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.
After getting yet more magnesium I finally escaped from the hospital at around 9.30pm yesterday. That’s me home until the 19th September when I go back for the final, seriously strong chemo treatment of this regime. Feeling a bit better again today which is great as I won’t spend my time out of hospital feeling like crap.
That’s about your lot. Very short, but not got much else to say today.
In my last update I said I had written an entry, but I wasn’t sure whether I wanted to post it or not. Well turns out it didn’t matter. I thought I had saved a draft of it, but apparently not. I’ll probably write it again at some point, but after my third stem cell collection yesterday I was completely done in and didn’t have the energy to do it.
Fortunately, it would appear that enough stem cells were finally collected as last night the nurse noticed I was scored off for going down again today and did not receive injections last night to stimulate the stem cells, however not yet seen a doc to confirm this. It’s amazing what effect those injections were having on me as after just one night of not receiving them I feel a lot better today, and better than I have done for last five or six days. I’m still sore and pretty tired, but I can actually keep my eyes open for more than half an hour at a time, and no longer look like a cripple when I try and get out of bed or when walking around.
Getting the stem cells was the main reason I was being kept in hospital so hopefully I’ll be getting home very soon. Although I had a high temperature last night and this morning which may well put a spanner in the works. This is my fourth week in hospital since having my most recent chemo. As I may be starting my next cycle of chemo as soon as the 15ht Sept, I want to get home for as long as possible before then. I will be in proper isolation for the next treatment, possibly two to three weeks of being shut in a room with the door closed, and every day I’m in here is one less day at home before it starts. Fortunately visiting times are slightly more relaxed, so, you know, don’t hold back. I certainly wont be complaining. I will of course let you all know when it starts.
Just waiting for the docs to turn up on their rounds now and find out exactly what’s going on. I only have two questions today, did they get enough stem cells and when the hell can I get out of here.
News Flash! Temperature is down to 36.9. Will I get away home today…