T + 379 I'm not an addict.....

Posted by raetsel at Wednesday, September 30, 2009

.....I can give up any time I like" as the old government anti-drugs campaign used to say.


I've had another bad week with fatigue and nausea to the point that for large parts of the day I've been hors de combat and certainly not up to logging on to work. I was due to go to the transplant clinic next week but called yesterday to get the appointment brought forward.

I saw one of the registrars who was very nice and she confirmed my suspicions that the cause of my problems is mostly likely steroid withdrawal. Unfortunately at this stage the only treatment is to go back to a higher dose of steroids to get the corticosteroids flowing again as my adrenal glands have decided to take a holiday as they think they are no longer needed.

This is a bit frustrating as this current tapering regime seemed to be working well and I have only had one small outbreak of my GVHD rash that a couple of days of topical betnovate cream sorted.

The doctor said that it is possible to become dependent upon steroids and then the tapering and withdrawal has to be done even more carefully. In really bad cases the dependency has to be treated by an endocrinologist who uses cortisone and other drugs to aid the weening process.

Hopefully it won't come to that.

I'm currently on 2.5mg every day of prednisone but will now increase that back to 2.5mg one day and 5mg the next. If I improve on that then the aim is to taper even slower and go to 2.5mg for two days then 5mg and so on , going longer and longer between 5mg . It's going to take a while to get off them at that rate but it maybe the only way.

I'm due back at clinic next week to see how I am getting on but in the meantime I've been signed off work for two weeks whilst I try and adjust.

T + 372 Deja Vu

Posted by raetsel at Wednesday, September 23, 2009

Since my last post celebrating one year of transplant I have certainly had a deja vu feeling, or déjà vu if you want to be posh.


I've been feeling unwell since last Wednesday 16th September evening and today is the first day I have felt well enough to log on to work, though I'm still not 100%

I'm fairly sure it is mostly steroid withdrawal related, I just get these waves of total fatigue come over me. Unfortunately when it came over me on Wednesday I was in the middle of cooking a lasagne for my tea using a new recipe. I'm not quite sure how I managed to get through it to be honest though as soon as it didn't need any attention from me I had a lie down while it finished cooking. The result was passable and I did find eating a portion perked me up a bit so I wonder if it is blood sugar related? I'll ask the doc about this when I go to the clinic next.

The following morning I realised I had left out the wine and only used half the amount of cheese sauce I should have in the lasagne so I was clearly not focussing well. Even so it was passable and I look forward to trying it again when I am "compos mentis".

From the Wednesday onwards I have suffered from nausea in the mornings and bouts of fatigue coming over me that have made doing anything but sitting or lying down really difficult.

On Friday I had a bit of a scare with my temperature going up to 37.8 ( 38 is the magic number when I have to ring the hospital ). I had a two hour nap and my temperature had come down but I went on to sleep another 12 hours.

I might have had an infection starting but it looks like even my puny immune system could fend it off. Maybe the virus or whatever infectious agent it was , wasn't having a good day either.

The problem since has been working out how much I can manage and not doing too much but the tipping point into lethargy seems to be quite sudden. On Monday afternoon I helped Gareth in the garden a bit and then came in to do the washing up and that was too much for me and I had to stop half-way through.

The trick is stopping before I do too much which, if you will allow me a digression, reminds me of a customer I had when I worked for a CAD company.

The client had just done a health survey interview for all staff and my contact, a hard drinking Northern Irish man was asked about his drinking. "I drink until I've had enough" he said. "And how do you know when you have had enough?" asked the interviewer. "That's easy", came the reply, "When you fall off your stool, have two more, then stop."

So aside from feeling rough like I did a year ago I also noticed one other little coincidence that has been replicated from a year ago. Channel Four showed the three Lord of the Rings films on successive Saturdays. I remember this helped me through a couple of evenings when I was on the Bone Marrow Transplant unit. So seeing the trailers for it again on the same weekends this year brought it all back to me. Spooky. (I really should get round to finishing reading the books, but that is another story [pun intended]).

However I'm fairly sure I'm not in a time warp or ground hog day situation, which is just as well as I am really looking forward to getting back to the good progress I was making before the last two little hiccoughs I've had.



T + 365 Now We are One

Posted by raetsel at Wednesday, September 16, 2009

My immune system is now one year old. It depends exactly on how you count it but I received by donor's cells on Tuesday 16th September 2008.


I was in the office so I bought cakes and cookies for people to celebrate and when I got home Gareth had got me a birthday card with a "1" on it and cooked me a celebratory meal for dinner ( with a little help from M&S).

The year has flown by in many respects and I was reading back over some of my posts at the time. It bought a lot of memories back. Can't say they are exactly happy ones as I was quite ill for most of the month of September but it is something to be able to say "I got through that".

Unfortunately my body has decided to join in the nostalgia by making me feel like crap, especially in the mornings. I haven't quite pinned down what is causing it and yesterday I was pretty good and able to go into the office but today I woke with the collywobbles and feeling nauseous and lacking in energy and this happened last Friday as well. Maybe it is related to dropping the steroid dose.

I've shuffled some of my meds round to help with the nausea and now take my itraconazole liquid on its own in the morning and sit up in bed very still for 30 mins after taking it. That seems to help.

I can cope and I do start to feel better as the day wears on it's just rather frustrating particularly as it is so inconsistent. Monday I helped a Andy move house and that was fine as well, then today I am laid low ( though have still managed to work a full day logged on to work from home). At least I don't have a temperature or any rash so it's unlikely to be an infection or GVHD issue.

On a completely unrelated topic during my recent infection and recovery I stopped shaving and so had quite the full beard by this weekend. Well the Devil makes work for idle beard trimmers so on Sunday I experimented with a new look:- (Click to embiggen, actually you can't for some reason blogger has gone wonky try the links here and here)



Mom was not impressed when I turned up for Sunday lunch even though I had lost the cravat by then.

Since then I have trimmed off the side burns and just have the long droopy moustache but I've started growing my usual goatee back. Though I might go for some of the other options exhibited in John Dyers blog. "The Quest for Every Beard Type"









The garden has also had a make over. It's gone from a meadow to this:-









And today the transformation was completed by Greenway Garden Services:-

They did the levelling, paving and gravelling (sic) and put the spare soil into the beds that Gareth built all in five hours.

It's not been exactly cheap but it's been easier to earn money typing at a keyboard to pay for it than trying to do it ourselves.

I think it will work out at about £2.30 a potato until 2017 but after that I'm in the paydirt :o)

I need to see if there are any late crops I can plant now . Answers on a postcard please. Or email. Or a comment below.

Here's to the next year! Wonder how things will be when I look back to today.....

T + 360 Back to "Normal"

Posted by raetsel at Friday, September 11, 2009

On Wednesday I went to the transplant clinic and got some good news as my blood counts and my neutrophils in particular had returned to their "normal" levels. Normal for me is not quite normal for anyone else as I am still on steroids and ciclosporin both of which suppress the immune system white cells.


We are going to have yet another go at reducing my steroid dose but this time I have some new 2.5mg tablets as well as my usual 5mg. I will try 5mg one day and 2.5 the next for two weeks and then 2.5mg every day for the following two weeks before I go back to the clinic in a total of four weeks' time.

The visit didn't get off to a great start as after the phlebotomist had taken my blood, rather than taping a ball of cotton wool over the puncture mark she used some type of gauze packing. I thought nothing of it but as I walked out the room I was met with rather shocked faces from a couple of the other patients in the waiting room. I looked down and saw the blood was running down from the crease of my arm. It was one of those things that looked more impressive than it was but I scuttled back inside the treatment room to get it sorted.

More gauze, pressure and tape was applied and the red tide was stemmed. I asked had they run out of cotton wool and was told they are not allowed to use it anymore "something to do with the fibres" was the response from the nurse, with appropriate sighing and eye-rolling. It does seem faintly ridiculous. How many years have people been using cotton wool? I've had getting on for a hundred sets of blood samples from my arms and never had any leaks. First time with the new gauze and that is the result.

However let me move on before I start blaming health and safety or saying it is political correctness gone mad.

That Wednesday was the 9th September and I was admitted to the Bone Marrow Transplant (BMT) unit on the 8th September 2008 with the actual transplant taking place on the 15th. So to celebrate that fact and to say thank you for the amazing care I had had I bought a few boxes of chocolates for the different wards, doctors and clinics that have looked after me.

I was quite the Easter bunny visiting the BMT, Ward East 3a where I had all my prep chemo and the Day Unit where I have been for my transfusions. The staff were really appreciative and it was nice to be able to do something nice for them even if it was just a token.

T + 350 Here I Go Again.... (PG)

Posted by raetsel at Tuesday, September 01, 2009

though unlike the lyrics to the song by Whitesnake I'm not "on my own".


Rated PG for vomit.

Since my last visit to the transplant clinic ( and blog as it happens ) things have been rather up and down. It took me until the following Wednesday to feel well enough to return to logging on to work.

I took my first GCSF injection on that first Wednesday evening with some trepidation but it all seemed to go ok and I certainly didn't have any immediate reactions like I did last time.

The problems this time have come the next morning instead. Both last Thursday and Sunday, the day after my evening GCSF injections I have felt quite nauseous and on Sunday I was sick just after taking my morning Itraconazole and Penicillin. ( I take these first thing as they need to be on an empty stomach and an hour before food ). I guess it was good that I hadn't had my breakfast before I was sick.

I was wiped out for most of the day and took some anti-sickness tablets to help me out for the rest of the day. With all the other things going on with fighting off the infection etc. I hadn't totally associated the problem with the injections but looking back over my little treatment journal ( where I record what meds I take each day and anything else of significance ) I can see the link.

Forewarned is forearmed as they say, so I will know to take anti-sickness before I take my evening injection and another one first thing upon waking. The problem is they take about 1 hour to start working so it means all my other meds are delayed and I have to hope I keep everything down long enough for them to take effect.

Only two more injections to go, hopefully, and my counts will have recovered enough for me to stop them when I go to the clinic on 9th September.

These last three weeks or so have been quite difficult to deal with and I have been feeling quite down at times. It has been an unfortunate combination of events, GVHD coming back, getting an infection, being in hospital, tamiflu and GCSF making me sick all contributing to the situation.

Things had been going very much in the right direction with being able to go the office, the occasional trip to cinema or meal out and getting my steroid dose down to almost nothing. All that has gone by the wayside now and it does feel like a real step back.

It's almost a year since my transplant and though in someways I have come a long way in others I'm still where I was a few months ago. I.e. on steroids and ciclosporin with a reduced immune system and all that means. I've also had more days when I have felt really rough especially with the nausea and vomiting which have been particularly debilitating. Having gone through all my other treatment relatively easily without feeling bad you'd think I'd be in the clear for that by now, but apparently not.

Add in a bit of change and uncertainty at work to the mix and the whole thing has been a bit of a buzz kill, to coin a phrase.

However I must try to look on the positive side. This time last year I was about to go in for my transplant and struggling with a cold and conjunctivitis. That and the ordeal of the transplant itself are all behind me.

Gareth has been tremendous coping with both my moping about and my inability to help with the housework. He even found a Service Bell application on my iPhone so I could summon him when I have been bed ridden.

Mom and Dad have also been supportive but unfortunately the last couple of weeks my Dad has had a cold and now my Mom has it so I've only been able to talk to them on the phone.

It's not often that I feel as low as I have done at points over the last few days and even rarer that I discuss it on my blog but it can't all be sunshine and lollipops. A trouble shared is a trouble halved as they say ( or is that misery loves company? ).