Before I get side-tracked, I want to draw your attention to the lovely Heather von St James. Heather contacted me via the blog, and asked whether I would help promote Mesothelioma Awareness Day on 26th September by including her link in the blog. This is a particularly rare and lethal form of cancer which has a life expectancy of about 10 months – Heather was diagnosed when her daughter was three and a half months old, and that was seven years ago. Heather is living proof of the importance of a positive and sunny outlook in fighting cancer; she was accused of wearing rose-tinted spectacles and she agreed, saying she had no intention of changing. How lovely. Please do watch her video on her blog at http://www.mesothelioma.com/heather then share through social media if you are able.
It was nice to get the boost of her positive energy in my current state of limbo. I went to see my consultant on Monday and he was delighted with my blood results but underlined how debilitated my immune system is and how I am really still a bit of a newborn in stem cell transplant terms. I have to say I have come on in leaps and bounds since the Isle of Wight trip, but my new-found energy and hearty appetite tend to lead me astray in terms of thinking I am back to normal now. I might be feeling good, but my system is still busily building new cells and renewing my major organs. Which, frankly, seems rather strange. Periodically I wander off into a philosophical landscape where I wonder how much of the essence of the ‘old’ me is contained in my new body. Why have some bits of it got lost or destroyed? This troubles me greatly. According to my Bowen therapist my cells have forgotten the Bowen treatments I have had through the years, as my body reacted like a new patient when I started treatment again a few weeks ago. I used to be hypoglycaemic and had to watch my sugar intake very carefully – that doesn’t seem to be a problem now. Apparently all my childhood vaccines and immunity have been killed off by the pre-transplant chemo, so I will have to have them all again. But how come I still feel and act like ‘me’? Surely when the old cells die off naturally in a healthy person, as they do on a cyclical basis, the cells that replace them are somehow programmed to continue the legacy – all that has happened with me is that there was mass genocide and all the stem cells were replaced in one fell swoop. And since all those cells came from me in the first place they must all retain the memories they would have had if they had been replaced at a more normal rate. And if that is the case, why are some things ‘remembered’ and not others – like the vaccines? Confused? I sure as hell am, and if there is some bright spark out there who isn’t and can explain it all to me, please get in touch!
One thing my lovely consultant has done is to book me a PET scan as he wants official confirmation that the cancer has gone. Oh yes. This is the radioactive injection scenario from blog #2, only this time the whole procedure is likely to be a lot more sedate. The appointment is for next Wednesday and is at my usual hospital in Bournemouth. The PET scan roadshow rolls into town every other Wednesday and looks like that decontamination vehicle from the ET film. It comprises several vans connected by covered metal walkways; the walkways lead from the main reception area to separate, somewhat grandly named ‘cubicles’, where we wait in isolation for the injection to take effect. I have only seen half the process in the vans, as last time the scanner developed a fault and three of us had to belt over to Portsmouth which has a whole wing of the hospital devoted to ‘Nuclear Medicine’. So there is much excitement to come; I’m assuming that one of the walkways leads to the scanner, where I’ll be given instructions through some squeaky speaker, as nobody wants any contact once the radioactive injection has taken effect. It is a really strange feeling, knowing that I am dangerously radioactive to other people but feeling fine in myself. The worst part of the whole procedure is not being able to eat for six hours before the appointment. I have just started to enjoy food again, but need to eat at regular intervals to avoid feeling queasy. Just like the rest of cancer treatment, this will be a question of mind over matter.
My consultant described these early days after transplant as ‘being in limbo’, and he is absolutely right. After seven months of being in and out of hospital in one way or another, for at least two or three days a week, I have felt almost cast adrift in the last two months. I have gone from being extremely ill to (hopefully) in remission and for that I am eternally grateful, in spite of the barbaric and disgusting drugs. Once we get the scan results I will at least be able to move forward into the next camp and start to get some kind of a life back. At least a part of that life includes getting fit again, and in that department I will be greatly helped by a free 12 week membership to the local sports centre, courtesy of the hospital. I still have a big problem with my frozen right shoulder, which started during the transplant period in hospital and, although it is slowly improving, will prevent me from doing any of the things I really want to in order to get fit: pilates, yoga and swimming are all pretty difficult with one arm :-). I am having physio and Bowen therapy so I am hopeful that recovery is on the horizon. I loved having cranial osteopathy as it was uncovering an awful lot of old patterns and blocks, but unfortunately it is expensive and thus not a long term prospect for a chronic problem like my shoulder.
Just to catch you up on other therapies I have mentioned, remember the Hyperbaric Oxygen Therapy? I was planning on going back to that once my conventional treatment was over, but I had a letter a few weeks back informing me that the local centre has had to close due to funding problems. I’m really sad about that as I was looking forward to renewing my acquaintance with a whole bunch of positive people. Quite apart from the completely bizarre – and cold! – experience of the ‘dive’ it was enriching to hear their stories and how they cope with a lifelong illness like MS. Sure as hell makes a nice break from cancer! The closest centre is now Portsmouth, which is at least an hour’s journey from here, so I will have to give it some thought.
I mentioned the infra-red sauna therapy to my lovely consultant, who wants me to wait until my skin is back to normal before I go off doing something like that. Personally, I cannot wait to have a swim and sauna, but my skin is being especially troublesome at the moment in spite of my attempts to avoid the sun in recent months. Some of it is quite rough, and all of it is very dry, even though I use a whole load of potions on it, including coconut oil, and bathe and shower in the totally gorgeous but ‘friendly’ products I was given for my birthday. I also brush my skin every day. Mostly. I guess all this, the shoulder, the skin, the residual tiredness, is just to remind me I am not nearly there yet, and all good things come to those who wait. That was one of my dear mum’s favourite expressions, and I bet, when she has time to look in on me from wherever she is now, she is laughing her socks off. I can imagine the purists amongst you itching to comment that of course there won’t be socks in the afterlife, but I am betting there are. I gather that heaven/the hereafter/the interlife, whatever you want to call it, is supposed to be nicer and more fun than here, and I really would expect that ‘existence’ to include laughter. What would life (or not-life-but-something-else) be without a really good laugh, the sort that makes your tummy ache? You can’t be too precious about these things.
Wishing you sunshine and much laughter