MCL and Me

Here we are in that strange twilight time between and betwixt Christmas and New Year, otherwise known as Twixtmas, well it is by me at any rate. I had a very nice Christmas, got some great presents and ate some delicious food. The turkey sandwiches ran out yesterday. My condition only affected a couple of areas of the usual Christmas traditions. My Aunt couldn't come up to Mom and Dad's on Christmas day as she was getting over a dreadful case of the flu though in fact I think even if I wasn't there with my suppressed immune system getting in  the way she would have been too poorly to come up. For similar reasons I was not able to visit my brother and sister-in-Law and my niece and nephew as my brother and niece both had coughs. This was a bit of a disappointment as I couldn't get to see the kids faces when they opened their presents but mom and dad took the presents over in the afternoon. Not going round to my brother's in the morning did mean, however, that I could...

Today I went to the day unit to have three units of red cells. These were my 16th through 18th units of blood since May, so once again thanks to all you people who do the relatively simple but life saving/changing thing of donating blood. The transfusion was fairly routine and I was all finished by 14:30. The only real thing to note is that, as was expected at some point round about now, I have changed blood group to that of my donor. I am no longer O+ but A+. As it happens I was given red cells that were O- as that is a universal donor type that anyone can have and I guess they save the A+ for people whose circumstances really need an exact match. ( Though quite what they would be for red cells I don't know, that's why I'm not a haematologist I guess. ) It is quite amazing to think that I know have a different blood group to what I had before September of this year. I'm sure there must be some convoluted CSI style detective story that could be woven around this phenome...

Not much to report on the medical front I'm pleased to say. My face and neck are still very dry and very itchy but moisturising twice a day and going to bed smeared in Savlon seems to help. Christmas Family Traditions I always look forward to Christmas and  this year has a few extra bonuses like the fact I can eat the turkey for the first time in six years since becoming a meat eater again earlier in the year.  Every family has its own way of celebrating Christmas and its own traditions and I thought it might be fun to say a little about what they are in our family for you to compare and contrast. Some might be similar but I suspect one or two will be very much a Stanford family tradition. As might be expected a lot of them revolve around food. Let's start with the turkey. He will always be referred to as Cyril and if frozen then during the time he is  defrosting in the back bedroom he will be "having a lie down before his big day". At some point during preparing the ...

Our top story today: The result of my CT Scan from Monday was all clear. That was what I found out today at the transplant clinic. The wording on the radiographer's report was No Evidence of Residual Disease . So I am a NERD. This is really good news and shows that so far the treatment is working well and an excellent early Christmas present. It's too early in the day to start using the "C" word ( "C" for Cure, in case you were thinking of something else ) That is not something to start bandying about until two or three years down the line and one way to look at it is you can't say with total confidence that you are really cured until you die of something else. Or is that just my perverse way of looking at things? In other news, my haemoglobin was 8.8 so has come down quite a bit in the last two weeks and well under the 10.0 cut off for transfusion so I am booked in for a transfusion of three units of blood on Tuesday 23rd December. This should mean I ...

Yesterday I went to Selly Oak hospital for my three month post-transplant CT scan. It was fairly routine apart from when it came for the automated pump to inject the contrast dye into the cannula they had put in my arm. The cannula was in the crook of my arm and I have to keep my arms above my head whilst I lie on the trolley. The pump felt some resistance and, quite rightly, does not force the dye in so they had to come and reset the pump, fiddle with the cannula and do that part of the scan again. Only about a ten minute delay for all that though. Tomorrow is the transplant clinic but whether the scan results will be available for then I'm not sure. I suspect it's unlikely but you never know. Meet Mini My desktop computer, Camilla, had another hard disk problem last Friday and wouldn't boot. I'd had one hard disk replaced about 6 months or so ago and that took the firm about three weeks to sort out. I think there maybe a design fault relating to the air flow in the ...

The usual quiet weekend with lunch in a couple of hours at Mom and Dad's when I also have to remember to take my oral contrast drink in preparation for my CT scan tomorrow. Although I'm usually fine when I have these scans Dad's going to take me just in case I don't feel well enough to drive home afterwards for some reason. But now on the real important news of the weekend the "shock" result in the Strictly Come Dancing semi-final. For those of you who don't follow the show at the end of the judges voting the scores were as follows:- Rachel & Vincent 3 Points Lisa & Brendan 3 Points Tom & Camilla 1 Point The result of the tie in the judges scores for Rachel/Vincent and Lisa/Brendan ( both got 75 ) meant they both got the maximum 3 points. The phone lines opened for the people to vote and then at some point the BBC realised they had a dilemma. Despite being encouraged to vote for the couple they wanted to save from the dance off it was in fact ...

Well yesterday was the first Wednesday since leaving hospital on the 6th October that I haven't been to the transplant clinic. I have to say that in this weather I did not miss going out at all. I did however have two lots of visitors. My Mom and Dad popped round after lunch for a cup of tea and to see our decorations in the flesh and late afternoon my friend Andy dropped in for a coffee on his way home from work. It was very nice to see them all. I finished my flucloxacillin antibiotics yesterday which were to try and help with my folliculitis but I have to say that even this second week on the tablets hasn't made much improvement. The spots on top of my head have cleared quite a bit but I have new ones on the back of my head and down the side of my neck. It's not a major problem though they do itch like very devil at times. I'm trying to alleviate the effects by the use of a variety of ointments and unguents including sudocrem, savlon and a good moisturiser and it ...

Click on the highlighted links for more information Betnovate : A topical steroid cream used to treat a variety of skin conditions including Graft Vs Host Disease (GVHD see below) Blood Counts : in a healthy human male the normal number of each type of blood cells is as follows Haemoglobin (Hb) 13 to 18 grams per 100ml of blood White blood cells 4 to 11 x 10^9/l (4,000 to 11,000 per cubic millimeter of blood) Neutrophils 2.0 to 7.5 x 10^9/l (2,000 to 7,500 per cubic millimeter of blood) Lymphocytes 4 to 11 x 10^9/l (4,000 to 11,000 per cubic millimeter of blood) Platelets (thrombocytes) 150 to 440 x 10^9/l (150,000 to 440,000 per cubic millimeter of blood) Ciclosporin : An anti-rejection drug that supresses my immune system so the white blood cells from the donor stem cells don't start attacking the tissues of my body. ( See GVHD ) Clean Diet: A diet that avoids foods that could have bacteria and other p...

Yes over the last week or so my hair has started growing back. First it was my beard and now it is the hair on my head. It seems to be quite slow growing compared to what it used to do but it is early days and the coverage appears as good as it was before treatment. As for the colour, well that is an odd mix of being much more very dark brown/black than it was and a lot more white hairs as well especially in my beard. ( I'm growing my habitual goatee, well technically a Van Dyke since the beard is connected to the moustache. For a look at many beard types and their names check out the excellent John Dyer's Blog .) I'd like to think that the white hairs are just from juvenile hair follicles that haven't attained a pigment yet but I suspect I am deluding myself. Still at least the ginger that used to be common in my beard when it grew for any length of time seems not to be returning so far. The hair on my head is very soft and fine at the moment but then, to steal from Ke...

Having put up the virtual decorations now we have put up the real ones as well, as you can see from this video........

No not quite the Golden Sho t but yesterday I had a message on my answering machine from the hospital asking me to reduce one of my doses of ciclosporin from 175mg to 150mg. This will be because the level of the drug in my blood is a bit higher than they would like. So that is one less tablet to take in the morning. I'm not sure what caused this little fluctuation but it is not the first time I have had a little tweak like this up or down a bit. Since I wasn't hooked up to a couple of bags of blood yesterday I took the opportunity to visit my friend Andy for the afternoon and a very nice time it was indeed catching up all the latest from our respective spheres of influence and generally putting the world to rights. It was very nice to get out of the flat. In the Nick of Time Following on from my recent post about telling the time, by a remarkable piece of serendipity this week's Horizon programme was all about Time. Presented by Professor Brian Cox a CERN physicist and...

I went to the transplant clinic this morning and saw one of the registrars rather than the consultant. I don't have a problem with that as I have always got on well with this particular registrar. The headline news is that my haemoglobin was 10.3 so the same as last week and since it has been stable for two weeks and is above the magic 10 number, the registrar recommended we cancelled the transfusion for tomorrow and I agreed as this had been the plan agreed with the consultant last week. We also agreed to do another week on flucloxacillin to try to help with the folliculitis ( note I can spell it properly now ) . Aside from that things were pretty routine, my neutrophils are 1.7 so a little down from last week but these can fluctuate. Still well above the 1.0 level which is a trigger for the evil GCSF . Finally, as agreed last week I've now got a clinic appointment for two weeks time and hopefully will be able to stay on fortnightly visits if all remains stable. I just hope ...

My latest antibiotic has been causing me a few stomach upsets especially the one I take first thing in the morning. I have to take it an hour before food, just like my penicillin tablet, but I found that for next twenty minutes or so I would have an upset stomach and slight feelings of nausea. The morning is when I take the greatest variety of my pills: penicllin, ciclosporin, acciclovir, magnesium oxide, amlodipine and if it is a Monday, Wednesday or Friday I also take Septrin all as well as the new antibiotic flucloxacillin. I've tended to take them all in one go when I wake so I have an hour to get up and showered before I can have my breakfast. It's only the penicillin and flucloxacillin that have to be taken before food so I decided to reduce the potential for drug interaction on an empty stomach and I have started just taking the two antibiotics and my blood pressure tablet amlodipine on waking and I have the other tablets with my breakfast. This has helped a lot and red...