This account starts in the last week of August and consists of some diary-type entries, which I did before I got the blog up and running.
At the start the ‘bad’ plasma levels I needed to reduce came down very well. Towards the end they appeared to plateau. The next phase of treatment is a stem cell transplant and I needed low levels. After doing the seventh cycle to get them down a bit more, it was decided to go ahead with the transplant, as although it the levels were still a bit borderline, they were a bit tricky to interpret and it was felt I couldn’t really do another cycle. Also, the large doses of chemo involved in the next stage should help.
My timing wasn’t great as I was in a queue of people – 6 people needed transplants! The holidays didn’t help. However, you can’t rush the process and lots of things have to happen before the transplant goes ahead.
Firstly I had to go into hospital overnight for a big dose of chemo to stimulate the production of stem cells. Then I have had to inject myself (in the stomach) every day with a substance to encourage the stem cells to move into my bloodstream so they can be removed. (This can be done by the hospital, but it’s not difficult or very painful).
The various side effects of the chemo and injection were annoying but not overwhelming. They are mainly queasiness, sore mouth, bad stomach, aching joints, flu-type feelings, tiredness, hot flushes (most annoying!!) and eventual hair loss.
I have been contacted by the hospital wig dept but I shan’t bother with one. I will get them to cut or shave my head as necessary and they also have good scarves and bandeaux (?). After the next lot of chemo I will probably lose ALL my body hair!
Next week I have to go to Leicester for between one and three sessions as an outpatient to have the stem cells removed and frozen. This just means being hooked up to a machine – blood in and out – for around 4 hours a go. They take enough for two transplants.
After this I have to have lots of tests to make sure I am healthy enough to have the tranplant, so my urine, lungs, heart etc are all tested and I will be swabbed for viruses/bacteria etc. A line will be inserted in my chest so chemo, stem cells and other medications and fluids can be put straight into my veins. This is done under sedation.
Hopefully I will go in for my transplant the first week of October. I have a huge dose of chemo, lots of fluids and then the stem cells put back in to rebuild my immune system. It is likely that I will spend a month in hospital, as I will need to be relatively isolated and I will also be very poorly to start with. Then I will come home and spend time recovering, which could take up to a few months – but it’s very difficult to say at this stage. Much depends on how quickly the immune system rebuilds – and of course schools are not the best places for a dodgy immune system.
Hopefully everything will go according to plan, but of course there could be delays if I get an infection. I have only had one so far, a long time ago and not very serious then, so I am pinning my hopes on my fairly robust system built up from years of exposure to coughing and sniffing children.
Last week I went to stay with my friend Chris in Leics, so I could do the stem cell collection without travelling – many thanks Chris and Paul for the wonderful hospitality!
I did two days of collection and unfortunately they were not able to collect anywhere near enough stem cells. (There is some sort of calculation based on body weight). This was very disappointing, but not necessarily catastrophic – seeing the consultant tomorrow.
For those interested in stem cell collection:
I had to get into Leics haematology outpatients by 8.30. I had blood tests, blood pressure and temperature done. Leics have an inner room with two beds and machines (I was alone). I had one needle in my right arm (crook of arm) to remove the blood (two tubes – blood is mixed with anti- coagulant) and one on the side of my left wrist to return it. It can take a bit of fiddling around to get the right one in and I ended up with spectacular bruises by the next morning, although they looked much worse than they felt!! (Some people already have a line in their chest which may make the procedure easier?)
The machine takes a bit of warming up and it’s all quite technical to get going. Once it is going you can’t move your right arm – the machine would punish you by bleeping and stopping. It also does this for no apparent reason too! Things were OK on Monday, with few hold-ups but on Tuesday the last hour and a half was very stop and go and sometimes the nurses had to flush the tube or press it. I also had to squeeze a ball quite fast for about an hour! It all took a bit over 4 hours each time and then a bit more to get you back the blood in the tubes etc. If you need the loo you have to have a commode and try to hold your arm straight. I managed without the second day by restricting my fluid intake.
I was fortunate enough to hear the guy who sells the machines take a nurse through it – it helped to pass the time! He told me that despite appearances, only about 180mls of blood is outside your body at one time – a little over half a coke can! I believe even less than that is actually removed for the cell collection – but am not sure.
Top tips for Leics (and possibly for other places):
Don’t forget your injections if you stay in Leics and if applicable, your permission forms.
Staff are really nice and helpful. As always – just ask.
I was offered food (free) as are other patients which I thought was good – it is very basic though (eg tuna sandwich is just that) so if you want something fancier take your own or ask a nurse if the other food trolley is nearby – it costs but the sandwiches are better. Take snack bars and drinks, but make sure you can get into them single handed!
Osborne block – bear left inside, take lift to second floor and take signs to haematology daycare.
Take socks if your feet are prone to cold
Go to loo at least twice beforehand
Get everything you want out on the tray bit over your bed before being hooked up, as you can’t reach it afterwards
Make sure you are sitting in the right position with the right number of pillows
Take lots to read – but no heavy books or ones where the pages close easily. I sort of propped them up against the tray. You can only write with your left hand (good for the 10 percenters!). I did crosswords and tried a Sudoku, but couldn’t write in the small numbers I need to help me! Also take music etc. There is a small TV on the side – I didn’t use it.
I took the bed nearest the door so at least I could see out.
Don’t clock watch (actually there’s no clock in the room) or time drags.
Nurses tell me the men fall asleep! I didn’t.
Make sure they give you the call button. Call immediately if you get tingly or feel unwell – a glucose tablet or glass of milk should put you right.
I got dropped just outside, but my observation is that parking is possible first thing, but when I came out at around 2.30 to 3.00 people were queuing along the road outside to get in, so bear that in mind if someone is coming to collect you. I waited in a layby just by the entrance. I would guess if someone comes with you they will need to pay for 6 to 8 hours parking.
Be prepared to be really tired in the evening. My blood pressure really dropped after the treatment, but maybe that was me! Also, my temperature hovered around 38, which is high for me, but I felt OK and the nurses just gave me the contact number in case. (The injections can raise your temperature – but I may have had a virus).
I did a sheet with contact numbers on for their files. They phoned between 5 and 6pm to say whether to come in or not.
I went home on Wed and arranged for me to see my consultant this week. I felt poorly on Thursday and went to the hospital, but after tests and being checked over nothing was found, although my temp was a bit high. Unfortunately I was given strong antibiotics in case I was about to develop something and they have made me feel a bit ropey.
My hair is starting to come out, although not yet in wodges! The grey hairs have gone weirdly curly and my scalp is sore at the crown. Going to get it cut short on Wednesday.
Still feel very tired, with shaky legs, but have pottered about a bit today.
My consultant says that Leics thinks we should try again with a different chemo regime called ESHAP, which seems to involve a longer stay in hospital and more chemo – but the chemo is good against myeloma. I’ll see her next week.
I had a No 1 haircut with a lovely lady at the hospital and now look like an escaped convict. My scalp is already less tender although some of the bristles are still coming out, so I guess I may go bald in places. The family seems to have adjusted well and enjoy running their hands over my scalp. I bought some scarves too for outside wear. I’m not embarrassed by the look, but I think it tends to mean people sort of focus on your head and disease when you talk to them, so I’ll probably wear a scarf when I meet people. I can get a free wig if I want it – I tried one on and it looked pretty good, but they are acrylic and could be hot, so I haven’t bothered at the moment.
I also had a body massage at the hospital – it’s a service they provide free and very welcome too!