Mercy Me

I just woke to day 3 and things are going well. On the first day I had a bit of a bad reaction to the chemo. My arms and legs burnt and my skin went red. With some pills I slept great and when I woke I was a different person. Yesterday I was hooked up for many hours, as I will be today, but I managed to sit outside for a while too. I've been warned that toward the end of the week my mouth ulcers will start and run into my stomach. Lots of pain and difficulty in eating. My mum's trying to be positive and say it might not happen but it happens to all. After about a week I will start to recover. This is definitely hard hitting stuff, my night sweats have stopped from one night to the next, that may also be due to not having the stress of waiting. I'm so glad to get on with it even though it's going to be so tough. At the moment my spirits are high, lets hope it lasts.

still crazy after all these years.

Tomorrow I go into hospital to have my stem cell transplant. I will be on the ward for the first 5 days. On the 6th day I am given my stem cells back, the ones I had harvested almost a year ago, and moved into a private room. The procedure involves high dose chemotherapy called BEAM. All my bone marrow will be destroyed. I will no longer be able to make blood and therefore have no immune system. My stem cells are given back to me, through a drip into my blood stream, which will then kick start the blood production process.

My stem cells were taken from me just after having had chemotherapy last year, and I was in remission. Therefore it is hoped that the stem cells taken at that time have no cancer cells in them. If there are some in there, in this bag of about 500ml of yellowy juice, then the cancer could start up again in the future, or maybe it won't. I'm hoping not.

Today I have been slowly packing and tying up some loose ends, as I'll be away from home for at least 4 weeks. I've taught Imelda how to upload films to jimmyteenstv. I've fixed the toilet seat. It is strange feeling I'm about to go and do something that will make me feel so bad. In one way I'm excited, but in another I'm scared to death. There is a chance I won't come home and I've been thinking about who will have my bike, and all my stuff? Can people get access to my bank accounts? But then, there is every chance I am coming back, and although I'll be weak I'll be able to rebuild my life.

Thank you to every one who has sent me cards, emailed me, wished me well, and generally been there for me. I don't think I can express how much it means to me and how much it has helped. I'll keep you posted via text to this blog.

In about 4 weeks...

Epstein-Barr: Guilty or Not Guilty?

I'm reading Lance Armstrong's autobiography again. You may know Lance from such achievements as winning the Tour de France just 18 months after finishing treatment for testicular cancer. And then going on to win it 7 times in a row before retiring. An incredibly inspiring story. I've read it before and I'm reading it again as I've been feeling really low recently. Lance was in a much worse position than I was/am. He had brain tumours and spine tumours. He pulled through. Of course, I love the cycling talk as well and you learn a lot about the politics and team work that goes into a race winning team. It's so much more than one man and his bike.

One thing that strikes me is that Lance always refers to the cancer as an invading thing, saying things like 'cancer messed with the wrong guy'. I've always taken the attitude of trying to not hate cancer, like it isn't a foreign entity but me. It is me gone wrong. That acceptance is the way to deal with it. But the truth is is that no-one knows what this cancer is about. Whether it is like a virus that attacks or it is your body saying 'hello, you better change your attitude or I'm not going to be here for you anymore.' Hodgkin's has been linked to the Epstein-Barr virus (EBV) although not proven. EBV is also linked to many other dis-eases (Wikipedia: Epstein-Barr). I think it's easier to accept cancer as foreigner attacking you. It gives you something to fight. If it's you retaliating against yourself then fighting wouldn't get you anywhere. Acceptance and learning are then what is needed.

In the past I've always retaliated very much against conventional medicine. Now I am tired of fighting. I believe there is a long way to go with 'modern' medicine and that it should be used in conjunction with homeopathy and treating the cause and not the symptoms. But at the moment it is all we have, and fighting against the system that is put in place to help me is not my job. This change in medicine and peoples way of thinking will happen over time and cannot be forced. We certainly need to explore the possibilities of alternatives and pharmaceuticals have a lot to answer for in driving down the alternatives as they can't make incredible amounts of money from it. But by entirely pursuing alternatives I am in effect volunteering myself as a guinea pig. The biggest thing I have to accept is the current situation in medicine and even though there is something far better out there it hasn't yet arrived. Maybe in my next life...

I would like a cosmic vacation.

As I wait to go in I have a few medical things to do. Today I had my line flushed and a blood test. Tomorrow I will have some blood; 3 bags probably. Even though it takes all day I am looking forward to it as I have been quite active over the weekend and it has started to take its toll. Blood makes you feel good.

On Friday I have a respiratory function test. It involves doing various breathing exercises into various tubes, all whilst contained in a little cocoon that resembles a 3 wheeler. It gets very hot in there. The purpose of the test is to see if the chemo therapy has affected my lung function.

Next week I'll have another ultrasound on my heart. Again, chemo can affect the heart so they want to see it is still working optimally. I'm sure it is but I bet it could do with a break. For a good 6 months I have had elevated heart beats. Sometimes as high as 120. I'm sure it will appreciate a rest when I'm back to my usual 70. Although that may be a while away.

I've also been having extreme pain in the spine. Similar to the pain that I got from GCSF injections (to artificially induce blood production), except this time it's a reaction to the bone marrow test. The area is still a little tender but not infected. The pain comes on around 5pm everyday and feels like being stabbed in the back. I'm not a fan, ironically, of popping pills but paracetamol has been my saviour for the past 2 weeks. The pain appears to be reducing a little but it still wakes me in the night.

I need to make the most of this weekend. It is the last before I go back into hospital and I'll just have had some blood so it had better be a good one.

on't bike

Here's a pic of me on my turbo trainer. I'm aching quite a lot from using it. Oh, and my bone marrow came back clear, just as I suspected.

I'll take my bat and ball and go home.

This weekend my Dad came over to the UK, he usually resides in France. We had a fun time together. There was none of the stupid arguing we usually have. We are so alike that we get on each others nerves very easily. This time, I think we both, made an effort not to fly off the handle about stupid things. Although he has tried to convert me over to classical music a tad too early. This wasn't your agreeable Mozart or Beethoven either. No, this was a slightly more obscure artist who also has his own take on old classics such as 'All Things Bright and Beautiful'. There's nothing wrong with classical, or hymns, but I am more a rock man myself. Music must rock. Most of the time it should have an electric guitar, although a bit of acoustic goes a long way. The man who invented distortion deserves an award.

Then on Easter Monday, after promise of little cloud and high temperatures, a game of rounders was organised at Kirkstall Abbey. Many were there, the sky was dull and grey, it was a little chilly, and a lot of fun was had. This was about the most intense exercise I'd had this year and it showed. I was weak. I just didn't have any power, and I'd dart off in the direction of the first base; my head knowing exactly where it wanted to go but my legs staying where they were resulting in a stumble. In the end I had to have a man with a hip replacement do the running for me!

I was a little upset by this so today I'm starting my exercise regime proper. I will from now on only watch Diggnation and other podcasts whilst riding my bike, and will spend more time on the Wii. I will then lose all my effort when I go into hospital and start again when I get out. It's still looming, and it's still praying on my mind.

who what when where why?

Had my clinic appointment again today but am really no further. My usual doctor, and number one decision maker, is on holiday so nothing is set in stone. Most likely I will be starting the stem cell transplant in a couple of weeks time as my blood levels are still not what they should be, so therefore having another mini-BEAM would knock me for good. My bone marrow results weren't back yet.

The hospital will be in touch in the next week or so to say when a room is available for the month I require it. I guess I just need to enjoy this freedom and the lovely weather that we're currently having.

time goes on

It's that transition period between winter and spring now. It's light for longer. And the mood changes to excitement of things to do over summer while it's warm. I feel the same way, because, as it's now been so long since the last chemo, I'm starting to recover. I feel fairly good, still get tired easily, but I go out and am not so housebound anymore. I noticed the hair in my eyebrows, which have thinned a little, growing back. And have put quite a bit of weight on, too.

I am also riding my bike in the house, since a very kind group of people raised some money to buy a turbo trainer for me. It turns my bike into an exercise bike, but a proper bike rather than one of those cramped, unbalanced bikes.

I feel frustrated at the fact that I feel so well, and improving all the time, knowing I have more to come. Though I accept that this is that way it is and feel OK about it. I may not be so calm about it when I'm, again, stuck in that hospital bed longing for a view and some fresh air.