Saturday, 31 May 2014
Guess where i am?
Tuesday I went in for the start of the procedure for the stem cell harvest, initially getting cyclophosphomide (chemo). The morning I took my paracetamol and kept the bug at bay, for a while anyway. Turns out I had this chemo before as part of the R-CHOP, although the one I got today was three times as strong, probably three times as much. It all went pretty well and got some magnesium after as the counts were a bit low and have to go back on Thursday to get the counts checked again and probably get some potassium. Started to feel a bit of a fever coming on towards the end but when the nurse took my temp it was sitting 36.5 and headed on home.
Still feeling a little rough I took my temp at home and was already up to 37.4 and shortly after that up to 38.
While in Hosp earlier they said if I get a temp to call the helpline, I told her that I've been getting a temperature everyday for over a week but she didn't respond. So I just took some paracetamol and waited, seemed to settle for a while but was also feeling rough from getting the chemo and took an early night. Woke up a couple hours later and was roasting, the room and me, I went downstairs and it was "how to" week on discovery and lay and watched that for a couple hours till I thought I could go to sleep.
After getting to sleep about 3 I woke again at 5.30 and had another temp, this has been much worse than before and after much willing myself to get up I finally did and was told to go to the treatment room when it opened.
I already had all my stuff packed for a long stay and left it so it could be brought up later if needed which I was already quite sure it would be. Summing up the whole day they took bloods gave me antibiotics and paracetamol and there was a lot of waiting on a bed in a ward. Finally got a bed in the same ward as the one I was in with "the Fat Man" after the first ESHAP. Continued with antibiotics and got a bit of potassium, that night I slept much better than I was expecting, still not great though, but the ward I'm in seems quite pleasant, no one really talks.
During Thursday I had a few occasions of feeling very rough but kept taking paracetamol before any fevers or temps kicked in and that night I thought I would start to let them linger so the was written evidence that they were still happening. Had one about 10 at night then another in the morning at 5.
Next afternoon when the doctor came round he implied that I would be in until Wednesday. I thought this might be the case or more than likely at least Thursday. I knew for a fact if be in until Sunday at the earliest for the blood cultures to come back, but he was saying that there was still nothing growing on them, maybe looks like it is a virus, but they are continuing with the antibiotics until Wednesday for the stem cell harvest.
The pain from the white cell injections has not been half as bad as I was expecting.... so far, but there is still time for it to get bad, but I'm in the best place for pain relief.
Mostly this time around I have been sleeping, not got much reading done and not watched much TV either, although I did watch the england match and tried to watch the NI game but it kept buffering and was bugging me so I just went to bed. Watched die hard and die harder, will work through the rest of them this week I guess.
I think I will stop reordering games, ordered worms for the ps4 a few weeks back but this is the 3rd game I've preordered (for cheap) and each time I've been in hospital for the release date and lose a bit of interest by the time I get home to play it, bit annoying.
Even though I'm in Hosp its the best place for me atm for the antibiotics and pain relief and to keep an eye on me to make sure nothing stupid happens to put the plans back, pitty I'm missing the sun but I'm very tempted to sneak out for a while....
Monday, 26 May 2014
What is next
So I was able to hold off until Friday when I had an appointment to go to hospital. All went as usual and then went in to see the doctor who said that the Nodes had all went down a bit, the doctor is a bit hard to read at times but I think he was a bit disappointed when he said "a bit" and he had maybe been hoping for more of a change. Anyway it doesn't really matter much as they're going on with the next stage which I have finally got round to finding out about in more detail, he basically ignored me when I was saying about feeling rough the last week. Firstly there are some tests that need to be done before anything goes further ahead and so forth, the first was checking for less common serious infections such as HIV and a list of other things that I can't remember, basically a couple blood test which needed a signature to allow them to do it. There were a lot of other signatures they wanted to be allowed to go ahead with everything.
After all that was sorted they got me round to get some bloods as some of my counts were lower than they would have liked, not low, just lower, so I got a couple of units of red blood cells and a bag of magnesium to pick that up and have to continue taking some at home.
So this is what is next...
STEP 1: Tuesday I will be going in for more chemo, Cyclophosphamide. This chemo is to stimulate the bone marrow to produce more stem cells and reduce the lymphoma a bit more too. The main problem with this one is that it can cause bleeding in your bladder and so you can pee blood, but they have stuff to prevent this and IV when I'm in hospital and some tablets to take at home. This is just a day procedure and only takes a few hours.
STEP 2: From Wednesday to the following Tuesday I will be taking an injection in the mornings and evenings, this is known as G-CSF (granulocyte-colony stimulating factor). This is also to stimulate the bone marrow to produce more stem cells. With this the main problem will be painful bones, which will be a "good thing" as it is telling us that it is doing what it should be, already stocked up on paracetamol, but the last time I had this (I got it each time after the ESHAP) the pain was more in the skin than bones and the IV paracetamol combined with some morphine painkiller done nothing for it, that was just a single dose of it so I'm expecting after 14 it will be quite intense.
STEP 3: Wednesday after the G-CSF has been completed and bloods have been taken to check that there is an ample supply of cells, if not they continue the G-CSF for a few more days until there are. They will start the Peripheral Blood Stem Cell Collection, this is done on a machine something like a dialysis machine, blood is taken from one arm and returned in the other. The machine is called a cell separator and does just that, there is only about a third of a pint of blood out at any one time, but it is apparently very draining and you get very tired with the process which lasts about 2-3 hours and can take up to 3 visits to get all the stem cells they need, but you go home after each one. Once you start on this the pains subside very quickly. During this process you get an anticlotting agent called ACD-A which can cause a few problems but nothing too severe.
STEP 4: Waiting, maybe, could be a week, could be a month, could be longer. Should find out either tomorrow (chemo day) or next Wednesday (Stem cell harvest day)
STEP 5: High-Dose Chemo, the high dose chemo is given over a few days and is called "conditioning". I do not know which chemo they will be using but I do know that it has all the same side effects as the other chemos but a lot more severe as it is a high dose and all. At this stage I will be in hospital in isolation. The high-dose chemo is to stop the growth of any fast growing cells, such as cancer cells, bone marrow, blood cells, hair etc and so I would have no immune system.
STEP 6: After the conditioning is when they infuse my blood stem cells back into me (known as Day Zero), this is normally at least 2 days after the chemo to make sure it is all flushed out and does not attack the stem cells going in. The infusion will only take about 40 minutes to an hour to complete, a bit like a blood infusion. There are some side effects of this but it is mostly caused by DSMO which is a preserving agent when freezing the stem cells, nausea, altered taste, but only temporary. It is also supposed to smell like sweetcorn and can make my breath and the room smell that way too.
STEP 7: More waiting, the next part is known as engrafting, this is when the stem cells graft themselves onto my bone marrow and the two tissues grow together and start working normally again. After about 8-12 days the new cells begin to show in the blood, firstly the neutrophill, then platelets and finally the red blood cells, this can vary in time but once the body is making enough of all the blood cells I will be allowed to go home, normally between 14 and 21 days after the infusion (Day Zero)
STEP 8: After... this is when things get a bit boring and I guess more waiting and follow up appointments and check-ups. "It may be as long as 6-12 months to feel yourself again". "Cannot travel for at least 3 months ... many travel companies will refuse travel insurance", can't get some vaccinations, "most people wait at least 6 months before returning to work".
So I guess that is everything for now, it's all quite fascinating in a way, oh yeah at some point I'll be getting a central line put in, think that is after the stem cell harvest, all we need now is it to work.
Wednesday, 21 May 2014
What's next?
So I've basically been putting this off for a while cause I couldn't be bothered writing it up, which in turn has made it a longer post than if I was to just write something once a week or so. But from the previous one I finally got home on the Thursday, there were no problems after getting rid of the temperature on the Monday, apart from the low neutrophill count. was quite tired over the weekend as the four days extra I spent in hospital are normally the days that I build up my strength again, but at least I got all the things I needed to get done, done.
The freedom was short lived though and I was back in to hospital on the Monday to get my next and last planned cycle of ESHAP. I sort of knew what to expect and when to expect it so we were prepared as to when to start certain drugs to reduce side effects which all seemed to go as planned... as such. The main problem I have is fluid retention, with getting 8L a day plus whatever I drink and what I would get from eating too certainly pushed it to near 10L easily. It's a very unpleasant experience being so bloated, the diuretics are great for getting rid of it though and the constant having to have instant access to a loo was much better this time as I had my own room with a bit of a view of the Lisburn Road rather than a car park or the centre balcony place in the middle of the building.
The rest of the treatment was going pretty well and they put me on some potassium fluids to help increase that as I was passing so much fluid it was dropping that which happened the previous two times as well so I was glad they started it before it got too bad at the end of the week... that is until it was the end of the week and the levels were still low along with the Magnesium and so they decided to keep me in to increase that. I didn't mind this and was moved to another room by myself right beside where I was last week. The Saturday the Magnesium was still low so they are keeping me in for another day, that evening when I went to go to the loo, it was flooded so I called the nurse and they had to get maintenance to come out and get that sorted, apparently it was flooding in the corridor too but my shower had stopped it from spreading anywhere but the toilet room and spent the night watching TV on my TV which works perfectly when the antennae is hung out the window.
Sunday came along and I had the hypersensitivity again all over and couldn't move or do anything without being sore, which to my surprise is caused by the white blood cells being high, they were 180, yes 1 hundred and 80, mine normally sit at around 20 (I believe normal is around 5-15). They are so high because of an injection you get after chemo to boost your WBCs, obviously does a good job for me. But they will be keeping me in again tonight as they are unhappy to send me home with such a high count, I certainly didn't mind this as they were going to be giving me painkillers for it, on apparent "strong" on and IV paracetamol, neither of which turned out to do anything for the pain. So basically the whole day I just hid under my covers and kept warm to try and ease it, which seemed to be the most comforting thing at least. My dad came up and we listened to City winning the BPL on the digital radio inbuilt on the portable digital TV that I got.
Monday came and they took the bloods and had extra trouble with the picc line and getting the blood through that. When the doctors came round they said they were going to get the picc line sorted so I'd have to go for an X-ray and then some fluid put into it to clear it up, he also said that the potassium levels were low and they'd keep me in till that was higher, which peeved me off cause the last two days they were fine then suddenly today all crap again, but once I got over that I was happy that at least I'd get to see The Island in peace. Nurse came round soon after the doctors to take bloods because the readings they got weren't right, because of the way the other nurse had taken the bloods in the morning. I'll not say anything about the blunders earlier in the week, one of which possibly could have killed me if I didn't notice it. Anyway later I went and got my X-ray which I walked down to which was good, done me out though and came back, that's basically all that happened hospital-wise even the potassium wasn't started to quite late. Next day the docs came round I made sure they were aware of the mix-up yesterday and they were happy with the counts today, so I just had to wait for the picc line to be cleared which was supposed to be done yesterday. Finally got home just after 5 and ate too much for dinner.
The next while is going to be tough recovering from being in for so long and not getting my fitness back after the previous cycle, which was very evident on Friday, I got a call on Thursday to say about a last minute cancelation and to come up for my CT scan, would prefer it to be next week due to just getting the chemo last week but it's good enough I guess being on the Friday, after I had to go to the GP to pick up my sick line and walked home from there, was completely done out. I just have no energy and get quite sore after.
Saturday I woke up and had a bit of a temperature, took a couple of paracetamol and it cleared up for the rest of the day, this has now been a recurring thing all week, although the temp hasn't reached that critical point were I feel I need to get in contact with hospital and each day I've had different problems joining it, Sunday was my chest being sore with deep breaths, Monday was my back throbbing and a bit of chest, Tuesday was my back again I think, and today Wednesday has been my neck and head, the paracetamol seems to do the job mostly so I'm happy enough at the moment to try and hold off until Friday. I've been trying to get out as much as possible to get some exercise but it's not easy, the getting out and the exercising all I want to do is roll up into a ball most of the time or fall asleep. Hopefully will pass soon, but by that time I'll be on the next stage of the treatment, which I'm looking forward to in an inquisitive way, but not looking forward to in a physical way. Will find out soon enough though I guess.