People say I'm the life of the party

So I went out on saturday. My friend Stephen was having a barbecue so I took the opportunity to go up and see loads of my friends, and their families, in one go. I had an absolutely fantastic time and the only pity was that my oxygen supply doesn't last as long as I'd like. Having said that though when I got home I was actually a lot more tired than I had expected to be so it was probably just long enough to be out. I know in myself that I am more subdued these days than I used to be in these sort of situations but I still enjoy myself greatly in the company of people I've known for what seems like forever.

It actually leaves me still tired the next day after I go out too but it's so very worth it. It's amazing to do something that is just a little bit normal again.

My monthly trip to the hospital was this morning and I got my infusion of immunoglobulins to bump up my immune system which went perfectly well. The consultants are all perfectly happy with everything now and seem just as keen as I am for progress on the transplant front. They've all been so visibly annoyed that this has happened to a patient that did everything according to their protocols. It just goes to show how little they can predict about any patients long term prognosis.

Slight addendum to this is that my docs called me when my blood results came in and it seems long term use of toxic drugs has had an effect on my kidneys so I have to miss a few days worth of the immunosuppressant I take and then reduce the normal dose thereafter. It only surprises me that it's taken ten years for that to happen as my body has had a lot thrown at it medicine wise over that period. As soon as the doctor told me it made sense as I've been peeing much more regularly than normal over the last week and thought it was a bit weird.

The other thing that came to light today is that the nurses at the day unit gauge my health superficially by how often and how loudly I sing when I'm there. When I'm feeling good I apparently chant away to my hearts content. I've noticed this myself actually but the issue with it just now is that while I may well be singing it's not my normal singing voice. I don't have the breath to go for it the way I normally would so it's a much more reserved performance. One of the first things I'll do with a new set of breathing gear is to really let go with a song.

So does it matter if I give in easy?

When I had to go back in to hospital with the infection that led to the removal of my Hickman line I got a new insight into exactly what my situation was. In the solitude of the rooms of the transplant ward you don't really pay much heed to the fact there's other patients there because you don't have any contact with them. When I ended up back in there I was in a room for four so there were three other men all suffering from Cancer in one form or another. As it happened one of those chaps was an elderly man who had just been given the news that his treatments had failed and all they could do for him now was to make him comfortable. He took the news in the most relaxed manner and when I spoke to him just afterwards he said he knew it was coming so it wasn't worth getting in a flap about.

Hospitals aren't great places for retaining any sort of privacy and because he was completely bed ridden and couldn't get out to the relatives room it meant he had to explain to his family that nothing more could be done from his bed in a shared room. They were understandably distraught and the vision of a dying man consoling those he loved will stick with me for a long time. Try as I might I couldn't ignore what was going on in there even knowing how intrusive it was.

It's the very nature of Cancer wards that some patients won't make it and I've shared rooms with quite a few patients who haven't been as lucky as I've been and it always brings my own plight into sharp focus. I sometimes forget just how close to the edge I've been, although I suppose that might be a coping mechanism as you can't get on with your life if you're busy worrying about how close you were to losing it.

I know a place where I can go when I'm low

There aren't any photographs that I know of that have captured me in my bald phase but that wasn't because I didn't want anyone taking pictures of me in that state. It just so happened that nobody brought a camera in with them when they were visiting me (well why would they?) and it never occurred to me that I might want a picture of me like that. I kind of wish I had got someone to take a photo of me back then so I could see for myself whether I did indeed suit being bald or whether that was just a kindness on the part of my friends.

I only had access to one mirror in the en-suite bathroom and I had very little use for it as I had no hair to brush and no need to shave. I even tended to brush my teeth at the sink in my room because I did it so often it was just easier to do it there. So I never really looked at myself all that often, although I do remember thinking, through the opiate induced fog, that I was looking at someone else's face in the mirror.

The weird part really was losing all my body hair. Now I'm not the hairiest of chaps anyway but there's something very peculiar about feeling completely smooth from top to toe. My skin also felt paper thin and I needed to use moisturiser for ages because it was so affected by radiation treatment. I just felt so fragile.

So while I was still in there feeling altogether like someone else my friend Lynn came by with a wee photo album full of photo's of all the things we had done together since we were at school and all through uni. It was the loveliest gift and we sat going through them all trying to piece together what all the events were and when they had happened and, perhaps more importantly, which of us had done something stupid that particular time. The album was only a third full and it was Lynn's instructions to me to fill up the rest of it with the stuff we'll do after I get better that tugged at the heart strings. I had a good wee greet at the thoughtfulness of it all when I was on my own later that night.

I've allowed my fears to get larger than life

In the immediate aftermath of the bone marrow transplant I was what they term neutropenic, which meant that my white blood cell counts were very low and was therefore wide open to infection. Now during that time extra measures are put in place to further minimise the chance of infection. It's a million miles away from the bubble that used to be commonplace but it can still be quite a lonely time. One of the weirdest things they do when you're neutropenic is to treat any material coming into the room as a potential risk, which includes things like newspapers, so I was always a day behind in the news as my papers had to go and get microwaved before I was allowed them.

It makes perfect sense when you stop and think about it but it amused me greatly that my news had to go through such a process to reach me.

Being neutropenic was what was keeping me in hospital post transplant as my immune system wouldn't be strong enough to be out yet, which was a little frustrating even if I understood the logic.

I still couldn't eat at this time though due to the terrible ulceration of my mouth so I had a Nasogastric (NG) tube put in to feed me directly to ensure I didn't lose any more weight. When getting that put in I had to get an X-Ray done to make sure it was in the right place and it was an old friend from school that came with the portable X-Ray to do it, which was lovely if a little weird.

About this time I got quite obsessed about knowing what my blood counts were as they were what was keeping me in so I was always looking for updates that might be a hint that I could get home. After 5 weeks or so my counts were high enough that it was safe for me to go home. I was still going to the bone marrow clinic twice a week so I was being very well looked after, but the difference in getting to go home to your own bed to sleep is incredible. As much as anything else it's just nice to get through a whole night without a nurse coming in to check your obs or getting rudely awoken at just after 6 to get bloods taken.

I still had the NG tube in for that first week or so at home as I was still not eating sufficiently and what with still being bald I didn't look very good. I went to mass with my dad and got stared at pretty incessantly by a young boy who was fascinated by it all. It was a worthwhile venture out the house though as I met another old friend from schools mum and dad who told me just how upset their daughter had been to hear about my diagnosis. She was living in America so I told them I'd get in touch with her to let her know that I was doing ok.

I only managed a month before I ended up back in hospital again due to an infection I picked up. Unfortunately it probably was caused by the hole in my chest so we had to take the Hickman line out at that time. I say unfortunately because that meant going back to taking blood the conventional way. I had also grown rather attached to this odd little bit of plumbing, except on the occasions when I accidentally tugged on it admittedly, so it was weird to have it taken out.

So that was another ten days in the hospital getting antibiotics and having the joy of fairly regular Naso-pharyngeal aspirates, which basically involve shoving a tube into your nose and what feels like forcing it into your brain, and sucking whatever is up there out. It fair brings a tear to the eye and nothing will ever get you used to it.

The odd infection notwithstanding, the docs were extremely pleased with my progress and I have to say I felt pretty pleased about it all myself. I even thought to myself that it had all gone rather better than I could have hoped for and wondered whether it was going to be just that straightforward.

Post transplant there is a 'battle' for prevalence between blood cells made by the old bone marrow and the new stuff which is assessed by the doctors in what they call chimerism (from the Greek mythological creature the Chimera). On that front I was making excellent progress, which was testament to the fact that the chemo and radiotherapy regimes they had made for me had worked well in destroying my own bone marrow so it wasn't putting up any fight at all.

Oh, for the sake of momentum

Well I'm feeling a bit better now. I've even managed to eat a couple of light things and kept them down too. I even feel a little more alive as a result.

The result is that I'm up and about and was the beneficiary of a visit from my two nephews an hour ago after their first day at school. They looked so very sweet in their uniforms and they were amazingly excitable. It was great to see them both and I'm really glad they both enjoyed it.

Now I think I deserve an hour of lying in the bath and just soaking away the aches and pains of the last few days.

People move on, move along

I'm absolutely furious just now. I'm meant to be at my oldest friends wedding and I'm simply not well enough to be there. I've been sick all week and just can't stop vomiting. The problem, as usual, is that I simply can't get enough of a breath and that's meaning that my body can't digest any food and so is just getting rid of it. It's incredibly infuriating especially because it's causing me to lose weight again and as a result I'm feeling terribly sorry for myself.

It is a bit of a cliché but I'm sick and tired of feeling sick and tired. I'm incredibly bored of it all.

The happy couple are coming up to see me tomorrow which will make up for it in some way but it's just not the same as seeing all the guys I went to school with and very rarely see any more.

I never thought you'd be a junkie because Heroin is so passé

In the midst of the morphine fog I got a visit from Laurie. Even though we had split up she had promised that she would come and visit albeit with the proviso that she couldn't cope with me getting injections. I reassured her that because I had the Hickman line in I wouldn't need any injections as everything intravenous was going through the spaghetti junction on my chest so she came up and sat with me for hours. As fate would have it though I did need an intramuscular injection and it was needed in the exact time when she was there so she had to leave. I'd never seen anyone so very averse to needles before; not even my brother is that bad.

By this point I was glad we had broken up because I now understood the full ramifications of my condition and I'd have felt bad for anyone having to deal with it. The paranoia that the drugs induced would almost certainly have led me to thinking that she was only staying with me because it was too cruel to split up, which would have compounded my misery.

The misery of morphine continued well after I came off it. The withdrawal was just as horrific an experience as being on it but in a very different way. It wasn't without pain but more than anything it was the anxiety that sticks in my mind. I don't know what I was so fraught about as I had the best medical staff around dealing with the worst aspects of opiate withdrawal but I was still very tightly wound and couldn't relax at all. It did give me a completely different attitude towards those dealing with addiction though.

When undergoing withdrawal I had ridiculous tremors in my hands so the guitar that was meant to keep me occupied sat in the corner of the room untouched. When I picked it up after my recovery I realised that it wasn't the best of ideas. My skin was paper thin and even basic guitar playing was cutting my fingers to ribbons, which when you can't stop bleeding easily pretty much counts as self abuse.

It didn't go unplayed though as one of the nurses used to come in on her break and play it for me while I sang along every now and then which was a quite lovely way to pass the time.

Dreams and songs to sing

Today my 11 year old niece has gone to her first ever Celtic game. I am so very jealous. I've realised that last season was the first since I was her age that I didn't get to a single game. Now I do have a pretty decent excuse but it's quite sad and I now feel a little bit detached from the club as a result. It's just not the same watching on telly.

That said there was the time after the bone marrow transplant when I wasn't allowed to go to games too and I coped with that much better. Having said that those were rather more successful times so it was a bit easier. I did of course miss some of the most incredible games of my generation but it didn't matter so much somehow. In fact the fact that we were a good side back then actually gave me quite a few moments of absolute joy in the middle of some pretty horrible times. When seriously ill you do realise that things like sports are pretty inconsequential yet these trivialities can have a massive effect on your well being. Celtic had an actual placebo effect on me.

There's something weird going on though when I miss it more when we're rubbish compared to when we were actually a very good side.

As much as the football itself is something I miss, I probably miss going to the pub pre and post game more. I really miss catching up with the guys and sitting talking utter pish with them.

I heard you say the past was much more fun

If pain reminds you that you're alive then the aforementioned episode with the stomach acid is the most alive I've ever felt. If that's true though then is the converse true as well? Is the inability to feel when we're at our least alive?

After the initial high of receiving Diamorphine it rapidly became a terrible burden. I couldn't cope without it but being on it was a horrendous experience. I've mentioned the dreams before but that isn't even the half of it. My waking hours were spent with a mind gone wandering. I couldn't trust my own thoughts and often made little sense to whoever was with me. Normally that would frustrate me as I always like to be understood, even if someone disagrees with me, but I felt nothing. I was as they say 'oot the game'.

So I couldn't interact with the world in the way I would normally like to and I vividly remember feeling completely detached from it. Allied to the sleep deprivation I was suffering from I just didn't feel like I was operating on the same level as all these people around me. Feeling so detached from everything around me, I felt like I wasn't making a mark on the world, that my life wasn't of note, that death might not actually be either too far away or even unwelcome. The numbness felt like preparation for the end in my mind; a fog that hides everything yet gives the sense of impending danger.

All these thoughts are, with the benefit of the retrospectoscope, side effects of the chemicals sloshing around in my bloodstream but they felt so very real at the time. I've never really spoken about it to anyone because there's very few ways to crowbar that there were times that you wanted to just close your eyes and slip away into the conversation.

I know that when I get my chance at a lung transplant that pain medication will be necessary at certain points but I'll be doing my best to minimise how much of it I get. I'd rather feel a little pain than have to endure that fog again.

Just have a little patience

Today's wee trip out to the leafy west end of Glasgow to the Beatson Oncology Centre reminded me of a few things about Cancer patients. Everyone is familiar with the inspirational stories of Cancer patients in their daily battles to survive but very few people seem to mention those patients who don't take their treatments seriously.

It's a minority clearly but some of the things you see in the day units is hard to stomach. I've seen people walk out of the day unit in between sessions to go to the pub for a few pints and a smoke. It's not even so much things like that which gall me the most, it's the ones who seem unable to show even the littlest gratitude towards the medics that are not only keeping them alive but treating them very well in the process. They are never done complaining about how long each step takes and seem oblivious to the fact that things sometimes take a while because great care needs to be taken with the treatment they are receiving as well as the fact that they're not the only patients there. That seems to be the hardest thing for them to understand and while I can understand frustration at times it's always the same ones who snarl at the staff and almost always over really trivial things.

Today there was justified frustration for one woman for whom the pharmacy had messed up and was left waiting for hours till it got sorted but all she did was get herself a wee cup of coffee and a blanket to keep her warm and sat and had a wee snooze till the time passed. I've been in similar positions myself and done the same thing - there is just nothing to earn from getting your arse hairs in a knot about something that can't even be altered by shouting anyway. I always found that I didn't really have the energy to get all worked up about things so maybe it's a testament to these belligerent nutjobs that they can still muster up the energy to act like a spoiled wean even during chemotherapy.

I wish they didn't have to do it in shared areas though, and I especially prefer it when they don't ask me what I think. They never seem to like my responses.

Oh and yes it is a Take That lyric. What of it? Eh?