Should be out by tomorrow

As some of you know, and some of you don't, I was admitted to hospital on Monday with a raised temperature. I can't say I felt that bad, very tired but not poorly as such. But we've been told quite firmly: do not sit on a temperature as you do not know what is causing it, and the drugs you are on mask a lot of stuff so it is possible to feel fine, but not be fine at all.

So Jo kicked my ass into the car against my will (I was not wanting to follow the advice mentioned above) and off we went. I have been suffering with strange spot/lesions for about 10 days on my head and another area which I don't wish to discuss too much on such an open forum, which have made walking and sitting very difficult. This was considered to be GvHD, but on arrival at the hospital I was given a blanket antibiotic to cover any possible infection and in 24 hours the pain had significantly reduced, and a virus has been found on the line in my arm which has also been identified on my head and other end. So it is simply viral and being treated and I am no longer in any real discomfort. My line has been taken out of my arm which is lovely, no more tubes hanging out of my body, which are such a pain in the arse. My temperature has stayed low, and I have been told I will probably go home once the course of antibiotics is over, which is tomorrow. I feel fine, am allowed of the ward, still having to eat pureed meals as my mouth is sore, but it is amazing how quickly you get used to something and almost forget what it was like to eat normally! It is just hard trying to find things that keep my diet a bit interesting, at the moment there are a lot of milk based foodstuffs passing my lips which is getting a bit tiresome. It is all about getting calories in as even though I feel I am eating constantly I haven't put on any weight at all.

My face and scalp is still red and itchy, but not around the eyes which makes me look like I've stayed on a sunbed a bit too long with goggles on. This IS considered to be a GvHD related skin condition, along with the rash on my torso and the skin on my feet which is now peeling off in sheets (quite satisfying to pull off as it comes off in strips, bit like peeling wallpaper). I also have skin discolouration (like freckles) on my legs, which is also 'classic' GvHD apparently. None of these things are that bad so I am very happy at moment. The transplant nurse visited me today and said that to have had the hard time I've had with all the viruses (apparently no one expected me to have such a difficult transplant when it was a reduced intensity allo) and to look so healthy and be so active I have done remarkably well, which was nice to hear as I have nothing to compare my progress to, whereas she has years of seeing these things. As I mentioned before all major internal organs are operating fine and a few skin problems I can put up with right now.

GvHD!

I have been meaning to write this for weeks so the usual apologies for not keeping you all updated.

I have finally been hit with a confirmed case of Graft-versus-Host-Disease, my consultant has been very reluctant to say GvHD up until now - all the skin rashes and issues I’ve had have been attributed to drug reactions. This is good news, GvHD is something we have been waiting for, it shows that my donor immune system is recognising me as foreign, and this increases the chances of the immune system recognising and attacking any disease that might show itself.

It does come with some discomfort though, at the moment it is mainly a very nasty rash covering my torso and arms, mouth sores and dry purple soles of my feet. The mouth sores have made it quite hard to eat, which has resulted in me loosing a bit more weight frustratingly, I am now a meagre 11 stone, a weight I have not been since I was about 18. Last weekend my face went bright red and swelled up, I was put on steroids and some strong creams and this has sorted the swelling, but since then my face has peeled constantly, and is still quite red. This, combined with the weight loss, makes me look like I’ve just returned from some polar expedition, looking windswept and in need of nourishment! Not a bad look really, could be worse. The only real issue is the face cream, which my eldest informed me makes me smell like ‘ear wax’. All these symptoms are controllable though (the rash on my torso is looking better everyday) and at least at this point there is nothing significant going on with major organs. Liver, kidneys and lungs all operating fine. I am no longer on any nasty anti-biotics for CMV as the test results have come back negative for the virus, and the toxoplasmosis is also currently in check. My treatment for the pneumonia I contracted continues, but this is only once a month so is not particularly intrusive.

One of the best things that we’ve been told is that my symptoms suggest an aggressive donor and this can only be a good thing as it means it is likely to be aggressive towards any left over Myeloma. I have also had it confirmed that a bone marrow biopsy taken last week shows no disease and 100% donor marrow. I am currently, officially, a chimera. A blood test taken in September showed my blood was a 100% donor too, but a bone marrow biopsy provides a much better picture of what is going on. This is incredible news, my faulty bone marrow is gone, hopefully never to return. My new efficient, aggressive German marrow has taken over!

One foot in the hospital

I've been wanting to write an 'I'm home' blog for a week now (for it is a week and one day since I was discharged) but I have found it hard to believe that I won't just be on my way back the moment I utter the words. And for good reason...

Last week my temperature refused to behave, swinging up to 37.9, then down again, 38.1 then down again. Never quite meeting the criteria to be admitted but coming stressfully close. I admit I shed a few tears one night when my temperature hit 38 and the prospect of going back in a mere three days after discharge became a potential reality. But it just went down again one hour later. We believe that I caught a mild cold and may have actually overcome it, I did feel a bit rubbish for a few days, just like when you have a cold. Now I feel ok, touch wood everyone.

So I currently still feel like tomorrow I could be back in hospital and haven't quite relaxed into home life yet. The improvement over the last week in my energy levels and eating have been enormous and I have put on 2 pounds in weight. I now weigh 11st 7lb, I should be about 12st 10lb so I have a little way to go yet.

I still have the rash which is all over my body now, but it is mixed up with 'blood spots' caused by burst capillaries as I have low platelets. This could be caused by the drugs I'm on, the virus' I have or GvHD. This is also the explanation for all my other gripes, such as the headaches. This is the point at which no-one really knows what is going to happen. It is simply a case of wait and see...and suck up the symptoms cause it will be worth it.

To start, some good news

I had a visit from my consultant yesterday, it was brief as I had been asleep, but essentially he said that he is absolutely sure that Toxoplamosis has been the problem and that I am now on the right treatment (I must admit it's been since they changed all my treatment in response to finding the Toxo that I have felt progressively better). I have issues with fatigue, but that is to be expected I think, it was only last weekend that I was having 39+ temperatures and couldn't breath! But the consultant believes that by the end of the week I should be ready to go home, so Friday! This is obviously brilliant news but I feel like I should stay another couple of weeks - I am so scared of what will happen if I go back to our house this week.

Just to make sure no good bit of news ever reaches you without some thing bad happening too, I have developed oral thrush. Very common in my situation (I thought I was supposed to be on prophelactic anti-fungal drugs to stop this but there we go), very easy to treat and it does explain why my mouth has felt so weird the last few days.

Treating toxoplasmosis does take 3-6 weeks of anti-biotics but these can be taken orally and taken home which is good. The CMV still needs to be treated with IV anti-biotics, so my going home is reliant on what the CMV is doing, the doctor on today would not be drawn on the last result as we will get a new result tomorrow. Blood counts are really good which means that GCS-F injections have ceased, my neutrophils were 6.29 or something, really high. Low platelets though which has led me to bruise quite badly in a few places (elbow and hands mostly, the things that get bashed) and I am having a platelet transfusion right now.

I was weighed this morning too, 73kg with my dressing gown on. I was 80.5kg with my dressing gown off when I came in. That is almost a stone, there is a stone less of me now then there was 5 weeks ago. And even I have to admit it shows, I've got skinny legs and arms. My skinny jeans no longer seductively cling to my frame but hang loose like the sails of a disused trawler left to rot in the harbour. And I've still got massive feet and ankles from all the fluid they pumped into me a couple of weeks back, I can barely get my trainers on, I kid you not.

My musical recommendations for this week are album Barton Fink 'Gear', song Cage The Elephant 'Ain't No Rest For The Wicked'.

Written on behalf of

This blog has been requested by my wonderful wife who is somehow holding a home together as well working. And still she talks about what big batch of great, healthy food she's going to do the kids so they're having something proper even though she's not there. Amazing. I honestly do not know how she does it, I would have crashed and burned weeks ago.

Anyhow apparently the length of time I have not blogged has led everyone to think I am back at home. This has obviously led to the inevitable repeated questions and identical conversations with the people who care about how I'm doing, etc. The kind of thing that was one of the driving forces behind starting this blog was making sure all you lovely people are informed all the time so Jo was not the single conduit of information, so I have failed you and her on that, for which I'm sorry, I'm sorry I'm so so sorry, there's no easy way to say that I'm sorry, I'm sorry.

Having said that I have not been sat here slacking. My last blog was done last Saturday night when I'd really pulled through feeling shitty and felt I had the energy to do a quick one. The next morning I wake up, feel ok, bit of tightness on my chest but nothing much. I take a walk down to the tea machine at the end of the corridor and by the time I get there (it isn't far) I feel really dizzy, out of breath and I am asked if I'm ok as I'm clinging onto the table the tea machine sits on. I say I feel dizzy and I'm popped in a wheelchair and told to get back into bed. So on the Sunday morning when Jo turns up, having left me the night before fine, I'm hooked up to an oxygen line and really struggling to breath. I feel like I've got about 50% lung capacity and I have to pant to just to get air. A physio pops in at some point and gives me some relaxing exercises which turn out to be most useful bit of advice I get all day. Then it all got very medicalised, I got oxygen all day, then transferred to an oxygen machine with a nebuliser attached which essentially passed some steam in with the sir supply so it didn't dry out the air passages. I then got moved to the Intermediate Dependency Unit, one below High Dependency Unit.

I'm not sure in hindsight if I needed to go there, they wanted me on this special oxygen machine which 'may feel like you've stuck your head out of a fast moving car'. I managed 20 minutes of what was supposed to be a 2 hour session and had to admit defeat, I've never felt anything like it. The power of the air meant if you relaxed your face you resembled Scooby doo on a windy day, or someone falling from an aeroplane. To take a breath felt like someone ramming air down your throat. But the main issue was breathing out, with my reduced lung function I just couldn't do it and I felt like I was being suffocated. They said 'don't worry quite a few people can't do it', I'd like to meet one that could.

Now there is a happy end. Obviously I am well enough to write a blog right now, that's good. But the up shot of all the recent tests which were spurred into action by quite an unhealthy spell has found that it is VERY likely all of these symptoms, from the grumbling temperatures to the high temperature more recently even including the chest infection, are due to Toxoplasmosis. Another one of these CMV type things that just sits there and you don't know you've got it until you have no defenses. Then, oh boy, you know you've got it. Can lead to lesions on the brain but it is, as with CMV, easily treatable and this just means the doctors are no longer guessing at what the problem is, they know, so they know precisely what antibiotic to give. This is a massive result. I still need to be in, and it could still need to be a few more weeks but I now know I am on the right stuff for what has caused all these issues. You can all have a drink on that tonight, I'm having hot lemon squash.

Quick update

It's been a few days since I last wrote but three days ago my condition went from grumbling high-ish temperatures of 38.1s and 38.2s to 39.9! And this continued for two days, this morning I woke up feeling incredibly bad, but by this afternoon I feel loads better. This I attribute to my wonderful wife who came in at 10am to find me still in bed having ignored my breakfast (I haven't been able to eat during these two days and have been sick for the first time since all this treatment started - and I'm not on any chemo), she got me out of bed, got me sitting in a chair, and chatting and eventually eating. This has made me feel immensely better.

So the upshot is: I'm still in, but I now have my own room. My CMV levels over the last 3 weeks have gone 180,000 - 77,000 - 20,000 so we are hopeful the next one will be negative. My neutrophils are on the rise 0.17 - 0.20 - 0.30 over the last three days, I'm even creating red blood cells. Predictions are that I will be in another week meaning I'll have been here this time for as long as I was to have my transplant! and I'll have been on the ward for 10 weeks out of the last 13. Scary stuff.

One thing leads to another...

I remain in hospital and probably will be here over the weekend, but amazingly what I came in for is not what I am now staying in for. Let me explain.

Having come in and been diagnosed with CMV I was put onto an antibiotic called ganciclovir (gan-SIGH-clo-veer). This is doing the job and has brought the number of CMV cells in my blood down from 200,000 to 180,000, which is apparently good and would be enough to send me home with oral antibiotics. But while in I have been found to have low sodium levels in my blood. Following saline drips and a cap on my water intake of 2.5 litres a day, this didn't change so levels of hormones in my blood were investigated by the endocrine department and low and behold I was found to have low cortisol levels, which can result in low sodium levels. And this is also part of the reason I have been so tired: cortisol is released by the adrenaline glands, situated on top of the kidneys, mostly in the morning to get you up then the levels slowly decrease  through the day and are lowest at night.

The theory is that I have had quite a lot of steroids over the last 18 months and therefore my body has almost lost the ability to know when to release it's own. So I am now on hydrocortisone tablets (a low dose) to compensate. But they want to see if my sodium levels come back up to normal.

Also the ganciclovir has caused all of my blood counts to plummet, which is quite common, but it has made me neutropenic! So I have had to have injections to try and boost my white blood count, and obviously I won't be allowed home until I am no longer neutropenic, so we are waiting for those to recover. If they don't then I will have to go onto a different antibiotic, including one that has to be breathed in as a vapour on a special machine.

AND, because I have continued to get headaches they want to do an MRI scan of my head, but they seem a little concerned about the metal work in my neck. It does make you think what might happen if I was put into a really strong magnetic field with two massive titanium rods in my neck! Could be a little uncomfortable.

So it's all waiting at the moment.

I am happy that my rash has now gone, the skin is quite dry and itchy in it's place so I am back on the paraffin lotion which has helped no end but means I spend most of the morning and post shower in the evening looking like a greased up nutter waiting for a bare fist fight. Although this is getting better as my hair is coming back! A small smattering on my head and the magicians moustache and triangular beard. I feel like it has taken longer to start to recover this time, but I hope it is as quick as it was last time now it's started where it seemed to go from nothing to everything in a very short amount of time. It's so good to see it though, like an old friend.