MCL and Me

...as they say in tipton. Or no more bets. I had a call at about 19:15 tonight to say there was a bed for me and could I come right now in case an emergency admission nicked it overnight. Gareth gave me a lift up and I was all settled in by 20:15. I had the choice of two beds here in room 6 and I could have completed the set and had the only bed I've not had before but I decided I'd rather have my original bed by the window. -- http://raetsel.wordpress.com

Well I didn't get a bed today so perhaps we should start running a book on what day this week I will get one. What odds am I given for Tuesday? Had a marathon wait on the day unit for my blood tests, I've never seen it so busy. Finally got seen about 12:00 (having been there since 10:00) still Dad and I did most of the Quick Crossword in the in house hospital magazine. I'll ring the ward again tomorrow around 11:45 so the doctors will have done their rounds and hopefully kicked somebody out.

I had a nice relaxing birthday weekend culminating in lunch at mom and dad's and then a visit to Andy to see his new bathroom and have a general catch up. I'll be packing my stuff for hospital tonight. As I am at the day unit for bloods in the morning to have my Hickman line "serviced" and the dressing changed I am going to get my Dad to take me. Then I can pop along to the ward and see if there is a bed for me in person. If so I'll have my stuff and can go right in. You can bet that if I didn't do that then there would definitely be a bed for me and I'd have to drive home just to get Dad to come and bring me back in. Such is Murphy's Law.

Yes today I am 40. My goodness that feels a very grown up age to be. I've had some great presents including the ideal thing for a gadget loving coffee drinker, a Tassimo machine from Gareth and a DAB Radio alarm from Andy and Paul. From work I had a card signed by everyone and £50 Waterstone's token, can't wait to spend that. Loads of other nice things as well as £90 in cash. I feel a gadget purchase coming on. Meanwhile back at the lymphoma.....I went for bloods today, my haemoglobin was still low but stable. About 13:00 I had a 'phone call and it was one of the doctors at the hospital. My first thought was "no not a blood transfusion today" however it was actually a call to say I should ring the ward on Monday to see if they have a bed for me for my last round of chemo. Whilst I'm not looking forward to this round as it is the nastier drugs and 6 litres of sodium bicarb fluids a day it should be my last round before the stem cell transplant so that i...

I haven't had a call from the day unit so I guess my haemoglobin results from yesterday showed that it was starting to recover on its own. I have had a date come through for my CT scan of the 9th July, but I think this might be a bit too soon. I'll probably only have just finished my last round of chemo by then so it might be a bit early to do the scan to check the results. I'll mention it to the docs and my keyworker when I see them and see what they say.

I went to the day unit for my blood tests this morning as usual and enquired about my results from Monday. My haemoglobin was still low on Monday so if the results they get back this afternoon show it has not started to come up along with my other counts then they will call me to come in for a transfusion of a couple of units of blood tomorrow. If I don't hear anything then the haemoglobin will have started to come up on its own and I'll just go for normal blood tests on Friday. All this means a bit of a delay in getting to that next round of chemo but can't be helped.

I hesitate to use the word normal these days, but I had a normal Tuesday logged on to work for a full day. In other news, I've had my pre-transplant test date come through for the 21st August. This is a lung function test, a heart ECG and ultrasound ( echocardiogram) and another Kidney GFR test. This is to make sure I am in reasonable shape for the transplant and get some baseline performance figures.

I went to the day unit this morning to have my normal bloods taken and have my hickman line serviced. The nurses flush both lumens, change the bionectors (the end seals) and change my dressing. I also had the stitch removed that was initially helping secure the line in my chest as the wound is now all healed over the cuff that keeps it in place. I asked about my blood results from Friday and all my counts were back to normal apart from my haemoglobin ( red blood cells ) which was only at 9. This is quite low and below 8.5 I would be given a blood transfusion to bring the levels up. However I don't have any anaemia symptoms like breathlessness or excessive tiredness so the count has probably already risen since Friday. So I'm not quite ready to start chasing to go back in to hospital for my final round of chemo; they'd prefer my haemoglobin to be around 10 or 11 I think as that is what it came back to last time. I'm back on the day unit for bloods on Wednesday when I...

I went for bloods at the day unit yesterday morning and then worked a normal day. Today I've had a lazy day spending most of the morning in bed listening to Barry Took on BBC Radio 7. It was nice to spend some time in bed through choice and not necessity. The afternoon has been equally lazy with just a bit of housework thrown in. On Monday at the day unit I'll ask what my counts from Friday were as I reckon they should be back to normal by now. Then I can start chasing the docs to see when I can come in for my final round of chemo. As my consultant is now on maternity leave until January it will be interesting to see who is picking up my case and how well they deal with it.

I've spent the day working and felt absolutely fine. I'm a little tired but that's just general mental tiredness after a busy day, nothing like the fatigue I have been getting. Cooked a really nice lunch of asparagus with new potatoes. Ok it was asparagus wrapped in bacon but I'm not a meat addict really. It's just a delicious combination. Put the asparagus spears in bunches of four or five, drizzle with olive oil then wrap a piece of bacon round and secure with a cocktail stick. Place in an oven proof dish and cook for about 12-15 mins in a hot oven ( about 200 deg C). Bloods at the day unit tomorrow as usual then back to being online at work.

I slept well and woke feeling much better than I have done for a few days now. Dad took me to the day unit as Gareth had gone back down to Portsmouth and borrowed Arthur to bring back the last of his stuff. After bloods at the day unit I spent the afternoon logged on to work and felt fine. So let's hope I've turned the corner on this one. I've been looking back over the treatment journal I keep and there does seem to be a pattern to my fatigue and general yuckiness. In April, May and June I seem to have a bad patch at around 16 to 20 days after I started a particular round of chemo. I'll keep an eye on this for the fourth and hopefully final round of chemo in a week or so's time. Not that I can do much to stop the fatigue but forewarned is forearmed as they say. Oh and for those of you keeping count, today is day 84 since I went in for my first round of chemo on 27th March. Doesn't time fly when you are having fun.

I had a bit of a disturbed night. I went to bed about 22:45 feeling sleepy but didn't get off to sleep until about 01:00 probably because I had napped too much during the day. Then I woke about 03:00 from a bad dream where someone was trying to break in to the house. ( It was the house I had when I lived in Bromsgrove ). Took me a while to work out what was going on and settle down but then I slept until 08:30 Today my energy levels have been better and I've been able to remain conscious the whole day which is actually something of an achievement. I didn't log on to work as I decided to still rest up but I did go through a few bits of post and paperwork that needed attending too that had accumulated whilst I was in hospital. I also spent a bit of time researching information about stem cell transplants and in particular reduced intensity conditioning. I came across a very good and detailed guide to the process here produced by the Leukemia and Lymphoma Society . There'...

I managed to make it in to the day unit on my own to have my bloods taken. I was still feeling pretty tired but managed the walk along the flat from the car park to the unit, something I couldn't have done yesterday. I had a word with a doc and the nurses about the fatigue. They said some people can spot a pattern and will know when they are headed for a bad spell others find it less predictable. The doc said with the HyperCVAD chemo I'm having it is generally less predictable and the cumulative effects over four cycles make this more of a problem. When I came home this afternoon I completely crashed and burned. I lay on the bed about 14:00 and next thing I knew I woke briefly at 16:00 before dropping off until nearly 17:00. To be honest I could have lain there longer and probably still be there but I managed to get up and cook some tea and spend the evening on the sofa. There's really not much I can do about this at the moment. It's frustrating given how last Thursday ...

Well so much for hoping to have more energy today. Though the bone pain has subsided and I've managed on just one lot of paracetamol, I've been totally out of it for most of the day with absolutely no energy. It's just another chemo fatigue attack like I had the end of the other week I think. It's just becoming rather unpredictable how I am going to feel from one morning to the next at the moment. I've spent the day mostly just sleeping or lying on the settee. I've rallied a bit this evening. Clinic in the morning for bloods ( may need Gareth or Dad's help to get there ) so they can check out the blood levels but I doubt it's the haemoglobin.

I had an ok night though a bit restless with bone pain. I've managed on just paracetamol today though as the co-codamol did slow down the digestion a bit. If the pain gets worse I'll take the stronger pain killers, it's just a bit of a balancing act I guess. So just a lazy day in the flat really, resting and taking it easy, though I did manage to do the ironing and cook a cauliflower and potato curry for our tea. Hopefully I'll be able to be a bit more active tomorrow.

Well about 22:00 last night I felt the first twinge of some GCSF style bone pain in the hips and I had some paracetamol to see me through the night. That lasted until 03:00 when I had a couple more but sleep was a bit fitful from 03:00 to 05:30 by which time I was pretty much fully awake so decided to get up anyway. I took some codeine based cocodamol at 07:30 and though I've had twinges and some rough bouts with bone pain throughout the day it hasn't been as bad as it was last time so maybe the slow release injection and better pain killers are doing the trick. Most of the day was spent twiddling my thumbs at the hospital waiting for another hour to pass so I could have th next blood test but I had Gareth to keep me company and at one point we went for wander over to Birmingham University to look at a building he had worked on. The docs said my counts had started to level out so hopefully with the GCSF working as well they will be climbing back to normal over the weekend.

Did a full day logged on at work today and was very productive including dealing with a Priority 1 problem with one of the servers. Tomorrow I'm having a Kidney GFR blood test like I did after the first round of chemo . This means being at the Nuclear Medicine department for 09:30 for an injection and then blood tests at 11:30, 12:30 and 13:30 so a bit of a long day but at least this time the Day Unit can take my bloods from my line and Gareth has said he will come along and keep me company.

I went for bloods at the Day Unit this morning, getting back in to the daily routine. As I am approaching my last round of chemo I've been thinking about what might lie ahead in terms of hospital work etc:- At the moment my counts are dropping from the last round of chemo. These should be recovered by the end of next week so I should be ready to go back in the hospital for the final round of chemo. Until then I will be working from home and going to usual blood tests. So w/c 23rd June some point I'll be in hospital ( in time for my birthday ). That will be in for a week and then a few days recovery when I am out, then back to working from home whilst my counts drop and rise again. I then need to have a CT scan and possibly other tests to review the results of the chemo. In the meantime I work from home. If it all goes according to plan I should have a complete response and be ready for my stem cell transplant which is scheduled for the 8th of September. So from about the 8th Ju...

I woke up feeling pretty good this morning so decided to log on to work and see how I went. As it was I managed the whole day and don't feel too tired at all. Today I gave myself an injection of Neulasta which is another type of G-CSF to help my white cells recover, similar to injections I had last time to help them that caused all the bone pain. I've been prescribed this new injection before my counts have hit bottom because it is slow a release form of the G-CSF so should kick in as my counts lower and hopefully won't cause the same bone pain issues. Even so I have also got some codeine based pain killers prescribed and at the ready. We'll see how things go over the next few days.

Today I went to the day unit for a dose of vincristine which is given through my line over about 10 or 20 minutes. I left the house with Dad at 13:00 and got back at 18:00. Now part of that was the traffic on the way home because of travelling in rush hour, but I did have over a two hour wait at the day unit as they were a bit short staffed. Still these things happen and at least I had a comfy chair. I've been feeling better today though I did have a bit of a tired patch whilst at the day unit that lasted about 40 minutes or so. I'll take it easy tomorrow and after bloods on Wednesday I'll look at logging back on to work. This morning I also started on the second four day block of dexamethasone steroid tablets, so from now until Thursday I'll be counting out the twenty little white pills each morning.

I've been vegetarian for about six years now but when I knew I was going to have some intensive chemotherapy I did think about whether I was going to come out of it all still a vegetarian. Recently I've been finding I've been thinking more about eating meat and reacting more to the smells of meat cooking around me. I've always liked the taste of meat I've just been a vegetarian on a sort of "moral" ground on the basis that it's possible to reduce your impact on the number of animals we need to kill to survive. There's really no reason why my condition and treatment should mean I can't stay vegetarian but sometimes you have to listen to your body. On Friday while I was slumped outside the day unit waiting my turn, for some reason, I began to fantasize or day dream about a cooked breakfast. It was potato waffles with a runny fried egg cut open and oozing over them at first but then it was the succulent lightly browned bacon and plump juicy sausag...

Things are starting to improve on the fatigue front. I've been feeling a more like my usual self. Still quite tired but not to the point where even the thought of reading a book seems like an effort. It's now a sort of general lack of energy reserve but at least I'm more functional than the last couple of days. I came back to the flat today and settled back in with the help of Mom and Dad, as ever, and it's nice to be back. Gareth's up from Portsmouth for the weekend on the first of a couple of trips as he completes the move back to Birmingham.

I started feeling a bit rough yesterday afternoon and rather tired and that worsened over the evening. Today has continued in the same vein. The fatigue is really far worse than I've had before. For eaxmple after having a shower this morning I had to sit on the side of the bath while I brushed my teeth as I felt too tired to stand and do it. (Luckily I have an electric toothbrush so actual brushing is ok :o). I got my Dad to take me to clinic this morning as there was no way I could drive myself. The doc explained that unfortunately this is all the affect of the chemo and it has a cumulative effect over multiple rounds. At the moment it's a case of just taking it easy because there isn't really a lot of choice. -- http://raetsel.wordpress.com

The last bag of chemo finished yesterday afternoon and I was able to go home with Mom and Dad when they came to visit on the evening. I spent the night at theirs as is usual after chemo and, though still getting up to pee quite regularly while all the fluids sort themsleves out, I had a more rested night. It's been a tougher week than perhaps I originally thought it would be as I had not taken into account the cumulative effects of the previous two rounds of chemo. Still three down and one to go.

The first bag I have to pack is this last bag of Doxorubicin. According to Ivy there are 197ml to go at 45ml a hour. So should be done by about 15:00 I've just seen the doctors and everything is fine so I can go home today. Just need to sort out tablets to take at home and day unit appoontments, so I'll probably sneak out with Mom and Dad at visiting tonight. This round has been a little harder than first time and this is to be expected apparently because of the cumulative effects of three rounds of chemo. I'll be resting up at Mom and Dad's for a couple of days. It's day unit for bloods on Friday and on Monday I'll also have a quick 10 mins of vincristine. -- http://raetsel.wordpress.com

I started my last two chemo drugs yesterday. The Vincristine runs in over just 10 minutes but the Doxorubicin runs in a litre of saline over 24 hours. That was started at 15:00 and I have to have another bag of that today. When that bag finishes tomorrow then in theory I'm good to go. So I might be home on Wednesday evening on current plans. As I was on 24 hour bags meant less disturbance in the night though I was up 3 times to pee. Overall I'm feeling ok still a little tired but nothing I can't cope with. -- http://raetsel.wordpress.com

12A for references to blood and furry tongues. Well my haemoglobin was still low so they decided to give me another blood transfusion of three units this time. They fitted two in over the evening and I'm having the last one as I type this. The blood has gone in much easier and quicker this time with no temperature spikes like the first time a couple of weeks ago. When I had my morning exam from the doc yesterday she picked up a new feature. Thrush on my tongue and throat. This is just a general name for a one of a number of yeast/fungal infections you can get as a result the chemo. I didn't have any symptoms from it the doc could the green fur forming and it has now spread down my tongue. I'm already on anti-fungal tablets, fluconazole, but in addition to this I now have to put some Nystan mouth drops on my tongue 4 times a day and hold it there for a couple of mins before swallowing. It has a cherry taste but the look and feel of runny custard. My hopes that this round of ...

Things have pretty much dropped in to the usual routine. Sleep is a bit disturbed by bag changes in the early hours and I'm carrying a bit of fluid so have had some fruzamide prescribed to help shift it. The fruzamide was in tablet form so is not as drastic as the IV injection but I didn't get the tablet until the 21:00 drug round so that kept got me up a bit more in the night. I'm not too tired now but doubtless naps will be the order of the day. Mom and Dad coming tonight so have whole of afternoon to sleep if I want. Nurse did say my haemoglobin level was a bit low yesterday so depending on today's results I might need another blood transfusion. I haven't felt like I did when I was anaemic before but then I haven't been as active and I've put tiredness down to sleep disturbance. We shall have to see what docs say today. -- http://raetsel.wordpress.com