MCL and Me

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

My temperature went back up again yesterday evening and earlier in the afternoon I had started to get some bone pain which some paracetamol and codeine took care of for the most part. I had a rather disturbed night because of the bone pain but slept till 03:00 and had some more painkillers around 04:30 and then slept , with breaks, until 08:15. I'm feeling a bit rough and very tired this morning but my temperature has come back down again. I saw the doctor who said they would check the blood culture results when they come back to see if I do have a bug. The bone pain, though unfortunate, is a sign that things are happening in my bone marrow and that is encouraging. Also my platelet count has started to rise without the need for a transfusion , another positive sign.

I slept a bit better last night compared to the previous night though was still restless between 02:00 and 03:00. First thing this morning I felt really quite rough, very tired and had a temperature of 37.8 By 09:30 I was feeling a bit better and my temperature had come down to 36.3, even so the doctor has started me on some powerful antibiotics to counteract any possible bacterial infections as well as taking blood cultures to test to find out what, if any, specific bug I have. In the doctor's words "you have to have a few days like this otherwise you will have just sailed through your transplant and that's not allowed." I have to say from my side of the fence it hasn't been plain sailing at all but I guess it could have been a lot worse. My white cell count yesterday was 0.1 up from the 0.0 it has been for the last few days. This might just be a measuring error in the machine at these very low levels or it could be my stem cells starting to make new blood cells ...

I didn't have to have my evening dose of ciclosporin yesterday because my blood results showed the level was high enough. Similarly I didn't have a dose this morning. I'll have an evening dose today and they will check my levels with a blood test tomorrow. The professor saw me yesterday afternoon and said they were looking at releasing me "early next week". This is great news but I'm trying not to get my hopes up too much as a lot of things could happen to put that date back between now and then. Even so it is very encouraging. I didn't sleep so well last night and today I feel sort of "twitchy" or fidgety all the time which is a bit of an annoyance.

Yesterday I had some magnesium given in 500 ml saline as my level was a bit low in my latest blood tests. This was given in the evening over 4 hours and I didn't have any side effects from it I am pleased to say. My appetite is returning and I'm eating more normal amounts of food with each meal. Later today I'm having some GCSF not as an injection but as a drip through my line whether this will make any difference to my bone pain remains to be seen.

Things are settling down into a pattern at the moment and there's nothing much new to report. My appetite is returning and my nausea diminishing. I'm still quite tired during the day and have a couple of naps usually despite sleeping well at night. One thing that has helped me through the rough times ( and the good ) is my Pure Siesta Digital Radio . When I was really struggling with the blood pressure headaches and nausea last week it was on almost 24 hours a day. I'd listen to Radio 4 in the morning then Steve Right on Radio 2 in the afternoon and then BBC 7 Drama and Comedy hours. BBC 7 would start to repeat itself after midnight so then I would switch to Janice Long and Alex Lester on Radio 2 for the early hours as I drifted in and out of sleep. The doctor has just seen me and said everything is still going well , my neutrophil count is 0.1 so virtually zero but my platelets are holding at 100 ( they were 240 when I came in ). In her words I am "cheap date" w...

My stomach settled down yesterday and this morning I had an IV injection of my anti-sickness medicine, ondansetron, first thing to give it chance to work before I ate. That seemed to work well and I managed a whole piece of toast and a bowl of porridge this morning. I saw the professor again this morning who re-iterated how pleased they are with my progress and said he hoped to see new blood cells from "my" stem cells being produced by next week which will be good. My mouth is a little sore round the gum line so I may be heading for some mouth ulcers but so far they are not too bad at all.

Today I am T+5 and coming to the end of my second week in hospital. In one sense it's gone quite quickly in another sense, mainly at times like 2 in the morning last Wednesday with stomach cramps and a blood pressure headache, it hasn't gone quickly at all. I had a slight setback yesterday afternoon. Keen to keep the fluid in take up I drank a bit too much water , two 150ml cups, a bit too quickly, just under 30 mins, and as a result I was sick and had bad nausea for a while. It was only the water that came back so I didn't lose any calories as it were but it did put me off my dinner completely. It was good to have both Andy and Gareth visit in the evening to take my mind off things. I watched the second Lord of the Rings film last night on Channel 4 and though the 14" screen and dodgy picture weren't ideal viewing conditions it still kept me gripped for the night. I slept well and part of my dream was about eating a ham sandwich. I wish I could actually manage a h...

Today I am T + 4 and feeling about the same as yesterday , maybe a little more tired though I slept well last night. My stool sample from Friday came back negative yesterday for any bugs so my diarrhoea is just caused by the chemo and I don't need any antibiotics. Instead I've been given to immodium ( lo-peramide ) to help dry up my runny bottom and that has worked well. I've also found a handy mnemonic to remember how to spell diarrhoea which is:- D ash I n A R eal R ush, H urry O r E lse A ccident Let's hope I don't have to spell the word too many more times in coming days. I saw the doctor this morning and she said my counts are now down to virtually zero which is pretty much on track now it's a question of them coming back up again. She also said she could see the start of the break down of the lining of my mouth so I may have a sore mouth to deal with over the next few days. No problems with it so far though.

I've continued to build on the slight improvements from yesterday. I was able to have soup and a macaroni pudding for my dinner and had a fortified orange drink , a whole piece of toast and half a weetabix for breakfast this morning. My stomach is still unsettled and the diarrhea has come back so a sample has been sent off to see if it is just the effect of the chemo or as a result of a bug , the doc is fairly confident it will be the chemo in which case I will be given some immodium to help clear it up. I change rooms last night rather than today and I am now in room five which is bigger and has an electrically adjustable bed which is very handy. My blood counts are slowly dropping including my platelets that help clot blood. I don't need any transfusions at the moment but the doc has advised me to stop wet shaving in case I cut myself so I'm going to be quite beardy by the time I get out I think.

Today is T+2 and it's similar to the last couple of days although I'm sleeping better and my blood pressure is not getting as high when I have the ciclosporin. I'm still very tired and napping a lot during the day and my digestion is not settled either, keeping my off my food , though I managed a whole piece of toast for breakfast which is progress. I saw the professor of haematology today and he said everything is going well and I am doing fine which is re-assuring. I'm probably going to be moved to room seven tomorrow as they have been doing work on the ward all week and my current room eight is due to be worked on tomorrow. Well a change is as good as a rest as they say.

Yesterday was Transplant Day , I got the donor cells transfused into me at 16:30 and at 17:30 it was all done. This is the turning point in a journey that began back in July 2007 when we first discussed the treatment plan and started looking for a donor. I would like to be more expansive about the whole thing but at the moment I just don't have the energy I'm afraid. I had a better night and my blood pressure came down by morning though has since gone up a bit again when I started this mornings dose of ciclosporin. I'm still off my food but managed half a piece of toast and a few mouthfuls of cereal for breakfast. My runny bottom has cleared up almost the opposite extent and my stomach cramps have calmed down a lot. Still very tired and napping a lot.

The melphalan has given me stomach cramps and a slightly runny bottom. The ciclosporin has raised my blood pressure and given me a headache. I had a rough night and feel really weak and feeble not helped by not being able to manage more than half a piece of toast for breakfast today and no dinner last night. The doc saw me this morning and said unfortunately this is all normal but has prescribed some drugs to help with the stomach and blood pressure. I get my donor stem cells after lunch today. -- http://raetsel.wordpress.com

Yesterday was a light day drug wise with just the one dose of fludarabine in the evening and I slept much better last night as well as managing a couple of naps during the day. Being off the piriton was the key I think. Today things are gearing up for the transplant tomorrow. At 06:00 I was put on 240mg of the anti-rejection drug, ciclosporin and this will run for six hours and then I'll have another bag put on for the next six and so on to run for the full 24 hours. ( So I guess I'll get a bag change at midnight as well so sleep will be a bit disrupted ). I felt a bit nauseous this morning which might be an effect of the ciclosporin, I took it easy with breakfast having just dry wholemeal toast and cornflakes with just a bit of milk and things have settled down. This might also be due to the fact that I had an additional tablet this morning, the anti-sickness drug ondansetron which I've had before and has been very effective. Around lunchtime today I'll have my fina...

My last dose of Campath passed off uneventfully last night as did my penultimate fludarabine. I had visits from Gareth and Andy as advertised and it was great chatting to them both. The day passed pretty quickly. I managed a bit of a snooze late afternoon and then spent most of the evening watching Lord of the Rings on the TV in the Day Room as reception for Channel 4 in my room is not very good. I slept better last night getting off about 00:30 until 05:00 and then again from about 06:00 to 07:00 . As expected the conjunctivitis has spread to my right eye so I am putting drops in both eyes now. The left one is already a little bit clearer. They are a bit itchy but not as bad as they look. Only fludarabine today and that's given over 30 minutes so with a saline flush to follow I'll only be hooked up to Ivy for an hour this evening. Tomorrow is a new chemo drug , Melphalan, and the start of my anti-rejection drug Ciclosporin.

Yesterday was largely a repeat of Thursday ( apart from no massage ). I had the Campath and Fludarabine without incident and I had trouble getting off to sleep again. However last night wasn't too bad. I was asleep by about 01:00 and though I woke to go to the loo at 04:30 I got back off to sleep quickly and slept until 06:30 which is much more reasonable. It's lucky the 06:00 observations for blood pressure were running late, or maybe they give you a lie in on a weekend. I even had a dream that I could remember as well. It was about going to play badminton but every time I went to go on the court something would happen that meant I had to go out to the car park to do something with my van. It culminated in a large roof box filled with stones falling off the van and sliding down a hill into an ornamental pond in the grounds of the house of the person who had invited me round for badminton. Weird , huh? Interpretations on a postcard please. This morning I am still tired but it ...

I had my third dose of Campatch and second dose of Fludarabine yesterday and they both went off without incident. My temperature and blood pressure remained normal as well so I'm obviously getting more used to the medication. In the morning I had a visit from the professor of haematology and his entourage of doctors and nurses. It was just a quick check to see how I was doing and to say everything was on track. He is a very down to earth person and we spent most of the time chatting about 3g Broadband , Jabber and Twitter ( much to the bemusement of the other staff I think ). I also had a visit from the resident physio and massage therapist and had a very relaxing shoulder and neck message. The post is funded by a charity founded in memory of a girl that was treated by the professor when he worked down in the Royal Free in London and funds one post there as well. I'll try and get the name of the charity as I can't remember the spelling of it at the moment and can't ...

I had my second dose of Campath and my first dose of Fludarabine yesterday and apart from spiking a bit of a temperature and raised blood pressure briefly in the night there no reactions this time so hopefully this is how it will continue now with these two drugs for the next few days. I had a bit of a disturbed night, I could get off to sleep but kept waking after 15 minutes or so but I got some solid sleep from 01:00 to 05:00 so I'm not feeling too tired this morning. I was given a sheet with the plan for my treatment with the days numbered -8 , -7 etc. down to day 0 when I have my stem cell transplant, which will be Tuesday 16th September. The doctor also told me my donor actually comes from Germany rather than the UK. This was suggested as his origin months ago but then it seemed to change to UK or may I just misinterpreted what I'd heard. However since I like sauerkraut anyway it doesn't really matter if I have German rather than Cockney blood. One thing I found intr...

Just try the Campath Chemotherapy Exercise and Diet plan. Simply take 10mg of Campath dissolved in 100ml of saline in an IV drip over four hours. Just before the end of the four hours the exercise part of the plan will commence with violent shakes, shivers and teeth chattering to burn up those calories along with a high temperature to stoke the furnace. Less than one hour later you'll be chucking up your lunch to reduce that calorific intake. Yesterday I started my first proper Chemo drug yesterday, the mono-clonal antibody Campath. This binds to my T Cell Lymphocytes so they can be killed off by the rest of my immune system. This is similar to the Rituximab I had as part of my previous chemo regime and like that drug it can cause an "infusion reaction" as the body reacts to the drug. I never had any reaction with Rituximab but was warned that it was much more likely to occur with Campath and despite having an injection of piriton and hydrocortisone to reduce the effe...

I had a reasonable night's sleep , though it took me a bit longer than usual to get off and I was awake early. I saw the main BMT doctor last night while mom and dad were visting and she went through the treatment protocol with me. I won't go into all the details now but basically I'll be having a drug called Campath for four hours a day for the next seven days with another couple of drugs towards the end which are also only over short periods of time. This means I'll only be tethered to Ivy for part of each day for the next week, so I'll be more easily mobile and I can have a shower in the morning. As well as the chemo drugs through Ivy, I've started on a range of tablets to either help with the side effects of those or stop me getting infections. Most of these I've had before but there are a couple of new ones The regulars are:- Allopurinol to prevent gout Ranitidine to prevent acid reflux (indigestion) Fluconazole to protect against fungal infections Chlo...

I'm all settled in to my room on the Bone Marrow Transplant Unit, Room 8 with fridge, tv, stereo, wardrobe, en suite bathroom and shower and a delightful view of a small garden 5 floors below and across the way to the Birmingham University clock tower. I've taken a couple of picture of my room and if I can work out a way to upload them to this blog I'll post them up. My EEE PC or "laptot" as a friend calls it works really well over my Three 3g Broadband Modem I recently purchased so I have full internet access on a proper computer ( running Linux of course ). This means that as well as access to email and instant messaging I'll be able to add links to my blog posts as shown in this paragraph, so I can add links to explain any geeky or medical jargon. The nurses here are great as usual , all very friendly and one I know from East 3a and she remembered me as well. I've settled in with the usual obs chart, weight and then bloods samples from my line. Howe...

........Go! Well after one false start anyway. I rang the number for the Bone Marrow Transplant unit given to me on the letter from the BMT Co-ordinator at 10:00 this morning as was greeted by a sound I hadn't heard in a long time. The electronic audio warble of a fax machine. I check the number and redialed and got the fax machine again. I considered sending them a fax with a picture of a bed on it and a large question mark but in the end I rang the main hospital reception and got transferred to the BMT. My bed is ready and I'll be leaving here about 13:00 to be admitted on to the unit

.......and no longer " burning like fire ". The chloramphenicol drops have cleared up my conjunctivitis again and I'm just finishing off the course of drops today. I've stayed off the computer pretty much over the last three days to help my dry eye syndrome as well. That has been quite bad in my right despite using the artificial tears regularly. The problem is, as it always has been, at night. As soon as I move my right eye under the lid in the morning, never mind actually open it, I get a sharp pain in it like someone has poked me in the eye. What has actually happened is that the surface of my eye is dry and the base epithelial layer of the cornea breaks down and gets ripped off by my lid. Yes it is as painful as it sounds. The pain subsides after an hour or so and generally it is ok for the rest of the day. What's worse than the early morning wake up poke in the eye is if I wake in the middle of the night for some reason. It takes me a while to get back off ...

Well I've had a reasonable weekend. Nice and relaxing but my cold was still hanging around. I went to the day unit for my usual bloods yesterday and as that is the last one for a while as I go up to the Bone Marrow Transplant Unit, I dropped of some chocolates from Hotel Chocolat for both the day unit and the ward East 3a. They were very well received. I thought my eyes were clearing well and my course of drops finished on Sunday. I had a bit of gunk in my one eye yesterday but not much. This morning however the gunk was worse and my eye was going pink again ( pink-eye is another common name for conjunctivitis, in the USA mostly I think ). I went to my GP to get some more drops and also got him to look at my throat as that is the worst symptom of my cold. He gave a prescription for the chloramphenical drops and some penicillin for my throat. He also suggested I get as much rest as possible between now and the transplant and drink plenty of hot fluids. Therefore, to that end, I...