Diagnosis Day

20th October 2000 began in a haze. It was the morning after our departmental cheese and wine and I had somewhat overdone it with the liquid part of that pairing. In part this was down to worry as I had spent that thursday afternoon in my GP's surgery getting blood taken to investigate why I had been getting persistent, massive bruises. One on my arm had lasted for about a fortnight and the one on my thigh was still hanging around nearly three weeks later. It was a result of my knee regularly hitting the steering column of a go-kart weeks before. When I look back to that event I also remember that after my second stint on the kart I couldn't stop shaking and was violently sick.

So all things considered I knew there was something wrong and simply wanted a good night out with my friends before I got the results and that's what happened. It was a tremendous night - really fantastic fun that completely took my mind off the worries that had developed since first seeing my doctor about it all.

I had taken the day off so was still lying in bed with a quite stunning hangover when I heard a rather vigorous chap at the door. My room was at the front of the house so I went to the window to see who it was and got a bit of a shock to see my GP standing there telling me he had my phone number wrong and had to come round to see me.

You can imagine this set alarm bells going instantly.

I went down and let him in but he didn't really explain much. He simply said there had been some irregularities with my blood tests and that I had to go up to the local hospital's haematology ward instantly. I let him go back to work and set about organising a lift up to the hospital.

I phoned my mate John, who had left his phone at home, so I phoned my lab to try and get someone to run upstairs to get him. This was the moment that one of our Chinese research students who had very, very minimal English decided would be his moment to answer the lab phone for the first time. After a particularly stressful few minutes of trying to explain what was going on I managed to get Xavi on the line and he sent my supervisor Colin up to find John and to get him to come round to my place.

While waiting on John I took the opportunity to pack a few things and to phone my dad to let him know what was going on. I didn't know much so it was just to let him know I was going up to the hospital really. After that I found myself sitting on my bed absolutely shot with worry so I phoned the person I trusted the most in the whole world to calm me down a bit, my ex girlfriend Sam. We had split up earlier that year, mostly due to my moving away to the other end of the country really, but had remained very good friends. We spoke almost every day but she had been away that week so I hadn't heard from her and she was a bit surprised at me calling during the day. She did a tremendous job of calming me down and left me in a much better state for my journey up to the hospital. I mention this especially because after John picked me up and we got in the car to go up my phone went and it was my best friend Dave calling to ask what the hell was going on. It seems that while she was incredible at calming me down she wasn't so good at staying that way herself afterwards and had phoned him in tears to tell him about it. That was my first incident of seeing how I might get physical symptoms but whatever was happening to me was going to affect all the people I care about.

When I arrived at the correct ward my name and date of birth were written on a paper towel on the reception desk. I don't know why I took this as being a particularly bad sign but it seemed terribly meaningful at the time. A lovely Scottish nurse admitted me and notified the consultant that I had arrived and told me he would be through to see me shortly.

I sent John away but told him I'd need him (and his housemate Rich who I also worked with) to come back up later as I was pretty sure this wasn't a night for me sitting alone, and my family are 500 miles away so couldn't be there.

Soon after Andy Gorringe arrived in and slowly, methodically explained that I had Chronic Myeloid Leukaemia and what that entailed. At the time I was convinced I understood everything that he had said but when the time came to have to recant that information to my family and friends I found that a tiny percentage of it had actually gone in. The only thing that had really stuck was a word that hadn't even been used - Cancer.

I got a hold of some reading material on the correct type of leukaemia and the associated treatments so I could explain it to everyone. I say everyone, but that isn't really accurate. I spoke to my mum and dad, but because this was all happening on my brother in law Peter's birthday they decided to just let the whole family go out on their friday night out before telling them what was going on on Saturday. I did however have to phone Sam and Dave to give them an update. Sam went into internet overdrive and set about downloading anything she could find on the subject whilst Dave set about defusing my worry - this he achieved by referring to it as the biggest attention seeking trick I have ever played. This provided a most welcome laugh - my first of the day.

John and Rich came up and I talked it all through with them and with each telling I got a better hold of the story and came to relax a little more into my situation.

In retrospect I now know there are many differing responses to such a diagnosis and mine fits within the realm of pragmatic. There has never been any 'why me?' moments and nor have I ever really considered that it was something that was going to kill me. I simply wondered what we had to do to fix it.

That wasn't something that could be sorted quickly though. A full assessment of my situation had to be done first. To start with all my bruising (and the bleeding gums, and general lethargy I had been feeling for months) were caused by the massive excess of white blood cells. This disparity had to be resolved and a confirmation of diagnosis had to be undertaken before treatments could be discussed. My diagnosis had been on the basis of my blood films but a confirmation could only be achieved by taking a sample of bone marrow, which would be done a few days later. There really was no doubt about it though, this was a matter of formalities.

So that night, after phoning the friends who did know and speaking to the family who knew and sending Rich and John home I relaxed and went to sleep fairly rapidly. I did lie there wondering what two of my old friends from school Joe and Joanne were doing as it was also their birthdays but I didn't fret too much about my own situation.

I had a vague feeling there had been something wrong for a while; nothing as momentous as this admittedly, but finding out what it was and that there were lots of options gave me an odd feeling of relief and I then had one of the best nights sleep I had managed in months.

Lofty notions

The idea of this blog is something akin to the methodology deployed in the film masterpiece the Godfather Part II.

There is one narrative thread with the current story of my everyday life that I will update whenever anything interesting happens in it, but there's another narrative that took place a decade ago that I want people to be familiar with so they can know me a bit better. So there will be jumps back and forth between the two storylines. I shouldn't imagine it'll be confusing but that's the premise.

I'll be back later to tell you about the day I was told I had Cancer.

Mice mentalness

I am really fascinated by this story:

Link

When I stop and think it does make sense I suppose because the bone marrow provides the stem cells that make everything in the body so flaws in it are likely to have knock on effects everywhere, including the brain.

I do wonder though whether this means that someone who has had a bone marrow transplant that wasn't likely to develop mental illness with their own bone marrow might just be more inclined to with the new bone marrow.

Of course my real worry is that my bone marrow transplant came from my big sister so the mental illness I'm most worried about is that I will develop a penchant for shoes and an unstoppable need to watch and cry at the film Beaches.

Badoom and indeed tsschh!

I also really, really liked this. I always loved the cartoon strip Calvin & Hobbes so it's nice to see someone do this.

So no-one told you life was gonna be this way

When my friends found out I was ill originally they each reacted in their own, incredibly personal ways. Just as there's a whole spectrum of responses a patient can have to being told such news the people who are friends of the patient have the right to respond in any way they feel is appropriate.

Sometimes it's with a certain stoicism, others it's with a real vigour and determination to help and for others still it just leads to floods of tears and snotters fuelled by worry.

All these responses are valid and, for me at least, they were all helpful.

While at the time it can feel like hard work trying to console someone who you just can't stop crying, there's also something therapeutic in it. I know some may view a friend crying over the person who is really ill as being selfish but I don't see it that way at all.

If you have a chronic disease you might well get the physical symptoms all to yourself but every single person you know suffers somewhat from the fallout of your condition and just as doctors can't tell you how to behave in regards your own condition you can't tell anyone else how to feel about your position.

The stoic are quite easy to deal with as they are just convinced it will all work out fine in the end but in a curious way the ones who are most vigorous in their claim that you'll beat this disease can be the hardest work. Put it this way, I was always convinced I would be fine - it actually never entered my mind that I wouldn't be. However , if you have people coming in to see you telling you you're going to be fine all the time then you start to wonder just why so many people are trying to reassure you.

It's often the ones who tell you that you'll be fine the most that are the ones who are actually the most terrified out of everyone. In my case a few people who were just like that came to see me less and less because they couldn't cope watching it all unfold. That's sad but I can kind of understand it.

For what it's worth most of my friends have been incredible. Almost all developed an attitude early on where we would allow ourselves to joke about it all. Of course this can appear crass to outsiders not familiar with the rules we play by but it works for us.

The reason I mention all of this is that as well as reacting to diagnosis in certain ways, there is also a wide range of positions in how much information people actually want about your treatment. For some a simple overview is all that is required but some really immerse themselves in the process, perhaps so they can feel part of it.

I've always been someone who wants to know all the details, no matter how grisly, and I sometimes forget that not everyone wants to know them. So the next bit is solely for those who really, really want to know the details.

Last week I was given a link to a blog of a woman who has in the last ten days undergone a lung transplant down in Newcastle. She goes into incredible detail and it's a fascinating read from my perspective and perhaps will go some way to answering some of the questions my friends have that I don't yet have the answers to.

Tori's Journal

I think it's an incredible read but recognise it's not for everyone.

It will take many, many posts to explain just how much my friends have done for me over the years. I do hope they all know how much I appreciate it.

The cords by which we are tied

You know when you're feeling a little under the weather and can't even face a plate of food that's sat right in front of you? It just requires too much effort to eat it and digest it that you just push it away and even the few mouthfuls you do force down make you nauseous.

This is how I feel permanently. I can't get enough oxygen into me to perform all the tasks the body needs it for, and the things that do work go slower than normal.

Anyone who has had the misfortune of having to see me try and eat things over the last year or so has seen how difficult it is for me.

That, allied to the repeated infections that my body was having to fight off led to the weight loss that Bundo mentioned in her post. I was dangerously underweight - at one point I was 41kg, which is about 6 and a half stone.

So drastic measures needed to be taken. At first I had a Nasogastric (NG) tube fitted to give me liquid food to build me up but it is a short term measure and mine was likely to be a perennial problem. I then had a tube inserted into my stomach that can stay in for two years and I can use a pump to push liquid food into my stomach overnight.

The entry site is just above my bellybutton and is essentially an umbilical cord for grown ups. I have a litre of very high calorie food that I pump in overnight and have shakes that I can syringe in to the tube during the day. I eat meals as well, just not as much as I used to, but the night-time feeding is what has helped the most. I've put on 10kg since we started that and my thighs are now broader than my knees, which has got to be a good thing. We shall find out shortly if that's going to be an adequate weight for the transplant team

My new umbilical cord binds me to the pump though, which is why I put it on overnight, when I'm just lying in bed anyway. It interferes less with my normal day. The feed also leaves you feeling quite bloated so it's better to have that through the night than during the day where it might put you off your actual food.

The really alarming thing is how quickly you get used to things like this. I've had experience of this before with the Hickman lines I've had in my chest for chemo/drug administration but it still surprises me how quickly it becomes the most normal thing in the world.

That's not to say I don't have mishaps - there is very little I can do to explain just how sore it is when I accidentally kneel on the tube and it tugs at my abdomen. Doing this yesterday twisted the end piece off it so I have a lovely nurse stopping over shortly with a repair kit.

So I get fed out a bottle, my umbilical cord is my friend, I sleep all the time and basically all my needs are tended to by my family. Essentially this illness has led to a regression back to baby status for me. I don't just shite myself though, let's be clear on that.

Vindication

So today is a pretty momentous one.

Dr. Andrew Wakefield has been struck off the medical register by the General Medical Council.

You may remember him from the completely fictitious link between the MMR vaccine and autism in children.

Not only was his research totally discredited but it was referred to as dishonest, unethical and that he had acted irresponsibly.

A decent summary of it all can be found here

Times Article

and

Guardian Article

I can't begin to explain just how important this is. This was an instance where someone managed to convince people of a threat that simply wasn't there and then made money out of their subsequent fears. This is aided and abetted by a press that doesn't know how to deal with any science related story (certainly not without using the word boffins) and a public that are primed to believe any scare story, especially when it might affect their kids.

We need a scientifically literate population. By which I mean that we need a population that knows what evidence actually is and whether what is provided as evidence really is enough to substantiate any claims made. People obviously don't need to know as much about science as weirdos like me who choose to study it but they should understand the simple methodology of how science is conducted.

What we also need though is an honest press that reports rather than sensationalises.

Of course in this case a great many people with broad scientific education were also taken in by Dr. Wakefield. His article was published in the Lancet after all, so I understand why some people attributed great posterity to his findings. Which brings me to the peer review system. The GMC has found massive issues regarding his methodology so why weren't these picked up when the article was originally submitted?
This was a contentious paper so why weren't people very keen to make sure that everything in it stood up to scrutiny?

We live in a world where news travels ridiculously fast and grows legs along the way. We need to be absolutely sure that what is published stands up to meticulous scrutiny, not just cursory glances at it.

It's taken a long time but Andrew Wakefield has finally been shown up as the utterly loathsome man he is.

I hope we all learn a lesson from this whole grubby affair.

Simile strangulation

Watch carefully as I take an already overstretched simile and strangle it to within an inch of its life.

Right so I have come to think of my periods of illness as being somewhat like the NASA Apollo missions to the moon.

What do you mean you don't get it? I think it's a perfectly sensible comparison to make.

Oh all right then here's my thinking.

My first instance of being taken in to hospital was a real step into the unknown; alien territory if you like. This is akin to the preparatory missions to the moon.

The Bone Marrow Transplant itself therefore becomes the big show itself - the Apollo 11 landings, not least of all because I probably got a similar dose of radiation to those chaps.

Now these were times where I had absolutely everyone's attention. It was such a shock to everyone that a perfectly fit 22 year old should be in such a situation so I was surrounded by people all the time. My best friend calls it the biggest attention seeking trick I ever played. Strange as may sound to say but there's an excitement to it all as well - anything where your life might well be on the line has this I think.

Over time my relapses and battles with opportunistic infections become so commonplace that I even stop telling people about them, because they're all just the same situation repeated. This I think of as the next Apollo mission where people cared less because it had been done before. Now I don't actually think anybody cared less - I certainly gave them no opportunity to do so - but the fact is we all became a little complacent about just how much danger I was in each time I ended up in hospital. It's a matter of practicality you see. I was in and out of hospital so much that nobody could afford to get stressed out by my being in there each and every time - it would just take too much energy

And so to Apollo 13 where something goes very wrong indeed.
This time I end up in hospital in Liverpool and it's serious. Just as with said lunar vehicle it's a problem with the breathing apparatus and we need to find a way of getting the best out of the equipment we have at hand, so we can get me home safely.
This brings a response from everyone that is akin to how it was when I was first diagnosed. Everyone is scared that I might not actually survive this and it pushes them into overdrive and I get everyone coming to see me. Another phenomenal bit of attention seeking I'll grant you.

OK so it's a pretty contrived comparison but you try some of the drugs I've had to take over the years and see what your mind comes up with. I'm very much hoping for the same sort of conclusion as Apollo 13 had by the way, including a wee dip in the ocean. It's been far, far too long since I've had the chance to do that.

It really is me

My immune system is getting all confused again. As well as deciding my lungs aren't in fact mine it has gone down the same route with my skin.

It's a very odd thing to consider that your own body doesn't even want to have anything to do with you but there it is.

Having a bone marrow transplant means that you effectively get someone else's immune system and the risk with that is that it might struggle to accept everything that makes up you is in fact you.

It's not a big deal at the moment as I am using steroid creams to control it but having been down this path before I suspect it's only a matter of time before I have to change treatments and we have to suppress my immune system further than it already is.

This will curtail my trips out of the house a bit because I'll have to limit how many people (by which I mean the infectious) I come into contact with but is entirely necessary. I've got a bit of practice in isolation over the years so it's not so big a deal really.

Timeline

I feel anyone who is reading about me should probably have a sense of the order of things so here's a bit of a whistle stop tour.

1977 - Born. The 4th of 5 children. 3 sisters and a brother to share a life with.

1989 - Start secondary school. Realise I have a voice and what I can use it for.

1995 - Leave secondary school. Work with my dad and uncles over the summer before starting at university.

1999 - Graduate from Uni with an honours degree in Chemistry with Med Chem. Decide to move to Cardiff for postgrad study.

2000 - Diagnosed with chronic myloid leukaemia. Have to abandon PhD and move home to start treatment for it. This will be a bone marrow transplant - bone marrow donated by my eldest sister who is found to be a perfect match.

2001 - have BMT. Chemo and radiotherapy regimes prepare me for it by killing my own bone marrow and then get given my sisters. Later in the year develop chronic graft versus host disease (GvHD). This is where my new immune system fails to recognise my own organs as being 'self' and starts to reject them. Many different treatments follow and occupy most of the next year until it is finally under control.

2002 - Resume postgraduate studies, this time in Aberdeen, under the guidance of a colleague from my time in Cardiff. Suffer occasionally from bouts of pneumonia and other instances of GvHD notably incredibly dry eyes and porous, tightening skin. This leads to the need for circumcision.

2004 - A series of investigations into breathing difficulties caused by recurrent chest infections reveals scarring of the lungs, mostly caused by the radiotherapy prior to BMT. Tests show weakened respiratory output but life is perfectly manageable.

2006 - Take up a post-doctoral placement in Belfast where health is maintained at the same level as the previous few years apart from being hospitalised due to a respiratory consultant who was surprised I could function as well with such a low measurement of oxygen level in the blood.

2007 - My father dies of cancer. A career change is pretty much foisted upon me and I decide to do what I have really always wanted to do and become a teacher. Before doing so I take a position as a school lab tech to get more of a feel for a school environment before applying for the PGCE. Health is still stable.

2008 - Move to Liverpool and do the PGCE. Love every second of it and thrive doing it.

2009 - In the last month of the course (May 2009) I have my first hospital stay in two years when I develop pneumonia again. This time though it's a fungal pneumonia and it takes forever to clear and causes a lot of damage in the meantime. This also causes GvHD to flare again and this time it attacks my lungs with a vengeance. I develop what they call bronchiolitis obliterans, where the body's attempts to heal itself actually block the airways. Start a massive dose of steroids to shock my immune system into stopping its attacks on me but the side effects of this almost kill me.

2010 - Now know that there are no other medical treatments available to pursue so my only option now is to have a lung transplant. To date I am below an acceptable weight for such a procedure to be able to take place because of being so ill previously but I am putting weight on and hopefully this will happen sooner rather than later.

There's the straightforward facts. Over time I'll expand on the story and say a lot more about what happened at all the steps along the way.

My Friend Paul (contributed by Bundo)

The following is the work of my mate Bundo. You honestly couldn't hope for more in a friend. I promise these are her own words.

My Friend Paul.

Doubtless, Paul will be most disgruntled to know I can’t actually remember the first time we met. It will have been in the pub watching football, and we fell into the same group together; he lived in Aberdeen and travelled to games and to visit family, so wasn’t always around. I was aware of the day he got the all clear from leukaemia, but not having lived through that time with him, I was rubbishly unaware of just what he’d been through, or how “all clear” can still mean it can dominate your life.

So things fell into a booze fuelled 20’s, which is how I remember my first run in with Paul’s rubbish lungs. He had pneumonia, and was in Glasgows Royal Infirmary. However, Celtic were playing Barcelona and he had a ticket. And that’s how I came to introduce Paul to my Dad for the first time, with a canula in the back of one hand and a glass of coke in the other, he cheerfully explained he had pnuemonia, but he’d discharged himself for the game and it was easier to just keep the canula in as “he didn’t have many veins left and he was going back to the hospital after the game”. My Dad boggled.

It's probably a good time to mention the amount of trouble Paul’s mouth has got us into. Never one to keep an opinion to himself, Paul has shouted at Emos (“Oh cheer up”) at Chavs (“someones been shopping at topman”) and at the New York Yankees (“This is the gayest thing I've ever done, and Ive kissed men”) It’s ok though, because I always comfort myself that with his crap lungs, I can probably outrun the baying mob faster than he can.

Until last year, Paul enjoyed a period of relative good health. He still struggled with his eyes and his joints and there was more than one brush with pneumonia, but day to day it was easy to forget he was ill. Trips to weddings, to cities and memorably to New York were a riot. There is no better company than Paul on form.

And then it all went a bit wrong. Paul moved to Liverpool to study teaching, and as I regularly worked in the area I visited often. We were out to the cinema one night, and the next, he’d checked himself into hospital with pneumonia. But this time it wasn’t so easy. It just wouldn’t shake off. Soon this was to be a crash course in immunology. I’ll leave Paul to explain that bit.

Eventually Paul was well enough to move home, but with his body rejecting his lungs (thankfully it had stopped trying to reject his skin at that point, that was gruesome) he was about to get a season ticket for Glasgow’s hospitals.

Since then, I’ve seen how ill ill can be. And just how scary it is when your best mate falls below 6 stone, or cant get a breath. He scared the shit out of me the day he told me he had been resigned to dying, cause he might have been but I was still that one step behind – Paul always protects us from the worst of it.

Most days though, its about keeping on keeping on (as we say, what’s the alternative?). I truly believe the transplant will come, and, having not had fully functioning lungs for the whole time Ive known him, I might even see a different Paul. The big ask is for a good match that his immune system will take.

I also believe when the time comes Paul's body should be left to science. Not for his immune system, only because maybe then we will understand how he gets women while he’s got an oxygen tank and a feeding tube. I fully expect him to be dating supermodels once the new lungs kick in, I imagine they’ll love him telling them how much prettier he is than them, it seems to work a treat.

Cx

Complacency

I've become all too aware in the last week or two just how complacent I've become about a few things.

You see one of my old tutors died from pneumonia when he was in hospital.

I've had pneumonia so many times now, and in so many different guises that it's become a running joke. Over the years I've checked myself into hospital with it and not even bothered contacting my friends because I know that it'll be fine after a short course of antibiotics.

Pneumonia only really kills people that have significant other problems with their health that mean that they can't fight it off. Strangely though I've got a real blind spot in remembering that I am in fact one of those people.

I have a compromised immune system so I have a markedly increased chance of having real problems with infections like that and I really need to remember that.

My immune system has been compromised deliberately I should say because it was doing it's best to try and kill me. Long term effects of the treatment I had in the regime for a bone marrow transplant 9 years ago has led to my immune system being unclear on what is actually my own tissue and what isn't.

As a result my body is rejecting its own lungs. Pisser!

I wonder if my not taking these things as seriously as I maybe should as being a defensive tactic though. If I start taking it seriously maybe then is when I'll actually be in real trouble. Who knows?

Well, here goes

So here I am. I'm in my early thirties and life has taken a bit of a detour.

Let me explain.

I am Paul. I am a nerd. So much of one in fact that I'm in the business of ensuring my kind are well represented in the future (by which I mean I'm a science teacher).
For the best part of a decade I was involved in research but it never really captivated me the way I hoped it would. What always excited me was teaching and it took me till I was 30, and had wasted a lot of my (and quite a few other peoples) time, to realise it.
Having said that at least having done it that way I was genuinely sure it was the right path for me.

Anyway, that's only part of the story.
Also in that last decade I crammed in a lot of other stuff.
The dominating one was contracting leukaemia. I'm sure over time I'll talk about this a lot as it has come to dominate my life.
The long term aspects of the treatments I received for it are actually why my life is currently on this detour. My lungs are failing and I am now in the process of waiting for the go ahead for a lung transplant.

So I am at home tethered to an oxygen concentrator which allows me to breathe better than I can manage on my own. I can go out but this is very much defined by how much energy I have, which is not much.

So, it occurred to me that when I was ill originally with leukaemia I wasn't really capable of taking stock of things or recording them for posterity so just got on with things and then tried to write about it later. While moderately successful I feel that the blogosphere might just be the way for me to get all the things that I think about off my chest.

If other people read it then all the better. I am a relentless show off anyway so even though I really am only doing this for my own amusement I do hope someone else will get something out of it.