Infections and bloods and hot rooms.

My room was cold, so cold I slept with two pj bottoms, a thermal vest, and a sweater. But not last night. No, last night my requests for a heater came true and I spent a lot of the night too hot. But that's better than freezing. My night sweats have also reduced. However, an infection in my blood has been identified and I am once again on anti biotics through a drip. The Dr is confident that it will be brought under control before the chemo makes me nuetropenic in the next 2 to 3 days. In the mean time I am trying to eat as much as possible because the low blood count generally means mouth ulcers for me. But we shall see...

Day 1

Yesterday's clinic showed I was anemic. So today, after some issues getting a bed, I have my own room and am receiving 3 pints of blood (please give blood). I will also be starting the chemo this eve. Hopefully tomorrow I shouldn't be feeling so tired and run down. I also finally got some painkillers that work on the bowel and kidney area.

mini-BEAM eve

Provinded everything goes OK at the clinic today I will be going into hospital tomorrow to start the chemo. I am feeling fairly good, although still some stomach troubles. I was thinking of delaying until next Wednesday but decdied I need to get on with it. Mainly because I think some of my stomach issues are kidneys aching. I have been having nightsweats, although mild, are a sign of the disease.

I have always responded extremely well to chemo and expect to be in remission by the end of the week. That means I won't have cancer attacking me anymore. I will then be able to fully recover and build my body weight up without it being attacked by the dis-ease. Of course, when I say remission, it isn't actually remission in the true sense. I will still need to have more chemo to make sure every last cancer cell is gone. But the dis-ease will be so 'hit' that it won't be attacking and will be lying dormant therefore allowing me to get better physically. And I need it, looking in the mirror is still a shock.

Mobile blogging

I just set up email on my phone so will be able to update the blog while I'm in hospital... If I can be bothered...

drugs are good.

I got to thinking. When I was prescribed morphine I was given 4 bottles of it. One bottle contains 50ml. One 'hit' was 2.5-5ml. I took 1.5ml and was so wasted `i could hardly be bothered to blink. I didn't like the experience at all. why on earht did they prescribe such a large amount? There's enough there to knock out a herd of elephants.

This is what Wikipedia has to say about Morphine:

"Morphine is an highly potent opiate analgesic drug and is the principal active agent in opium and the prototypical opiate. Like other opioids, e.g. heroin, morphine acts directly on the central nervous system (CNS) to relieve pain, and at synapses of the nucleus accumbens in particular. Morphine is highly addictive when compared to other substances, and tolerance and physical and psychological dependences develop relatively quickly. Patients on morphine often report insomnia, visual hallucinations and nightmares.
The word "morphine" is derived from Morpheus, the god of dreams in Greek mythology. He is the son of Hypnos, god of sleep."

I only took this stuff twice. Last night I smoked 4 drags of a joint. For the first time in weeks I felt truly relaxed. I didn't have any stomach pain. How ridiculous that I could so easily get hold of such a dangerous drug, yet cannabis, and for medicininal purposes at least, is illegal. Think on...

well that was unexpected.

I went in to hospital just over 2 weeks ago becuase my temperature was 38 degrees. I was told to ring them if it went to 38 as it could be sign of an infection. It tunred out to be the worst 2 weeks of my life. I had a lung infection, I had a bowel infection. I had the worlds most uncomfortable bed. I slept next a guy with a sleep/grunting disorder. I had the uncontrollablew shits - and lost all dignity. I was on a constant drip of antibiotics that made me fill up with fluid. I had mouth ulcers. I couldn't eat. I was neutropenic. My arms were swollen with injection marks.

I was in a right state. Anyway, I got through it and am home. I still feel pretty rough in the stomach area but I am slowly getting over it. I didn't know you could feel that bad and I sympathise with anyone that gets an infection while neutropenic.

Yesterday I went to clinic and my regime has been set. Next Friday I will be starting mini-BEAM, another type of chemo similar to what I've had before but again less emphasis on kidney function despite them being at full working order. This is a precautionary measure and the chemo is just as effective as the ESHAP I previously had. This will mean 1 week in hospital followed by 3 weeks out. This will then be repeated. Then I will have BEAM with the stem cell transplant which is the full month in hospital. Then I have 3 months of 'being carefull' in terms of infection and taking it easy whilst my immune system is re-built. Luckily this will be through the summer.

I can't say I'm looking forward to any of it but I have to be strong. At the moment I still feel in physical pain, although improving, so can't really phsyche myself up properly for what lay ahead. It won't be easy but it's something that has to be done. My mum is here supplying me with helathy food to build me up ready for the next onslaught. I am weak, and I am thin. I look like I've come out of a concentration camp. I can't walk very far because I hardly used my legs for 2 weeks. Luckily I've got a big appetite. I'll be feeling a lot better in a few days I'm sure. Then my attitude will change. Oh, and I also got a central line installed in my chest. That will be a permanent resident for the next few months...

morph

After seeing the doctor regarding my incredibly low white blood cell count of 0.4 (normal is 4.2-5.4), and that being the reason why I feel so lethergic, it was decided to go ahead with the Vinblastine injection since my kidneys have responded so well to the treatment. Their level is now at 165! (originally 500, and normal is 100 ish). Usually they don't give chemo unless you have a WBC of 1 or more. What this means is that I feel really shitty. REALLY shitty. The news of the kidneys gave me a real moral boost though.

I am under house arrest, I can't have visitors since I'm so open to infection. This count should start to go up again slowly but surely and make me feel a whole lot better. There are injections I can give myself too, called GCSF, and I'm not entirely sure why I wasn't given any as these. They cause your bone marrow to start kicking out WBC's at an alarming rate, if a rather painful one. Possibly I will get these at Thursday's clinic - along with more painkillers.

In the mean time I got my morphine, and to be honest I expected more. I still have pain and feel unwell after taking it, it's just that I don't have the energy or incliniation to do anything about it. I just lie there in a daze finding it difficult to open my eyes wondering if movement will ever return to me. It has given me a chance to catch up on some sleep.

After the first week 1

I was expecting this to be fairly easy compared to the previous chemo's I've had. Shit, was I wrong. I've never felt this bad in my life.

It started with my mouth getting quite sore. I don't think it's ulcers but all around the edge of my tongue hurts constantly. It hurts me to drink a glass of water. My kidneys, ache constantly. Presumably because the cancer in them is being attacked, and this should reduce as the kidney function improves. I am having a blood test today along with another dose of Vinblastine that will tell me if there's been improvement in their function. Here's hoping...

My stomach lining has been ripped apart by the tablets I've been taking and I now have a constant stomach ache. It's terrible. I have pain killers but they don't seem to work so well on the stomach pain. Depending on my kidney function today I may be getting some liquid morphine.

I'll update later after the hospital visit...

chemo pills?

So this ChlVPP part of the chemo lasts 28 days, but I only have actuall chemo for 14 days, the other 14 are a rest period before starting on the PABLO phase (which is 21 days, 10 days pills, 11 days off).
The pills are plentifull - to get the dosage up, as displayed in the image, but I take them each morning so there's no messing about having certain pills at certain times.

They are 'cyto-toxic' just like IV chemo, which means it kills cells, and should not be handled by anyone but me. I do have an injection of Vinblastine on day 1 and day 8 which I go to Cookridge for and doesn't take long to administer.

For anyone that doesn't know, chemotherapy is a poison that attacks cells. The theory is that cancer cells are weaker than their healthy counterparts and therefore die quicker from the toxicity. However, our weaker cells also die, hence hair loss and various other ailments such as mouth ulcers, stomach pains (as it rips your stomach apart, so I take my pills with cottage cheese so it lines my stomach), and feeling generally shit as it attacks all cells, not just the unhealthy ones. It is alo advisable to get these drugs through your system as quickly as possible, and have been advised to drink 3 litres of water a day.

So the whole process lasts 7 weeks. At that point it should have become clear what the next stage is, quite possbily it will be another 7 weeks of the same regimen.

Also forgot to add previously that since most of my chemo is in pills that they did not put a line into me. A line, Hickman or Groshong, is a pipe in your chest that goes into a major artery. They are very advantagious in terms of not having hundreds of needles into your arms all the time, but they can be uncomfortable and take some looking after to keep clean.

Here's me with a line from my previous (ESHAP) chemo. This was taken out last May (06).

into Hospital I went

After going for the checkup at Cookridge, the next day (Friday 12th Jan) I went for some blood as my white blood cell count was LOW, half what it should be, and quite honestly it was making me feel shit. Your heart rate goes up, and doing even the most simple tasks of making a cup of tea you just can't be bothered with, it's too much effort. So I was glad to get these three pints - kindly donated by uknown individuals.

While I was there my temperature was checked, 38.4. The doctors weren't happy with that and it was decided I should stay in. After a little protest I agreed and off I went back to my usual ward 68. I was glad I went in as that night my temp shot up to 39.8. That's not good - body temp should be around the 37 mark. Past 38 things start to get iffy. So it was decided I had a chest infection and I was promptly started on anti-biotics.

By this time it had also been decided not to go ahad with the kidney biopsy due to the fact that it was most likely to be the Hogkin's prgressing into the kidneys and the biopsy could reveal some other thing going on but it was so unlikely they didn't want to put the kidneys through the trauma and risk of the procedure. Makes sense to me, and it saves another stabbing.

It was also decided to start me on chemo, this time ChlVPP/Pablo (pronounced 'clivop pablo') as usual these letters stand for drugs, and not artists. This course has been decided as it is very similar to ABVD wihich I had early last year and responded well to. Secondly, it has very few kidney affecting drugs in it and my kind doctor has changed the levels of some drugs to suit me better. I started last Monday and the treatment lasts 7 weeks. In this time I will be closely monitored, kidney wise, to see how it reacts and where we go from there. I am very glad to finally get a structure to follow, so I can make some plans, and stop this 'let's wait and see' which just worried me.

The chemo is making me feel a bit shit, got a really sore mouth but can't see any ulcers developing. Luckily the majority of it is in tablet form so I can be at home, I just have to watch my temperature closely and if it goes over 38 to phone them immediately. The anti-biotics seem to have sorted out my temperature and heart rate, it's back to about 70bpm, and temp goes as low as 34. Not sure if that is good but being so low I have plenty of scope before hitting the magic 38.

While I was in hospital I saw myself in the mirror naked. I look terrible, bloated stomach, thing arms, can see my ribs. I hate seeing myself like this and am starting a simple excercise program to build myself up physically for the stem cell transplant which s very demanding on the bdy. Wii to the rescue! I just saw a post on Engadget of a guy that had followed a 6 week Wii sports training program, adn't changed his diet, just played 30 minutes a day and his fitness had really gone up. Coupled with some gentle swimming I should be buff in no time!



I feel positive about all this and hae made some plans for the future to look forward to and work towards. It's great have a goal. I'm going t ge my bike out of the garage and put it in my bedroom (where it belongs!) so I see it all the time and get inspired. I miss riding my lovely bike.