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!
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