“Once the first chemotherapy had failed plans were made to try alternative chemotherapy. This process started in May.”
18 May 2017
I have some very good news.
As you know, I have been undergoing the first stage of a new chemo regime. If my tumour was smaller at the end of this, I would go onto the next stage of treatment. If the tumour was not smaller, there’d be no more mainstream treatment and the prognosis would have been very poor. The chances of tumour reduction were 15-20%. I had my CT scan on Monday and this morning I met with the professor to get the results. And the tumour is smaller!
Very soon, I’ll have my stem cells harvested. Then I’ll be admitted to hospital for 3 to 4 weeks for intensive chemo (a procedure which destroys the immune system) and then the harvested cells will be transplanted to rebuild my immune system. The chances of cure are about 50% although that’s based on old data for patient groups that had less effective a form of chemo. It’s heavy duty treatment which will take me 3 to 6 months to get over. But the main things is that I’m in with a fighting chance. It is no exaggeration to say that the prospect of a death sentence that I have been living with is history for now at least.
3 June 2017
I now have a hospital admission date (22 June). Before then I’ll have my stem cells harvested, I will have a line inserted in my chest to take various infusions and through which blood will be taken and I’ll have liver, heart and lung function tests. I’ll also be taking medication to trick my bone marrow into flooding my blood with stem cells. That way harvesting can be from the blood (painless) rather than the bone marrow (painful). It’s clever stuff.
I’ll be admitted to hospital for 3 to 4 weeks for 5 consecutive days of chemo (a procedure which destroys my white blood cells and so the immune system). After chemo, the harvested cells will be transplanted to rebuild my immune system. I’ll be discharged once my immune system is up and running. It’s clever stuff.
I’m not sure when but I’ll have a CT scan at some point after discharge to determine if this treatment has cured me. The best available stats are that the chances are 50%. But that’s not a wholly reliable estimate as it is based on outcomes using an older and less sophisticated type of treatment. So the chances are probably better but no one knows by how much. So Donald has been impeached. Let’s hope he’s removed from office. Let’s hope it’s clever stuff.
Apparently it takes 3 to 4 months to recover from the treatment by which they mean I’ll be feeling pretty rough for most of that time. That’s not so clever.
23 June 2017
Today is day two of my admission to Derriford hospital. I have a very nice, comfortable and sunny room with bucolic Devon views of the hospitals air con and central heating ducting. The staff are lovely and the food edible. Chemo started as soon as I was admitted.
They’re pretty relaxed in this first week about my movements – I can wander around the hospital and I can see any number of visitors. When the chemo destroys my immune system (in about a weeks time), I’m confined to my room and I’m allowed very few visitors. I should be out in 3 to 4 weeks.
6 July 2017
Hi Pam and Mairi.
I’m not inclined to send mass emails about latest developments as I don’t want to make a big deal of things. But if anyone asks please don’t treat it as a big secret.
These details are:
I have gastrointestinal mucositis which gives me very, very strong chest pains for which I’m taking frequent self-injections of proper morphine.
I’ve also got a hiatus hernia but medical opinion is divided about whether this is a big deal.
I’ve been running a very high temperature (over 39) but it has just come down.
You can tell those who know me a bit better that I’m shitting myself a lot too but I’ve got used to nurses dealing with this. I’ll be catheterised in a bit as I can’t pee and I have a litre of urine that needs to be expelled.
The doctor thinks I’ll be like this for days, possibly longer. It’s hard to predict.
I don’t want a fuss made of this. None of it is unusual and the medics are pretty chilled about everything.
20 July 2017
Dear Pam and Mairi.
Good news: I think I’ve turned a corner: the worst side effects seem to have gone, I’ve had sufficient strength to walk to the restaurant on the floor below to buy chips, although they were bland (as all food is at best) I ate them with pleasure or without wanting to be sick.
The appetite is still poor and many foods and drinks taste disgusting (which worsens my appetite). And, of course, my energy levels are still low. So some way to go.
I hope I’ll be discharged in a week if not sooner. The doctors will first want to be sure that my infections are under control. I’m hoping for a time estimate from the doctors asap.
22 July 2017
After 4 weeks banged up at the NHS’s pleasure, I was released yesterday. The experience was gruesome – I won’t bore you with the details but the side effects of chemo and the stem cell transplant; the effects of the planned destruction of my immune system and bone marrow; and the symptoms of the infections that I acquired are not ones I’d wish on anyone, not even Jeremy Hunt. I wasn’t well enough to receive visitors, so please forgive any rebuffs.
The doctors and nurses were absolutely fantastic and I can’t even begin to describe my gratitude to them. They got me through a very tough time.
As for Donald’s fate, I’ll know in 3 months when I have a CT scan to determine if he’s left the room. In the meantime it’s a slow recovery from being super-knackered and very regular monitoring by the hospital.