MCL and Me

Today is the second birthday of my diagnosis of Mantle Cell Lymphoma. I wrote last year of what the actual experience was like of hearing the doctor say it was lymphoma so I won't go over that again. Two years seems an age ago and it seems to have gone really quickly at the same time. Whilst I've tried not to let it rule my life and define me (no really, I have tried) it is hard to remember what life was like pre-MCL.  Gareth, my family and friends have had to go through it all with me as well and they have been a great support each in their own way, though I do feel I should give special mention to Gareth, Andy and my Mom and Dad who have been amazing. I've been tremendously fortunate to have a good support network.  Over the past two years I've had my low spots of course but just at the moment things are slowly starting to turn the corner and I'm feeling very positive about the future.  All this lovely sunshine clearly helps and yes I think I can say I do  appre...

The title of this blog post is applicable in two ways. Firstly on Monday I went to see the new Star Trek film at the cinema and secondly I went in to the office again this week having avoiding it last week because of a sniffle doing the rounds. I'll write up more details of my cinema visit and what I thought of the film at a later date.  Yesterday I went to the transplant clinic for the first time in three weeks. Since my last visit the rash on my chest from the GVHD had  just been skulking about like a sullen teenager, not really getting any better or worse, so for the last week I have been blitzing it with the Betnovate steroid cream three times a day. That's had some good results and the rash has virtually gone. I can't use the cream for long periods so I've stopped now and will see what happens. The doc is pleased with my progress overall and decided to keep me on 10mg a day steroids for the next four weeks and see about reducing to 10mg one day and 5mg the next w...

On Friday night Gareth and I went to see Antony at the Johnsons at the Symphony Hall .  The concert was set to start 19:45, 15 minutes later than stated on the ticket which at least gave me time to make our way up  the 47 flights of stairs to our seats in the second row of the grand tier . Before Antony came on there was what was described as a "short introductory act" rather than a support act. This consisted on a half spot on the front of the stage where, to the accompaniment to quite industrial, metallic, slightly discordant electronic music, a woman came on made various hand movements wearing a white diaphanous robe. Yes it was as weird as it sounds but strangely affecting all the same, though probably better if you were closer to the action.  After a brief costume change into a bird-like costume the performer came back and the spot changed to show a pattern of broken lines which resembled a nest and the performers movements were like those of a fledgling flying for the ...

Well after all last week's excitement this week has been much quieter. The weekend was the usual quiet mix of relaxation and chores, the highlight of which watching the Eurovision Song Contest on Saturday evening, complete with scorecards. I haven't been back to the office this week as I had the nod from work on Monday that there were coughs and sneezes in the vicinity in particular from someone who had been to continental Europe and I certainly don't want any of those nasty foreign germs. :o)  This has been a bit of a disappointment as I really enjoyed my couple of days in the office. However the tide of snot is ebbing by all accounts ( sorry couldn't resist the imagery ) so hopefully I can go in next week. Work has been pretty intense this week with several disparate tasks that have required extended periods of concentration. I've managed ok but at the end of the day I am quite tired and only feel like vegging out on sofa watching TV of an evening, though I have m...

Bank Restaurant   is located in Brindley Place along side the canal. After a cocktail in the bar, a non-alcaholic berry concoction for me and a cosmopolitan for Gareth, we were seated at a table for two against the full length glass wall that runs along main dining area. Our table gave us a view of the NIA across the  canal basin, sided by flats that were probably now worth less than the value of the meal we were about to have. This main dining area has an impressive look to it with its rows of white table cloths with simple, elegant tableware accented by the red leather and black wood seating. The menu though on first glance, presented as it is on a single large card, seems a little limited but there is plenty of choice of fish and meat and a couple of vegetarian dishes. The specials of the day included asparagus with soft poached egg and the fish of the day was sea bass in a salt crust.  For starters I had the French onion soup and Gareth had the sushi grade tuna tartare on a bed ...

...for about 8 months. On Tuesday I made my way into our offices in Ashby de la Zouch for the first time since the 20th August. ( I know it was that day because that was the date left on my Dilbert desktop calendar. Some fun catching up there ). It was a bit tough getting up at 06:00 instead of my usual 07:00 but the journey in wasn't too bad and by 08:00 I was sitting at my freshly dettol anti-bac wiped desk. Mind you , you go away for months and when you come back you find someone has adjusted your chair. Well really. However the day went well, it was great to see the office folks again even if I spent a lot of the time politely refusing handshakes. It took a while but I was able to settle down into the work and it was nice to  have bustle of the office even though it's not as busy as it used to be.  Today has been a repeat of Tuesday and to help on the journey in I have been listening to the Archers ' podcasts. It transpires that two journeys in are just long enough to c...

I went to the transplant clinic yesterday and saw my usual consultant. She had a look at the rash on my chest and neck, which had abated somewhat after just one day's use of the betnovate steroid cream. She said it is definitely a case of limited but chronic Graft Versus Host Disease and it could grumble on for months. She recommended upping my steroids from 10mg one day and 5mg the next to be 10mg everyday and stay like that for the next month. I must admit my heart sank at the prospect of another month on steroids as that meant another month in Purdah so I thought I would just see how restrictive I needed to be. She asked me what I had been doing up to now and I said the very occasional visit to the local shop when there was literally no-one else in apart from the shopkeeper. Rather pleasingly she said I could sneak into the occasional cinema or restaurant ( good quality of course, not Filthy McNasty's Greasy Spoon - my words not hers ). I asked about going in to the offic...

Well it's been a funny few days. Funny peculiar I should say, not funny "ha-ha".  Just before the close of normal business on Friday evening, with me looking forward to a long break off work until Thursday, I got involved in helping with an issue for our Houston office that on and off took up, for me, most of the night until about 23:00. (Other worked on to it long into the early hours but I didn't want to push my luck more than I already had). I coped pretty well with the extra work but one thing I've found is that when I get for the want of a better word, excited, about a work problem I end up with an occasional attack of the collywobbles,  by which I mean a sort of quivery feeling and slight tremors in the hands that reduce my fine motor skills like writing, typing or moving the mouse. ( I see from the link given that collywobbles means something different but I've always thought of these quivers as collywobbles, but I digress.....). The best way to describ...

Has it been over a week since my last blog. Oops. Mind you it has been a rather busy week at work so at the end of the working day I'm afraid the last thing I want to do is stay sitting at my screen.  Also not much has happened on the medical front and there was no clinic visit this week to report on. I'm still on my tapering dose of steroids and there is a little patch of what could be GVHD on my chest but it's only a very mild skin discolouration. I'm just treating it with E45 cream at the moment. I did have a bit of a funny turn on Saturday morning where I completely lost all my energy and felt quite rough but it only lasted until mid-afternoon and I've been fine since. I thought it was the return of steroid withdrawal fatigue but it doesn't seem to be. I've been home alone since yesterday as Gareth has taken his Mom on a trip to Copenhagen for her birthday. I'm picking them up from the airport on Tuesday evening. Well from outside the airport termina...