MCL and Me

Well it was a bit of a struggle to get out of bed when the alarm went off at 06:00 but after a reviving shower I was ready for my first day in the office for nearly four months. I didn't quite need sat nav to get to Ashby de la Zouch but I had forgotten quite how far it was ( about 30 miles ). I swiped my card in at the Time and Attendance terminal and was pleased to see it let me clock in rather than display the message "Simon who?" It did feel a little strange to be back in the office. Though my desk has been used by various visitors in my absence it still had a bit of the Marie Celeste look about it not least because my cartoon a day Dilbert desk calendar was still at March 27th, the last time I was in the office. I had fun reading all the cartoons and catching up. The main thing about being in the office was seeing people I hadn't seen for four months and it was great to have a chat with them all and catch up. As far as actual work was concerned to be honest it wa...

I just spoke to the doctor that runs the day unit and he has reviewed my blood results and they are all fine. So I guess I didn't ask the right questions of the nurse yesterday. ( I refer myself to a poem of one of my favourite poets here ) Not only that the doc said he had also reviewed my CT scan from last Thursday and the results from that were very good as well so I won't need to have any more chemo in between now and the stem cell transplant in September. Apart from a day of "MOT" tests on 21st of August and once a week blood tests I'm now free of treatment until September and I can return to the office for a couple of weeks as well. If I had a tail I'd be wagging it.

You wait ages for a blog post and then two come along at once. I had my bloods done this morning and the nurse said if I rang after 16:00 the result should probably be back. I duly rang and the results were back but I knew the staff were busy because of shortages so only had chance to get the basic figure I wanted. That result was a bit of a disappointment to be honest. My white cell count was 3.8 and the normal range is 4 -11. Before treatment my reading was 5.4 It's just a bit on the low side so I'm not totally confident about going back to work this week. However I didn't get my neutrophil count which is the important one for baceterial infection from which I am most at risk. I'm going to ring the day unit tomorrow, speak to a doctor and ask to have all my results reviewed and see if it is ok to go back to work. I guess I shouldn't have built my hopes up to being able to return to work , go to the cinema , eat salad again etc this week. The thing is I feel perfec...

Well I've not written anything in the blog since Thursday, largely because there's not been much to say. I did a full day at work on Friday and had a productive weekend with washing, ironing and housework. I even managed a brief knock about with the badminton racquets in the garden with Gareth on Sunday afternoon. I'm off to the day unit for my blood tests and to have my line flushed shortly. I'll check my blood results from last week and then tomorrow I'll ring up for today's tests and hopefully they'll all be good enough for me to return to the office in Ashby de la Zouch on Wednesday.

Today I went for my CT scan at Selly Oak, having consumed my bottle of contrast fluid 24 hors before. It was all fairly straightforward, it just takes a while to complete. On arrival I had to drink about a litre of squash that had another contrast agent in it. I had to do this slowly over the course of an hour. Then once in the scan I have yet more contrast injected into a vein in my arm and the scanning processes itself takes about 20 minutes. So what with travel and all it takes up most of the day. The results will be available in a week or so and hopefully show I've had a good response to the chemo and don't need any more treatment before September and the transplant.

............not around the eyes. ( See Kenny Craig off Little Britain for the cultural reference ) Rated P(ossibly) G(ruesome) for some slight freaky pictures of me. My eyebrows have been thinning and thinning for a while now to the point where there are only about 10 hairs over each eye remaining, but I only noticed the other day that my eye lashes have fallen out as well. That is a fairly recent occurrence and it gives me a rather odd look as you can see from the two pics below. (Click to embiggen if you are feeling brave) Eyes wide open Eyes wide shut I don't know if it is co-incidence but my dry eye problem in the mornings where it's hard/painful to open my eyes upon waking has come back recently. I must start using my lacrilube artificial tears. Now for a competition ( don't phone in , it's just for fun ). What colour would you say my eyes are? In other news I had a very busy day at work today and I realised that due to regular day unit visits etc. this is the fi...

I was dead to the world when my alarm went off at 07:00 but I haven't felt particularly tired and managed to cope with a busy day logged on to work. At lunch time I went a walk to the post office which is about half a mile away and uphill all the way. I didn't feel too bad at all. I was a bit out of breath but not much more than I would have been before treatment started so I reckon my haemoglobin must be back up to a reasonable level. It usually recovers to about 11 ( the normal range being 13 - 18 ). Before I started treatment it was 14 and as I have mentioned before, this lower than normal level is still ok as I have no underlying respiratory conditions. A while back a doctor in the hospital told me that Yul Brynner did all that dancing about in the "King and I" with only one lung. However although I knew he died of lung cancer in 1985 I can't find any evidence ( on google of course ) that he had any lung problems before the 1980s. Maybe she knew something dif...

I went to the day unit for the usual bloods and to have the dressing and "bio-ends" on my line changed. I've now been switched to having to go just once a week to the day unit to have bloods and line service done rather than three times a week. Of course if my bloods start to show anything untoward then they'll call me in or switch me back to more frequent visits. Hopefully next week my counts will have fully recovered and I'll be able to go in to the office to work for a couple of weeks before the stem cell transplant.

I've had a pretty good weekend only slightly marred by a couple tension headaches but these have eased with the help of either paracetamol or co-codamol. Tomorrow I am at the day unit for bloods and will also drop off my now completed art work that I started in hospital. As usual my "artistic vision" outstripped my abilities but it was fun doing it. Click on the picture below to embiggen it.

I arrived at the day unit yesterday just before 09:00 and started my transfusion at about 09:30 I had three units of red cells and a unit of platelets which took most of the day and was finished by 16:30. Dad gave me a lift there and then I was able to persuade him to go home and come back and fetch me later. I was still feeling quite tired and I was able to have a few short dozes while sitting in the chair. By the end of the day I was feeling much better and a 10 hour sleep overnight also helped make me feel much more like my usual self today. I've still been a bit tired and managed to fall asleep on the settee for a couple of hours whilst watching the golf this afternoon. Hopefully I'll continue to improve over the weekend ready for work on Monday after I have been to the day unit for bloods.

I had a rough night Tuesday with the bone pain and a slight temperature. Yesterday morning I didn't feel too bad after my shower so decided I could make my own way to the day unit for my usual blood tests. Whilst in the shower I discovered a sore little lump in my right armpit and this coupled with a couple of nasty spots on my leg made me think I'd got some kind of skin infection that would need some antibiotics to clear up. The drive to the day unit was fine but as I was walking from the car park up to the unit I began to feel to really rough. I was tired and the bone pain was playing up and I also developed a nasty tension headache over the left side of my head and down my neck. I got some antibiotics from the doctor after he examined my lumps and bumps and he confirmed I'd need a blood transfusion this morning and to be at the unit for 09:00 I made my way back ok and called in at Mom and Dad's but felt worse there and ended sleeping for a couple of hours and then h...

I woke up today and not long after moving about I started to feel the bone pain I get when the GCSF starts going on my bone marrow. It's not too bad so far and paracetamol is dealing with it at the moment. This is a bit of a mixed blessing as it means my bone marrow and stem cells are being stimulated to make more blood cells so my counts should start to rise as a result. I doubt whether my haemoglobin will rise quickly enough so I'm still working on the assumption it will be a blood transfusion on Thursday. I chased up my key worker this morning about my CT scan and she has got a date for me of Thursday 24th July ( next week ). This isn't too bad though might be too close to Tuesday 29th July when I have my clinic appointment to review the results so I expect I'll have to move that appointment to the following Tuesday, the 36th of July ( you do the math ). I'm really pleased to have the scan sorted as the results of that will determine what happens for the next cou...

I've been feeling physically tired again today, perhaps less so than yesterday, hard to tell though I have managed to do some ironing this evening just for 40 minutes or so. I went to the day unit for bloods and then spent the rest of the day online working from home. At almost bang on 17:00 my mobile rang and showed "Number Unavailable", this usually means it is the hospital and indeed it was one of the nurses from the day unit. She asked me how I was, to which I replied "I was doing ok", and then she said "I've got your latest blood tests here" and I couldn't resist saying "Ah you're going to tell me I'm not doing ok." As I had suspected my haemogblin has fallen further from Friday down to 8.2 ( the cut off for a transfusion is usually 8.5 ) and my platelets are also still low ( didn't get the figure this time ). Since I'm managing the symptoms of the low haemoglobin ok and the low platelets haven't caused an iss...

Well I think my haemoglobin might still be dropping as today after having a shower I felt really tired and I actually got out of breath doing the washing up and that can't be normal can it? I've taken things very easy today and although I've felt physically tired I haven't felt the full blown fatigue I have felt in the past that affects me mentally as well so that I'm too tired to concentrate to say read a book. Whether this will develop into that sort of fatigue remains to be seen. It's only been 13 days since I started this round of chemo and in the the past the "danger zone" for fatigue has been days 16 - 20. This sort of physical tiredness is not too difficult to cope with, I just have to realise I can't do anything remotely physical like the ironing.

I had a call from one of registrars at the hospital this afternoon. This morning's blood results show a second and more major dip in my blood counts since the start of the week:- ( normal ranges shown in brackets). My neutrophil count is 0.1 (2 - 7.5), my haemoglobin is 9 ( 13 - 18 ) and my platelet count is 75 ( 150 -440 ). Of these the neutrophil count is probably the most significant as it makes me prone to bacterial infections, but it has been as low as zero after previous rounds of chemo and I've managed ok. All this means that for the time being it is the usual routine of blood tests Monday, Wednesday and Friday. I guess I was right to be over cautious in my last post. It's funny the affect knowing my blood counts has. Earlier today I was feeling pretty chipper and whilst I'm ok now I just have this slightly uneasy or overly cautious feeling now I know my counts are pretty low. Still this is hopefully the bottoming out of the counts and they will start to rise n...

I went to the day unit to have my bloods taken and whilst I was having that done the doctor came over to say that my counts had already dipped and then come back up to normal levels. This is a bit unusual as in the past my counts have declined steadily and taken quite a while to come back up, especially the haemoglobin levels. The doc suggested this recovery might be because of the GCSF Neulasta injection on Tuesday and it catching things just at the right time with its slow release. He has asked me to call on Monday to check what my counts are from today and then if they are still ok we can look at reducing my visits for bloods and general monitoring to just one or two days a week instead of three. I'm currently a bit sceptical and wonder if the early dip and rise is just a dress rehearsal for the real thing , but that is probably just me errring on the side of caution. The human body is an amazing thing so we'll see what happens over the next few days.

Doing a full day's work from home today and it's going well. I heard the postie deliver the mail a while ago and there was a louder than usual thump on the mat. There was a small package from Selly Oak hospital which I realised would be the details of a CT scan appointment and a bottle of the oral contrast you have to drink 24 hours before the scan. At first I was impressed that they had got me a scan date and sent the details out so quickly, however upon opening the package and seeing the date of the 14th August I realised this is the re-arranged scan from last week, not the newly re-arranged scan from Tuesday at the clinic. I now have three little bottles of this oral contrast and when my proper scan date comes through that will be a fourth bottle. If I drank them all I wonder if they would need the CT machine at all, they could just turn the lights down and look at me lit up like a Christmas Tree. I'll chase up the scan date tomorrow when I am at the day unit for bloods.

I went to the day unit for bloods as usual today and then logged on to work and after sorting out a week's worth of emails got back into the swing of dealing with calls etc. One thing I have noticed is that my taste buds seems to be a bit affected by the chemo. Everything has a slightly salty taste to it. This isn't to bad when you are eating savory food but it is a bit off putting when a Double Decker tastes salty. I've noticed it occasionally after previous rounds of chemo but this time it seems much worse. Hopefully it won't last too long, it hasn't in the past.

I went to the clinic today where I would normally see my consultant but, as she is on maternity leave until January, I saw one of the senior registrars. It was basically a routine chat to check on progress. The only significant change is to bring forward the date of my CT scan to as soon as possible. The reason for this is that if for some reason I have not had a full response to the chemo I have had so far, there is just time to fit in a another full cycle of chemo ( parts A and B ) before my scheduled stem cell transplant on September the 8th. It's slightly galling that I did have a CT scan booked for the 9th July which the doctors decided to cancel last week as they thought it would be too soon after the last round of chemo. Still it's not too much of an issue to get another one arranged and hopefully this will be in the next 10 days or so. It does make a lot of sense to have an opportunity to get in another cycle of chemo (if it is required) without having to re-arrange t...

Well the doctor came round to see me on Saturday afternoon and rather surprised me by saying I could go home that day subject to a quick check on a couple of blood tests. My Methotrexate level had already dropped sufficiently so that I could stop the 6 litres of sodabic fluids. The other blood tests were fine so when Andy came to visit me in th evening we created a diversion and I escaped in the ensuing confusion. I have to say I was still tired and had started to feel a bit nauseous, but I figured I could be be tired and sick at home just as easily as I could in hospital. The ondansetron tablets helped with the sickness and when I got home on Saturday evening I slept pretty much 12 hours straight. I took it nice and easy yesterday and kept up the ondansetron just as a prophylactic. My stomach has settled down and I am not nearly as tired. So that was round four of chemo. Not too bad overall so far. Now it's the usual blood tests Monday, Wednesday and Friday and see how this final ...

Due to an unfortunate timing of chemo and sodabic bag changes, follinic acid injections and peeing for England after a fruzamide injection I had a very disturbed night. I think between midnight and 04:00 I was woken every hour. Suffice it to say I'm knackered today. However I have a cunning plan to cope with this. I've had about a 90 minute nap this morning and another one is planned for this afternoon. Lunch has just arrived so that will do for today's blog. -- http://raetsel.wordpress.com

I finished my Methotrexate last night and started on the cytarabine about 22:00. This is the drug that made me really sick last time ( See entry Ruff Night back on 4th May ). This time I'd pre-warned the docs so I was kept on the ondansatron anti-sickness tablet and had an injection of it on standby just in case. So far so good however, no sickness. As is now the norm with getting 6 litres of fluids through Ivy I'm carrying extra fluid. Yesterday I had an oral fruzamide diueritic and that helped shift some of it but I expect I'll need an injection of it today to shift the rest. The injection is effective but it does mean you are peeing every 15 mins for two or three hours. Bag changes, alerts for air in the line from Ivy and up 4 times to pee meant it was another disturbed night. But I snatched the odd hour doze in between. -- http://raetsel.wordpress.com

......as they used to say on Vision On. Yesterday the hospital art manager and an artist assistant ( who is also a radiographer ) same round the ward inviting us to join their latest project. This consisted of having your silhouette drawn on a circular canvas ( yes they could find a canvas big enough) then you have a kit of glue, scissors, coloured papers, material, beads etc to make a collage of whatever you want. As the tennis was rained off most of the afternoon I made a start on mine and passed a happy couple of hours regressing to my childhood even down to getting the white pva glue on my shirt. ( We used to call this glue Marvin when I was at school for some reason). When my masterpiece is finished I shall upload a photo of it to the blog. In news of a medical nature my methotrexate chemo didn't arrive on the ward until about 20:00 but that worked out ok really as it means the first bag that runs for two hours was changed at 22:00 and the second bag runs for 22 hours ( not 12...

My Retuximab finished about 21:00 so I had a night untethered from Ivy. That didn't last however as by 06:30 I was hooked up to a unit of blood and a litre of sodabic. I'm due two units of blood today so that will make 7 units over three transfusions which I think is almost a whole personful. So if you haven't got round to thinking about seeing if you are eligible to give blood can I nudge you towards http://blood.co.uk? Nagging over. ( Or as some geeks would put it </nag> ) The litre of sodabic is basically sodium bicarb to increase the alkilinity of my blood and body fluids to reduce the effects my next chemo drug, methotrexate, has on my kidneys. I'll be on a litre of sodabic every 4 hours for the next few days so that will mean being woken in the night by Ivy's alarm and the nurses changing the bag around 02:30. The trick will be to try and get it timed with changing my methotrexate so I only get woken once but it doesn't always pan out that way. -- h...

Getting back into the usual hospital routine. I've been re-united with Ivy and just had my pre-meds for the Retuximab ( some piriton and hydrocortisone injections to stop reactions to the Retux ) I'll be given the Retuuximab over about 3 hours. I'm also going to have another blood transfusion as my haemoglobin is still low at 8.7 and the. Chemo will only make that worse. Whether I get this today or tomorriow I'm not sure yet. -- http://raetsel.wordpress.com