Tuesday, November 08, 2005

the vaccine's off :(

We got news yesterday about how much the vaccine would cost, between $50,000 - $100,000!!! There's no way we can afford that, especially on something we don't even know will work AT ALL let alone cure me. I have decided to stay in this country for the time being. I can go on a clinical trial over here which may stop the tumors from growing (we can't be sure if this will work or not either) and wait and see what happens in America. In some ways it is good, it means I don't have to go out there and go through all the stress and if it does prove successful (to be honest I am pessimistic about the chances) then we can go out as soon as they open up the trial again.

To add to it all I am in danger of losing my flat in London, I may have to go down and sort it out. I'm not sure if things are getting better or not. I spend a lot of the day thinking about how I would kill myself if things get too much, health wise. I'm going to get hold of some heroin and a load of sleeping tablets and OD. That may sound shocking, it's not really meant to, it is truthfully what I think about a lot of the time. I know, not much of a life is it? I'm on anti-depressants now, something that I had managed to avoid for a year and a half. I don't know if they are doing much, although they take a while to kick in, so we shall see.

I'm still at my girlfriend's. She is doing well. It rains a lot. We go out, I worry, she looks after me. Just as I was getting my life together it all comes down on me again and it feels like all the fighting I have done has got me nowhere. Nevertheless I will keep fighting, I imagine the day when they say that they can't detect any tumors in my body and that I am in remission. Just to feel like I MIGHT not have anything in me would be amazing. Sometimes I doubt that that will ever happen and I get very down. I'm gonna go upstairs now and sit with her and try and get into a good frame of mind.

Wednesday, November 02, 2005

Sporadic update...

I came to see my girlfriend up north. I turned up on Tuesday and she’s over the other side of the room at the moment. She’s doing her college work. She’s well clever, she knows I’ve got a blog but I haven’t mentioned it a while so maybe she thinks I’ve stopped doing it, I don’t know, but I doubt she thinks that that’s what I’m doing now!! (I think for the purposes of this blog I’ll call her Anna. It’s a nice name and not too far off her own one. Although her’s is prettier. Honest.) My parents have been checking the website to find out about the vaccine but no news yet L God I just want something to happen. I hate wasting my life, it feels like I am just hanging around waiting when I could be doing so much more. Normally it wouldn’t be a problem but my leg still isn’t back to full strength, far from, so I’m not leading my ‘normal’ life. (I wish my writing could be more lucid a lot of the time but I figure just getting the words down on the page is enough?)

I’ve got a lot to write about so I’m going to keep on going. My back hurts. When you’ve got cancer you get VERY paranoid about aches and pains, it’s truly horrible. There is still cancer in my hip, I may have mentioned this before, but it’s not as serious as when my leg broke. I asked a radiologist not that long ago if they were going to aim any of those magical radio-waves at that particular bone. They said no, unless it was a problem, and then proceeded to ask me if it hurt, whilst pointing at my back…go figure.
That’s not to dismiss myself, I’m scared about it and it could be real. Come on vaccine, for fuck’s sake.

The other vaccine, (yes there are two, keep up!) got approved apparently. I want this to fucking work, I want to grow old and hang out with Anna. I’m as sure as I ever will be that she is the one. I feel a completeness when she is with me, and I do everything I can for her, we work well together. I can see the moon through the window (we’re in the loft room of her family home). I’m reading two books at the moment; ‘Inside The White Cube: The Ideology of the Gallery Space’ an incredibly interesting book about the modern day gallery, it’s emergence, it’s past, it’s purpose etc. That and Simone De Beauvoir’s ‘The Second Sex’, one of the founding feminist text’s.

Anna’s brother has just had a baby with his girlfriend. Well, seven months ago. They’ve got married and are away on their honeymoon. In bloody Mexico, maybe at this moment in the middle of that hurricane. I hope they are okay. Well, the baby, perhaps THE most beautiful thing in the world, is hanging out with us and today me and Anna looked after her all day. She’s amazing. I’ve fed her all day, helped her try to walk (she’s blowing out crawling, good on her) put her to sleep. We even put her in the pram, got a taxi, and took her out to town. She was amazingly well behaved, laughing and joking. I went to the post office and Anna and I got her one of those National Savings accounts (you know, the ones that you get a grey book with, the one you get given when you’re eighteen that you didn’t know about), we put £20 in each and they’re gonna send me the book! Brilliant! My back’s still hurting. It scares me.

I’m going to go now. I’m writing this on my laptop and I’ll put it on the web asap. If anyone wants to ask questions about what’s going on they can. I’m good at supporting people, it helps me! And I can put people on to others that have proved beneficial to me. Thanks to that person for leaving that message. It’s kept me writing J Night, night

Monday, October 17, 2005

the good the bad....

I just thought how massively lucky I am to have all these people around me, a great family, friends, girlfriend, life generally and how fuckinf unlucky I am to have this disease. On another lighter note we managed to get two first class return tickets from Richard Branson on his Virgin Atlantic plane to Boston, three month open return. My mum and I are going to have a well deserved laugh, and a few glasses of champers!!

more...

I felt I have been negleccting this blog for a while. Maybe it served some purpose while I was feeling down, that was probably the case. But to give up on something that easily when you set out with the possible aim of helping people in the same situation is bad form, so I will try to keep up the blog. Plus, if all does come good in America, or bad for that matter, I will have some diary/record of what went on, inside and outside my head. Radiotherapy was fine, no 'skinburn' sensations on the skin, no stomach aches, nothing. It's over now and tomorrow I head up north to spend two weeks with my girlfriend.

I had a very bad patch in the middle of the treatment (nothing to do with the treatment itself, more to do with the whole situation). I was on the verge of what happened to me last year which was full-on clinical depression. I could feel everything cave in on my head. It feels like you've got no escape from yourself, everything gets very dark and even the simplest of social interaction is difficult, you lose sense of who you are, complete loss of self. Anyway, I noticed it happening and asked my girlfriend to stay an extra few days, she did and I got better. This type of thing is not uncommon, depression being the most common mental illness out there, but it is beatable. Just stay close to good friends who can deal with you in that situation. GO OUT, do not stay indoors, even if it is just for a walk. One good thing I did with a councillor once is make up of the week, with each day split into two-hour segments, for each two hours you have to write down something positive you did. TRY THAT it works, trust me. You dwell on the good you are doing.

Life seems to be getting better anyway, the walking is progressing (even though I almost had a bad fall yesterday which shook me a bit) and I am considering doing a Fine Art foundation course. We shall see. Once again I will aim at posting more often. There should be some news on the cancer website today about the trial so we'll see what they have to say. Fingers crossed a!!

Tuesday, September 27, 2005

Radiotherapy, eventually!

My radiotherapy didn't occcur last thursday, it began yesterday. Over the weekend I spent time with my girlfriend, about the only time I feel relaxed and myself at the moment. I have so much going on that my mind is never rested, that's why I like it when I'm asleep. They say that about those in the midst of depression, you just sleep a lot, it's easier than being awake. I get headaches and weird aches in my hip and back, all adding to the paranoia that this cancer has spread further. The vaccine is being advertised on the ASPS website, people are welcome to sign up for it, to put in for their chance of help, maybe a cure. I have e-mailed my oncologist to say I would like to take part but I need to find out some details about it before I commit. I may decide, if I am eligible, to go to Germany first for some treatment to remove tumors to my lungs, then head to Boston. It feels like this is happening to someone else sometimes, not me at all. I still spend large portions of the day wishing I didn't have to go through with this. Seeing people on tv and wishing I ccould just get on with my life. I pray that one day I can look back at this whole ordeal, maybe tell my kids about it. My cousin and I, who has been next to me throughout this whole thing, are having a beer together when I get out of remission one day. Who knows when. I feel like my life will start over if I make it through five years and out of remmission. If I'm still with the girl I want to be with then we're getting married and by God having a child or two!
Radiotherapy continues today and for the next three weeks. It's okay, doesn't hurt or anything. You just lie underneath this big futuristic machine with lasers all around you. They muck around and put you in the right position then leave the room. There's a noise not dissimilar to a lawn strimmer, a high pitched affair, for about 20-30 secconds, and then everyone re-enters the room and you're done. After two weeks apparently your skin begins to look a bit sunburnt but we'll see. I wonder if anyone reads this post? Let me know if you're out there. Anyway I will keep on posting regardless.

Wednesday, September 21, 2005

Big update

What a week. A while away from the blog and a lot has happened.

Thursday Sept. 15th
My appointment with my oncologist was a mixture of highs and lows. And even though the news wasn’t all bad the experience of going to the hospital is far too close to home. Too truthful and realistic for it too ever be a good thing. My cancer, (alveolar soft part sarcoma) is, sadly, not completely gone from my bones. It is still present on a ‘structural’ bone inside the pelvis although not anywhere near as virulent as it was on my femur. Whether it may be on my brain or not I don’t know. I wasn’t brave enough to broach the subject. Can you try and imagine hearing that news? Maybe you have. The last few years I had begun, as I suppose most people in their early to mid twenties had, to look forward to a family, growing old(er), and all that goes with it and getting ill made me realise it may never happen. The thing I thought of most was my brother and how much I would miss if I were to die young. We left the hospital with a series of radiotherapy booked at our local hospital as an outpatient and the proclamation from my oncologist that he didn’t put too much hope in cancer vaccines. He wasn’t positive it would work. FUCK. HIM.


Friday Sept. 16th
It always takes me a few days to get over hospital visits. Especially big ones like these. My girlfriend doesn’t go to college and comes down five hours early to visit me instead. I feel massively depressed and everything clouds around me pushing on my head. The cancer, the vaccine, the thought that it may work, and then the five years in remission never sure and living for the end of it, the palpitations and having to go for the scans to see if it has returned. You think of EVERYTHING when you have cancer. Different cancers will provoke vastly different reactions, as will the different people they happen to. My situation is relatively individual, that’s part of the reason that I decided to write this blog. I may overcome this. Yes the chances are perhaps stacked up against me, if you listen to certain people. No the chances are quite good actually if you listen to others. But whichever way you look at it the chances are there, and I’d sure as fuck wish they were there than not. Friends come around in the evening as I’m still too immobile to walk any massive distance. We get a phone call this evening as well. The vaccine has a date attached to it now that we can collectively shit ourselves about, October 16th.


Saturday Sept. 17th
Saturday is spent with friends. I make it out of the house and myself and my girlfriend spend the day lunching, with me practising my walking around the garden. I am a lot stronger at this stage, around 3-4 weeks after my op. I can walk longer distances (with my crutches still) and my leg is feeling and looking stronger.


Sunday/Monday Sept. 18th/19th
My girlfriend goes home Monday. The previous day is spent hanging out together and walking as much as possible. I am getting better and better although when I try to do anything without the crutches and hold on to something to help my walking I hobble terribly. The physio says not to do this. To keep to the crutches until I am confident on booth legs. They are going to up the physio soon and I am now at the stage of doing standing up exercises.


Tuesday Sept. 20th
I am on my own without my g.friend and have to try and stop myself from my life revolving around the shite tv I seem to be watching. I am so busy normally that to be moved away from London and my normal productive life is very difficult. I don’t know what to do with myself. I have ordered about five books on-line, none of them have turned up yet. I’ll let ya know.

In the meantime I research the type of vaccine I will be having during this clinical trial. It is apparently similar to a melanoma vaccine that has come about in recent years, so I look that up and see what information I can glean (useful websites listed below). Although the melanoma vaccine is not a complete cure that is not necessarily the case for my vaccine, different cancers different reactions. The vaccine works by teaching the body’s own immune system to attack the cancer cells. All I can ASSSUME is that because this cancer (alveolar soft part sarcoma) is so slow growing it does not have the same opportunities for mutation and therefore defence as say, a faster growing cancer like melanoma. I am however speculating and we will have to wait and see.

http://www.sciencedaily.com/releases/1999/04/990414061006.htm

http://www.cancer.org/docroot/NWS/content/NWS_1_1x_Melanoma_Vaccine_May_Increase_Survival.asp

http://professional.cancerconsultants.com/oncology_melanoma_news.aspx?id=29567

http://www.liddyshriversarcomainitiative.org/Newsletters/V01N02/Q%20and%20A.htm

http://patient.cancerconsultants.com/melanoma_cancer_news.aspx?id=18170


Wednesday Sept. 21st
Today has been slow, although not completely unproductive. I am trying to read my current book Emile Zola’s La Bete Humaine. I say TRYING. I’ll get there. Maybe a drink later with a very good friend. We’ll see. Radiotherapy tomorrow so I’ll update you all on what that’s like.

Thursday, September 15, 2005

Morning post

Just a quick message to wish myself good luck for today's appointment with my oncologist. All going well bone scan results will be positive and we will talk about possible radiotherapy treatment, although as this cancer does not respond well to radio/chemotherapy then it may be decided it is not worthwile. Also possible clinical triaals will be discussed as will the fact that it has gone to my bones. AND finally we will talk over Boston and the clinical trials for the vaccine, see if he can contact the hospital and get any more information. Will be back later
x

Tuesday, September 13, 2005

birthdays and hard work

My girlfriend is coming down today, I haven't seen her for a week since she came back with me to my parent's house for one day when I came out of hospital. As such I've been real busy, I mean we can't go out any where because of my leg so I've been making everything indoors as nice as possible. A candlelit dinner in my old bedroom is the order of the day, and I've been getting presents on top of presents for her. In terms of my leg and any advancements the physio came round again today. Things got better, I used my crutches differently, putting one in front of the other in the same motion as your arms naturally move when you walk. We managed a walk to the end of the driveway and back, easily the furthest I have been so far, and on top of that I have been out in the car today twice! The leg is still painful, you can feel the muscular pain, but it is certainly getting better, this is around four weeks since my operation, however for the first week I barely moved at all, so mentally I'm ruling that one out. A big part of the reason why I am writing this is so people who have gone through the same op can compare and get some first hand knowledge of what it is like in terms of pain, time scales, etc etc. I hope it will help someone!? Anyway, tomorrow may be a bit empty, my girlfriend is staying so I may not be that near the computer. I'll be back soon though with updates :-)

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