T + 256 Happy 2nd Birthday MCL

Posted by raetsel at Saturday, May 30, 2009

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  appreciate it more than I would have two years ago.

T + 255 To boldly go again

Posted by raetsel at Friday, May 29, 2009

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 when I go back to the clinic which will also be in four weeks time, the longest gap between visits that I've had so far.

The other encouraging news is that my haemoglobin level was 11.9 . I can't recall it ever being as high as that since starting treatment. On the 22nd April it was 11.5 so maybe I am finally starting to produce my own red cells. Now back in February last year, before I had any treatment, my level was 13.7 so still a way to go get back to my normal levels but it is very encouraging.

T + 250 Antony & The Johnsons

Posted by raetsel at Sunday, May 24, 2009

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 first time. 

The final part of this introductory was the least appealing, whilst the performer was getting changed the music had an undercurrent of pig like noises to it but when she came on it switched to Hall of the Mountain King by Grieg and she pranced around a little like a horse. This piece of music didn't sit well with the two previous ultra-modern pieces. 

Unfortunately I've not been able to find out the name of the act and it wasn't announced on the night.

Then without any interval out came Antony and the Johnsons. The line up consisted of Antony seated at the grand piano, a bassist, drummer, two violins, cello and saxaphone. One of the fiddle players doubled up on the acoustic guitar and the saxaphonist sometimes played the electric guitar.

The sound was excellent and Antony's unique voice and haunting melancholic melodies came over  much more powerfully than they do when played on CD / iTunes. ( Though in part  that could be my speakers ). In between songs a couple of times Antony stopped to giving halting, rambly talks sometimes about the song he was about to play and sometimes totally random things like the hotel they stayed in last time they came to Birmingham. The effect was quite charming.

All in all it was an excellent concert only spoiled slightly by the very subdued lighting that didn't really work for us because of our high position but probably looked very good on a lower level.

T + 247 Not Going Out

Posted by raetsel at Thursday, May 21, 2009

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 managed to cook some nice dinners. 

I've been in bed by about 22:00 each night and asleep pretty much straight away. It feels a bit of a guilty pleasure just letting the TV wash over me but I don't have a lot of choice when I feel like that. Mind you I have been able to read a fair bit of Anthill and Stars by Kevin Duffy which has been very enjoyable.

On the social side however I have another outing tomorrow. Gareth and I are going to see Anthony and The Johnsons at the Symphony Hall. We booked this back in Jan and it has been an on again, off again since then as my condition has varied so it will be good to actually make it. We'll have a bite to eat beforehand somewhere in the environs of Symphony Hall / Brindley Place.

Finally, I've had good news about two of my friends this week. One was a contractor at our place who I've kept in touch with and he has just landed a good six month contract for a mobile phone processing company. The other is the chap whose psychology dissertation I reviewed, he's been offered a fully funded PhD at Birmingham University and I'm really pleased for him not least since my attempts at full time academia weren't quite so successful. ( But that is story for another day).

T + 241 Bank Restaurant Review

Posted by raetsel at Friday, May 15, 2009

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 of avocado with a soy and citrus dressing. The cheese topped crouton on the soup was a little uninspiring and had lost all crunch by the time it got to the table. The stock of the soup itself however had a heavy, rich velvety texture that worked well with the sweet caramelised onions. Gareth said the tuna was very good but over powered a little by the  dressing and some wasabi on the side would have been ideal.

For main courses we both opted for steaks. Mine was an 8Oz rib eye with BĂ©arnaise sauce whilst Gareth had a 6Oz fillet served on a bed of spinach and a large round hash brown. For accompaniments I had some fine green beans and hand cut chips apparently made from potatoes from Brobdingnag, Gareth had a large side salad in a light vinaigrette . Both steaks were succulent and cooked to a perfect medium rare. No need for any steak knives here. The piquancy of the BĂ©arnaise sauce was an excellent counter to the richness of the meat. The chips were crisp on the outside and fluffy on the inside, just how I like them.

For desert Gareth had a rich sticky toffee pudding with vanilla ice cream whilst I opted for the Malteser ice cream served in a brandy snap basket and somewhat oddly a pistachio biscotto which, whilst tasty, didn’t really work as even though I’d ordered a coffee with my desert it was mostly finished before the ice cream came. The Malteser ice cream itself was relatively light and pallet cleansing but the pieces of Malteser gave a little chewy, malty lift. 

The service was very good and our waiter was just what you want, attentive but unobtrusive.

Total cost including 4 cocktails, a bottle of water and the subtly hidden (on the bill at least ) 12.5% service charge was £114

T + 240 To Boldly Go Where No Man Has Gone.....

Posted by raetsel at Thursday, May 14, 2009

...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 catch up on a week's worth of broadcasts. ( On the way home I tend to listen to the excellent PM programme on Radio 4).

Wednesday was spent working from home. It was nice to be back using a Mac and have some piece and quiet to concentrate on a couple of things but overall I think the balance of two days in the office and three at home will suit me well whilst I am still recovering.

On the  night we went out to Bank Bar & Restaurant in Brindley Place , Birmingham to celebrate Gareth's birthday, well he claimed we were just out celebrating the fact I can go out for the occasional meal. 

I had a really nice time and it was  great to be able to eat out in a restaurant even if I did have to still follow a clean diet . I plan to write a more detailed review of the meal in the next day or two. (Well if I'm not going out that often I must savour every detail and inflict it on you all.)

T + 232 Light at the end of the Tunnel

Posted by raetsel at Thursday, May 07, 2009

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 office a couple of days a week and she said that I could as long as I avoided it if my work colleagues had any sniffles, colds, upset stomachs etc.

So this is really encouraging, albeit on a limited scale, I can start to re-integrate myself into civilised society. Compared to not going out at all this is a huge improvement for me. 

My next appointment is in three weeks with the usual proviso that if anything changes such as the rash getting much worse, any cold sniffles or a temperature  then I was get in touch with them any time day or night and they would access the situation. 

T + 231 Collywobbles in his Pandenoodles

Posted by raetsel at Tuesday, May 05, 2009

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 describe it, is that nervous feeling in the pit of the stomach and quivers you get as a small child on Christmas Eve (OK I still get this as an adult, I admit) accompanied by, as I say, these hand tremors. It's not serious and a few relaxing deep breaths settles it all down. I suspect it is related to my steroids and either an excess or absence of adrenaline.  I'll mention it to the doc at clinic tomorrow and see what she says.

Well Saturday morning saw me helping out again with Houston and then I had a lovely evening at my friend Andy's. He is a most convivial host and a very dear friend. (Someone buy his house ).

Sunday I woke up feeling a bit like I did the other Saturday, puffy eyes and low energy levels. Whether this was the result of overdoing it a bit over the last two days I can't say for certain but I doubt it helped. I managed to rally a bit by about 10:00 and logged on to work email just to see how the Houston issue was progressing only to discover a problem with one of our UK servers. I knew my colleague Yvonne had only had about 6 hours sleep in the last three days so even  though I was less than 100% I stepped up to the plate, as our transatlantic cousins say. It took a couple of hours to resolve the problem.

I went to Mom and Dad's for Lunch and was rather lacklustre and didn't feel up to doing the washing up as I would normally do with my Dad. The afternoon was spent watching the snooker on the settee first at Mom and Dad's and then back at the flat.

Monday followed much the same pattern, low energy levels and puffy eyes ( not that the two are necessarily related ). I also noticed what was the slight rash on my chest was more obvious. Again it wasn't until mid-afternoon that I felt a bit better and even then I had to have a nap in the early evening. I did manage, however, to make some delicious Borscht soup with the beetroot from the veg box, and two liberated from Andy's on Saturday night.

This morning the rash on my chest, which is almost definitely GVHD,  was much more noticeable and I decided it was time to put on some Betnovate cream rather than just the E45  cream I had been using. 

My eyes are puffy , the lids are sore and I was still pretty tired but functioning, just about first thing but have started to feel more with it now. It's a bit soon for me to need a blood transfusion and it doesn't quite feel like that sort of fatigue. It is more like the steroid withdrawal symptoms I had a few weeks ago when I was down to just 5mg a day. I'm currently on 5mg one day and 10mg the next so quite a low dose. 

Meanwhile Gareth has been away in Copenhagen on a much needed break and from the texts and tweets it appears he's had a great time which is just what he needs. This afternoon I am borrowing my Dad's car to pick him and his Mom up from the airport. ( I shan't be going in to the terminal building, I shall just drive by the pick up point, bundle them into the car with a liberal squirting of alcohol rub hand cleaner and speed off :o)

T + 227 Home Alone

Posted by raetsel at Friday, May 01, 2009

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 terminal, I shan't be venturing inside.

I have been enjoying watching the world snooker championships whilst I have sole custody of the TV remote. It took me back to this time last year when I was in hospital for one of my rounds of chemo and watching the snooker in the day room was a great way to pass the time.