T + 194 Twelve Months Ago

Posted by raetsel at Saturday, March 28, 2009

As well as it being six months since my transplant it is almost exactly  a year since I started my first batch of chemo under the HyperCVAD protocol that marked the start of my treatment for Lymphoma.

That does seem a long time ago. ( Not that I want to harp on about it but it means that apart from two weeks last August, when I had a break before the transplant, I've been in hospital or at home and under an immuno-suppressed "regime" for twelve months).

I had a visit from my friend Andy yesterday and then he and Gareth went off to see Watchmen. Since it was such a long film and didn't finish until getting on for 23:30 Andy stopped the night and was the first guest to use the futon.

It was great to catch up with him in person last night and this morning over a breakfast of coffee and croissants.

Today Gareth has been baking again and at my request made some very nice biscotti. I helped in the final stages of baking, cutting, cooling and baking again. The outline of the recipe he followed is one I found here on the cooking for engineers site, though we had a couple of variations in the ingredients, lemon and oats not orange and almonds, and a variation in the sequence for the method due to a misunderstanding of the instructions. The results though are excellent.

For dinner this evening I am planning on cooking a vegetable biryani with all the lovely veg we have from our veg box. Then we will settle down to watch the Futurama Movie on DVD

T + 193 Six Months On

Posted by raetsel at Friday, March 27, 2009

As you can see by the title of this post I'm one hundred and ninety-three days post transplant or a little over six months.

Overall my recovery has gone very well with only a couple of minor infections ( colds and sinuses ) and a few blood transfusions. There's just been this annoying GVHD skin rash that has delayed everything by the need to treat it with steroids.

Back at the start of my treatment the docs said it would be six to nine months before I would be able to start leading a normal life, maybe a year. Of course at the time I only heard the "six months" and up until Christmas everything was looking on track for that.

I've come a long way from how dreadful I felt when I was in hospital in September and when I was first out of hospital so I shouldn't really complain now about having to stay mostly in the flat.

I shouldn't really complain......but human nature being what it is, well this particular human's nature at least, I can't help but voice my frustration at not being able to engage in social activities and see more of my friends. 

What's worse for me now is the uncertain nature of when the GVHD will be sorted and I can start tapering off the anti-rejection drug, ciclosporin and look at getting back into a normal life, or something approaching normal at any rate. 

I've given up making plans at the moment. Gareth got us tickets to see Anthony and The Johnsons at Symphony Hall at the end of May. When he booked the tickets in February it seemed that by the end of May going out to concerts would be no problem. Now it's looking like a damn close run thing ( to apparently misquote the Duke of Wellington ) though I'm still hopeful of going. Even if that might be the "triumph of hope over experience" . 

Come the time I might see if I can get special dispensation to go off the Doc even if I am still not fully immune recovered, after all this is not the mosh pit at the Carling Academy, you get a better class of infection at Symphony Hall.

Any plans we might have had for a little trip away in the country in the Summer are just vague ideas at the moment as I don't feel able to make any sort of commitment. It's a similar situation with getting back in the office, though thanks to the wonders of modern technology I can do all my work just as easily from home.

What do the next six months have in store? Well if things go well , I will finally get this GVHD sorted and taper off the anti-rejection drugs. At around the end of those six months I'll have my vaccinations again for polio, TB, typhus etc.( plus MMR probably as they didn't have that in my day and I was quite ill as a child with measles). 

My immune system will still be considered "naive" for some time beyond that and I will be at risk of developing shingles for up to five years. ( About 30% of transplant patients who have an unrelated donor develop shingles and it can be quite serious ). 

I'll be taking penicillin as a precaution for the rest of my life, though at two tablets a day that is hardly a burden.

If the foregoing sounds overly negative it's not meant to be. I have a lot to be thankful for but for the benefit of anyone who reads this blog who is going or about to go through the same process I think it is important to be as honest as possible about it and how it affects me.

T + 188 Hackery, Bakery, Accident and Emergency

Posted by raetsel at Monday, March 23, 2009

Quite an eventful weekend by my standards these days.

My energy levels have been improving over the days. On Saturday the creative muse struck me and I wrote the first draft of a 3600 word short story ( one sense of hackery ). It needs to be revised and edited but when I am happy with it I will prolly stick it up on a site like ABC Tales like my friend Andy has done. Then you can chose to read or ignore at your leisure.

Writing this was a good measure of my general energy as , with breaks, I worked on it for about six hours starting Saturday afternoon and didn't feel too bad.

Indeed I have logged on and done a full day's work today and been quite busy. Feeling a bit tired now but not too bad.

On Sunday Gareth did some bakery as is his wont these days and I did some hackery ( in the other sense ) trying to create a Mac OS X DVD so Gareth can install it on his EEE PC and make it a hackintosh. Sadly it wasn't successful :o(

The Accident and Emergency bit relates to my Mom who dropped the metal pipe of the vacuum cleaner on her foot and cut it quite badly. As she takes warfarin to thin her blood it wouldn't stop bleeding so Dad took her to A&E and got it stuck back together with steristrips. I would like to have gone with them for moral support but sitting in an A&E waiting room full of sick people is not the best place for me.

Thanks to all the readers on Facebook and Twitter who asked how she is doing today. Both Mom and vacuum cleaner are doing well.

A memorable Mothers' Day for my Mom and as the hospital receptionist said what was she doing vacuuming on Mothers' day?

Oh and finally back to my apostrophe obsession. Surely it is Mothers' Day as in the day of all Mothers and not Mother's Day a day of just one Mother which is what the cards seem to have on them?

T + 183 Wot no blood?

Posted by raetsel at Wednesday, March 18, 2009

I got my Dad to take me to the clinic today as he can use his blue badge to park closer to the clinic and save me the walk from the main car park which would have been a bit of a struggle for me at the moment.

My haemoglobin (Hb) reading was 10.4 only down 0.1 from last week and that can be due to normal variations. This was a bit of a surprise to me given how I have been feeling, it had all the hallmarks of low Hb.

The doctor said the most likely explanation of my exhaustion was a symptom of steroid withdrawal. Prednisolone mimics the effects in the body of the naturally produced cortico-steroids that are released by the adrenal glands. In her words "this is responsible for getting you out of bed in the morning". 

With high levels of steroids in my blood from the tablets my adrenal glands have had little to do for the last month or so. As a result when one reduces the dose of steroids the adrenal glands can be slow or fail to kick back into life and produce the "get out of bed" effect. 

As a consequence and also as I have had a slight recurrence of the GVHD rash on my neck, the doctor has increased my steroids from 5mg to 15mg per day for a week and then a week of alternating 15 and 10mg.

On the subject of my rash, the betnovate cream has worked well in reducing that to almost nothing. The doctor described it as "an anticlimax" when she examined me. I presume that was in relation to the rash and not my general physical appearance. :o)

The doc did however use the "C" word in relation to my GVHD ( no not that "C" word, "C" for Chronic ). Although it is mild and responds to steroids it can be quite persistent and can sometimes take months before it is properly under control. I kind of expected that I had chronic GVHD because of when I started to get it ( around 100 days post transplant is considered chronic, before that is considered acute ) and how it has been recurring.

The chronic diagnosis is not great news as it means more time on steroids and that means more time with a suppressed immune system which means we can't start to reduce my ciclosporin yet and that all delays my re-introduction back into civilised society. It's all rather frustrating, to say the least.

On a brighter note my next clinic appointment is two weeks not one week and if things are improving when I next visit there is talk of switching to once every three weeks.

T + 181 Go Slow

Posted by raetsel at Monday, March 16, 2009

Well the weekend was of necessity a slow one. My sinuses and cold were still playing up though improving but also I think my haemoglobin has "crashed" as coming up the stairs creased me for the next hour or so. If you've ever exercised to the point where you feel like you are going to be sick that's how I feel at the moment after the lightest of exertion.

To cap it all it looks like my Graft Vs Host Disease is coming back. I can see the tell-tale red pin-prick rash round my neck. I'm still on steroids but only 5mg ( down from 100mg about 4 weeks ag0 ). I used some betnovate steroid cream on it and hope that will stop it before it spreads too far.

Suffice it to say I didn't log on to work this morning and probably won't tomorrow either. Wednesday is the transplant clinic as usual and I will be able to discuss all these ailments and see where we go from there.

On a lighter note, in the post today I received my RinkyDinks CD. The RinkyDinks are a self-styled Ukulele supergroup and do covers of modern pop songs ( and standards ) . They are very good. Check out the video below of a Kaiser Chiefs cover and go visit their MySpace page.

T + 178 Thursday & Friday Off Instead

Posted by raetsel at Friday, March 13, 2009

I started work yesterday as normal but felt worse and worse and the morning wore on. My sinusitis seemed to be spreading into a full cold and what was making it hard to work was that I started to feel really, really tired.

Therefore, somewhat reluctantly, I decided I would take Thursday and Friday off sick to be able to rest and hopefully recuperate. It's another two days without pay  ( apart from the £20 SSP ) but that can't be helped.

I had a lie down mid-morning but did not actually nap. I then moved all my stuff back to the flat as the bathroom was complete ( and looks good ) . In the afternoon I had a good two hour nap and didn't feel too bad in the evening. It was nice to be back in the flat with Gareth.

I had a reasonable night though was awake from 03:00 to 05:00 as has happened a few times recently and is possibly related to the steroids. I've managed some washing up and hanging some washing on the clothes' horse but I'm feeling very tired again and think an afternoon nap is again called for.

T + 176 So Much for a Wednesday Off

Posted by raetsel at Wednesday, March 11, 2009

Well my sinuses didn't improve and so I rang the Bone Marrow Transplant Ward and explained I thought I had a sinus infection. They asked me to come up to the normal Wednesday transplant clinic and they would fit me in.

I got there about 10:45 and was impressed that my notes had made it down to the clinic already. I had quite a wait but then I expected that as I didn't have an appointment. However I settled in to finish reading The Farthest Shore the third book of the Earthsea series by Ursula K LeGuin and literally as I was reading the very last paragraph I was called through to see one of the consultants. I was tempted to ask him to hang on a minute but thought better of it.

I explained the situation to him and he confirmed it was almost certainly a bacterial infection however just in case it was a viral infection he asked me to do an NPA or snot in a pot to check for viruses. Then he prescribed some Augmentin antibiotics for me and said to come back in a week, which is what I was due to do anyway.

T + 175 Sinuses (PG)

Posted by raetsel at Tuesday, March 10, 2009

Rated PG for mucus.

I spent Saturday night back at the flat having moved out for the previous week to Mom and Dad's whilst the bathroom was being done.

I didn't sleep well and on Sunday had a bad headache and my sinuses were blocked. I think all the dust from the building work upset them. I moved back to Mom and Dad's on Sunday but my sinuses haven't cleared properly.

I have a slightly tender right cheek, my mouth feels like my teeth don't fit properly on that side and I am producing some green sticky mucus from the right nostril when I blow my nose.

I can't take my usual sudafed as it interacts with my amlodipine blood pressure tablets. Paracetamol are helping with the pain but I think I might have a sinus infection. Green as opposed to clear mucus is often a sign of infection.

If things haven't improved by tomorrow I will ring the hospital and I may need to go up to get some more antibiotics. Just when I was hoping to have a week off from the hospital too.

The bathroom should be finished tomorrow and then Gareth is going clean the flat before I return on Thursday.

T + 169 FP92A

Posted by raetsel at Wednesday, March 04, 2009

I had a fairly straightforward visit to the transplant clinic this morning.

The journey was easier from Mom and Dad's as well so I was there in plenty of time. I saw a new registrar I haven't seen before and he was very good. He listened to my chest and did a general exam of neck , armpits and abdomen where lymph nodes lurk.

We revised my steroid tapering regime slightly so from tomorrow I'll go 4 days on 20mg, then 4 days on 10mg then 4 on 5mg. My next appointment is in two week's time now so I get a week off next week which will be nice. After that it will probably have to go back to weekly as we try to manage coming off the steroids and itraconazole without triggering the GVHD.

After seeing the doc I had my usual wait for pharmacy to dispense a top up of the drugs I'm running low on.

Speaking of pharmacy, FP92A is the form you need to fill in and get your doctor to sign to qualify for the new prescription charge exemption for cancer patients that starts from the 1st of April this year.

I was able to get a form from my GP and then get my consultant to sign it at the hospital as amazingly the hospital pharmacy hasn't been able to get any info from the Department of Health about when they will get the forms.

I sent my form off about 2 weeks ago and a few days ago I received by exemption card in the post. It's valid from 1st April 2009 to 1st April 2014 when it will be reviewed. Until then no more prescription charges for me.

T + 167 Peripatetic

Posted by raetsel at Monday, March 02, 2009

I had a nice relaxing weekend and watched couple of interesting and very different films. "The Waiting Room" a sort of modern take on "Brief Encounter" and "Pan's Labyrinth" a fantasy "horror" film set against the background of the Spanish Civil War.

This morning the builders arrived to refit the bathroom so this week I will be working from Mom and Dad's and indeed for most of the week lodging here as well.

This morning I had an actual commute to work. Having let the builders in and shown them where the kettle was I had 10 minute drive over to Mom and Dad's.

I'm working in their spare room on the work laptop and I have to say I am missing being on my mac Mini. What's worse I can't even run my laptop with Linux as it has some issues with the connection to work so I'm forced to use Windows XP. Still I suppose it will just make me appreciate Mini all the more when I get back home.