It's already a week since I last blogged.
Hope no one's worrying.Cos the reason is that there's been nothing much to report.We have achieved a sort of Equilibrium with the help of the drugs and the Lack of Crises is a very welcome interlude.However, I can't remain on this drug cocktail for ever, not least because the steroids are gradually making me weaker and weaker. So once again we have to Tinker. And hope that my own immune system will fill the gaps as we reduce the drug intake.So we've started by reducing the steroids from 35 to 30mg per day.Still quite a high dose, I'm told, but a step in the right direction.No noticeable effect so far, but it's early days yet...Got a chiropodist to come and see me today to tidy up my poor feet which have been suffering from splintered nails and the constriction of Surgical Stockings overnight. She did a grand job and me Plates are a lot more comfortable now.
No, they're not really mine. Nice though, aren't they?!
Other treatments on the horizon are the Cauterisation of 2 tear ducts (out of 4) on Tuesday next week (19/6) to try and relieve my dry/smarting eyes, and then a long-term course of ECP treatment (Extracorporeal Photopheresis) which is thought to assist recovery from symptoms induced by both GvHD and steroids, although it's quite new so the evidence is thin. Worth a go though. It involves taking blood out of the body, exposing it to UV light and putting it back again.Here's a clear description of the process and how it's thought to work from the Stanford University School of Medicine website:The process requires the patient's blood to be temporarily drawn intravenously and then the white-blood cells (WBCs) are separated before the rest of the blood is returned to the patient. The WBCs are then mixed with a liquid medication called psoralen (UVADEX®), which makes the T-lymphocytes more sensitive to ultraviolet (UV) light, more specifically the long wavelength form called UVA. Afterwards, the WBCs are exposed to the UVA which promotes death of the diseased cells. Then the treated WBCs are returned to the patient. The mechanism of photopheresis is still unclear, and there are several theories on possible ways it works. One such theory states that after the treated WBCs are returned to the body, the immune system recognizes the dying abnormal cells and begins to produce healthy lymphocytes to fight against those cells.
It involves a consecutive afternoon and morning of treatment on a machine similar to a dialysis machine, twice a fortnight for 6-9 months or possibly longer, and I'm booked in to St Thomas's for my first session on June 28th. So I'm afraid the rope-pulling will need to continue for a while yet...
To conclude, I will return to the theme of Stability with an offering from my godson Sam, via his mum Cate, which I rather enjoyed:Q. What's a horse's favourite sport?
A. Stable tennis
My God you scared me, Those Feet! I thought that you were morphing into a Yeti care of the NHS.
ReplyDeleteAnd at what point do you mention(ever so gently) to an old friend that he is actually now a fully functional Yeti? And WHAT do you say to his wife?
And what is the prognosis for Yeti in central London ( probably wouldnt get a second glance) maybe its the route to power (think Boris) perhaps the Yeti state is greatly to be desired.
My fear has now quite turned to regret that they are Not Your Feet. x
Mine aren't quite as hairy, but they're considerably more twisted and be-bunioned than those pictured. They haven't had an easy life, but at least they're getting a bit of Care and Attention now with the Chiropodist's ministrations yday and a Reflexology session booked for this Wed. Looking fwd to that.
DeleteDon't hobbits live in something like a burrow? So a Burrows SHOULD have hobbit like feet... it all makes sense!
ReplyDelete