So this blog finds me writing to you from the rather calming environment of Royal Trinity Hospice in Clapham, South London. I have been here for 21 days now.
My Palliative Care Nurse, Joel, has been managing my pain and after endless meetings with the oncologists it was decided that he should assume overall responsibility for my pain control. Unfortunately, no matter what we have been trying, my pain has remained a constant thorn in my side, or in my case a pain in both sides, as well as my back and front. Thankfully, it is beginning to feel like progress is being made
So 80mg of OxcyCodone has become 120mg and now 200mg. 100mcg of Abstral has become 200mg and ended up as 800mcg. All of these increases have corellated with the law of diminishing returns. The more I took, the more I needed and the less it seemed to be helping. We are now nearing a happy medium.
One good thing is that I am in an environment where they have seen it all, and I am in safe and capable hands. I am positive that I will eventually reach a balance between being able to function relatively easily and not be in in excruciating pain all the time.
Of course being in a hopsice is a quite a sobering experience as a lot of people here are on their last legs and are being made as comfortable as possible, as there is nothing more to be done for them medically. On the topic of sobering experiences, we managed to sneak off to the Imperial War Museum to see the ceramic poppies on display.
So it probably wasn't the best idea for us to watch Louis Theroux's documentary about three people in the US who had chosen, for various reasons, to exercise their right to die. Theroux dealt with the people in his usual quizzical but mostly empathic way, and all I thought was why the hell I am watching this, but wanted to see it through. Again it has made me think that any individual who is of sound mind should have the final say when it comes making such a grave decision, and society shouldn't butt in.
So once again a sense of perspective is important as I am in a much better place than most here. What it has also made me realise even more is that Jay is a very special person and I am lucky to have her in my life. Despite all of our problems, we are still a couple who love each other and enjoy each other's company. I'll read this to her and observe her reaction. Deafening silence may not be a good sign for me.
Not only is she my wife, friend and carer, she is also a very strict editor, who makes sure I don't say anything too controversial....once in a while I slip an off-colour joke past her and into the blog.
Wheelchairgate is over. A guy from the wheelchair company rocked up a few Fridays ago and was aghast that nothing had happened for over two months. He told me he'd been on leave and couldn't believe fixing my chair was still an outstanding job and nothing had happened in his absence. He took my chair to his van to fit the replaement part and returned 10 minutes later with a fixed chair and a lot of apologies.
It is amazing that his company can operate in such a vortex of incompetence. Such is life. My written compaint is being formulated and will not be subject to any Jay editing. I need a pain free hour or two to whip up some proper righteous indignation before I tackle it.
Here is the important question of the day- when you have mysterious, but intense pain on your left shoulder and weird spots that are super itchy, what could it possibly be? This pain in my left shoulder feels like my skin is being burnt, and I thought the pain or morphine was making me scratch it like a madman. I also have areas at the top of my back that are super sensitive and I make Jay put dressings on them, even though there is nothing visible. Very odd, but then again that seems to be my lot in life: confuse the hell out of the doctors of the world.
I was wrong and the answer to the "what could it be" question is shingles. Yep. Shingles. How bloody typical of me to get shingles to add to my 1001 maladies. It would explain the random pain and sores. So I am on a course of oral medication to deal with that and hopefully once treated, my overall pain score will come down a bit. Bloody shingles. A colleague from the Civil Service used to tell us how shingles had made his wife bed bound through pain and I can fully sympathise with her now. It really is rather painful.
The other problem is that I am now persona non grata as I am infectious and wear the red badge of shame on my door.
So friends, I feel like I am getting somewhere with my pain treatment and peripheral issues, but I am struggling to remain patient, positive and perky. Time is moving slowly, and I am an impatient human at the best of times, so I am really digging deep to project a more sunny disposition.
*I have now returned home and I am happy to be back after three weeks. I also have a month's worth of the most boring admin to do. My drugs alone will take days to sort through and organise as I have changed doses for 10 medications, added 7, lost 4.....I sense you dozing off.
Have a lovely Xmas everyone and please donate something to your local hospice if you can. They are run by a combination of professionals and loads of lovely volunteers. And mine has a slug (Fusbal to non-Zimbos) table. I may be sick and disabled, but I am still the slug version of the great Rambo Mercedes Sibanda of Highlanders FC, Bulawayo's best team.
https://www.royaltrinityhospice.london/
** It was great seeing Jay's Uncle Deryk and Aunt Joan, who were over from Florida. We had a few fun gatherings and managed to visit poncy Kensington Whole Foods (wow what great food but a packet of puffed quinoa downstairs costs the same as a big bowl of amazing noodles in the upstairs food court), have a few meals together and visit the Imperial War Museum. Thanks to them for the gifts and transporting a few die cast models for me.
***Goodbye and good luck to Cousin Leah who is returning to South Africa after a year in the UK working, travelling and hopefully having a great time. We'll miss you and wish you luck with your studies. The various establishments that provide libations will definitely miss you too.
