I get tired, and upset, and I'm trying to care a little less

According to a character in the film Contagion 'Blogging isn't writing, it's just graffiti with punctuation.' This line clearly borrows from Truman Capote's critique of the book On the Road by Jack Kerouac, which he characterised as 'That's not writing at all, but typing'.

I've thought a lot about this because quite a few people have told me I should try writing something seriously and I just feel that while I can stumble onto some good points on occasion and make them quite well, I could never tie them together into something as coherent as a book. Not right now anyway while my brain remains as fuzzy as it does.

I also mention Contagion because it's about the spread of a global pandemic and just how easy it could spread in the modern world. It's made me realise just how close I was to becoming a mere statistic when I got swine flu. I was still feeling the after effects of fungal pneumonia when I caught swine flu so my immune system was already pretty ragged. Added to that I had viral meningitis at the same time and it is incredible that I made it through all that.

I've always been very keen to avoid addressing it when people define me as being strong because I've seen some of the strongest people I've ever met succumb to Cancer and some of those who took it less seriously get through it. I've never really believed it's about strength, but I'm coming around to the idea that there might well be something in it. My best friend Dave says I can't be killed by normal means. A lot of my visitors recently have commented on how strong I must be to cope with the slow progress towards the possibility of a lung transplant and I can't tell them they're wrong. I have been strong, although I would say that with the caveat that I can be really lazy at times. I worry I use the fact that I find things difficult for not even trying so I'm going to try and remedy that.

Immortality is ubiquity in time

So what have I to tell you?

Again I have had lots and lots of visitors, and while it is always a pleasure (especially those who have come from a different country), it is mentally exhausting. So now I've got a few days where I can rest up and just feel a little better within myself.

I mentioned the last time I posted that I was going to see the respiratory consultant but that it was merely to keep him abreast of how things were proceeding. It didn't turn out that way at all. I am now just shy of 63kg (9 st 12 lb in old money) so all the docs are happy with my weight, they just want it to be more muscle than fat. That's quite a difficult thing to achieve when you can't exercise because your lungs won't allow you to, so he's looking into another option. You know the things they advertise on telly that can give you a six pack stomach through electrical stimulation of muscles? Well they used similar equipment on a study a few years ago and it was quite successful so they're looking for the gear that will allow me a whole body version of it. This is also because I am now suffering from muscle atrophy because they're barely getting used. With the muscles wasting away I'm getting a dull pain in them too so anything that would improve that situation would be fantastic.

He also wants me to do another set of the dreaded pulmonary function tests. When I was at my lowest weight they couldn't get a reading from their machines because my lung function was so low. Apparently though not all of that is down to damage to the lungs but some of it because I was so underweight. So theoretically they'll now be able to gauge much more accurately the level of damage done to my lungs. Yay.

I had them done when I was in Newcastle so I know I'll be able to adequately provide them with all the info they're looking for but I do hate them so. Having people shout at you to breathe out just that little bit more when you already feel you're about to flake out is just grim.

Oh aye and today would have been my dad's 67th birthday. Still miss him every single day.

You're so blind you flounder drowning

I've had a brilliant last few weeks. I got out to my niece's christening - I missed the last one because I was too ill to go and I've felt bad about it ever since. Seeing so many family and friends in the one place is always great. So many of my cousins have children of their own now as well so it was all very civilised but it was so good to see them all. I didn't even feel terribly tired after it.

On top of that my best friend has been home from Sydney and it's given us a chance to really catch up. It's not that easy to communicate all the aspects of my treatment through the medium of Skype so sitting him down and explaining it all was very much needed. It was also just nice to sit and talk about all the usual nonsense we do. I miss the fecker greatly, as I've mentioned here before.

In between times I've kept myself busy by building a rather large lego set (~3100 pieces). It is the Super Star Destroyer from the Star Wars films. I already have the normal Star Destroyer (which somewhat ironically has more pieces) so this was the next logical step. It cost a lot but I don't have anything else to spend my money on so I thought 'why not'?

Here's the various stages of development.

Stages 1 & 2

Stages 3 & 4

Stages 5 - 7 Complete

It's 1.25 metres long and took me a week to build. The other Star Destroyer took far less time but this one was much more fiddly and I couldn't get comfortable when building it so did it in little stints. Being honest my concentration wasn't up to much either so doing it in little sections was the best way to go. I know it's really geeky but it is genuinely awesome.

I'm also in a really good mood because I'm getting some great visitors this week. Today my mate Olly was going to come through to see me before he moves to Amsterdam on Friday but he's had to reschedule to Thursday due to taking an unfortunate tumble in the park yesterday. I've also got my friend from Uni Yvonne and her wee family coming at the weekend, which I can't wait for.

In between times I've got a trip to see the Respiratory consultant, but that should just be a quick appointment to keep him abreast of progress towards transplant.

You've gotta see her

Today there was a happy wee rite of passage in the Kilday household. My wee niece Chloe came upstairs to see me and she helped me with my medication. She's only 15 months old but she handed me bottles and blister strips for me to count out. All the nephews and niece before her have done exactly this when they've been as young.

I sent the eldest niece Maria a message on her Blackberry to let her know that the wee yin had taken over what she started about a decade ago. When I was recovering after my bone marrow transplant Maria lived only a hundred metres or so away and so would spend lots of time with me, helping me gain strength and just keep me company. She took it upon herself as a two year old to start counting out my tablets for me. She never, ever looked upon them as anything other than helping her uncle Paul - these were never looked upon like sweeties, which considering the steroids I was taking were bright red, sugar coated pills, was hugely impressive. Somehow she just knew the difference. I sometimes wonder if it was reckless of me to allow her access to this stuff but it never became an issue. It never did with the boys (my two nephews Daniel and Ewan) either, with the most amusement coming from dissolving co-codamol in water for me. They have all referred to them as plunk-fizzes.

Maria's now at high school and she never fails to amuse me and thrill me with how she carries herself. She's the kindest, brightest wee soul you could care to meet. If the others come close to as impressive as my wee pal is then we can all be very proud of them.

Into your arms I go

The lyrics I choose for these blog titles have usually got a link to the content. At least that's what I try to do. Normally the link could probably be understood by about three people but I'm explaining this one. My friend Lynn and I have a real love for the band the Lemonheads and Into Your Arms is each of ours favourite song. We have both been at concerts where when the song is being played we've phoned the other just for them to hear it too. It's a tiny little something that's bound us quite tightly over the years.

Right back when I started this blog my friend Claire (affectionately known as Bundo) wrote a little piece about what it's like to be the friend of someone going through all the stuff I have. Well Lynn has come up trumps with a short piece of writing that pretty much encapsulates how most of my friends feel. It is intended for her own blog for her business but I thought it could do with an airing here

"I want to share a story about a friend of mine today. I’ve actually been really struggling with this as his story makes me feel incredibly guilty, I don’t see him often enough and when I do see him, I don’t want to share my stuff because he’s struggling just to breathe.

Everytime I go to see him, I think that I’ll give him hypnosis and help him out, and in the end I just sit and chat, feel helpless, and go away thinking there’s nothing I can do. Then I won’t see him for another few months because I’ll allow myself to get distracted by my life. A life I’m living fully thanks to my health.

My Friend, Paul, is waiting for a lung transplant. He’s 33 and spends most of his time in bed, connected to an oxygen concentrator. This visit, he explained that he’s not even on the active transplant list yet – he’s not even at the stage where he could get that call at any minute. Right now he’s just waiting to be called for the tests to see if he can be placed on that list. It make me really angry to think that this could go on for him for months yet. He’s already been there for over a year, and no end in sight. Yet each time I go see him, he’s positive and talks about it so matter of factly.

Truth is, I talk about trying to live with integrity and passion, yet with Paul, I don’t know how to. The thing that I noticed recently was that I was bothered that two of my friends got ill while we were on holiday, there was a part of me that was annoyed because I thought we’re in Marrakech for god’s sake – make the most of being here…it's just a silly little stomach bug! Not entirely the best and most compassionate way for a pharmacist to be thinking!

The thing that bothers me most is that I’ve been so sure that Paul will get the call any day now, so hearing that he’s not at that stage makes me want to cry. But I also feel like I have no right to feel like that. He’s so strong, that I feel awkward and shallow in his company now. I feel guilty for having full health, which I know is silly too – surely I owe it to him to be living life to the full? "

For what it's worth I think she beats herself up a bit much about how often she visits as she calls often enough and we can just chat away for hours too. Her final point is always something that bothers me though. She doesn't owe it to me to be living life to the full; she only owes that to herself. I often have people telling me they don't want to tell me the troubles from their lives because they seem trivial next to mine. I used to get really annoyed by that - I worried they were ignoring important things just because they weren't as dramatic as Cancer. If something important is happening in your life you need to address it and it's ok to tell me all about it, not least because knowing that life is just carrying on is curiously therapeutic, but also because I'm a right nosey bastard.

I like it that way; but then again maybe.

I was at the renal consultants yesterday to discuss the results of my renogram, allied with the ultrasound of my kidneys and blood tests of kidney function.

The upshot of all this information is that I have a minor obstruction in one of my kidneys which is causing it to drain less effectively than normal. When I say less than normal, it is only very marginally so, but what it looks like it happening is that it is only intermittently causing a problem which would perfectly explain why there are peaks and troughs in the creatinine level in my blood.

This is potentially good news as it might mean that it's not any drug issue that is causing the kidney function to be an issue at all. That said, we are still pursuing with the program of adjusting my repeat prescription drugs for more kidney friendly versions and staying off cyclosporin for a few months.

So where to go from here then? Well the idea is that I will see a urologist (yet another consultant to add to my list) who will decide if this obstruction actually needs addressed in any way and from there that information will be passed to the lung transplant team to do with what they will. The great hope is that the urologist will pass me off as ok and the transplant team accept that I am safe for transplantation.

The wait to see a urologist will of course push the program further back but the longer I have without taking cyclosporin the happier I actually am.

In other news I had to send my sister clothes shopping for me today as my clothes are getting a little bit tight. This has prompted me into further spacing of my night time feeds as I am maintaining a weight of about 60kg quite well.

The future teaches you to be alone

I have a hellish sore throat and a bit of a chest infection. Nothing that will require hospitalisation, just rest and lots of soup.

I have taken the decision to reduce the number of feeds that I put on overnight through the PEG tube in my stomach. I'm well past the target weight of 54kg and putting what is essentially just a fatty liquid into my body is doing bad things to my cholesterol level. I am on a statin drug to help bring that back down to a normal level but it's always going to be a battle to keep it under control if I'm pumping liquid fat in every night. So when I reached 60kg I decided that it was probably ok to alternate the nights where I put a bottle of feed on.

My dietician phoned the other day just because she is now on a different day from my clinic days to make sure I was doing ok and completely agreed with that plan. Claire has been with me all the way from the bone marrow transplant and has been a really good friend as well as looking after my health. Her phone call was well timed too as it gave me the chance to ask her what would happen with my PEG tube as it's nearly two years since it was put in and that's how long they're recommended for. She's going to check but as long as the tube is still working perfectly, which it is, then there's really no need to replace it. This is the answer I hoped for as I can't be bothered with another procedure, even though it would be much less of an intrusive procedure than the original placing of the tube. I can still do without it.

I had a renogram last week and it confirmed that there is a little bit of an issue with my right kidney. It is a little slower at draining than the left but it is such a small difference that it is regarded as pretty negligible, and certainly not a reason to preclude me from a transplant. It also matches up with a slightly darker area that was seen on the ultrasound when they performed that. I'm going to see the renal consultant again next week - I've got the blood tests done that he wished so he can now give me a better idea of where we are. He explained to me last time that my kidney function appears to be going through cycles where the creatinine levels go up and down. He suspects that when I was down in Newcastle and had the Glomerular Filtration rate test done it just so happened that I was at the peak of one of these cycles, so it isn't indicative of my overall renal health. Here's hoping the next time I go down I'm at a trough in the cycle.