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.

worse to worser?

So, out of hospital I came, feeling much better. This was on the 5th of Jan. Had a great weekend, also happened to get my long overdue Nintendo Wii - which is amazing. You have to play it to believe. Imelda and I spent all of Monday and Tuesday aching all over like we'd spent the weekend at the gym, such is the revolution that is the Wii.

Anyway, today I went for my clinic checkup, and things aren't great. My kidneys are slowly getting worse again, not much worse but not better. This is not good. I'm now booked in for a Hickman line (a permanent pipe into a major artery in the neck for receiving treatment and taking blood) on Monday. Followed closely after by the dreaded kidney biopsy - which shouldn't be too bad, but not too pleasant either. Followed by a bit more steroids to, again, kick my kidneys, only this time it will include some low dose chemo, of the non kidney affecting type. My usual chemo (ESHAP) has platinum in it (the 'P') which can be quite harmful to the kidneys so they'll be leaving that out. But it also partly explains why these drugs can be so damned expensive (apart from the premium the pharmaceuticals put on them - oh no, I'm getting political again).

First of all the biopsy will give them a greater undrstanding of what is really going on in my kidneys. Although it is still most likely the Hodgkin's attaking. And secondly, the steroids along with the chemo should start to attack the disease itself.

I'm also going to get a pint of blood tomorrow because I am anemic again, which is why my heart rate has gone back up. The kidney's seem so complex in how they affect so many other organs. They are so very vital. Look after them.

In the past I have always spoken about how can poisoning the body, heal the body. Whilst I still think there's a long way to go for medicine it is my only option right now so I am going to embrace it fully. It's going to be tough, but others have it tougher, and I'm confident I will make it through, and hey, I'll have experienced considerably more than thou!

New Year, New Start?

Along came the 28th of December. I'd had a really nice Christmas but knew that the outpatient appointment was looming. As my parents are over from France we all went to together. A blood test revealed that my kidneys were not performing very well, in fact so poorly, that 'kidney failure' was mentioned. I immediately went to St. James' Hospital where there was a bed waiting for me on an almost empty ward - I guess they kicked everyone out for Christmas.

The prognosis. After various tests including ultrasound and CT it has been decided that the Hodgkin's Lymphoma has spread int my kidneys, making them work rather badly. So badly, that I almost required kidney dialisys. Luckily Dr. J stepped in and gabe me 3 lots of sterids to give my kidneys a good kicking. Since we can't go ahead with chemo unless the kidney are functioning because they are so vital in the removing of the chemo wastes.

My kineys were under such strain, and this has been slowly creeping up on me in the ast few months. To the point where I wasn't draining fluid properly and hence the pressure on my heart and the 100 beats per minute.

Anyway, after a few miscommunications and worrying moments my kiney are slowly but surely imporving. Dr. J let me how for the evening last night, and here I sit at 6:30am typing this - with the hickups. Yes, the hickups. Along with the many other tasks kidneys have to perform they somehow have great control over hickups. They are driving me bloody mad! I sleep with hickups, I get them after a drink, I get them for no reason, I get them for moving slightly! Aaaarrrggghhhh! When will this misery end? I did discover yesterday that oranges seem to ease the issue so I will be eating plenty of those thankyou.

Not sure when I'll be out again, but when I fully stabilise I assume I will get a few days at home before starting the chemo. So, a great start to the year. As always, I'm determined to get over this once and for all. This is my final chance and I can't afford to take any risks - after this, treatment becomes somewhat more 'experimentational'. For the record, I regret none of the decisions I have made. I had a great summer, saw some great bands and had a really good time. I just have to get through the next 4-5 months of shit...