just one last thing

I don't think I ever mentioned how beneficial it is to go swimming in the sea once you've finished your chemo. The amount of shit that came out of my head in its many hidden chambers was unbelievable. Bright yellow stuff like egg yolk. Makes you wonder what's in the rest of my body.

anyway, that's it. byeeeeeeeeee.

the end...

Yesterday I had the results from my latest scan.

All clear.

I am free of disease. I am free of cancer.

It's been a long road. I can only pray it doesn't come back in the future. Right now I feel really good. I am getting my fitness back and I have so much energy. After having low blood for so long it is a novelty to get blood delivered to the muscles as they ask for it.

With this news I am ending the blog. I can move on with my life now. This blog will be archived at www.deadlyhifi.com/blogger http://tomdebruin.blogspot.co.uk/. I will be starting a new blog - read if you dare. It won't be cancer related though...

I want to thank everyone who has supported me over the years. And I wish all the best to all the people who are still going through the cancer journey. If I can do it, so can you!

Thank you for reading.

conjunctive-eye-it-is

Did you know I was married. That's what I did in Rhodes, get married. I also got a lot of sun, and got drunk a couple of times too.

I have conjunctivitis in the eyes. Had an 'emergency' trip to my doctors yesterday evening. Emergency because the chemist was concerned and wouldn't give me anything for the leak that my eyes had developed. I discovered this whilst I was on the 55k (34mile) ride I went on yesterday (Including 'Le Bastard' hill from Chevin cycles up the hill past Danefield - only Leeds-ians will know of this vertical terror).

Full of beans I was. My blood test, today showed it. Hemoglobin at 11 (reference range 13-15) so I'm doing rather well. Everything else has risen in the correct direction too. Apart from my kidneys. Those crazy things have got a slightly high creatinine once again. It may be down to not drinking enough water. Another check in two weeks time to see what they are doing.

In the next two weeks I will be mostly drinking green tea, cranberry juice, and water. If you see me without a drink in my hand tell me to get one!

remember me?

Me in February 2007:


I could grab right around the top of my arm with one hand in those days.

Me in October 2007:


My, how you've grown!

so when do you 'think' you're going on holiday?

Imelda picked up on the above statement from the doctor as we sat down to receive the news of my blood test yesterday afternoon, and immediately drifted into a paranoid state.

Luckily it all came back good. Not perfect, but good enough to go on holiday, and an improvement on last time. Which means no pelvic extraction when I return from Rhodes!

When I do return I'll be a married man. How bizarre. I'll also be oily as an olive, and as brown as a, ermmmm, cardboard box?

another blood test

Another day, another blood test. Just a little recap: my red blood cell count was low, and my platelets are still low, and my kidneys weren't perfect. This afternoon I'll get the next bit of information.

Watch this film here: My Little Scare. Luisa, 18 months post transplant, has a blood issue. Watching this makes me realise that anything could yet happen since I'm only 4 months post transplant.

I have been extremely busy moving house and have found little time to relax because there have been so many little jobs to do. I'm looking forward to my holiday/wedding/honeymoon in Rhodes which is less than a week away!

empty bones

Another blood test last Thursday. Things are OK, but only OK. My red cell count was only 8.9 (should be 13-15) so I am a little weak.

The doctor said it was probably down to there not being much marrow in my bones. I will go back in three weeks time to see if things have improved. If they haven't then after my holiday/wedding/honeymoon trip to Rhodes I will be having another bone marrow test - you know the one where they apple core your pelvis to get inside your bones.

They aren't concerned about cancer (at this point) but it will just be a procedure to see what's going on inside my bones.

The doctor described my 32km bike ride the day before as 'impressive' considering my low RBC.

For some reason my platelets are also still on the low side at 31 (or was it 51?) either way, low. No cuts and bruises for me please.

the BIG DAY

So the big day came and went. The big day of course was the results of my scan. What I've realised is that there's never a definitive answer.

My scan was not clear, but that does not mean I have cancer. There is still evidence of enlarged nodes in my body. They are much smaller than they were. They could get smaller. They could stay the same. They could get larger. They even said they wouldn't treat if they did get larger. Really the test is how I feel, and I feel good. I don't have any symptoms. I don't have any night sweats. So really the purpose of this scan is to stage me, or check out what I look like when I'm 'normal'. I have another scan in 3 months - another 'big day' to look forward to.

My hemoglobin has been dropping a little over the past few consultations so I've been given multi vitamins to take, and another blood test in 2 weeks. They are not concerned because the anti pneumonia tablets I was on, and have now stopped, have side effects of their own which could be the cause.

In the mean time I have been going to the gym, ridden my bike, and have bought a new bike too. A road bike! that I will be collecting on Tuesday.

postsecret

I've been reading post secret for some time now. Rather than explain what it is just watch this video.

I can't believe you forgot my birthday!

Yesterday was a good day, in fact it was the best day. The sun was shining, and I went on a proper off-road mountain bike ride. It was so much fun. And I didn't do too badly. I was clearly using easier gears than I had been used to back in the day, but that's what gears are there for. In the evening I went swimming in an attempt to soothe my aching muscles. It worked, kind of, I'm feeling it today! But then, it's the most exercise I've done in a looooooong time.

Today marks 100 days since my stem cell transplant. Happy 100th day second birthday to me.

a transition

Because I caught it so early the Shingles didn't really amount to much. It's just a bit itchy now, must resist the scratch!

I am now on a very low dose of Aciclovir to ward it off in the future until my immune system gets a bit more confident.

I feel weird at the moment because everything seems to be going right. I'm not used to things going right. I have a CT scan in a couple of weeks, maybe that will throw me back into the spiral of doom. Or maybe not? Everything is changing and it's hard to pull myself out of my 'sick' life. I am getting married in Greece in October. We are moving to a house in about 4 weeks time. My job is going well. We are going to buy a new sofa, washing machine, and fridge, and the neighbours cat at my new house is very friendly. What more could I ask for?

I'm not sick but i'm not well.

Everything was going fine until Monday evening as I was getting into my pyjamas and I noticed a little rash on my leg. But not just any old rash, no, this was a rash I recognised. The shingles are back.

This morning I went to the general practitioner who, after speaking to my oncologist, prescribed a normal dose of Aciclovir. I later spoke to the oncology nurse who assured me it was nothing to worry about. It is not a reflection on the cancer coming back. It is just unlucky.

I've caught it a lot earlier this time as well so hopefully I won't end up with patches of discoloured skin that currently grace my rear end.

the strength of ten bears

My girlfriend, Imelda, has the lowest pain threshold of anyone I've ever met. I can beat her at an arm wrestle with no effort whatsoever. Or so it was. Just the other evening she challenged me to an arm wrestle. And I lost. That is how weak my arms are.

When I'm doing Yoga at the gym I catch myself in the mirror and notice how thin my arms and legs are. So out of proportion with how tall I am. And in the past 2 weeks I've noticed how much strength I've gained. Lots more to do and if the sun would stay out for more than an hour then I'd get out on my bike a bit more.

"...yeah not too bad, a bit better everyday actually..."

This is my general response to the various ways of asking how I am. And it's true. I'm feeling surprisingly well. However, I am suffering from the following ailments:

"Brain Rattle" - this feels like a dehydration headache, and most probably is as I am so thirsty all the time, but it occurs when I move my head at any speed other than quite slow. It feels as if my brain is loose inside my head and after the 'violent' movement the brain impacts on the inside of my skull and leaves me in pain for a while.

"Swollen Neck" - Ever since I got out of hospital, and some of the time I was in, the sides of my tongue hurt, along with the areas on my neck to the sides of my windpipe. It feels like I have a throat infection and feels uncomfortable when I swallow.

"Pins and Needles" - In my face. Particularly on a morning when I'm dehydrated my tongue, lips and nose feel all tingly and require various strange looking face exercises to get rid of. A big glass of water also helps.

"Seize Ups" - Especially when I'm tired on an evening and I've been an enjoying a TV show or film I attempt to get up and realise that I am actually stuck in the seated position. It takes an enormous amount of effort to get going again.

"Fire in the tendons" - Closely related to seize ups, and often on a morning through my armpits my shoulders seize up and as I try and move them it sends shooting pains along my tendons. Legs as well as arms.

"Sneeze ups" - a sneeze causes a sever case of 'brain rattle' along with belly pain. Imagine going to the gym and spending all your time doing sit ups to the point where your stomach aches so much you can hardly move due tot he exercise you exerted it to. Now sneeze. I used to full blown HAAAAAAAAAAR-CHOOOOOOOoooooooo... sneezes. Now I do little "choo" sneezes like a little cat to reduce the pain.

"low bandwidth" - this is in the veins of my hands and feet. The circulation in these parts is pathetic and means I am constantly have cold hands and feet. I am alleviating this with home made hand and foot massages. Those wooden rolly things finally come in handy.

"bogeyman hands" - weird spots that appear on my hands. They start of painful, and soon turn into painless red spots that look extremely unsightly. I have written about them before. They dissapear after a few weeks when they grow out and I think 'phwew'. And then I wake up one morning with another set. I have mentioned them to the hospital, had various doctors take a look. "I've not seen this before, lets see how it is next week...case dismissed!" It is not documented as a new side effect.

I think that's about it. Lets not forget 'the fear' though. On Wednesday I got a call from the lymphoma specialist nurse. "Now there's nothing to worry about..." I immediately start worrying. "But we've been having a look at your recent blood tests and it appears that your creatinine levels are slowly rising." "Do you remember last Christmas when you were admitted to hospital with failing kidneys?" - Erm, YES. I felt like I was dying...and, erm, was. "We'd like you to come for a blood test to check that they haven't risen any more. But don't worry, it's probably nothing."

Unsurprisingly I did worry. I worried a lot. In the pit of my stomach I again felt that knot of fear that tends to be there whenever anything cancer related is spoken of. First thing the next morning I went for the blood test. My arms must have been appreciating this break as it was easy to get some blood out. In the afternoon I got a call. "Your levels are fine. The Creatinine has dropped again". Phwew says I.

So "yeah, not too bad, a bit better everyday actually..." is true but has an asterisk attached with the ailments listed above.

the occasional clearout

I was scared of the Yoga but it turns out to be the best thing I could have done. Today I feel a lot more supple. I am most pleased.

So I got into one of those clearout modes. It's best that people stay out of my way when these set in because your efforts will not satisfy. Luckily I am alone with Rage Against the Machine.

I have discovered that in our one bedroom flat, where only three different individual people have ever slept (apart from my good self and Imelda) we have a stock of 10 pillows! Count them, 1, 2, 3, 4, 5, 6, 7, 8, 9, 10! And to cover these pillows we have 14 pillow cases!

Why oh why do we horde things? Luckily there was a skip delivered at the shop across the road this morning; tonight, under the cover of darkness...

support

Here are some of the cards I've received from various family members and friends.

Thank You.

times are a'changin'.

I realise I haven't been updating this blog much lately. I guess there's not all that much to say - I figure people would get bored with the same old "tired, but slowly improving".
Last week I was at the hospital again for a blood test and the doctors were pleased at my recovery rate. Almost normal now, apart from the platelet count. But normal counts is misleading. The truth is I'm tired a lot of the time. This isn't the kind of 'ooh i went to bed late last night' tired. This tiredness infiltrates the core of you, sleeping for 12 hours has little effect on it. Then another day I'll get up and feel great. There doesn't seem to be a pattern to it. But I guess it's a good thing as it reminds me to take it easy. I'm always trying to get ahead of myself.

This morning I'm going to do a Yoga class. That should be gentle exercise enough and allow me to stretch my tendons a bit, which are so tight. I'll report back, but I'm expecting some pain...but good pain.

This morning I received a comment from a guy named Duane from New York who is also suffering with relapsed Hodgkin's. I started reading his blog and he has some interesting things to say. Journal of a Prize Fighter. Duane, I wish you all the best and thank you for the comments you've made and for following my blog.

I also want to take this opportunity to thank everyone who has been so supportive. By sending cards, emails, phoning me, etc. I don't think I'll ever be able to express how much this has meant to me.

In other news Imelda and I will be moving from our flat into a house, with garden in the near future! My mum and dad are buying it and letting us live in it for a low rent. I'm really looking forward to having a garden, extra bedroom, and, wait for it...workshop! That's right, a dedicated place that is only mine for all my tools and bikes. "where's Tom?", "He's in his tool-shed again!"

Before my mum and dad offered to do this we had decided to move anyway. While our flat has lots of happy memories, and I wouldn't even describe the past 2+ years as unhappy despite the difficulties we faced, moving will be a new start. A new chapter of my life will begin.

The fear? The fear is what I expect every cancer patient has. That "will I relapse?" thought. Right now I'm doing well with it. In the past I have gone into spirals of depression. Maybe this time it's because I was so ill from the chemo that I wonder how anything could survive that. Who knows how 'the fear' will develop over time.

the good, the bad, and the fugly

The good news is my blood counts have risen past the threshold that requires me to have extra blood and platelets and therefore a whole lot fewer stabbings. My platelets on Thursday were 31. They don't give them unless below 20 so I'm pretty safe. The reference range is 150 - 400 so I still have some way to go, and the doctor did warn that it could take a long time for them to rise to normal levels, especially for someone like me who has lots of treatment.

I've also been nursing a lung infection for a few weeks now. It is starting to clear up but my lungs are full of mucous. I have really short breath and I'm regularly loogying into the sink. I'm not like a normal boy who can fire a greeny at will, no, I make myself feel totally sick and if I'm not carefull end up barfing into the sink. I bet you're glad I described that scenario for you!

I've also got some kind of nasty hand rash. The doctors aren't sure what it is. It is fugly. Luckily it seems to be quieting down a little but in the mean time I look like the bogeyman.

dum dum dum de dum, patience!

the fat lady is yet to sing

Sorry for the lack of posts recently. Time has flown by and it's always on my 'to do' list which never ends. The top of my 'to do' list, which I never seem to be able to cross off is 'go to hospital'. I am spending loads of time there. Blood test after blood test, bag of platelets, bag of blood, clinic. When I came out of hospital I thought "haha, the end!". Little did I realise that the recovery time they specified would apply to me. I've always defied their rules and been great straight after chemo, but this time I'm a wreck. I've also managed to pick up some kind of chest infection. More antibiotics, which play havoc with my bowels. Some mornings I wake up feeling on top of the world, then I walk up to the shops, or something equally un-eventfull, and by the time I get back I'm in need of a nap. None of this is abnormal but I always think of myself as different, and 'it won't happen to me'. Again, I just have to be patient.

Tired and wobbly

They let me home yesterday but there were some complications. They tried to remove my Hickman line. The problem was that my platelet count was quite low. So they gave me two bags of platelets and then began hacking away at my chest for 45 minutes. But I kept bleeding too much. Also the line, having been in for 4 months was well and truly lodged. The doc gave up and sent me home. Today I went back for two more bags of platelets and then the attack began again. It took almost 2 hours to get the line out and it was a thoroughly traumatic experience. At times extremely painful. I have 3 stitches and the area is very sore. In the words of the doctor 'that was 100% more difficult than I expected'. At least it is over with but I got quite upset at all the pain I've had to go through, and it's not over. I have weeks of more blood tests and potentially bags of blood and platelets all requiring more difficult arm stabbings in my already wrecked veins. I'm sure once I get some sleep and a few days have passed I'll feel better.

I'm coming home

I've just been told I can go home! In just a few moments my Hickman line will be taken out. Then Imelda will come and get me. I'm trying not to get too excited until I'm out the door because who knows what can happen in the next few hours. I'm also slightly apprehensive. It's all a bit daunting after spending so much time in this single room. My balance is all weird too. I had a walk down the ward to the day room and I felt really wobbly. This isn't the end either. I have to have my blood checked on Thursday and there will be a series of appointments for some time to come, but at least this, the most difficult, stage is over with.

Country roads

Feeling great today. As far as I'm concerned I can go home. I am so hungry, so so hungry. But there is nothing here that I want to eat. I don't know what I want to eat but if I was home I could nibble on stuff and try different things. If the doc comes round today then that will be my argument. I doubt it will work. I'm so ready to leave!

So close but yet so far.

I know There's only a little bit to go but I feel so sad today. I've tried to have a weetabix for breakfast but it's still a bit harsh on my food pipe. I know that until I start eating I won't be allowed home. I'm so bloated as I'm still hooked up to a drip, for what must be a week now. It's to give me potassium which is low. Until I start eating I will be on this drip so it's a bit of a catch 22 situation. The doctors will be coming round today so lets see what they say. Maybe I could go outside for a bit of fresh air. I'm no longer neutropenic so the risk of infection has dropped significantly.

The end is in sight!

T+14 and things are getting better. I am able to drink, even though my mouth tastes foul as there is still thrush coating my tongue. Eating is still beyond me. The doctors are pleased with my progress and There's talk of me going home after the weekend. It is still a very difficult time and I'm feeling quite depressed. I know I still have such a long way to go with recovery but I'm so very looking forward to sleeping in my own bed. I've been in here for 21 days now. Because there is still infection in my line they will be taking it out before I leave. That pleases me. Usually they'd keep it in for a few weeks after in case of complications. So when I leave I shall be pipe free. I just need to stay strong for the next few days and get eating so my body can start building itself up.

Things are looking up

T+11 and I'm dreaming of a pint of cold orange juice. Things are looking up. Today I managed to drink sips of water, orange was a bit harsh. My counts are starting to show signs of recovery. I still have many issues to get over and my recovery to leave hospital will take time. I must still be patient as I could still be in here for weeks. There has been a complication in that my line has infection in it and therefore has been locked. I have started with needles in my arms but the vein options are already running low so it's now considered to use the line again as there are no other options. I'll keep you informed...

Woe is me

They upped my morphine dose but I am still unable to drink due to pain. I also started an anti fungal medicine to see if that is the culprit behind my 39+ degree temperatures. The doc said I was suffering the worse side of bad but none of this is unusual. Probably due to the morphine I feel indifferent to it. I just lie here drifting in and out of sleep. I no longer feel frustrated at being bound to one room because this is what I'd choose to do. It's just a matter of getting through it, and surely it can only improve from here...just a few more days. I'm really looking forward to downing some cold fresh orange. I feel so thirsty. My mouth is currently a mucus farm. I spit vast quantities of phlegm out constantly. It's pretty foul. The guy in the room next door to when I came in popped back yesterday. He said he felt really good. He had an extremely quick and trouble free turnaround and I was sure I'd be the same, but alas not. I was also sure I'd keep my hair as it was really staying put. But then what seemed like one hour to the next it all came loose. Even my facial hair is easily pulled out so I'm really trying to avoid my eye brows.

God of sleep.

T+7 and the past few days have been agony. My throat has been incredibly painfull to the point where I can't drink. It feels like razor blades in my chest. I have been on a hydration drip for days on end and today the pain became so unbearable that I am now on morphine. There is a needle under the skin on my belly with a tube that connects to a battery operated unit that injects a small amount of morphine every few minutes. Pretty good really. My pain has subsided. I should hopefully improve now anyway as this must be the lowest point with only improvement from here on in.

Patience is a virtue.

Today is T+4. That means It's been 4 days post transplant. Again I've had a nurse tell me how It's going to get worse before it gets better. Thy're really hammering this information home. I guess their policy is prepare for the worst accept the best. My mouth is a little more rose again today but I can still manage slices of toast. My blood pressure went down yesterday due to dehydration so I have been on iv fluid for 12 hours and have just hooked me up to another 6 hour bag. I need to drink more, which I'm attempting, but it goes straight through me. They are waiting on my stool sample to come back to check for infection. If It's clear then I can have something to stem the flow. If infected then I don't want to be bunged up with infection. The bank holiday isn't helping the results come back any quicker. I just keep telling myself it could be worse and every little thing that happens brings time forward a bit. Einstein wasn't wrong when he said time was relative because, relatively speaking, it's taking a whole lot longer for an hour to pass in here than if I was doing something fun.

Be carefull what you wish for.

Yesterday I was almost complaining that I didn't even have drips and medication to break up the monotiny of the day. How stupid. In the afternoon I spiked a temperature. Immediatelly blood cultures were taken and anti biotics given. This morning I started pooing in a box as all my intake and out goings have to be measured. In addition to this my nose started bleeding. I guess my platelet count has dropped quite rapidly. Who knows what the next days will bring? My taste has changed a bit but my mouth isn't sore as yet.

A Red Letter Date.

Today, the 3rd of May 2007. Today I got my stem cells back. About 2pm in rolled a mushroom like container filled with liquid nitrogen and the cells. They were divided over 5 bags. These were put into a water tank at 37 degrees to defrost. Each bag took about 10 minutes to drip into me. All a bit of an anti climax really. I'm still on hydration and can't wait to get free from this drip stand. Now I just have to wait. The guy in the room next door popped in to say goodbye. He only took 3 weeks to recover. A girl in another room is on week 6 so it is so hard to predict how long it will take.

All is well so far.

Today is day 6 or t-1 as it 's known in the industry. Today's chemo is harder hitting than the last few days in preparation of tomorrow's returning stem cells. I still feel great and have been sleeping very well still. The doc came round yesterday and is very happy with my progress. I feel I might get through this rather well but only time will tell. I should be neutropenic by the end of the weekend so I'll give a review of how I'm really feeling then. My heart rate has dropped to the mid 40s. Considering it has been about 100 for the past 6 this seems weird but no one seems worried about it. My pre chemo heart test came back good so it will just give me a good base to start my fitness update from. So far so good.

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.

stick that in your column (nasty pics inside)

Not quite in my column but close enough.

I had my bone marrow biopsy this morning. As with most things it didn't hurt as much as I expected. It was a terrible experience and not one I recommend (unless it's required) but I remember my previous ones hurting a lot more than this one did.

Obviously, I can't see what is happening so I got my mother to take some pictures of the procedure. They look really nasty so I've included some here. It makes it look worse than it is.



The 'dirty' skin is actually from back in the day when I got shingles, but that is reducing now with some great cream that I have.

On the second pic note the little red tube thing in the middle, that is a 'core' of bone that is extracted, and the slides contain bone marrow ready for checking.



I will get my results in just under 2 weeks and a decision on whether I miss the mini-BEAM chemo and jump straight into the stem cell transplant.

P.S. The location of the RSS feed has changed to http://www.deadlyhifi.com/atom.xml

get away

Finally Imelda and I did get a chance to get away. We stayed in a lovely vegan B&B near Hornsea. As well as having excellently cooked food I also had reflexology and a full body massage. It was just what I needed. I haven't had a foot massage like that since I was in Thailand. It was painful at times, but that good pain, and afterwards it felt like I had new feet. Then the full body massage, I needed that. Lying in hospital beds creates a lot of tension in the back and it was great to get rid of it. All in all a great weekend!

But it's back to the real world and this morning I will be having my bone marrow checked. Obviously, I'm not looking forward to it, but I also managed to dream about it all last night. The night sweats continue and with this period of uncertainty I'm feeling a bit disillusioned by it all.

the high road, or the low road?

What is going to happen? Well, due to the fact that I'm taking a really long time to recover from the mini-BEAM chemo I had 5 weeks ago, my doctor is contemplating missing out the next mini-BEAM and jumping straight to the BEAM and stem cell transplant.

Next week I'll be having my bone marrow checked to see if the cancer has spread there, and the reason why my counts are taking so long to come back. However, this is highly unlikely and the chemo is probably the culprit. The test is just to be sure. I will also be having a CT scan to see where the dis-ease is currently at. Then the decision will be made. Only so much chemo can be given and I seem to be on the border of not being able to have any more.

If I have BEAM then I will be done sooner and will be around for the summer, but I still have some lumps under my arm, although small, that concern me a bit.

If I have another mini-BEAM then, judging by this performance, it will be end of June before I'm done.

Obviously I'd like to be done sooner, but as there aren't many options in terms of treatment I want it to be done right. I guess it's out of my hands now. I'll just have to wait for the results of the tests and go with the advice from the doc.

So there will be another 2 weeks before I go back in, for whatever reason. Maybe we'll finally get a chance to get away for a few days. I also went out on my bike for the first time in yonks yesterday. It was really hard work, my legs are so weak. But a turbo trainer for my bike will be arriving in the post in the next few days so I can ride my bike in the house whilst watching tv. I have also been back on the Wii, and aching because of it. At least this gives me more time to build my strength up.

another day, another visit.

I realise that all I seem to do is moan, but today I had another blood test, and although I feel absolutely fine I have to have another 3 bags of blood tomorrow! I just cannot stay away from the hospital.

The weekend was good, if a little tiring. On Saturday we went to Harrogate for a spot of lunch and a friendly meet-up, and on Sunday a mothersday meal at an excellent restuarant in the little known village of Thorner - called The Beehive (The Beehive...mmmm, shame about the website). Followed by a pub visit and a few friendly games of pool, followed by some baseball on the Wii. A busy day.

Today I collecgted my bike from the bike shop with my new cranks fitted, and soon I shall have a turbo trainer which will allow me to ride my bike in the house. I won't get very far, but I love sitting on my bike.

a week of freedom

My counts are coming back up and I feel a lot better for it. Had another bag of platelets yesterday as my count was only 6, but now I'm feeling pretty good.

Due to my late recovery chemo has been pushed back to give me some reprieve so I have just over a week of freedom. I still have to go to clinic, and have a blood test on Monday but other than that there are no commitments. Maybe Imelda and I can finally get away for a few days.

one good, one bad (news)

I had 2 more bags of blood yesterday, and 1 bag of platelets, and despite taking my pyjamas to the hospital I didn't need to stay in! Woohoo. I also asked the doctors why my blood counts hadn't come up yet. They're not worried, it can take a long time, up to 6 weeks I was quoted, the more chemo I have had the longer it takes, and mini-BEAM is notorious for giving you a long term kick. That's fine and dandy but in the mean time I am having lots of blood. I've lost count now.

In other news, in my continuing quest to promote Apple products, I almost required myself a new Apple product this morning, when in a fit of madness I managed to knock approximately 350ml of honey and vitamin C concoction juice all over my shiny, aluminium skinned, pride and joy (that's a MacBook Pro to you). Luckily (or unluckily?) I managed to save the little inanimate beauty from an untimely death. I had to laugh, I wouldn't have laughed, but now I have accidental damage insurance I laugh in the face of danger. This time I won't be claiming as there is no damage.

like a bear

I am ferociously angry at myself right now! I've just been for a blood test and I have to go back tomorrow for 2 more bags of blood and 1 bag of platelets. I am still neurtopenic too. This is 17 days after the chemo finished. The doc was not worried at 14 days but said he's wonder why I wasn't bouncing back by day 20, which isn't so far off now.

I wanted to be fine and go away for a couple of days from tomorrow. It seems I will be getting no rest whatsoever from the same day in day out. I'm so pissed off.

oot and aboot

I'm out. I'm home. It feels so good to lie in my own bed, despite having to answer loads of emails...

1.56 am, Friday 9th March 2007

AAAAARRRRGGGGGHHHH!!!!!! I gotta get out of this fucking place!!!!!!!!!!!!!!!!! After being persuaded to stay I can't stand it. I slept from about 8. I had all my drips, blood, platelets, anti-biotics. 11.30 I woke, got myself ready for the night ahead. Had a sleeping pill. I was still so tired. Then the Jaundiced Avenger shits himself. I feel sorry for him. I know what it's like, But I had the decency to contain it in my pants. This has gone all over the floor. It started with a foul smell. Then it appears on the floor and seeps under the curtain into my 'zone'. I go to the day room while it is cleared up. Then 1.30 am I wake to the familiar 'ding ding dong' of the drip machine. This one right next to my head. Once awake, even with a sleeping pill, there's no getting back. Then I'm treated again to Mr Jaundice stinking and spurting. He needs his own room. I need some quiet. I cannot stay here. I am so fucking angry and frustrated. What the hell can I do? I' m listening to loud music that most of you wouldn't approve of and I'm writing this, and enjoying the shittly aroma that curtains between beds just cannot contain successfully. Maybe if I was still Ill and not feeling so well I could cope with this but I was convinced I would go home yesterday, then after my expedition out, convinced to stay till Saturday morning. I really cannot spend another night in here. I'll make it through the nigh some how and then I AM LEAVING!

In the words of the mighty Samiam:

I can't believe it, this is awful. I can't believe it, this is awful. I can't believe it, this is awful. I got better things to do with my time.
This is my time. I could be home...

I'm so happy to be able to listen to music. It is such an escape. I don't know what I'd do without my iPod now. What a life changing product, especially if you are actually into music. Have it ALL in your pocket. ALL! All moods covered.

Later that same day...

The nurse came around with my i.v. anti-biotics around 10am. I proudly proclaimed "I am refusing treatment, I am going home, let me see a Doctor". And so it was, a good hour later I saw a Doctor. Only things didn't go entirely to plan. Once again my blood counts were low, 14 on the platelets, 8 on the red (12 is better), and still neutropenic. They did not want to let me go home. Still I pleaded. "We can't keep you in, but we advise that you stay." What can you say to that? I was so frustrated and built myself up so much for going home I could just not bear it anymore. Luckily there was a solution. Chris and Tracy would come and take me out of here for a few hours. And that they did. I went outside, breather the fresh air, focused on something more than 25 meters away, and appreciated the green and blue. I also had some great fish and chips, but most of all it reset my patience button. On my return I was told that they wanted a full 5 days of anti-biotics so that means I won't even be out tomorrow, it will be Saturday, as long as my temperature doesn't spike. By the time you read this all this will have happened as I'm writing this on my lappytoppy in the past.

schleep

Somehow the notion that a good nights sleep helps recovery is not part of the this wards' outlook. Every night I go to sleep in a bad mood because survey says "let's start your 3 hours of anti-biotics at 10pm". I understand the need for anti-biotics (however on this occasion it was debatable whether I needed them) and that they are run 12 hours apart. So why not 8 and 8, or 6 and 6 - they wake you up at 6 am anyway as part of their early bird catches the worm policy. Maybe the morning staff should inform the night staff of this policy because they seem to be adamant that the patients thrive at night.

Anyway, on this particular eve, and I was fine to go home that day I assure you, I was staying in one last night. So around 10pm I was hooked up to the drip. I managed to get some sleep, off and on. The problem is with this pipe running from your chest you have only 3 positions to sleep in, and they are soon exhausted. In addition to this to move to any of the 3 takes careful consideration. I have an immense fear of leaning on the pipe and hoisting myself up to move to position 2 of 3 as I feel the pipe start to slip out of my skin and bleed for a long time, so every move is preceded with waking up and careful planning. Sleep should be long and constant. On this particular night I didn't ask for a sleeping pill which had ensured a 6 hour stint just the very previous night. I woke around 2 to the sound of Gruntman - yes, the very same who was positioned next to all those weeks ago when I started chemo, only this time less hairy - vomiting. I had managed to deal with his sleep grunting which has reduced somewhat but his vomiting lasted for ages. Only a curtain separates us to my right. Then, as if by magic, The Jaundiced Avenger on my left starts moaning with pains in his chest. Trolleys are dashed around the ward, everyone raises their speaking volumes and I am laying there, with an empty anti-biotic bag connected to me, feeling rather pissed off. Now it's not their fault and I sympathise with them but at 2am, having gone to bed pissed off I only got more pissed off. I managed to attract the attention of a nurse by making my drip machine artificially make the 'ding, ding, dong' and I was finally disconnected for a good nights sleep. I rolled around for a bit, read for a bit and finally made it off to sleep. 6am soon rolled around for my daily blood and observations. Then to top it all off the Jaundiced Avenger to my left decides 6:10 is great time to start shaving his follicly challenged chin with an electric razor. Anyway, that was it. I was awake, tired, and unable to sleep. I am definitely going home today - just to get some rest because hospital is not the place to get it.

what happened?

So there I was, minding my own business, when out of the blue my platelet count was 1. Platelets make your blood clot. When you are 1 you bleed. My nose bled all night but since my regular clinic was coming up I didn't inform the hospital. But 1 is bad, I was admitted into hospital again, my weekly visit(!) and given platelets. So Thursday night I was back in. Friday I went home. Saturday morning I felt great, so off we went (we is Imelda and I) to Centre Parks in Nottingham. Why? You may ask. Well, I say, it was the Teenage Cancer Trust "Find Your Sense of Tumour" conference. This is a yearly event where about 500 teenagers all go to Centre Parks and hang out. There are various high profile cancer people in the UK doing presentations about future of treatment etc. People get to ask doctors questions. There are motivational talks by cancer survivors. It's a well organised event and it was great. It was nice to be around people that know how you feel, that have been through similar things. I enjoyed the event. There will be videos of the event on www.jimmyteenstv.com soon.

But, Centre Parks is car free and we had to walk everywhere. It was a 15 minute walk to the presentation hall and that may not seem much to you, but it meant a whole lot to me. I was knackered. I had a big nap on the Saturday. On the Sunday I was exhausted. In the eve we went to my Grandma's. I went to bed at 6pm, and slept 'til 6am. I was still tired. I was due at the hospital for a routine blood test, and as usual, they kept me in. I had 3 bags of blood, and 2 bags of platelets. And as I type this I am still in hospital. This is Wednesday (7/3/7). Hopefully I can go home tomorrow. I am so sick of being here...but it could be worse. I'm just looking forward to having an extended period of time at home.

I'm Out!

Friday ws the day, but it wasn't an early exit from the hospital. My hydration after Thursday's chemo continued through the night and finally ended at 4:30 Friday afternoon. I was eager to get off, but then I had to have 2 bags of blood. So Imelda came, brought the laptop and we watched 'Click', that new Adam Sandler film, and ate pizza. I finnaly got out of hospital about 9pm.

It feels great to be home and be able to look at non blank walls. Watch what I want on TV, and generally be lazy around the house.

The Doc said I will start to become neutropenic over the weekend and most of next week so I'll be taking it easy and not seeing many people. I am determined to not get an infection and end right back in hospital. I want the full three weeks at home.

The final day.

I knew it wasn't going to a good one but: 7 hours hydration. 15 minutes ultra toxic chemo. Then 18! hours hydration. This must be some seriously toxic stuff. Its after effects I dare only speculate on, suffice to say they're not going to be smelling of roses.

Almost over?

Last night I had a temperature of over 40! Paracetemol sorted me out and I was able to watch the football. This morning I still had a temp but not so high. I. Think the new anti biotics are working. I feel pretty good today. I even switched off the heater because I'm not feeling chilly all the time. Tomorrow brings the last day of chemo and It's a 24 hook up. 15 minutes of chemo, and the rest fluid to flush it out. Sounds great but at least it marks the end of this session. I may still make it home for the weekend. And my weight is steadily building, I now weigh the same as my mother! I still need to put on 20 kilos to reach my normal weight. When I get home and feel ok I will start a simple exercise program so I get some muscular weight as well as all this junk sugar I'm eating.

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.

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...