Saturday 14 February 2015
And the Next Day
The news just got worse! I went down to St Richards for my ultrasound and, later in the day, had a long conversation with the Macmillan Nurse there. My jaundice has increased tenfold in a a week, which is something no-one would have predicted. It means I can’t start chemo – it’s too dangerous, and I would have zero quality of life. On Wednesday, I have to go in for fitting of a stent in the liver. That should allow bile to drain from the liver and, with any luck, I should see an improvement in a number of areas. However, here is the catch. My jaundice is now so severe that they are not at all confident about getting it down low enough to start chemo at all. If that’s the case, I am looking at palliative care only.
I am quite relaxed about it in a funny sort of way. My only remaining concern is that I can get Jackie settled before I have to go into care myself! I know that with our local Macmillan Service, I will be in the best possible hands – and they are a fabulous bunch of people.
On Monday, I am off for another blood test and then the endoscopy on Wednesday for insertion of the stent.
Work is unfortunately out of the question at the moment as I just can't concentrate for long enough to do anything worthwhile.
My plan now is to do what I need to do over the next few days and then see what the impact of that is. When I started this blog, I said I was going to try to keep it light. Little did I know how many consecutive buckets of shit were up there with my name on them I haven't lost any of my resolve but it is hard to be optimistic when the mountain you are trying to climb gets higher each day.
Next update once I see how Wednesday goes.
Thursday 12 February 2015
Not the Best Possible Week
Sometimes you start to believe that the fairies just have it in for you. I started getting a lot of bloating, trapped wind etc. and, at a routine meeting with my wonderful GP, we tweaked some of my existing medication. The following day, I started with the amended doses and, by the end of the same day, I was unable to move more than 10 yards from a loo. No more details required. At first I didn't see the connection; indeed, I thought it was probably too soon but, when I read the 'sleeve notes' for that particular drug, one of the prominent declared side effects held out the promise of severe and persistent diarrhoea (sorry!). Oh, joy!
My GP was away and I opted to reduce the drug to the original dose the following day but, when it came to it, I couldn't persuade myself to take it at all. I put that decision off until I saw an improvement. It would take most of the week and today was the first day I felt brave enough to start taking it again - so far so good, just in case you are wondering!
Since well before my diagnosis, I have enjoyed the delights of hot itchy skin, which really impacts most at night. It is directly linked to poor liver function so we know what that is all about. My Macmillan nurse got me some great cream called Dermacool, which is menthol in aqueous, and it is wonderfully cooling if applied in sufficient quantity. Nights got a bit better from then on, but far from perfect. Lots of broken sleep, but the steroids helped to offset that to some extent. I was still functioning more or less normally.
As if that wasn't enough, I started to look a bit jaundiced, which isn't a great addition to one's list of little things to cope with. I found myself needing to take naps during the daytime, despite the steroids, not a thing I am at all accustomed to. Whoever I see at the moment tells me how yellow my eyes are and how 'tanned' I look. Thanks everyone, it's good to have your confirmation.
The Macmillan team decided to get one of their doctors to come and take a look at me. I am not sure what I was expecting to see on the doorstep when the bell rang but I know I wasn't expecting what I saw. A lady of a certain age, probably retired, but continuing to do wonderful and much needed work in the cancer community.
A Scot, softly spoken and reassuring at every turn; it crossed my mind that we have got our mental image of angels completely wrong. She went right through my history since before the diagnosis, asking many of the same questions that others have asked but, somehow, from a very different perspective. She seemed to be looking at the mountain from the other side and discovering different things about it. She stayed for well over an hour and subjected me to a thorough, yet wholly sympathetic and unintrusive abdominal examination. She said all my bits were in the right place which, in the current uncertain situation, I found surprisingly useful to know! While I realise that she is not subject to the same time constraints as our NHS doctors, I could only wonder how much better a doctor's bedside manner could get. I really did feel a lot better afterwards.
That extended into yesterday (11th) - not a bad day. Apart from the fatigue etc., it was actually quite a good one. I went out and did my shopping in anticipation of feeling rubbish for a couple of days once my chemo started on Friday. There had to be food in the house, at least for one of us. I decided against going out last evening, a difficult decision because I really wanted to go.
Bloody good job I didn't go. At about 1015, I got a really sharp pain in the left abdomen, just below the rib cage. It had all the hallmarks of trapped wind but worse than I had experienced on any previous occasion. But it just got worse and worse and there seemed to be no position in which I could sit, stand or lie that offered any relief at all. All I could do was keep trying to bring up wind in the hope of reducing the pressure - but it seemed to be building at a faster rate than my well-practised burping mechanisms could cope with. I will spare you the details. After two hours of this, I rang 111 to get some advice. Considering I thought I was dying there and then, I thought that was remarkably restrained! 111 is a useful service but nothing about it is capable of short-cutting. First, the 'health advisor', nice guy but just running through a scripted list of questions. After 15 minutes of that, I had to wait for someone else to call me. A nice lady paramedic, who asked some of the same questions as before. I passed that test and got referred on to a doctor. I was warned that it might be four hours before I got that call but, mercifully, I only had to wait about 20 minutes. She concluded that the likely cause was that it was linked to the withdrawal of the drug I had stopped taking, and that I should resume taking the original dose straight away. I took her advice, but while I was still fighting with packaging (which is an imperfect science, to say the least!), I let out a massive burp, followed by another and another and another. Blessed relief. At last I felt I could go to bed, overdue by now as it was getting on for 0200. A reasonable night despite the itching and scratching.
The phone rang this morning at 0900. It was my Macmillan nurse who, typically, was calling on a non-working day. She and the lovely Scots doctor had concluded that the jaundice had to be investigated urgently, not least because thet were unlikely to start my chemo while the cause was unknown. More blood tests this morning on the hurry-up with an ultrasound of the liver to follow. Unfortunately, it was too much to ask of a single day and I am booked in for the ultrasound first thing tomorrow. As a result, my first chemo session has had to be postponed. Once we know what is causing the jaundice, we can move forward. Meanwhile the uncertainty goes on...
My GP was away and I opted to reduce the drug to the original dose the following day but, when it came to it, I couldn't persuade myself to take it at all. I put that decision off until I saw an improvement. It would take most of the week and today was the first day I felt brave enough to start taking it again - so far so good, just in case you are wondering!
Since well before my diagnosis, I have enjoyed the delights of hot itchy skin, which really impacts most at night. It is directly linked to poor liver function so we know what that is all about. My Macmillan nurse got me some great cream called Dermacool, which is menthol in aqueous, and it is wonderfully cooling if applied in sufficient quantity. Nights got a bit better from then on, but far from perfect. Lots of broken sleep, but the steroids helped to offset that to some extent. I was still functioning more or less normally.
As if that wasn't enough, I started to look a bit jaundiced, which isn't a great addition to one's list of little things to cope with. I found myself needing to take naps during the daytime, despite the steroids, not a thing I am at all accustomed to. Whoever I see at the moment tells me how yellow my eyes are and how 'tanned' I look. Thanks everyone, it's good to have your confirmation.
The Macmillan team decided to get one of their doctors to come and take a look at me. I am not sure what I was expecting to see on the doorstep when the bell rang but I know I wasn't expecting what I saw. A lady of a certain age, probably retired, but continuing to do wonderful and much needed work in the cancer community.
A Scot, softly spoken and reassuring at every turn; it crossed my mind that we have got our mental image of angels completely wrong. She went right through my history since before the diagnosis, asking many of the same questions that others have asked but, somehow, from a very different perspective. She seemed to be looking at the mountain from the other side and discovering different things about it. She stayed for well over an hour and subjected me to a thorough, yet wholly sympathetic and unintrusive abdominal examination. She said all my bits were in the right place which, in the current uncertain situation, I found surprisingly useful to know! While I realise that she is not subject to the same time constraints as our NHS doctors, I could only wonder how much better a doctor's bedside manner could get. I really did feel a lot better afterwards.
That extended into yesterday (11th) - not a bad day. Apart from the fatigue etc., it was actually quite a good one. I went out and did my shopping in anticipation of feeling rubbish for a couple of days once my chemo started on Friday. There had to be food in the house, at least for one of us. I decided against going out last evening, a difficult decision because I really wanted to go.
Bloody good job I didn't go. At about 1015, I got a really sharp pain in the left abdomen, just below the rib cage. It had all the hallmarks of trapped wind but worse than I had experienced on any previous occasion. But it just got worse and worse and there seemed to be no position in which I could sit, stand or lie that offered any relief at all. All I could do was keep trying to bring up wind in the hope of reducing the pressure - but it seemed to be building at a faster rate than my well-practised burping mechanisms could cope with. I will spare you the details. After two hours of this, I rang 111 to get some advice. Considering I thought I was dying there and then, I thought that was remarkably restrained! 111 is a useful service but nothing about it is capable of short-cutting. First, the 'health advisor', nice guy but just running through a scripted list of questions. After 15 minutes of that, I had to wait for someone else to call me. A nice lady paramedic, who asked some of the same questions as before. I passed that test and got referred on to a doctor. I was warned that it might be four hours before I got that call but, mercifully, I only had to wait about 20 minutes. She concluded that the likely cause was that it was linked to the withdrawal of the drug I had stopped taking, and that I should resume taking the original dose straight away. I took her advice, but while I was still fighting with packaging (which is an imperfect science, to say the least!), I let out a massive burp, followed by another and another and another. Blessed relief. At last I felt I could go to bed, overdue by now as it was getting on for 0200. A reasonable night despite the itching and scratching.
The phone rang this morning at 0900. It was my Macmillan nurse who, typically, was calling on a non-working day. She and the lovely Scots doctor had concluded that the jaundice had to be investigated urgently, not least because thet were unlikely to start my chemo while the cause was unknown. More blood tests this morning on the hurry-up with an ultrasound of the liver to follow. Unfortunately, it was too much to ask of a single day and I am booked in for the ultrasound first thing tomorrow. As a result, my first chemo session has had to be postponed. Once we know what is causing the jaundice, we can move forward. Meanwhile the uncertainty goes on...
Friday 6 February 2015
The Toughest Decision So Far
Those of you who know us will be aware that my wife Jackie has primary progressive MS, having been diagnosed as long ago as 1988. Since then, and especially since we moved out of the Three Moles in 1997, I have been her main carer. We have had a lot of laughs as well as difficulties over that period of time and have coped pretty well, more recently with the help of some lovely paid carers. Black humour has certainly helped us through those years!
It dawned on us both as recently as this week that our situation is likely to become untenable in the near future, especially once I start chemo. There is no way of knowing how I will be affected by that but it is highly likely that I will be unable to support Jackie in the way I have always done. She is very prone to falling and does so several times a week, sometimes several times a day. Without labouring the point, I can't continue to lift her when she ends up on the floor. I know I shouldn't be concerned about it but there are only so many times you can call on the ambulance service to rescue her.
We decided to consult our MS Specialist Nurse about immediate and longer term residential care options. The rationale for picking her brains in particular is that she has MS patients in homes all over the area and is well placed to know how well the individual needs of those patients are catered for. That is a really important issue for us - if you know Jackie, you will also know that she has lost none of her ability or enthusiasm for conversation, and engagement in general. Our experience of respite care in the past has been generally poor, as they just dump her in front of the TV with a lot of old ladies in various stages of decline. Not only that, but Jackie still wants to be as independent as she can be in the circumstances, and that includes getting herself around using a wheeled walker. I understand that to do that in a care home environment, she needs to be supervised, and that requires the use of additional staff resources. However, after a week away in December, she lost almost all of her ability to get about on her own and has never quite recovered it all since then.
So, the tough decision is this. How will we cope over the next few months when neither of us is able to support the other? No amount of supplementary care is going to address the issue so, mainly at Jackie's instigation, we have decided to go for residential care for her sooner rather than later. Social Services and the MS Nurse agree that it is the only realistic option in our circumstances.
There are significant benefits for us both in taking this course of action. Jackie will be properly looked after while I am hors de combat and I won't have that constant worry about her welfare. That should enable me to focus on achieving the best possible outcome from the treatment. The second advantage is that while I am still well, and while we have time to choose, I can research various options and make some valid comparisons. If we leave it until we hit whatever crisis may ensue, my fear is that Jackie will end up with a less than optimal solution to her needs. That's not to say that the family won't do the best possible for her - of course they will - but choices may be limited if it has to be done in a hurry. Not only that, but Jackie will be hit by the double whammy of losing me and her home in the same week. By taking this approach, we can take one 'whammy' at a time and get her settled into her new home before the other crisis hits, assuming that it does at some point.
The search starts today and I am off to see what I hope will be an ideal environment for her. All of the feedback I have had on it strongly suggests that this belongs in the top two of our shortlist. They have a track record of being especially responsive to the individual needs of their residents - and that is just what is needed. Whether they choose to take her is their call - they don't operate a waiting list but look for a 'good fit' with the rest of the residents. Even that policy bodes well as they are clearly thinking of the welfare of all of their residents. As ever, I am optimistic!
It dawned on us both as recently as this week that our situation is likely to become untenable in the near future, especially once I start chemo. There is no way of knowing how I will be affected by that but it is highly likely that I will be unable to support Jackie in the way I have always done. She is very prone to falling and does so several times a week, sometimes several times a day. Without labouring the point, I can't continue to lift her when she ends up on the floor. I know I shouldn't be concerned about it but there are only so many times you can call on the ambulance service to rescue her.
We decided to consult our MS Specialist Nurse about immediate and longer term residential care options. The rationale for picking her brains in particular is that she has MS patients in homes all over the area and is well placed to know how well the individual needs of those patients are catered for. That is a really important issue for us - if you know Jackie, you will also know that she has lost none of her ability or enthusiasm for conversation, and engagement in general. Our experience of respite care in the past has been generally poor, as they just dump her in front of the TV with a lot of old ladies in various stages of decline. Not only that, but Jackie still wants to be as independent as she can be in the circumstances, and that includes getting herself around using a wheeled walker. I understand that to do that in a care home environment, she needs to be supervised, and that requires the use of additional staff resources. However, after a week away in December, she lost almost all of her ability to get about on her own and has never quite recovered it all since then.
So, the tough decision is this. How will we cope over the next few months when neither of us is able to support the other? No amount of supplementary care is going to address the issue so, mainly at Jackie's instigation, we have decided to go for residential care for her sooner rather than later. Social Services and the MS Nurse agree that it is the only realistic option in our circumstances.
There are significant benefits for us both in taking this course of action. Jackie will be properly looked after while I am hors de combat and I won't have that constant worry about her welfare. That should enable me to focus on achieving the best possible outcome from the treatment. The second advantage is that while I am still well, and while we have time to choose, I can research various options and make some valid comparisons. If we leave it until we hit whatever crisis may ensue, my fear is that Jackie will end up with a less than optimal solution to her needs. That's not to say that the family won't do the best possible for her - of course they will - but choices may be limited if it has to be done in a hurry. Not only that, but Jackie will be hit by the double whammy of losing me and her home in the same week. By taking this approach, we can take one 'whammy' at a time and get her settled into her new home before the other crisis hits, assuming that it does at some point.
The search starts today and I am off to see what I hope will be an ideal environment for her. All of the feedback I have had on it strongly suggests that this belongs in the top two of our shortlist. They have a track record of being especially responsive to the individual needs of their residents - and that is just what is needed. Whether they choose to take her is their call - they don't operate a waiting list but look for a 'good fit' with the rest of the residents. Even that policy bodes well as they are clearly thinking of the welfare of all of their residents. As ever, I am optimistic!
Saturday 31 January 2015
Oncology
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.
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.
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!
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