Well hasn't it been a while since I spoke to you last?
And why is that then? Well when I last sat to compose my thoughts for your attention I was talking about a few different things. I did go out on a trip to the Kelvingrove Art Gallery with my aunt and uncle, which was tremendous. I hadn't been there since I was at Glasgow Uni (I graduated in '99 so it was seriously overdue) and I had a tremendous time. I was also planning to go out with the extended family for a meal on the Saturday but I didn't make that due to being unwell sadly. That's been pretty much the way of things since.
The only positive thing I can really say that I have achieved in the last 6 weeks is that I have taken up guitar lessons. I have a tutor who comes in once a week and he has taken to the perhaps unenviable task of trying to correct the many bad habits I picked up from my teaching myself how to play. I figured if I was going to play the new guitar to a decent standard I would better get some actual guidance. The lessons have been brilliant but even they have fallen foul of my fragile health with having to miss a couple due to the latest bout of infection.
I have also missed several clinic appointments, notably the respiratory clinic as I don't feel I should go to a clinic with an upper respiratory tract infection as I would just infect the other patients at it. I have also missed getting my flu vaccination and if I don't improve rapidly over the next few days then I'll also be missing my bone marrow transplant clinic (and my monthly immunoglobulin infusion). I feel so weak that I seriously think that I am better just staying home and sleeping my way through it.
I've also missed a few planned social trips, with people instead having to come by the house to see me instead of the plan of going out and doing something. I had such great intentions too but I suppose that while the spirit is willing, the flesh is indeed weak.
And so to the thing I really want to tell you about, and the biggest let down of all for me.
I was contacted by one of the transplant team about 5 weeks ago to ask me if I was willing to be a speaker at a conference they were organising for Wednesday the 22nd of October in London (a small conurbation in the south east of England). He had been put onto me by the transplant co-ordinator in charge of my case as she thought I would be an excellent person to give voice to the thoughts of patients in my position. Apparently Kirstie had told him that I was intelligent and articulate enough to do justice to the topic of patient risk in transplant, and more specifically whether they're given enough information prior to transplant. I've done a few of these kind of talks before for medical staff and I have always got great feedback because I give the medical staff an insight into the state of mind of the patient that no doctor or nurse could really claim to have. Now I reckon I've done well over a hundred presentations and lectures at various stages of my research career prior to this so the notion of standing up (or in recent times sitting down) and delivering those thoughts doesn't worry me in the slightest. I have a confidence in my own opinions that borders on arrogance but that doesn't mean that I don't suffer from anxiety. I knew I could talk with authority on the given subject because I have been consented on two transplants now and so have two discrete experiences to compare and contrast. Where my anxiety stems from is due to the weak flesh I mentioned earlier.
As I mentioned the conference is down in that London and the fact of the matter is I would have had to go down and back in the same day and I had to come to the conclusion that I'm simply not strong enough to do it any more. I look at my trips to the hospital and how exhausted I am after them and even consider the fact that I had to go to one of the rooms at the hotel for several hours on the day of my sister's wedding then there's no getting away from the fact that I can't do something that would involve that level of exertion now. I wish it weren't so but I really am pretty badly damaged these days. I also wasn't particularly keen on the notion of going down and back in a pressurised tin can with the recycled air of a hundred or so passengers and all the bugs that they carry so I had to knock back the Prof's offer. The fact I was relieved when I told him he'd need to find someone else to do it tells you that I made the right decision. I'm not happy by any means but I recognise the reality in front of me.
For what it's worth my opinion is that if we are to talk about 'informed consent' for patients then you quite simply have to give them access to as much information as is possible. The docs tell me that they've been encountering patients who are choosing not to go for the transplant option because they're quite simply too scared of the risks. While I understand that the doctors could get more people to consent to transplant I don't think that it should be at the expense of the informed part of the consent. When I was consented for the bone marrow transplant I was told 8 times in the half hour meeting that there was a risk of dying associated with going ahead with the transplant. In fact the consultant responsible went out of her way to tell me that 'If you're not scared at this point then you haven't fully understood the risks'. Having said that there may well be room within the consenting procedure for the lung transplant team to get more patients to consent by choosing to give patients access to as much, or as little, as they need to satisfy their own needs. Some patients, like me for instance, want to read at length about all aspects of treatment and recovery but there are those who will fixate on things like statistics when they don't actually mean anything to your own case. The example I give is that I was told (because I asked) that about ten percent of patients die on the surgical table due to unforeseen complications in the surgery itself. Now that's interesting but I know it has absolutely no bearing on what will happen to me so I don't fixate on it. Other patients apparently do fixate on things like that so I would say to the doctors to have an absolute minimum that they have to say to fully consent and only to go further if the patient shows that they are inclined to be the sort who would go out of their way to find things out on their own.
Obviously I'd stretch that paragraph out a little with other examples or it would be a very short talk indeed. To be honest I'm not sure I've structured even that paragraph as well as I'd have liked but if I spent the time to actually put it into a talk like I would have done if I was giving it then it would have been much better organised and clearer.
In other news I have changed my pain medication protocol. I was using diazepam as a muscle relaxant to deal with the constant leg pain I've been experiencing through muscle atrophy and the side effect has been to make my mind very fuzzy indeed. Now because I was coming off that it was felt that I would need to increase my co-codamol dose to make up for the diazepam. Annoyingly the dose I was prescribed was far too much for me (it had quadrupled) and it led to me grinding my teeth and having a constant metallic taste in my mouth, so I've gone for a middle ground of having about twice my previous dose which seems to be working much better.
One other thing is that today is the 14th anniversary of diagnosis day (you can read about that by clicking here if you're relatively new here). There's not many doctors who would have bet on me still being around this long post transplant so every day I confound them is a mini victory for me. A lot of those days may well be spent under my bedclothes but while there's life there is indeed hope.
