Well, finally I’m back in hospital for the big one. I will be starting the most aggressive chemotherapy I’ve had yet tomorrow, and it will last for six days. I’m not really nervous about getting the treatment, but it feels a little weird that this is the last one. It feels a bit like my final stand against the Lymphoma, if this final regime of three R-DHAP cycles and the coming BEAM treatment hasn’t worked, I’m in a lot of trouble. So fingers and toes crossed folks. Send me all your positive vibes.
I’m in one of the pressurised isolation rooms now, although I don’t actually go into isolation until the chemo has finished and I receive the Stem-cell transplant. As with all other single rooms I get a fridge which is great, no warm water/juice or melting food. Even better, the heating in the room is independent from the rest of the ward, so I can get a comfortable temperature in here instead of suffering the heat of a normal room. But, for reasons beyond me, some chump decided it would be a good idea to put the light switches OUTSIDE the room. So when I’m in isolation I have to buzz the nurses every time I want the light on/off. Genius decision by someone…
However, one minor issue is that the TV only has about five random channels. All I get, off the top of my head, is STV +1, Channel 4 +1, Five and More 4, there might be a couple more I can’t think of right now. What I don’t understand is, surely all the TV’s use the same feed, and the rest of the TV’s in the ward get the majority of Freeview channels. It’s not a huge problem but I will miss some of the motorsport over the weekend which doesn’t sit well with me. I’ve tried to rescan for channels but can’t find an option for that so far in the menu. Some functionality might be removed from the TV, really not sure. I may have a moan about it should I get bored enough to want it. Luckily I put several films on the laptop before coming in.
I was up at the outpatient clinic on Thursday, so I suppose I should let you all know what happened. It was pretty good news all things considered. All the problems I had are back to normal, well my definition of normal at least. Except for my liver. Bilirubin is quite high, but it’s stable, which is apparently good enough to go ahead with the chemo with some adjustments to the various drugs, and have the stem cell transplant.
I go into the hospital on Tuesday for a final check over and to have some blood taken. If everything is still OK the chemo will go ahead on Wednesday. Although knowing me I’ll manage to pick up a cold over the weekend or something that would throw a right spanner in the works…
As I’ve said before, this treatment is the strongest one I’ve had yet, so not sure what to expect, and I get the idea that the consultant isn’t sure either. Just need to see how it goes. The chemo will last six days, and once it’s finished I go into isolation for around two weeks. I get a day off between finishing the treatment before I’m given the stem cells. I’m expecting to be in hospital for five weeks or there about in total, but it completely depends on how my recovery goes.
Not too long ago I thought getting the final treatment out of the way and hopefully getting good results was all that I had to worry about. But once this is all over there is still the small issue of a tumour in my kidney to look forward to… I’ve said it many times before, but when will I catch a break.
It’s been quite a long gap between this and my previous entry, sorry. I’m lacking motivation to do much at the moment, unfortunately this has also impacted the blog. I have been meaning to post on it for a few days now, but whenever I think about doing it, I simply can’t be arsed.
I was at the outpatient clinic on Thursday and there was a little good news. The results from the second kidney function test where much better than those from the previous one, so that is no longer a concern. If it hadn’t improved they would not have been able to do the stem cell transplant which I assume would mean they would have to reduce the strength of the chemo. That wouldn’t have been very good.
The fungal infection on my skin has also cleared up. Once I stared taking the medication to treat it, the infection started to clear up within 24 hours and rapidly improved from then on. That’s another issues out of the way that would have prevented the chemo going ahead.
However, there has been very little improvement with my liver function. There was a very small improvement with the level of bilirubin, but it still remains very high and at the moment it may not cope with the high strength chemo which could lead to liver failure or other complications. So for that reason chemo was delayed again to allow the liver more time to recover. Although, they did not have any room for me to have it this week anyway. They can only do so many stem-cell transplants at any one time and are at maximum capacity.
I was also back in the ward on Friday evening receiving yet another magnesium infusion. That’s twice in the space of a week. Not sure why my magnesium is so low and not improving, I should probably ask next time I see a doctor.
So we are now looking at hopefully starting chemo on the week of 3rd October. I really hope I’m in a position to have it then as I am now starting to worry about the increasing gap between the two treatments and the possibility of the lymphoma starting to grow again, and also delays with this chemo means delays to when they can start to look at the tumour in my kidney. All very worrying at the moment…
I had to spend over four hours in the outpatients clinic yesterday to get yet more magnesium. Thankfully I had a magazine and my PSP with me which, along with some sleeping, helped pass the time. On the subject of sleeping, over the last week or so I have been very tired. I usually get a good nights sleep, but I still find myself falling asleep at least twice a day. Sometimes only an hour or two after I have gotten up. I mentioned this to a doctor yesterday and they took some blood to see if there was anything showing up that might reveal the cause.
Tomorrow I’m back in the hospital, again, to have another GFR (kidney function) test. The results from the test I had last week were not very good. Apparently my kidney function was similar to that of a frail old lady, which is a bit worrying. However sometimes these results can appear as a one off and things are more normal when the test is done again. So fingers crossed for that!
At the moment it feels like everything is conspiring against me having the final chemo of this regime. Extremely annoying and stressful.
Did you know it is Lymphatic Cancer Awareness Week (12th – 18th)? No, well neither did I until a couple of days ago.
It’s main purposes is to raise awareness of Lymphoma, which is pretty obvious considering the name of the event. It’s a good thing if you ask me, as not many people have a clue what is. Sometimes I give up calling it Lymphoma and just say I have cancer instead, which is true, but not very accurate. However everyone can mostly understand what that means.
I was at the haematology clinic today, and things did not go particularly well. The large patch on my head has now spread to my face where some red marks are starting to appear. It seems I have Dermatophytosis, which is a fungal infection of the skin. However this is not a definite diagnosis as the labs have not finished testing the skin sample they got several weeks ago. But I have been given some medication which should clear it up, as it needs to be totally gone before I can start next treatment.
My bilirubin levels are also high. Now I am not exactly sure what the cause of that is (other than my liver isn’t functioning properly), or what impact it has on the body other than making you jaundiced. All I do know is, that with regards to chemo it’s not good as they would have to reduce the strength of the chemo if unable to lower it, which means the last treatment would be much less effective.
So the end result of this is that my chemo has been delayed for one, possibly two weeks. I can cope with one week, as that was one of the dates being considered before they settled on the 19th Sept. But a two (or more) week delay makes me slightly uneasy that the Lymphoma will start to grow again due to the large gap between my previous and next chemo. All in all I am pretty damn annoyed. Since my chemo started last November it has been fairly problem free other than common problems, until now. It’s my last and most important treatment of my current regime and I start getting problems which is just typical. Luck is never on my side, yet again I’m having to do things the hard way. You would think I would be used it by now. But it’s hard work to keep pushing on and never gets any less frustrating or depressing.
Finally if anyone tells me “at least your getting more time at home” they will get a slap. I don’t want more bloody time at home. I want to get the treatment started and finished as soon possible. Each week it’s delayed just means an extra week until I get discharged and find out how effective the chemo has been at the end.
I thought it was about time I updated the blog. I have been enjoying my time out of hospital and trying not to think about the illness and treatment much, and so the blog kind of slipped my mind.
The other day my wife noticed I have rather large red mark on the back of my head, so she took a photo of it:
I knew there was something there a few weeks ago because the back of my head had been a little painful, which eventually went away and left me with what I thought was a small area of dry skin. I had no idea how big it was, it looks like some kind of crop circle on my noggin! I also didn’t realise I had lost so much hair round the back. I noticed it was getting a little thinner all over after starting the current regime, but it looks a bit worse in a photo than it does in the mirror.