHS can be. Having seen him on the Thursday lunchtime, I got a call from St Richard's Hospital in Chichester the next day to invite me in for MRI on the following Monday morning at 0745. Wow! I think that even the consultant was surprised - he was on leave that week so didn't pick up the results until the Monday after. He called me personally on the Tuesday to say that there was 'nothing nasty' on the MRI but he hadn't seen what he was looking for. The wider picture was unclear and wasn't discernible from the MRI scan which, presumably had been tightly focused on the biliary tree. Christmas got in the way to an extent but I had a CT scan on 31st December, which they followed up with abdominal ultrasound just a week later - more fantastic service from the NHS!
He called me in for an outpatients appointment on 13th January to deliver the verdict. As I sat in the waiting area, I reasoned that if the Macmillan nurse was in the room as well, it was going to be bad news. I had been introduced to her four years earlier on one of my previous 'scares'. Sure enough, there she was. So I said a cheery hello and remarked that this didn't look as if I was about to get any good news. I turned back to the poor consultant, who had what I can only describe as a funeral face on. Poor bugger, he had the terrible task of telling me the news that they had found a mass on the pancreas that, in reality, could only be one thing, and that it had already spread to the liver. That means that surgical intervention isn't an option and that the only treatment is chemo for what he termed 'an extension of time'. I asked what I thought were a couple of intelligent questions, including the likely prognosis if I didn't opt for chemo. He said he thought I would be in serious trouble in three months. That focused my mind a little! He explained the next steps - a referral to an oncologist at QA at Portsmouth, who would be taking things forward from there.
I will update this from time to time but, having dealt with the background, I intend keeping it light. It will help enormously if you try to do the same!
For about two years, I have been on a preventative drug called Azathioprine to control ulcerative colitis. It's a pretty powerful drug, known to have side effects, particularly on liver function. So over the whole period, I have been subject to regular monitoring, including quarterly blood tests. So far so good. I imagined that, if anything unpleasant was going to happen, it would be picked up early and 'nipped in the bud'. More reassurance came last autumn when my colitis was declared to be in remission and my Azathioprine reduced by 25%. In November, my liver function tests started to show a negative trend. The Azathioprine was stopped altogether, although the consultant didn't believe it was causing the problem. The search began for other possible causes with more frequent blood tests, all of which showed further deterioration in the LFT results. What next?
The consultant had a pretty good idea that it was going to be repeat of a problem I had four years ago and went looking for it via an MRI scan. He was expecting to see some sort of obstuction in the bile duct, as this was entirely consistent with what was happening to my LFTs and with the symptoms I was beginning to experience.
At this point, I have to shout long and loud about how incredible our NHS can be. Having seen him on the Thursday lunchtime, I got a call from St Richard's Hospital in Chichester the next day to invite me in for MRI on the following Monday morning at 0745. Wow! I think that even the consultant was surprised - he was on leave that week so didn't pick up the results until the Monday after. He called me personally on the Tuesday to say that there was 'nothing nasty' on the MRI but he hadn't seen what he was looking for. The wider picture was unclear and wasn't discernible from the MRI scan which, presumably had been tightly focused on the biliary tree. Christmas got in the way to an extent but I had a CT scan on 31st December, which they followed up with abdominal ultrasound just a week later - more fantastic service from the NHS!
He called me in for an outpatients appointment on 13th January to deliver the verdict. As I sat in the waiting area, I reasoned that if the Macmillan nurse was in the room as well, it was going to be bad news. I had been introduced to her four years earlier on one of my previous 'scares'. Sure enough, there she was. So I said a cheery hello and remarked that this didn't look as if I was about to get any good news. I turned back to the poor consultant, who had what I can only describe as a funeral face on. Poor bugger, he had the terrible task of telling me the news that they had found a mass on the pancreas that, in reality, could only be one thing, and that it had already spread to the liver. That means that surgical intervention isn't an option and that the only treatment is chemo for what he termed 'an extension of time'. I asked what I thought were a couple of intelligent questions, including the likely prognosis if I didn't opt for chemo. He said he thought I would be in serious trouble in three months. That focused my mind a little! He explained the next steps - a referral to an oncologist at QA at Portsmouth, who would be taking things forward from there.
I will update this from time to time but, having dealt with the background, I intend keeping it light. It will help enormously if you try to do the same!
Subscribe to:
Posts (Atom)