MCL and Me

After a bag of fluids to fully hydrate me I started my next chemo drug at 12:00 660mg cyclophosphamide in 500 ml saline over 3 hours along with 800mg Mesna in 500mg over 12 hours this is to protect my bladder from the cyclophosphamide. This regime is repeated every 12 hours for three days so that means I had to have a fresh bag of cyclophosphamide fitted at about 02:30 this morning along with more mesna. So that means alarms bleeping and general disturbance in the early hours. The guy in the bed opposite is on a similar regime but different timings which means from about 01:45 to 03:30 I didn't get much sleep so I listened to BBC radio 7 until I dropped off. I slept through to obs at 06:00 I'm not too tired at the moment but suspect a nap will be on the cards between visitors today. My brother is coming in the afternoon and Andy this evening so mom and dad get a day off. -- http://raetsel.wordpress.com

Yesterday evening I started my Rituximab through my drip ( no further upgrades to Ivy ). I was able to have this at a faster rate than before because I didn't have any adverse reactions. By 20:30 that was all done so I could be disconnected from Ivy for the night. I also had my dexamthasone steroid but instead of 20 x 2mg tablets to swallow it was given as an injection into my line. A much easier way to have it, whilst I am in hospital anyway. It was exactly one year ago today that I got my diagnosis of Mantle Cell Lymphoma. I'd had the biopsy on 21st May and went to the Birmingham Treatment Centre at City Hospital to see the ENT consultant who had done the biopsy, or rather one of her team. I'd always known that an underlying lyphoma could be the cause but it had been played down (probably because of my age). The registrar I saw checked my biopsy scar asked a few questions about how I was and then opened my notes and said something along the lines of "I'm afraid ...

Well. It has been an eventful 24 hours. The doc saw me yesterday afternoon and said I should get a hickman line in tomorrow ( I.e today 29th ) but just in case they would fit a PICC line to avoid delaying chemo. Different doc this time who tried and failed on the right side where the last line went but appeared to succeed on the left side. However when the xray came back the line had taken a wrong turn and was headin back the way it came in another vein. They were going to adjust it but it wouldn't flush so they took it out after confirming the hickman line would be done today. Later that evening another doc came to fit a canula so I could have sedation when they fit the hickman line. It took him four different tries at different sites before the canula was in. Don't know what is up with my veins they never used to be this bad. Anyway after a restful night by 09:00 this morning I was in the xray theatre being prepared for the hickman line. Unfortunately the canula did not wo...

I 'phoned the ward at 09:15 this morning expecting to be told to at least call back after 12:00 when the docs had done their rounds, but the bed was all ready for me and I was asked to get here for about 11:00 I am now back in room 6 but bed 8 this time. Only one bed in this room I haven't been in. Wonder if I get nectar points when I complete the set? There are a couple of familiar faces on the ward so we have been catching up with where we are with treatments etc. This round of chemo is a repeat of the first one I had at the end of March so hopefully I know what to expect. The first job will be to get a line in of some sort. Though I am now a priority for a hickman line they are talking about a PICC line again to start at least. -- http://raetsel.wordpress.com

Not as paradoxical as it sounds. I saw my consultant today and she confirmed that my blood counts are all back up to normal or near normal levels. In fact my white cell count has had a "bounce" and over shot the normal levels. As I don't have any infection or temperature the high level is just caused by over production from the GCSF injections. ( This brings to mind images of groups of teenage granulocytes congregating on artery corners , bored and looking for trouble). As my counts are ok I am now ready for my next round of chemo ( which is a repeat of the first round, the HyperCVAD bit). So I have to ring the ward tomorrow to see if there is a bed free. This is a bit quicker than I was expecting but that's fine. The sooner I start the sooner I finish and there has been a bit of a delay between rounds two and three. ( Well technically rounds 1B and 2A ). The consultant had quite a detailed conversation with me about the treatment protocol for my donor stem cell tr...

The bone pains have basically all gone but for the odd twinge in my one hip now and again and I feel much more like my normal self. I managed to do the ironing yesterday and didn't feel exhausted by the process. I'm off to see my consultant at the clinic tomorrow where hopefully it will show my counts are also well on their way to normality and we can look at scheduling the next round of chemo for some time next week. When I get back from that I'll log back on to work and start going through all those lovely emails.

When I went to the day unit yesterday I explained about the bone pain and the doctor looked at my counts and decided I could stop taking the injections ( I had 2 days left) as my counts were coming up ok and will cope on their own. I'd taken one that morning so still had the nasty evening bout of bone pain that seemed to be the routine but hopefully from now on I'll start to feel it less and less. It has been quite a tough week. Probably the hardest for me to deal with since I started treatment back in March. It's been a combination of things again, headaches, tiredness, infection and worst of all the bone pain from the injections. Still I've coped so far and this morning I am feeling a little more like my old self. To follow on from the words of the title song for TW3 "That was the week that was, it's over let it go."

Just like the Verve said. Unfortunately after my post yesterday the bone pain didn't really abate much despite the paracetamol and it was not a pleasant few hours yesterday evening. However by 22:00 the pain had subsided a bit and I could take a couple more paracetamol. This kept me going until I woke about 05:40 feeling the pain again. More pills and I was able to have a decent lie in. A fresh injection in the morning but during the day it's been ok just a dull ache mostly kept at bay by the pills. It must be something about when my stem cells are most active or when the effects of the injections kick in but after about 16:00 the pain comes back with a vengence and paracetamol don't seem to touch it. When I go to the day unit in the morning I'll ask for something stronger. They did offer me some codeine last time I had some bone pain but at the time paracetamol was doing the job. This time I'll take them up on their offer.

I gave myself my first GCSF injection this morning and then went to the clinic to have my bloods taken. Back there on Friday. I've spent the rest of the day day taking it very easy just sitting and reading or lying on my bed and reading. A very relaxing day, only slightly marred by the pulsating bone pain in my lower back and hips that came on at about 16:00 showing the injections are working already. I've taken a couple of paracetamol and hopefully this will calm things down. They have been pretty effective in the past.

When I woke up this morning I felt a slight tenderness in my neck and brushing my teeth on one side was just a little tender too. I was due to see the doctor's at the full clinic today so I had the ideal opportunity to mention it. The clinic was really busy when I got there, literally standing room only. They saw over 60 patients today. I developed a nasty headache whilst there but I got my temperature checked and it was fine. A couple of paracetamol eased the headache whilst I waited an hour and 20 mins past my appointment time. I saw the main registrar who treated me when I had my last cycle of Chemo. He felt my neck and looked in my mouth and said he couldn't see anything obvious and to just monitor my temperature closely. He checked my blood counts. My haemoglobin had come back up from 9.1 to 11.5 which was better; though still below the range of 13-17 it was not low enough to warrant another transfusion as my symptoms had eased. My neutrophils were recovering slowly up fr...

12A - Contains 1 or 2 adult references to the nether regions. Pre-amble With any blog of a personal nature there is always the question of how much to include. If the blog is only read by anonymous readers, people you don't know, then it's less of a concern but when it comes something you know is read by family, friends and colleagues then it can become an issue. With a blog about a medical condition that's even more likely to raises these sorts of issues. However I want to try and be as honest as I can in this blog to show what it is really like to deal with this treatment and to try and show it warts an all ( almost literally as it happens but I'll get to that in a moment). For those few people who stumble on this blog who are having to deal with something similar or know someone who is I think being open is important. As for the rest of you, stop sniggering at the back there. Details Yesterday as well as feeling under the weather I noticed a quite firm and slightly ...

I've been feeling rather under the weather today. Hard to describe really, apart from a headache I just feel generally a bit yuk and rather tired. My temperature has been teasing me too, it's been up and down all day only briefly touching 37.7 which would be cause for concern or at least a call to the ward if it stayed at that but then it drops to a perfectly fine 37.2 I'm taking it very easy today, lots of naps and general vegetating listening to the radio. I'm taking my temperature every hour or so just to be on the safe side.

PG rating only if you can't stand the site of blood even if it is in a bag. By the time the blood was all sorted I started my transfusion at about 16:00. After having my cannula fitted on the day unit I was taken up to a bed on the Bone Marrow Transplant Unit. This is where I will be for a large part of my time when I have am stem cell transplant in a couple of months time. Each room is like a little hotel room with an en-suite toilet and shower, fridge, small TV and Hi-Fi and big HEPA air filtration unit. This is where I'll be spending a couple of weeks in semi-isolation whilst my new stem cells settle in. So it was nice to see what the setup is like. Blood transfusions have to be done relatively slowly usually over two to three hours so the first bag wasn't finished until 19:00. Part way through the second bag when the nurses did my obs my temperature was up to 37.9. This can happen with a transfusion so they had to slow down the rate for the second bag and my temperatur...

The words are the first line of the song Bread and Roses from a favourite band of mine, Mr Hudson and the Library and particularly apposite for today. I was feeling a little off yesterday afternoon after returning from my walk and more out of breath than I would have expected. This morning the walk from the car park to the day unit also tired me out more than it should have. I suspected my haemoglobin levels might be a bit low and mentioned this and the slight breathlessness to the nurse. She checked with the doctor and I am a bit anaemic according to my blood results from Wednesay, with a reading 9.1 when the normal range is 13.5 to 17.5 g/dl for a man . ( That's grammes per decilitre or per hundred millilitres ) It's possible it's dropped lower since Wednesday. Therefore I'm going to have a blood transfusion of a couple of units this afternoon once they have cross matched my type and got a bed sorted out for me. I'll be able to go home after the transfusion and...

Last night I finished my Fluloxacilin antibiotics that I was taken after having my PICC line removed. That means I am now only taking one Allopurinol anti-gout tablet in the morning and using the anti-bac mouthwash four times a day. Quite a reduction from when I was on steroids, anti-fungal and stomach tablets as well. Working a full day and I have also been able to take a turn round the duckpond today ( well a turn and a half in fact ). Not as warm today but pleasant enough.

Anyone remember Game for a Laugh I went to the day unit for bloods as usual this morning then logged on to work in the afternoon. Whilst at the day unit I bumped into my fellow inmate from my last sojourn who was moved into isolation when he got bug. He's been out since Monday and was looking well. It was nice to catch up with him and doubtless our paths will cross over the coming months. So the Game for a Laugh reference, well since the end of April I have been using the Google Analytics service to provide stats for this blog and see how people are logging on etc. It shows that I have had 219 hits from 75 unique visitors. I'm not sure how the 75 unique visitors translates to actual humans as it is possible that if you disconnect and reconnect to your Internet Service Provider you get a different IP address and could appear as a different visitor. ( Though if google use http cookies they might be able to spot this). In comparison my other technical blog http://raetsel.wordpr...

It was a lovely day again today and so at lunch time I decided to get a bit of exercise and walk down to the local park and have a turn round the duck pond. It was great to get out in the fresh air and increase my activity levels after being so sedentary for so long. I've put quite a lot of weight on since I started treatment and though I can blame part of this on the steroids and other aspects of the treatment I have to take some responsibility myself. So I'm trying to eat a bit healthier and get a bit more active. Here are a couple of pics from the park. The M6 runs about 30 yards away from where I was walking but I imagine the "gentle roar" of the traffic is the sea breeze. There were some new additions at the duck pond as well. I've had a pretty productive day at work. My first full day for a couple of weeks and I haven't felt too bad. Supposedly gentle exercise can help with the fatigue symptoms of chemotherapy.

I went to the day unit to have my bloods taken this morning and everything is ticking along fine. Back there on Wednesday for the same again. I'm about to log back on to work and catch up with all the emails etc. though first I have to get someone thre to reset my account as the password has expired and I can't reset it remotely. This will be the pattern for the next week and a bit I would imagine. Working from home when I'm not at the day unit. Next Tuesday I see my consultant again and by then my counts will probably have recovered or be recovering and we can plan the next round of chemo which is a repeat of the very first one.

Having been in hospital three times for overnight stays ( albeit for one I was released the same day ), I have built up a list of stuff that I take with me. Usually I manage to forget a couple of things and ask Dad to pop to the flat and bring them in on the evening. However now I have made a list of what I need and I thought it might be interesting to share it with you ( as well as making a handy place on the Internet to check the list should I ever need it). It's not exactly travelling light but it does fit into one day pack and one shoulder bag. So here we are in no particular order: Pyjama Trousers Dressing Gown Toiletries (Deodorant, toothpaste, toothbrush) Current Medications Andrex Moist Toilet Tissue ( to counteract NHS 100grit sandpaper ) Wet Wipes Crystalized Ginger ( to help with nausea, Ha!) Mobile Phone Mobile Phone Charger Bedside Clock Herbal Teabags (Green Tea, peppermint etc) Current Book Small Note Book A4 Journal 3 x Pants 3 x Shirts Slippers Fleece Ipod Shuffle...

I had a really good night's sleep in my own bed last night and by about 09:00 this morning I was sitting on my balconette ( not a balcony, the estate agent's particulars were specific on this ) drinking freshly brewed black coffee, eating a warmed pain au chocolat and reading the last few chapters of The Northern Lights by Philip Pullman. It was a very nice way to start the day and I've continued in a similar relaxing vein.

I'm currently sitting outside the day unit waiting to have my bloods taken. This will be the routine for the next week or two. Blood tests to check my count every Monday, Wednesday and Friday. I had an ok day yesterday, my energy levels are returning to normal and I've been able to drive myself to the day unit today. I wouldn't say I was at 100% but on the way. My left arm is still quite cracked and sore but improving slowly. My right arm is much better. The swelling and redness has gone down. There's still a bit of a hard lump along the vein but it's not as bad as it was. The plan is to spend the weekend at the flat and see how I go. Hopefully that'll be fine and I'll be logging back on to work after clinic on Monday -- http://raetsel.wordpress.com

Well I didn't have quite as good a night as I'd hoped. I struggled to get off to sleep a bit, probably because I had napped a bit too much during the day ( not that I had a lot of choice in the matter when my eyelids just closed of their own accord). Then I was up three times for a wee in the early hours as the last of the fluids worked their way out of my system. My left arm has had a reaction to the plaster they put on it after the aborted PICC line attempt and is rather sore, particularly within the crook of the elbow which means the skin keeps cracking with the movement of my arm. Overnight I had a problem in my right arm where the PICC line is and the area above it was hard, painful and a bit swollen. Add to this still feeling fatigued and a bit constipated/bloated and I was feeling very sorry for myself first thing. It was the fact it was multiple things to deal with I think that made it worse. However divide and conquer is the maxim. Some paracetamol helped with the pain...

Just a quick update. Had an ok night and shifted all my fluids so I've come home to Mom and Dad's to rest up. I'm pretty tired and low energy levels. Think I've got some classic chemo fatigue so I'll be taking it easy. Usual meds plus eye drops every two hours. Back to day unit for blood tests tomorrow.

I'm pleased to say I've not had any more nausea attacks. I'm on regular oral ondansatron and that is keeping it under control. After a light breakfast I was able to eat normally yesterday. It was a busy night with bags changing for fluids and cytarabine as well as 3 hourly injections of follinic acid ( or is that fenolic? I'll have to look that up ) (It's folinic acid, one 'l'. there's a good description of how it is used here: http://www2.netdoctor.co.uk/medicines/100000423.html) My fluid levels are up and I was carrying 4 litres yesterday some oral fruzamide diuretic got that down to 2 but I've noticed I get breathless when I exert myself. So the doctors are prescribing IV fruzamide. I had that last time and it is a real kidney cruncher so I'll be weeing to olympic standard for today but it does the job. My energy levels are low today and my blood pressure is a bit low too. I think this is just the chemo taking it out of me. I'm just taki...

Possibly Gruesome - Contains descriptions of vomitting. I had a "ruff" night because I spent part of it being as sick as a dog. ;o) I finished my methotrexate yesterday evening about 1930 and a bit later started on my last new chemo drug 6660mg of cytarabine in 500ml of saline given over two hours. The cytarabine was all finished and flushed out my line by about 22:30 and I would have the same dose 12 hours later. I noticed my stomach started to feel a bit off around 23:15 so I let the nurses know. They said they would have to check if there was anything written up for me for antisickness that they could give to outside the regular schedule. Meanwhile I had got a couple of sick bowls ready and at 23:45 I was sick and up came my evening cocoa ( about 350 ml as the bowls have measuring lines on them for keeping track of fluid output). That wasn't too bad as it came up fairly easily with no retching and I felt relief from the nausea. Unfortunately 10 mins later back came th...

Following comments from Andy and Gareth about breakfast reading ( many a true word is spoken in jest ) I thought I would introduce a classification system for posts. U = Unlikely to upset anyone 12A = 1 or two adult references to bodily functions and the like. PG = Possibly Gruesome if you are having brakfast G = Gruesome - real blood and guts stuff E = Emotional - contains touchy feely stuff about how I feel may include depressing sentiments. Joking aside for a moment, I haven't posted much stuff at all about how I have been feeling apart from the odd mention here and there. That is mostly because so far my mood has been pretty good and I have not had too much tough stuff to contend with. There will no doubt come a time when I hit a rocky patch and I do want to be as honest as practical about the whole experience of MCL in case other people with the disease or similar are reading. ( According to stats on the blog I have 21 unique visitors so I suspect that is all people who know m...

I was re-united with Ivy yesterday afternoon but my ever faithful drip stand and pump have had an upgrade. The stand itself is of slightly lighter and slimmer tubing reducing the overall weight and best of all she now has 5 wheel drive. The wheels are on the end of 5 legs that are in a star formation like the base of an office chair. This greatly improves stability making the bump in the floor between the day room and the corridor easy to handle. The pump itself is also improved, it has an electronic eye that attaches to the drip reservoir to monitor the drops. This means it's more accurate at assessing the amount of fluid delivered and only alarms when the bag is empty or the required amount has been infused. Yesterday afternoon I was given 800mg of rituximab in 500ml of saline. The infusion is started slowly and gradually increased evey 30 mins. This is because the only real side effect is some people get an allergic reaction and the infusion rate has to be reduced to alleviate i...

The registrar came to see me yesterday afternoon and explained they were still struggling to get a slot for me to have a central line fitted but they wanted to press on with treatment and so they were going to try to put a PICC line in. That's a Peripheral Intravenous Central Catheter or something like that. This is a line that goes in one of the veins in the crook of my arm up the arm and along the chest into one of the big veins near the heart. This is a procedure they can do on themselves on the ward. The snag is that it depends on the quality and accessibilty of the veins in your arms and then how easy the route is up the arm and along the chest. They tried my left arm first. I felt a very sharp scratch ( more than you feel for a normal blood test ) and then there was a warm feeling down my arm. I thought this was something they had injected but when I looked across ( I always look away at any initial incisions ) the warm feeling was in fact caused by the small river of blood r...