MCL and Me

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...