Wednesday, 21 May 2014

A very welcome improvement

Over the last ten days or so I've noticed a number of improvements in how I'm feeling. My pain is still well controlled, the fatigue that was becoming an increasing concern for me has gradually begun to ease and my appetite has improved a little. I'm feeling much more energetic than I've been for a while and I'm experiencing less nausea too. Taken together I really feel like I've taken a step forward in comparison to how I've been these last weeks. Just like so much about my illness I can't offer any real explanation for this improvement in my condition. I'd like to think that it indicates that the pazopanib is working, but I'm trying not to get too excited as only a couple of weeks ago I was pretty sure it wasn't! I'll find out for certain when I get the result of my next scan in three or so weeks time.
Not only have I been feeling better these last few days but the weather has also decided to perk up too. This has given Katie and I the chance to get out of the house a little, I've even taken my camera out a few times. We've visited a couple of very nice gardens, I can particularly recommend the 'secret gardens' at Kilver Court if you ever happen to be in Shepton Mallet. Aside from that we've been putting our BBQ to good use, sitting in the garden in the early afternoon sun is a very nice way to while away a couple of hours!
Here's a photo of Kilver Court:
Those of you who read my last blog post regarding Archbishop Mennini's recent intervention on the Assisted Dying bill may be interested to know that Dignity in Dying, the charity campaigning for the bill to be passed into law, decided to share my blog entry on their website (click here to view). I'm really pleased my blog entry has been able to reach a wider audience and to help support Dignity in Dying in this very important campaign.  

Sunday, 11 May 2014

Disagreeing with Mennini

There's an Italian seeking to block the progress of a new Bill that is due to be debated in Parliament soon. You may be relieved to know that the Italian concerned is not Silvio Berlusconi, perhaps you have not even heard of him, his name is Antonio Mennini. Mennini is the Pope's representative to Great Britain and the Bill in question is Lord Falconer's Assisted Dying Bill.
I've written before about my support for this Bill which, if is it passed into law, will give terminally ill people the right to have a choice about the timing of their own death. It will allow a terminally ill person to request a doctor to prescribe for them a lethal dose of medication. The only person permitted to administer this medication will be the terminally ill person themselves. The aim of the bill is to offer terminally ill people a way to avoid the pain and suffering sometimes associated with the period before death.
The Bill includes many safeguards to protect vulnerable people who may fear that the changes in the law could be used to bring their lives to an early end without their consent. The authors of the Bill looked at other countries in which similar laws have been operating successfully and safely for several years in order to understand how best to construct these safeguards.
Archbishop Mennini recently spoke at a plenary meeting of the Bishops' Conference of England and Wales and used that occasion to encourage the audience to work against the Bill. The Catholic Herald has reported the Archbishop's speech in full on their website here.
I understand that the Catholic Church's major objection to the bill is one of principle, namely it holds that life is a gift from God and is sacred from conception to natural ending. No doubt this is a view that is held sincerely by many religious people, however it is by no means universally accepted. As an atheist I don't believe that life is a gift from God. In respect to the terminally ill I believe that there are certain, limited circumstances, where an individual has the right to decide whether or not they wish to end their life.  
I respect Mennini's right not to wish to make use of the facility provided by this Bill. If the Archbishop would not want the right to make a choice about the timing of his own death should he be terminally ill then I would fully support his entitlement to this position. However, in his words I see no respect for my own wishes or for those of many other people in my position. If the Bill is passed I will be able to make my choice and he will be able to make his, if the Bill is defeated then I will be denied my choice whereas his will still be available to him.
The Archbishop says nothing about the minority of terminally ill people who today undergo terrible and sometimes prolonged suffering before they die. Reading his objections to the Bill it would be easy to forget that these people exist. As someone who is terminally ill with cancer and who has seen close relatives suffer and die from this disease I have a very personal stake in the success of Lord Falconer's Bill. I consider it strong evidence of the weakness of Mennini's argument that he discusses this issue without once mentioning the position that I and many others find ourselves in. Are we so insignificant that he cannot find a moment to even acknowledge us?
If you would like to find out more about Lord Falconer's Bill on Assisted Dying or support its adoption please visit the website of 'Dignity in Dying'.

Sunday, 4 May 2014

Patched up

It's nice to be able to write that I've been feeling better this week. On Monday my hospice nurse and my doctor decided that I should start using pain killing patches to help control the pain I'd been experiencing. These patches are about the size of a postage stamp and adhere to the skin through which they slowly release a constant dose of medication. When I do get problems I take additional pain killers which I've found work well in combination with the patches. The control of my pain is definitely better now than it was a week ago. 
I'm still experiencing fatigue although this is very variable and generally goes away once I've had a snooze. I'm also finding that any kind of exercise makes me feel nauseous or causes pain in my abdomen, chest and back. Even simple things like doing the vacuum cleaning or going for a walk seem to have this effect. I'm feeling guilty because I can't help Katie with the chores though she's being very good about this - she's a star.

We've signed up for a course at the hospice entitled "Palliative Rehabilitation Programme", it looks at techniques for managing the physical and psychological issues faced by people in my situation. Hopefully it will provide some useful ideas on how to minimise symptoms. 

I've been watching the BBC's latest natural history series, "Monkey Planet". I find it amazing that wildlife film makers can still find extraordinary examples of animal behaviour that have probably never been filmed before. This series is full of film illustrating the intelligence and complex societies of primates.

Watching "Monkey Planet" got me thinking about some of the best encounters Katie and I have had with wild primates. In 2010 we were lucky enough to visit Uganda. Many people go to Uganda to see Mountain Gorillas. Seeing these animals in the wild is an experience that is never to be forgotten, there is an air of gentleness about them but I was also constantly aware of the tremendous strength and power they posses. This photo was taken in the fabulously named 'Bwindi Impenetrable Forest':

Seeing the gorillas was a special experience but for me the highlight of our trip was going chimpanzee trekking. There is something about observing wild chimps that I found quite unnerving, they are like humans with the social restraints removed and seemed to me to provide a mirror on human behaviour in which both the worst and best elements are highlighted. Here are a couple of chimps showing their nicer side, two brothers playing in Kyambura Gorge. To be within just a few feet of them as I took this photo was one of the best wildlife encounters I've ever had.