Don't let it blow your mind away

My previous post about my first trip to the Beatson will have learned a little about the protocol pre transplant. Day zero is transplant day so that first trip there for measurement and getting talked through what is involved in Total Body Irradiation (TBI) happens on day -14.

Day -13 was my last night out on the town with Dave.

Day -9 was the day reserved for insertion of my Hickman line

A Hickman line is a tube that goes into your chest and connects to the either the superior vena cava (the main vein into the heart) or the jugular vein from which you can either take blood or give intravenous drugs.

As far as inanimate objects go it is the piece of synthetic material I have the most affection for in the whole world (yes, even more than my lego star destroyer). You see having one of these things in means that you don't have conventional lines in your arm replaced so regularly. Where it is especially important is for Chemotherapy delivery as giving it through the smaller needles required for veins in your arm can cause massive damage to them so having this strange little thing dangling from your collarbone is an absolute godsend.

The surgery to insert the line is done under a local anaesthetic and is quite a strange experience for it. Being awake while a surgeon has to get up on the table to thread something into you while talking to you to try and keep you calm is very odd indeed. The surgery itself didn't stress me out in the slightest and I actually dozed off at one point which I'm told is just weird (I've also been known to fall asleep in my dentists chair). Previous to the surgery though a line was placed in the back of my hand and the junior surgeon responsible didn't realise he had speared the vein and injected ten mls of saline solution into the back of my hand. This hurt. A Lot. Probably more so because it was so very unexpected. After that little mishap though it was just fine.

It takes a bit of getting used to obviously but then quite suddenly it feels like part of you. The line I had is referred to as a double lumen which means it splits into two separate lines, one of which is devoted to giving meds and the one from which blood is taken. This is because there are some drugs that actually bind to the lines themselves so if you want to measure accurate levels of drugs in your blood you want to ensure you take blood only from one where no drugs from the line could influence the result.

From each of the two lines there was another splitter attached so at any time I could have four intravenous lines attached. This was quite commonplace it was to turn out. In fact at one point I had all four of those and a morphine syringe pump piggybacked onto one so I had five different IV pumps pushing drugs into me.

Now even though I have said it's something you very quickly get used to that doesn't mean there weren't mishaps along the way. On a few occasions getting out of bed during the night to go to the toilet I actually stepped on all the lines and tugged at my chest. I won't tell you the words I used at the time but it was a rather painful mistake to make. Thankfully the line didn't move under this stress but it was a very painful reminder to remember my surroundings a bit more.

Now it might have occurred to you that having a gaping hole in your chest isn't a great idea and you'd be absolutely right but great care is taken with the site itself and with the connection of the drug lines. Everything is conducted under absolute sterility to ensure that no infection occurs.

So having this line in place meant that on day -7 I could start the preparative Chemotherapy I was to have but before all that I got to go home for one last night in my own bed.

Look around you, all you see are sympathetic eyes

I read an article during the week about young people blogging about their lives with Cancer and an alarming thought came upon me. At 32 I can't really in all honesty classify myself as a young man and it's now been nine years since I had any trace of Cancer in my body.

So why is it that I still classify myself as a Cancer patient?

I think that, despite my feelings about it for a good few years, I have come to terms with the fact that it's always going to define my life and that's been a very difficult process. I was so adamant that I would have a life after Cancer that had no hangover from it at all but I had to slowly come around to the fact that while the Cancer had gone the treatments needed to rid me of it had done some serious damage and it's that damage that makes me still associate myself with Cancer.

The reason that so much damage was done is because of the nature of the treatments deployed to treat Cancer. Consider how much of a treatment that it takes to kill you as well as the amount that it takes to produce the desired effect and think of these as the lethal dose and the therapeutic dose. In any normal, everyday treatments the difference between these two doses (called the therapeutic index science nerds) is large and so they are safe to use. So the therapeutic index is like the safety margin. The issue with Cancer treatments is that to be effective the therapeutic dose is alarmingly close to the lethal dose and so the therapeutic index is very small so there is little safety margin. Of course where Cancer is concerned the use of such dangerous treatments is pretty much because without treatment the patient will die anyway so it is worth taking the risk.

What it also means though is that other things get damaged because as well as having extreme therapeutic effects they also have extreme side effects. That's where most of the damage is done.

I never kept a blog at the time but I did write about many aspects of my treatment and in the next little bit I plan to go through the whole bone marrow transplant procedure with you. Hope you enjoy it.

Don't be afraid to be weak, don't be too proud to be strong

A funny thing happens when you get diagnosed with cancer, people start talking about you in terms of how brave or how strong you are. Now as well intentioned, and of course flattering, as these comments are they're based on a flawed starting point. People say these things because they think that they wouldn't cope with the same news as well as they perceive you to be doing, but that just plainly isn't true. People cope with what gets thrown at them but when you're one step removed you in some ways feel it much harder.

Where a patient will become pragmatic and look at what needs to be done, the friends and family can afford themselves the luxury of getting very upset about it. I know for instance that I would find it much tougher if one of my family or friends was seriously unwell because there's nothing I could do to make it better but I know what I need to do myself. And that isn't, contrary to what people say at these times, about being strong.

There are times when you have to be as meek as you've ever been and just let things happen to you, and these are just as often as the times you need to be strong and fight. Nobody prepares you for that though, it's a lesson learned through getting it wrong. Even then there is no guarantee that doing everything right will provide the correct result. I've shared wards with people who have fought when they needed to and just took the pain when that was what was needed and yet didn't survive. I've also shared wards with people who didn't take things as serious as they should have yet made it almost unscathed. Sometimes it's just your luck and there's no preparation for that.

One thing that surprised me about my own treatment is just how annoyed my consultants have got as time has passed. I've pretty much done everything by the book yet things haven't quite worked out as well as they hoped. The consultants you see get to treat you as human beings - the more junior doctors can often treat you with a certain distance as it allows them to reach conclusions more accurately if they aren't swayed by personal feelings towards you but for the consultants that isn't an issue as they have the experience to know they'll make the right decision anyway and so can afford to treat you as a human being rather than just a bag of symptoms. At least that's what all mine have done.

So if I have been brave and strong it's just because that's what I needed to be at the times required and you'd be just the same if it were you. Unfortunately I can't guarantee I will be should any such thing happen to you - I'll probably be in bits. I found that out when my friend Ciarán relapsed a few years ago and then suddenly died and then again a few months later when my dad died after a short battle with a few forms of Cancer. I didn't feel particularly strong or brave after either of those episodes regardless of what people told me.

A vision in love wearing boxing gloves

I mentioned before that leaving Cardiff was a real wrench and one of the ways in which it was so was in that I was leaving behind the medical team who had dealt with everything to that point. They had told me of the diagnosis and helped me through all the decision making processes, yet I was now leaving this group that I trusted implicitly.

When I got home one of the first things I did was arrange to meet with the consultant to whom I had been referred in Glasgow. It was the oddest half hour I've probably ever had. In that time Anne Parker told me on eight separate occasions that I could die from the treatments alone never mind the disease and made it perfectly clear that Clare would be treated completely independent of me and if for any reason whatsoever she decided not to donate her bone marrow, no debate would be entered into as even though she was my sister her welfare were of the same importance as mine.

I had got used to the amount of information that can be thrown at you in appointments with consultants and was significantly better at being able to recant the information back to everyone after, but even I was slightly taken aback when Anne told me there was a slot that had opened up six weeks from then if I wanted to take it. I really didn't expect things to progress at the rate it was going but I phoned Clare and she said that was absolutely fine by her and arranged for her to get in touch with the team.

Over the next month or so I had to get a few things sorted out, not least of all was moving the last of my stuff back from Cardiff. We made a weekend of it with Dave, Owen and myself taking my dad's van down to get my gear but stopping off halfway at Warrington where our friend Lynn's parents lived for the night. We would stop there again on the way back up as it was also Lynn's birthday that weekend. We had an absolutely fantastic time on that little road trip, the messy details of which aren't really for this blog.

On returning I had to visit the Beatson Oncology Centre at the Western Infirmary to get measured up ahead of radiotherapy. I was still seeing Laurie at the time and had stayed at her place the night before as she lived right next to the Beatson but went alone, as it's been my tendency to do. I know a lot of people like to have someone along with them for all their appointments as they ask things you might not think of as well as remember the things that you don't but I prefer to be on my own.

This appointment wasn't without it's concerns. When I had been handed my treatment protocol it had this entry

Now TBI I understood to be Total Body Irradiation which is a scary prospect but it wasn't that which bothered me. BOC stands for Beatson Oncology Centre, which I knew to be where I was to go for this but for some reason I got all outraged that they were going to be measuring me for a wig. I had no desire for that and was going to let them know in no uncertain terms what they could do with their wig. That was until it was pointed out to me that WIG simply stands for Western Infirmary Glasgow, the site of the Beatson. It had nothing to do with wigs at all. What an idiot.

So I went there feeling rather sheepish but in all honesty I probably would have been that way anyway as it's a hell of a place to go to. I was measured incredibly accurately whilst lying in a very particular position on a bed, which would ensure that I got the correct dose of radiation and that it be equally distributed through my body. The room where you get the radiotherapy has many moulds for people who are getting targetted radiation on very specific areas of their body.

I went in there knowing that these moulds ensure that no other tissue is damaged by the radiation so I couldn't stop thinking about the fact I would have no such thing. I was deliberately exposing all of me to these beams. Then, more than any other time I knew the risk I was taking.

I went to meet Laurie for lunch and headed home to get my head around it all again.

To help the process along Dave decided that he and I would go out on the friday for a bit of a last hurrah before all the bad stuff would really start. That was the day Laurie and I broke up but it didn't detract much from how much fun we had. There was some bad dancing, some pool playing and as was common there was a fair bit of karaoke - I did a wonderful job of Raindrop's Keep Fallin' on my Head as well as Aztec Camera's Somewhere in My Heart.

We ended up a terrible mess but it was exactly what I needed just then.

After that the serious stuff began.

Don't be too black, don't be too gay, just get a little duller

When I go to the respiratory clinic at Glasgow Royal I have to take a wheelchair with me. I can walk a little but it's a hell of a distance from the carpark to get to where I needed to go and I simply can't walk it. I hate it but have got used to being pushed about now and don't get all huffy about it.

I noticed something very odd yesterday though - the number of people who smile at you when you're wheelchair bound is quite startling. Often there's a little nod of the head as well. I don't recall people being so friendly when I've been walking about.

I don't want to analyse it too much to be honest, I was just amused by it.

So the craic from the hospital is that they are now happy with my weight and are happy to put me forward for transplant, but we now need to repeat a lot of the tests we had done 6 months ago so they're more up to date which will take a few weeks and then I go back to the respiratory consultant in 4 weeks to tie up the referral protocol and it gets sent away to Newcastle.

This is genuine progress and I am thrilled although it does mean I have to do lung function tests again which I loathe.

The last set I had done weren't fun and this won't be any better. One of the tests last time I recorded a figure of 16% of what I should have been able to achieve with functioning lungs. Numbers like that are pretty terrifying but explain a lot.

I had a look at my last CT scan as well and the subtlety of the damage is amazing. It's all in the smallest structures within the lungs rather than being something clear and obvious.

So there's real, tangible progress now and it's made a difference already. I just feel happier, although that was also aided by my best friend being home from Bratislava over the past few days so I got to spend some time with him.

Still tired though, and with that in mind I'm off for a snooze

We go out tonight and breathe a little deeper

Or not as the case may be.

Read this and thought it was very interesting.

Guardian Science

Not sure it's something that will affect me directly but will definitely be of interest to people who find themselves in a similar position to mine in the near future. The topic of stem cell treatments is always going to be one that divides people but if approached with care and sensitivity it has the potential to be the greatest leap of this generation.

Now recently I've been struggling a bit with focus - I have been grasping for words mid sentence and it's beginning to bother me. I do lots of things to keep my mind occupied but the particular cocktail of drugs I take these days has left the world a little on the fuzzy side so if you find I repeat myself or make less sense than I normally do then that's the only excuse I have to offer.

Leaving, on a jet plane

Leaving Cardiff was a real wrench. I had made so many amazing friends in the year or so I was down there and it just felt like I was in the middle of something rather than a conclusion.

On the day before I was coming home I got a phone call from Colin, my PhD supervisor, to tell me to come in as he was going to give me one of his guitars so I could learn to play while I was undergoing the treatments to come. I went in to my department at the arranged time and walked in to my tiny little lab to find pretty much the whole department squeezed in so they could say goodbye. The shock I got increased when Colin handed over a lovely new guitar that they had all chipped in to pay for as well as a complete Beatles songbook which everyone had signed at their favourite (or just appropriate in the case of Rajinda who chose Blackbird because well she's a black bird) song.

Colin had picked Hey Jude and wrote just remember 'the movement you need is on your shoulders' which is a line that has always fascinated me.

Now I've got a lot to say for myself but that day I was rendered completely speechless and just sat on the bench of my lab crying and saying thanks to everyone who had came. I honestly didn't see it coming at all. I'm still in touch with many of those guys now - I hope they know just how much of a difference they made to my life.

When I got back home it transpired that my friends had a night out in Glasgow planned for their football team so I tagged along and had an absolutely fantastic night. We ended up, as was traditional, in the Garage nightclub and I even bumped into a large group of old friends from my undergrad class at Glasgow Uni. Amongst that lot was a new PhD student from America who watched as Shaun and I threw some shapes on the dancefloor and then came over to talk to me after we had worked our way through the whole 9 minute version of American Pie. She got my attention by using the chat up line 'You're beautiful'. Now for someone with as highly tuned an ego as mine that was always going to be a winner. The fact that she was beautiful helped as well.

What followed was a rather short romance that was only called to a halt by the intrusion of a bone marrow transplant. You see I thought we had several months before that was a possibility so Laurie and I had just kind of got on with things as if it was something we would deal with at the time, but a slot opened up only 6 weeks later and when it came down to it Laurie admitted it was too much to deal with. I didn't mind so much because I was happy that she was honest - it was better that than her pretending to be ok when it was too much to deal with. After all we had only met a little while before but it's certainly something that I file in the 'what if?' column.