Tuesday 30 June 2009

Day--? Lost count - about week 7 post SCT

Hey folks, Thanks for all the message's you've sent. I've put them all in the comments file from my last posting (day 36).
Life just seems so busy , I don't know how you all find time to go out and work for a living.
Phil, what am I going to do with all these F..ing gherkins that are growing in my greenhouse? Too bitter to eat as cucumbers. Thanks for the book and the post card. Hope it was a good break.
DM - yes good to see you in late August if you are over - I'm due back at work in September.
I saw my consultant last Friday. All well. Neuts. 2.68. Platelets normal. So all good. Paraproteins at 7 - these are what they measure to see if the cancer is still active. (Below 15 or there abouts is regarded as remission in my case) For you guy's they will be zero. They don't expect them to drop down much further for a month or few. Just as long as they don't go up we're all happy.
Strength and stamina are almost returning. At least I feel better. I'm on a course of steroids at the moment to try and tackle my nausea etc. Seems to be working so far.
Advertisement section: My very good friend Rob is tackling an 'end to end' in July. That's Lands End to John O'Groats on a bicycle.(The full length of the UK)
He's doing this with me in mind amongst others. For which I feel most humbled. I wish I could go too.. He's trying to raise some money for Leukaemia research in the UK and KWF Kankerbestrijding which is a Dutch cancer charity, -Rob's based in Amsterdam-.
So dig deep folks. Rob said he'd buy a pint for the first one so sponsor him on this site: http://www.justgiving.com/lejog-leukaemia-research/
Oh.....sorry that'll be my beer

Wednesday 17 June 2009

Day 36

I went for a bike ride last night. I must have cycled, well roughly, I think, about a mile. I ended up in almost the lowest gear. Before I set off I had a route planned of about 4 miles of gentle scenic cycling on the flat mostly. I had to turn back not far from home. I cant believe how weak I am. So now I seriously need to start a regular programme. A little further and faster each day.
I guess being in hospital for a few weeks and sitting round on my a**e for the last few months has contributed to a lot of muscle wastage, despite my best efforts to stay (I thought) fit.
Message to all you Myeloma people out there. Take as much exercise as you feel able. Little and often. Keep your strength up.
A friend of mine is about to embark on and end to end cycle ride (Land's end to John O'Groats). He's based in Amsterdam so is sponsored for a Dutch cancer charity. I'll put a link to it here when he sends it to me.
R's last A level exam today.

Tuesday 16 June 2009

Day 35 already

I can't believe I'm up to day 35. Time seems to go so fast. I my head I had all these little jobs around the house I was going to have done by now. A dab of paint here and there etc. But so far I've done nothing. I'd better get on.
Had one of the chickens (Margaret) put down the other day. She was rather off colour for a few days and not eating or drinking so it was the kindest thing to do. That just leaves Coco strutting her stuff at the top of the garden. We cant decide to get her some company or to let nature take it's course.
I'm pretty well today, no sickness and I had to shave as there was stubble growing! perhaps my head hair will decide to sprout as well.

Thursday 11 June 2009

Day 30

Hi all, My posting on this blog is poor at the moment. I think I'm associating it with feeling unwell, which I still do on occasion but generally I feel well. I had a cold last week but that seems to have cleared up quite quickly. They tell me that I will be a bit like a baby, in that I will get lots of colds and sniffles as I work my way through all the various strains of the common cold. Hopefully I'll avoid the more serious stuff like chickenpox, measles, shingles etc. I will get all my immunity jabs at about 6 months post transplant. Of course if all children had these then it wouldn't be a problem.
Thanks to all of you who continue to send me good wishes and goodies through the post and to those of you who drop in and see us. Much appreciated.
I had my Hickman line out on Monday. Not too bad an experience, though they said I rather 'liked' it in that my body was assuming it was part of me. I think this means that it took a lot of tugging to get it out.
We have now booked our Scottish trip, and I can supply more detail if you are really that interested.
I'll try and post more frequently.
C

Saturday 6 June 2009

Day 25

Hello again. I'm so busy at the moment I find it hard to find time to get this done.
Yesterday was clinic day. Sam and I arrived at 10:45 and were seen at 14:30. This is the price we pay. Still, all was reported as good. Neuts up to 1.08 since Tuesday. This means that I can clear out my small home pharmacy, as I only need to take 2 tablets on a regular basis, and one of those is for sickness. My daily anti blood clotting injection also stops. Also good as I'm black and blue after 9 months of it. My next appointment is in 3 weeks. So really we're on our own now.
On Monday I'll be getting my Hickman line removed, which I'm really looking forward to, as I'm not in to extreme body piercing. It's done under local anaesthetic, so we should be in and out pretty quickly.
The ******* chickens got into the veggie patch the other evening. As they have almost stopped laying I was sorely tempted to do the deed and put them out of our misery, but didn't. Grrr. Luckily they didn't do too much damage other than dig up a couple of butter nut squash, which we put back in. Lets hope they survive. The squash that is, not the chickens.

Thursday 4 June 2009

Day 23

Gerry, Gerry, Thanks for the package. Yes the dots are interesting. For those not in the know, Gerry sent me a huge package of Sweets (Candy) and other stuff, from the US . Still finding more varieties at the bottom of the box. Too kind.
Quiet day today, trying to get all Sam's washing done and one or two other personal objectives.
I feel OK but perhaps a little unwell. Too many sweets.

Wednesday 3 June 2009

Day 22

I'm well folks, sorry I've been quiet for a couple of days, when I haven't been so good. Came out of hospital and felt great for a day or two - GCSF and euphoria - then I went downhill, felt sick and very very very tired. Yesterday I went in for blood tests. Neuts- 0.68 WBC 1.3, lower than when I came out but still OK. After that I think I slept for the rest of the day and night and was grumpy in between. To misquote Grauco Marx to a hostess, ' I've had a wonderful day, but this wasn't it'.
My bike arrived yesterday, actually I think it may be a 'Vincitore' which is better than a 'Strada', which I am pleased about, but the paint job, though adequate, has spoilt some of the nicer features. For one the serial number is obscured so I cant find out for sure which model it is, or the age. I may need to get it resprayed.. Perhaps I should ride it first.
Yesterday was my 3 week post transplant anniversary.
So today altogether better, though still very weak and tired. Although I have eaten better today. Take it day by day and compare weeks I was told yesterday. Good advice.