rapidrise is the way forward

As it's such a sunny day I decided to go out on my bike; the first time in at least 6 months. So I got the bike out of the walkin wardrobe/shed and dusted it off, pumped up the tires and made my way up to the Chevin. I had a great time. If anyone ever said that you never forget how to ride a bike then they were wrong. My skills were somewhat lacking. Rocks that I would have sailed over in the past were quite a struggle for me this time around. I'm sure it will come back fairly quickly though.

The wind blowing through my hair* felt amazing. I'm not going to leave it that long again!



*When I say hair I mean through the vents of my helmet onto my sweaty bald head.

Is that a laboratory in your pocket or are you just pleased to see me?

Early Monday morning I woke, sat up in bed and read for a while. At five past seven it dawned on me that I needed to be at the hospital for 7:30! A mad rush and we made it for eight. Not a problem it seemed; In fact I didn't get seen until 8:30. Along came a doctor and I was asked to remove my trousers, and then my boxer shorts. My privates were then covered witha towel and the doctor went to work. A bit of pain from a local anastheatic followed by a small incision and a pipe, not all that dfifferent froma Hickman line, was inserted about 7cm to left of my tackle and sewn down. Not as bad as I had thought it would be but certainly not good.

A taxi to Seacroft hospital where I was promptly supplied with an egg sandwich and cup of coffee, along with a constant supply of biscuits and chocolate bars whilst I waited and waited and waited for my blood test results. All was fine so i was hooked up to the, rather DIY looking, machine that would seperate my stem cells from the rest of my blood. A nurse sits there with you for the full four hours as they constantly have to monitor what is happening and make slight adjustments here and there to make sure that the maximum number of cells are being extracted. A TV and video was brought over and I watched Cool Runnings. The time actually went fairly quickly.

A taxi back to St. James' and more waiting for the results. When they finally came in I was told there weren't enough (a count of 2.4 and they needed a minimum 3) so I would have to stay in over night. Despite my protesting (and a lot of protesting) they convinced my to stay in over night. I wanted to go home and come back in the morning but apparently this pipe could start bleeding and as it is in a major vein there mould be a A LOT of blood.

The next day same again but this time it took ages to get the results back, and even though it was 99.9% likely that I would have enough cells this time they wouldn't take the pipe out until we got confirmation. At about 5pm we did get the results. 2.7, what a surprise, NOT! so totalled together I have a 5.1 (and minimum 3 needed). So off we go to work removing the line from my groin. A stitch here, a stitch there, and then the doctor puls out the pipe. And pulls, and pulls, this thing is HUGE! The amount of pipe that was in me was unbelievable, it was a good 10cm long and half a centimeter wide! No wonder they didn't let me home, I would have bled to death. Finally I could go home and what was scheduled to be one day turned into two full days with a night in hospital.

Some things I discovered on this little trip:
The St. James' hospital canteen is absolutely diabolical. There is no excuse for food of such a low grade. I'm sure many patients would like a nice place to eat when friends and family come to visit, it would be uplifting to feel like you'd gone out, especially if you are spending a long time in hospital.

Give blood, there service is excellent and they really look after you. I'm trying to convince my girlfriend to become a donor but, like many, is scared of needles. The pain from giving blood is like being nipped on the arm so get over it and do some good!

Become a bone marrow donor. It would mean being hooked up tot his machine for four hours, but the line wouldn't be required as they'd just hook your arms up. I couldn't do that because the veins in my arm are so knackered from chemotherapy anf the flow wouldn't be good enough.

And finally, something I've observed MANY times before. The doctors and nurses drip feed you selected information! I didn't know there was a posibility I would have to stay in over night. I didn't even bring my pyjamas. I was very angry about it. They just assume you will know, or that you don't have any plans. Here's some news for you, my life doesn't revolve around cancer, I also do other things, and therefore I need to know in great detail when treatments and appointments will affect my life.

ah shutupayaface

Well, after yesterday's little out burst I feel much better about things today. I went to the hospital to get some antibiotics for a little cough I have and spoke to some of the nurses for some stem cell transplant truth. I asked them directly if I'd be able to navigate myself to the toilet even at the lowest of points. It seems I will.

I did receive this information in an email yesterday from my oncology nurse though; 'The stay in hospital is usually 4 weeks for the stem cell transplant and usually it takes approximately 3 - 6 months to recover completely and have your energy levels restored.'

This is a normal person though. I am not normal and no chemo has ever held me back for long. I will be back on track in no time. Watch this space.

prelude to a harvest

Monday will be a spectacular day spent having a stem cell harvest. This consists of the following:
Arrive at St. James' at 7:30 am to be seen by a doctor and have a pipe inserted into an artery near my groin. I then hang around for hospital transport to take me to Seacroft where they do the Harvest (provided my blood count is high enough). If they have enough stem cells I go back to Jimmy's for the pipe removing. If not I get to stay in hospital another night so they can do it all again on Tuesday.

I will be 27 years old on Monday the 5th.

This is going to be a shit day, but this is the point; when I was first told '...and then we'll do a stem cell harvest...', I ask, 'how long does that take?', 'oh, about 4 hours'.

Why don't they just tell the truth? Yes the actual procedure takes 4 hours but I'm going to be there ALL day. They should just say that. It makes me wonder what other information they trickle feed to me. The stem cell transplant, with a three and half week hospital visit, will undoubtedly be a lot worse than they have let on. Not in terms of feeling sick but things like having to measure how much you piss (I had to do that previously and I hate it), and I've heard, not sure so don't quote me, that I'll be so weak that I have piss and shit in those special receptacles. It's degrading.

Just doing a Google search on 'stem cell tranplant' brings up the following nuggets (from cancerbackup.org.uk):

'This intensive treatment will completely destroy all your normal bone marrow' -mmm, nice. Sounds like a good way to help someone. To help you we are going to take you to within an inch of your life and then let/hope you recover.

This may sound so very negative but I am pissed off right now. I actually feel very positive that I am learning all I need from this cancer experience. I am really happy and looking forward to the future as well as fully enjoying (most of) now. Plus I just pianted the bedroom and it's much better, a nice healing sky blue colour.

Stem Cell Harversting

My stem cell harvest has been booked for my birthday of all days. It consists of having a large needle put into one arm and a smaller one in the other. Actually it seems the veins in my arms have had it due to previous chemo and now there will be a pipe put into my groin. How great.

Then for four hours they pump blood out of the big needle into a cetrifugal machine that seperates the stems cells from my blood, and then puts the blood back through the small needle into me. These stem cells are then frozen, I pressume, for use at a later date. What later date I am not sure. The stem cell transplant takes about 4 weeks in hospital. I really want to enjoy the summer and totally don’t want to do it. I saw my oncologist yesterday and he’s into me having it (not surprisingly) but I don’t want to be in here for a month while the sun is shining outside. I’ve thought about maybe delaying it until September but that is three months away. Not sure if they’d be up for that. In the mean time I have some alternative healing tricks up my sleeve. I’ll wait until I reavel them to the general public since some may consider them fairly wacky, due to ingorance or being afraid of the unknown or being generally not understanding and thinking ‘modern’ medicine is the greatest things since drug patenting.

Haha, don’t think you know it all. There’s much more to life than this materialistic plain that we live in/on. This dis-ease has thrown me into discovering the other sides of life much quicker. I’ve always questioned things I am told and this is no exception.

Just a few thoughts whilst in here.

I’ve been in three days now and things are going ok. Chemo does make me very tired but I got a very good nights sleep last night and am hoping for the saem tonight. I have had a torrent of visiters which is always very nice. Thanks.

The water retension, just like last time has started to set it. I’ve told the nurses about it some hopefully this time something can be done about it before it really takes over. Last time it took a good week once out of hospital to clear. Some diuretics, and otherwise prune juice should do the trick.

Whilst being in here I dream of doing very simple things. I really feel like going to play pool. Going on a weekend camping trip with friends. Over the past year I’ve noticed I’ve become much less materialistic. I appreciate the little things in life. The things that mean something. I’ve realised that things we buy are just ‘things’. Yes, they’re good and are fun but they are just things. When I dropped a pile of CDs onto my brand new laptop keyboard and broke the keys I just wasn’t that bothered. In the past I would have had that sinking feeling in my stomach but this time it was nothing. Annoyance, that’s all, and good. It’s fixed now and it didn’t cost a thing. Nothing to worry about. The suns out; I want out of here.

Are You In, or Are You Out?

After a little bit of uncertainty whether I was coming into hospital or not due to bed availability issues, I am in. After a succesful blood test I have this time had a Groshing line in. These are similar to Hickman lines but the installation procedure is different; and this time I was fully awake to experience it. No tomazepan or morphine this time, just a bit of local anastheatic. I also had two students watching the procedure so that meant a full commentary of exactly what was happening, even though I couldn’t see it, which included an in depth review of what can go wrong; how confidence inspiring. It wasn’t too bad though but it is weird having so much pressure applied to your chest whilst they feed the pipe through without actually feeling any pain. I am pleased to announce that my line doesn’t include any of those crazy, chest stabbing, clamps. And as I’m not starting the chemo I can leave the hospital this evening and go out for dinner with Imelda.

Life with a cold head

Forgot to mention that this time it was a very quick hair loss scheme. On the previous chemo (ABVD), although I didn't lose all my hair, what I did lose was a very slow progress. I guess different types of chemo, and different people have very individual reactions. The majority of the public have no idea there are so many different types of chemo, relying entirely on the media's depiction of chemotherapy. This usually has a character losing all their hair from one soap episode to the next. Although cancer is a very much spoken about and advertised subject people are very in the dark about it all. There are so many people I speak to that have never even heard of the lymph nevermind what it actually does...but then, doctors haven't a clue about what's good and bad for lymph (diet wise).

This isn't an attack on the public at all. I was in the dark as well but this has been going on for such a long time now that it is hard to remember what it was like to not have such a detailed databank on cancer. I'm not even saying that people should have this knowledge.

Some good friends mentioned that I now look like Lex Luthor. A mastermind? Yes. A criminal? No..erm, yes, on some levels.

Garibaldi? No, Tommybaldi

I've been back a few days now after my excellent time in Rome. It was a greatly needed break. A break from everything, I ate what I wanted, I drank lots (well, at €3 for half a litre of house wine it would be rude, and stupid, not to).

It was a holiday of two halves, the first being in the city, and as always was days of constant trekking that really tire you out. My feet were aching so much. Then after four days we moved to a campsite north of the city; stayed in a cabin. It had a pool, a great restaurant and bar, and lots of hot sunshine...as well as lots of Germans and Dutch ladies ;)

I had noticed a lot of hair on my pillow in the mornings whilst at the hotel. So I decided to give my head a good rinse under the shower. When I looked in the mirror it turned out I had a big bald patch on the side of my head. For the next day I wore a cap, then I decided to just pull it all out. After a procedure that lasted a lot longer than I thought, which ended in shaving the areas that were holding on I am now completely bald. Having had the chance to sun my egg head I don't look ill bald but rather bald by choice. This is many due to my eyebrows still being in full swing. I hope I can hang onto them throughout the treatment.

Back into hospital on Monday for a Hickman line immediately followed by 5 days of chemo. Now I know how I feel during and after it I am dreading it. Hopefully I can prepare better for some things though. Anything to alleviate the utter shitness of it all must surely be a good thing.

on the morrow.

I had my Hickman line out yesterday. It was an odd experience; I had an injection and it all went numb. Then there was lots of pushing a pulling and it tickled a bit. Not bad at all, but I had a paper towel over my head so I couldn't see any of it. I don't like seeing things like that (although I am able to watch injections now, I've had so many). Anyway, I can enjoy the holiday now with no risk of infection. I need it. I'm completely exhausted.