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...

Thursday morning I came to use my desktop computer ( Camilla ) and the monitor display was very dim and then started cutting out altogether. I tried my laptot on the monitor with the same result so that confirmed it was the monitor that had died. I'd had it about two and a half years and it does get used everyday so that's not too bad I suppose. Although it was an expense I could do without I now have a nice 19" widescreen monitor and this one has a three year warranty.

It was the transplant clinic today and even though I had an early appointment ( 08:45 ) the clinic was eerily quiet. It turns out the M6 was closed and so a lot people who come that way would have been delayed. It was a productive visit with quite a bit going on. First the counts, my white cells and neutrophils have fallen a bit but are still within the normal ranges for this stage so they were obviously boosted a bit last week by the remnants of the evil GCSF. My haemoglobin was down to 10.3 from over 11 last week so my last blood transfusion has taken a bit of a beating. It might stabilise at this level but just in case the doc has booked me in provisionally for another transfusion next Thursday, 4th December. He will review my level next week and decide if I need to actually have the transfusion or not. If the haemoglobin drops below 10 then I will have the transfusion. I discussed my swollen ankles and the doc confirmed its due to the amlodipine blood pressure tablet causing water...

The usual sort of quiet weekend apart from I couldn't go round to Mom and Dad's for Sunday lunch because Dad's cold is still with him. One thing I have been doing is taking opportunities to put my feet up, not metaphorically but physically to help with the swollen ankles. It does seem to help to have my feet up either on the coffee table or on the sofa when I am at my most sedentary i.e. watching TV. Correspondence on the Subject of Apostrophes My cousin sent me the following piece of advice about the use of apostrophes from the 1894 edition of Enquire Within So things have clearly changed a bit since then, not quite so lazy and vulgar now to use apostrophes. The Cobbett that it refers to is A Grammar of the English Language by William Cobbet and you can read the whole 1832 edition online What is Enquire Within ? I imagine I hear you ask, well as you can see from the front cover below it was clearly the google of its day (click to embiggen) You can get a bit more info on ...

Well it's not quite a cankle but I have started to notice at the end of the day when I am getting ready for bed that my ankles have swollen a bit and my lower calves are quite hard and a bit tender. This fluid retention is almost definitely caused by the amlodipine blood pressure medicine I'm on to counteract the high blood pressure caused by the ciclosporin (which I'm on to prevent my donor cells attacking my body. All together now: "I know and old woman who swalloed a fly" ) The swelling is not particularly bad but it is noticeable and the tenderness is bearable quite easily so though I'll mention it to the doc when I go to the transplant clinic on Wednesday I don't think I'll need to change my medication. I think the problem is exacerbated by being very sedentary, especially in the evenings when I am watching a film and not moving my legs for a couple of hours. I might try keeping my legs elevated by resting them on the coffee table and see if t...

I'm just back from the transplant clinic and everything is steady as she goes. I got an early appointment this week, 08:45 , after last week's long delays. I've kept that time for next week as well. It means I have to get up early and battle a bit of traffic getting in to Birmingham but it also means I have more of the day to myself after the clinic and it's good practice for having to get up when I start working from home again and need to be at my computer for 08:00. As I say everything was fine at the clinic. My counts are doing well so I don't need any more GCSF at the moment. My white cells were 6.3 , my neutrophils were 4.4 and my haemoglobin was up to 11.3, after my transfusion last week. Whether the white cells and neutrophils were up because of the last few drops of GCSF or my bone marrow is kicking up a gear I'm not sure. I guess I'll see how they are doing next week. Whilst I'm fine everyone around me seems to be getting a cold ( and/or sore t...

I had the usual quiet weekend watching a couple of films back at the flat ( Starship Troopers and The Life Aquatic with Steve Zissou . Quite contrasting but both good fun in their own way) and popping to Mom and Dad's for lunch on Sunday. The only real "highlight" was receiving my payslip in the post from CEVA . ( We get paid of the 15th of the month in a two weeks in advance, two weeks in arrears arrangement. ) I've now used up all 60 of my full pay sick days and about to, as my Dad would say, go onto the "Treacle Stick" namely standard Statutory Sick Pay (SSP) of £75.40 a week. This latest payslip came in at about half my normal rate as I tipped over the 60 days. I don't quite follow how they have worked out the amount, but given I was expecting a lot less, far be it from me to question my elders and betters in the payroll department. I put it down to that two weeks in arrears, two in advance, it always confuses things like this. Next month I'm...

Yes after giving over a dozen tubes of blood on Wednesday, Thursday was my turn to get some back when I had my thirteenth through fifteenth units of blood since May this year. When you add them all up like that it's a bit scary really. Huge thanks to all you blood donors out there, as they say at the awards ceremonies, I couldn't have done it without you. It was a fairly routine session really. The only "entertaining" part is fitting the cannula as I no longer have access via a hickman line. One of the chemo drugs I had earlier in the year, Methotrexate, is notorious for ruining your veins as far a getting blood into or out of them is concerned. I used to have quite good veins but now when you look at my arms you can hardly see any. However the nurse managed to fit the cannula on the first attempt though she admitted she couldn't see the vein she was aiming for or really feel it either so it was a bit of a speculative shot. After that it was just a question of sit...

Well the transplant clinic was as bad as I'd feared as far as delays were concerned and the situation was exacerbated by the fact they were two doctors short. I arrived at 10:30 for my 10:45 appointment and was seen about 12:15, still I was well prepared so it wasn't a problem. What I was less prepared for was being stabbed three times for blood. I went in to the phlebotomists' room on arrival and had about 10 tubes of blood taken. The reason there are so many is because I am providing samples every two weeks for a study into Graft Versus Host Disease . I took my seat in the waiting room and then was called back in as the new phlebotomist hadn't done four other tubes that were needed so I got stabbed again. I then went in to see the consultant. My counts were pretty good, white cells up to 3, neutrophils up to 2.1 , haemoglobin is still dropping but my transfusion tomorrow will take care of that for a bit. As my neutrophils are well above 1.0 now I don't need any m...

Tomorrow I am at the transplant clinic but I couldn't get my usual appointment slot of 10:00, instead I have a later one of 10:45. Given that the time you actually get seen slips more the later you are because of how appointments overrun , I'm expecting quite a delay tomorrow. Add to this the fact I'll need drugs from the pharmacy which is another hour and I'm going to be at the hospital for quite a while tomorrow and again on Thursday when I am having three units of blood which will take about four or five hours. So to cope with this I'm getting prepared for things to keep me occupied. I haven't listened to any of my usual podcasts this week and will take them loaded up on my iPod. I'll have my book with me, The Algebraist by Iain M Banks and as I am getting down to the last 100 pages I'll probably take a slim volume of short stories and a magazine to give some variety and make sure I don't run out. Item one on the agenda with the doc tomorrow will...

Well I took my GCSF injection last night around 22:00 the same time as I did on Wednesday when I had no reactions at all. By 22:30 I was on the loo and feeling like I wanted to be sick as well, along with the feeling feint and cold sweats. The feelings eased after about 20 minutes or so and at least I could just go straight to bed. I slept fine and apart from feeling a bit tired today I have no "hangover" from the reaction. It's odd that on Wednesday it was ok in the evening but last night it wasn't. I wonder if it is some how food related either in terms of what I have eaten or how much and when. I'll see what the doc says on Wednesday at the transplant clinic and whether it's worth trying the alternative to GCSF. If push comes to shove I could just put up with the funny turns. They are not pleasant but half an hour once or twice a week isn't too bad I suppose.

Well no more funny turns after switching my GCSF injection to the evening on Wednesday. I'm due another one tonight and hopefully that will have the same lack of effect. I've been feeling a bit more tired these last few days and have had a few very light twinges of bone pain but nothing like it has been when I have been on higher doses of GCSF before. On Thursday lunchtime I had a little excursion. For the first time since August I went somewhere other than the hospital or my Mom and Dad's house. I made a visit to my good friend Andy . It was great to see him face to face ( he's had to keep away from visiting because one or other of his nearest and dearest has had a cold these last three weeks and whilst he himself has been fine he didn't want to risk being a carrier). I stayed for a couple of hours and we had lunch and a good old chat about subjects many and various. It was really nice to get out of the flat and somewhere different and I always have a enjoyable tim...

I went to the transplant clinic yesterday and told the consultant about my funny turns which seem to be triggered by the GCSF . He said he had heard of someone on the ward recently who had had a reaction to GCSF but as it was not one of his patients he didn't know exactly what the reaction was. He said he would ask the pharmacist for the details. He said he did know they switched the patient to an alternative drug and that was tolerated better so that could be an option for me if the funny turns persist. My neutrophil count was back up to 1.2 from the 0.8 it was last week so the GCSF had done it's job, however the doc felt to maintain that level I needed to continue with two GCSF injections this week as well. We agreed I'd try taking them at night rather than in the morning and see if that helps. Aside from that my haemoglobin continues to drop slowly so I am booked in for another transfusion for Thursday the 13th November. It will be three units so I'll be on the day ...

Well Saturday morning I was due another injection and as I sort of expected I had another funny turn. The sequence of events was the same: take usual pills, 30 mins later have GCSF injection, have breakfast, go to loo, have funny turn. The same symptoms, the cold sweat, feeling feint, fast heart and feeling sick. Except this time I did actually throw up. The feelings passed after 10 minutes as before and then I just needed a nap for a couple of hours. So it looks like the culprit is the GCSF injection in tandem with some of the drugs I'm taking or my new blood system. I was fine Sunday and today when I didn't have to have an injection. I've had all the injections I'm supposed to so far so hopefully my neutrophils will come back up and I won't need any more. I'm off to the day unit for usual bloods today and I will mention my funny turns to them to see if they have heard of it before. My energy levels are a bit lower than usual and this is probably due to my haem...

Has it really been four days since I posted a blog entry? Sorry about that, though I do have a good excuse for yesterday, more of which anon. On Wednesday I went to the transplant clinic. It was fairly routine but my neutrophils had dropped from 1.1 to 0.8 and 1.0 is seen as a cut off value. So the doctor prescribed some GCSF injections to help boost my counts. Only two injections one Thursday and one Saturday so hopefully the bone pain I often get with GCSF shouldn't bee too bad. It's perfectly normal for my neutrophils to fluctuate a bit, one of the drugs I take, septrin, depresses the count anyway and it's possible my body is just fighting a bit of an infection. Overall the doctor said my progress was fine and we had to remember this was only day 43 post transplant. My haemoglobin was 9.6 and the cut off area for a transfusion is around 10.0 so the doc said he would need to keep an eye on that. Well yesterday I had a bit of a funny turn. I was in the bathroom washing ...

I went to the day unit today to have my blood tests done as usual then had lunch at Mom and Dad's whilst trying to fix his wireless router that is apparently no longer wireless. (Amazon are shipping a replacement out now. ) I've been thinking a bit more about this blog and the sort of stuff I put in it, particularly as at the moment things are ticking along very well and there is not too much to report on the medical front. Therefore now and again I thought I might crave your indulgence and use this space to mention a few other things that I'd like to share with you that are not directly related to the lymphoma. I'll try not to make this too much of a soap box or a "you know what really winds me up" sort of a grumpy old man page. ( Though I'm sure I'll feel the need to have the odd moan that I just can't keep to myself. As Stephen Fry recently said in one of his podgrams this is akin to Midas' Barber [ scroll right down to the last story o...

I had a call late on Thursday from the main BMT doctor saying that my ciclosporin levels were a bit low so I have increased my doses from 150mg in the morning and 175mg in the evening to be 175mg for both. A small adjustment so I shouldn't notice any real difference. Yesterday I cooked a very nice shepherds pie with lamb mince and we have some left over for tonight's supper. If I tell you that today started with sausage baps for breakfast in bed at 10:30 then it gives you an idea of the sort of lazy day I have planned. Mind you I did get the washing and most of the ironing done yesterday.

I went to the transplant clinic on my own yesterday and on the whole everything is going well, my haemoglobin is holding around 10.4 and my platelets have recovered to normal limits. My neutrophils are staying around 1.2 but one of the drugs I take, the anibiotic septrin, is known to suppress them. My white cells are around 2.1 and again the ciclosporin is responsible in part for keeping these values low. The doctor has been checking my blood pressure each week and noting it was a little high, I also took along my own readings that I have been doing during the week. This increase is almost definitely caused by the ciclosporin I am taking so he decided to start me on a low dose (5mg) of a blood pressure drug called Amlodepine . I had some of this when I was in hospital and it was fine. It's known to work well with reducing blood pressure rises caused by ciclosporin. There is one main possible side effect which is swollen ankles caused by fluid retention. Unfortunately this doesn...

As things are ticking along ok so far on the whole lymphoma front perhaps you will indulge me a little whilst I get on my soap box a moment. My friend Andy sent me a link about the Atheist Bus Campaign which, as explained here, aims to raise money to advertise an atheist/humanist slogan on some London buses to counter the religious advertising from things like the Alpha Course . The slogan they are going with is “There’s probably no God. Now stop worrying and enjoy your life.” Now to my taste that is a little weak and I would prefer "There is almost definitely no God" even so I think this is a worthwhile cause. You can help support the campaign by donating at JustGiving and read more about the campaign on the BBC News site, here Two more quick plugs, check out this excellent book by Richard Dawkins, "The God Delusion" and check out RichardDawkins.net as a whole for thought provoking articles and videos. Thank you for your time. ;o)

Well the traffic was a little sticky but I drove to the hospital for my bloods today with Dad in tow. It was all fine and I was back at Mom and Dad's having a cup of coffee by 11:15 Since then I've been back at the flat doing some work in the despatch department of Gareths' CD Emporium. He's selling off some of his old CDs at Amazon. Check out Gareth's CDs to find a bargain, most are only 50p or a pound plus P&P. Printing the postage and packing half a dozen CDs or so in jiffy bags each day is just a nice little activity for me and it means I get a walk to the postbox as well. Wednesday is the transplant clinic and the plan is I'll go on my own this time.

Nothing much to report this weekend really, just a nice relaxing time at the flat, though the washing is all done and most of the ironing too. The food shopping is also done courtesy of Tesco.com due for delivery on Monday evening. I'm off to Mom and Dad's for an evening meal rather than the usual Sunday Lunch. Tomorrow I'm at the day unit for bloods in the morning.

Well I never got a call from the hospital about my ciclosporin levels yesterday or to confirm when I need to go to the day unit for bloods so I booked myself in for Monday bloods and later spoke to one of the haematology nurses to find out what was happening. I didn't get a call about ciclosporin levels yesterday because my level had come back up to the right point based on my Wednesday blood test, (whereas it was a bit low from last Monday ). So it is steady as she goes and see if I am fluctuating still on Monday. Aside from that today has been a bit of an activity day. I drove Arthur for the first time in about six weeks. Popped over to Mom and Dad's for a coffee and a chat ( and to scrounge an onion for tonight's spaghetti bolognaise ). The plan is that on Monday I'll drive and pick Dad up as we go to the day unit. This is a trial run before I go on my own so if for some reason I don't feel up to driving back Dad will be there to take over. Hopefully though it ...

Dad took me to the transplant clinic today and I saw the consultant in relatively quick time, only 30 minutes past my allotted time of 10:00 The consultant said that things were going along fine and my counts were where they should be. My haemoglobin has gone up to 10.4 thanks to the transfusion on Monday. He said the ciclosporin levels in my blood were a bit low so I will probably get a call tomorrow to increase the dose. He also said we should be able to cut my hospital visits down to twice a week, Wednesday for the clinic and then either Monday or Friday for blood tests in the day unit but not both.

Well the blood certainly seems to have helped out my energy levels. I managed to iron all the shirts last night finished off the other stuff this morning. I've also been for a walk up the hill to the post box by the post office without feeling too tired at all, whereas before the transfusion just getting upstairs into the flat was enough to tire me out. I thought I'd say a little something about the medication I'm taking at the moment. Here's a pic ( click to embiggen if you really want to look at the pills in depth). From top to bottom they are:- Magnesium Oxide x 2 , three times a day to counteract magnesium loss caused by ciclosporin Penicillin x 1 , twice a day to protect against bacterial infection Co-trimoxazole ( aka Septrin) x 1 twice a day Monday, Wednesday and Friday only, another prophylactic antibiotic Acciclovir x 1 four times a day to prevent viral infections, especially the cold sore virus Ciclosporin 150mg Morning, 175mg Evening the anti-rejection drug ...

I'm just back from the day unit having had two units of red blood cells. I've now had 12 units in total since April of this year. ( You have considered becoming a blood donor, haven't you? ;o) I'm still type O+ at the moment, the switch over to my donor's blood group ( A+ ) usually happens some time around 120 days after the transplant. Mind you since O+ is the universal donor, it wouldn't do any harm to have O+ when I do switch to A+ I'm back at the flat now just taking it easy, though I might see if the new red cells mean I can iron more than one and a half shirts at a time. Next appointment is the transplant clinic on Wednesday.

Just a quick note. Sunday was mostly taken up with a plumbing emergency after the flush on the loo broke so it wouldn't lift the bung to let the water out. Gareth stepped into the breach and fitted a complete new float based cistern set which he got from B & Q. I'm typing this on Monday morning ( T + 27 ) so now I am off to the day unit for my two units of blood. I'll let you know how I get on later.

Oops forgot to do a blog entry for yesterday. Well it wasn't that exciting ( unlike all my other posts :o) Dad took me to the day unit to have my bloods taken including a cross-match for my blood transfusion on Monday. I asked if I could take regular antacid and trapped wind remedies as I tend to suffer a bit with that in the evenings. They said yes over the counter stuff was fine so between Dad and Gareth I now have selection of Gavascon, Remagel, Tums etc. to see what helps. After the day unit I had lunch at Mom and Dad's and then came back to the flat and just did a bit of pottering about , reading and napping. I had a lie in this morning until 10:00 and then we had a visit from Andy about 11:00 Oh the other thing I meant to mention was that my hair has fallen out again. It started whilst I was in hospital and on the last Friday I was in hospital Dad brought my clippers in and trimmed it all off. Since then I have had a wet shave and got rid of the last of the patchy fuzz. I...

I've had a quiet day at home today. I tried to do a bit of ironing but after one and half shirts I was defeated so I settled back on the sofa to read some more of the rather fun Oscar Wilde and The Candlelight Murders , which is a victorian murder mystery with Oscar Wilde as the detective. I did manage a walk to the post box at the end of the road, a round trip of a hundred yards I would think, to post a couple of letters and it was nice to get a bit of fresh air in the Autumn sunshine. I had a little nap in the afternoon for half an hour or so before Dad came to pick me up to go to Mom and Dad's for tea as Gareth was going to his Mom's tonight and won't be back until 22:00. I could have driven myself to Mom and Dad's but they have both said that for the first week or two they would rather Dad did the chauffeuring. I'm at the day unit tomorrow for regular blood tests plus a cross match for my probable transfusion on Monday.

Today was my first transplant clinic, something that will become a regular weekly Wednesday visit. Dad took me up as I am still not feeling up to driving, especially in the morning when I have my morning crash for an hour or so. We got there for 10:30 and were seen by about 11:30. I'd had blood taken and they are able to get reasonably accurate instant results right there. The consultant checked how I was doing and had a general chat about how I had been since I had come out. He went over my counts, which were as follows ( figures in brackets are the normal ranges expected in a healthy person ) White Blood Cells 2.1 ( 4 - 11 ) Neutrophils 1.2 ( 2 - 7.5 ) Haemoglobin 8.6 ( 13 - 18 ) Platelents 126 ( 150 - 440 ) He said the neutrophil and white cells are just about where he would expect them to be at this stage, my platelets are ahead of the game and by haemoglobin is low, making me officially anaemic. This is quite common as red blood ...

It was great to sleep in my own bed. I got up about 08:30 and had a shower and then had to have a rest because of my customary morning "crash". My blood pressure drops and I feel really, really tired so I just have to rest for a while. I watched a couple of shows I had recorded whilst I was in hospital and then Mom and Dad came over for lunch and stayed for a couple of hours. In the afternoon I managed to iron three and half shirts before I felt tired again. I also prepared the potatoes and veg for tonight's dinner. Gareth cooked Ikea Meat Balls and the mild curry sauce with potatoes, carrots and broccoli. It was very tasty, especially the veg which I always miss when in hospital. I also ploughed my way through the requisite three, yes three, litres of fluids. This is to protect my kidneys from the effects of the ciclosporin. In the morning in my first transplant clinic at the hospital. Dad is going to take me as I'm not feeling up to driving in the mornings.

The doctors came round this morning and gave me the all clear to go home. As you can imagine I was delighted and just a little bit surprised as I thought I'd be in another day. I had to have some magnesium in a 500 ml saline drip and then Dad came and collected me and I was back at Mom and Dad's by about 14:45 . Gareth had booked the day off work in anticipation of this being the date four weeks after my admission which worked out perfectly. He came over to Mom and Dad's for about 16:00 having been to Ikea for more things for the flat and to stock the fridge and freezer with food. I got back to the flat just after 17:00 Gareth has been working hard on decorating the flat over the last four weeks in what little spare time he has had and it looks really great. For my tea I had a small portion of gnocci with a tomato sauce it was nice to have something with some texture and flavour. I'm still taking it easy with food but my appetite is returning. I'll probably post mor...

I had an improving day yesterday, the diarrhoea continues to improve and last night my temperature didn't go above 37.4 which hardly counts as a temperature at all. One of the down sides to having my line out is not having easy access for blood tests or antibiotic injections so there was a bit of stabbing yesterday as my veins are quite poor because of one of the chemo drugs I had a while back which causes them to constrict. The nurses managed to get blood out after about 4 attempts and late last night the doctor put a canula in the back of my right hand so I can have my antibiotic injection. It's not the most convenient place for a canula but with a tubigrip bandage over it it's not too bad. I'm going through quite a tired spell now. After I had a shower this morning it sort of came over me in a wave, the way it does sometimes. I shall just have to take it easy.

Well yesterday I had hardly any diarrhoea and when the doctor came back to see me about 17:00 she said it was unusual for a GVHD induced diarrhoea to clear up so quickly so it was a bit of a mystery as to what it was. She put me back on a normal solid food diet and switched me back to tablets of ciclosporin instead of the drip. I had a good night's sleep and feel quite good this morning, the diarrhoea has come back a little and I'm still getting a temperature overnight. The weekend doctor said they might want to scan my chest again in case I have picked up a fungal infection since the last one. Not sure what all this means in terms of a release date except that it won't be before Monday and I suspect a little later in the week.

Yesterday the doctor explained the plan of action to deal with my diarrhoea. Firstly I was put on a clear fluid diet, i.e. water ( or black tea or coffee but I'm off hot drinks at the moment ) no food at all. Secondly because inflammation of the gut can reduce it's efficiency at taking up ciclosporin I was switched back to having it in a drip twice a day. This meant having a canula fitted in my arm as I no longer have a Hickman line. Saving the best until last the doc said she would arrange a bowel biopsy to confirm or not the diagnosis of graft versus host disease (GVHD). This involves having a camera with swiss army knife style attachments inserted up my bum to take some tissue samples. When this will be is not certain but as soon as possible. I didn't have any diarrhoea yesterday at all and only a little bit this morning which the doctor was pleased about and might mean things are settling down. Today I am allowed bread and soup to see if that sets anything off. I stil...

A bit of a set back yesterday as around 17:30 the diarrhoea came back and it kept me up every couple of hours throughout the night. My stool samples came back negative however so it's not a bug causing it. There are a two basic possibilities causing the problem now, either it is the effects of the chemo or it is the start of Graft Versus Host Disease (GVHD) where the donor immune cells are attacking my own body. It would be quite early to have signs of GVHD but not unheard of. GVHD is usually treated with steroids. (yum). I had two lo-peramide ( immodium ) tablets in with my usual meds so this should help stop the diarrhoea in the short term. Another slight complication is that I had a temperature this morning so blood cultures have been sent off as a precaution. I'm pretty sure it was just a blip caused by sleeping with too many bed clothes but we'll see what the results are. I'm waiting to see the doctor to find out what the plan of action is. I'm pretty certain I...

Having my line out sorted my temperature problems as expected. Yesterday I was mostly just really really tired but today my energy levels are up a bit hence being able to do this blog entry. The only issue now is that I have started to get diarrhoea again , it came on yesterday afternoon and got worse during early hours of this morning. It's settled down now so far today. A sample has been sent off and it all depends on what the results of that show. It could show a bug in which case I need an appropriate antibiotic and I've been started on Metronidazole already as a precaution. If the sample is clear and I don't have any more bad episodes I should be able to go home tomorrow. The pharmacist has been to see me to talk through all the different drugs I'll be taking for the next couple of months. I'll go through all that another time. Finally thanks to Andy for updating the blog for me yesterday.

Simon has asked me to make today's posting to keep everyone up to speed. He's doing fine, but is really tired so hasn't had the chance today to put finger to keyboard. He had a CT scan of head and chest yesterday afternoon, and the results were back on the ward before he was. All the results were normal, which is another thing to tick off the list. He heard this morning that they had found a 'slow growing' bug in his line, which could explain the unusual temperature spikes over the last few days. As he now has little need for it (apart from freaking out friends and neighbours by pretending to be Borg ) they have taken it out this afternoon. The upshot of these two pieces of news is that Simon should be home either Wednesday or Thursday, as long as everything else stays on track. I think that's all the news that's fit to print and Simon will be back here shortly I'm sure.

I slept for pretty much 12 hours straight from 20:00 last night apart from a few breaks for having my antibiotic or popping to the loo. Even so I am still exhausted this morning and could sleep another 12 hours I'm sure. The bone pain isn't too bad at all so far though it usually comes on worse after I have the day's GCSF injection, due in about 2 hours. I'm still running a temperature . The professor saw me and said my progress was excellent, my counts are rising and that shows the transplant has worked. They just need to sort out this temperature and so today I am going for a CT scan of the chest and head , especially my sinuses as I do sound a bit nasal now and then. The professor thinks it could actually be my hickman line causing the temperature spikes and there is no need for me to have it in now so that will be removed later today as well. Once my temperature is sorted out I can go home so hopefully that will only be a few days away.,

Just a quick blog today as I am really really tired. I slept much better last night and the bone pain hasn't been as bad today ( though as I type this it is coming on a bit stronger ). My white cell count is up to 0.4 so there is definite positive steps there. -- http://raetsel.wordpress.com