Just thinking about restarting the blog as I’m about to restart treatment. It may make things easier to have a single point of contact. I don’t know if you get notified that I’ve posted but here goes!
Hi all. Well, here we are at the end of September, and what a wonderful month it’s been here in Cambridge. I always think it’s the best month of the year.
On Monday I went for the first of my ‘childhood’ immunisations. This one was for Meningitis. No wonder babies of 6 months scream when they get this one. Not the most comfortable of injections. This has no reflection on the nurse who administered it, as her technique was very good, (I know, I’ve had a few injections recently) but the vaccine was rather thick.
I’m still working 2 days a week. I do enjoy it but I find I am very weary at the end of the day. Everything happens so fast! I think I’ve got used to a slower pace of life. I hope to move up to 3 days soon as I can’t achieve everything I want to in 2
Jeanette and I are planning an Orchard (sounds grand, but only 3 to 4 trees) at the end of the garden and with some help form friends have almost finished clearing the scrub and weeds. The next step is to get the fence fixed. We spent a day on Sunday at a show where there were fruit tree experts and they had lots of old local varieties which were very interesting. We have a tonne of info to work through before we make decisions on what to buy. But November is planting month so we need to get a shift on.
Keep well all of you.
I’m not sure if any one is still reading this after so many months. Yesterday I saw my consultant and he has given me the nod as regards remission. My latest bone marrow biopsy shows between 1 and 2% infiltration and 5% would be OK. This means I can go about my life as ‘normal’. I can’t pretend that I am, so it’ll take a few days to sink in properly. I’m not cured but at least we’ve got it on hold.
It’s Jeanette’s birthday on Sunday and she says this is the best present she could have had. Without her I wouldn’t have got this far, so much of my ‘wellness’ is down to her strength and care. x
I saw my consultant last night. I’m due for a bone marrow biopsy, probably at the end of the month. This is to check on what is going on following the SCT and to supplement blood test results. I had some blood taken yesterday but I won’t know the results for a little while. I also requested that I have a scan of my hip as this is still causing me grief and pain most days, though it is controllable with pain killers.
I hope to be back at work at the beginning of September and have a meeting with my manager next week to discuss my phased return. The thought at the moment is to go back for two or three days a week and build up the hours over the next month or three. In a way I’m looking forward to being back. We’ll see.
I just wanted you all to know, if you are still reading this, that I am feeling good at the moment. Just got back from 2 weeks in the far north of Scotland. There can’t be many places left in the country that are as beautiful or as quiet. Here we can hear the constant drone of vehicles and aeroplanes, but to step out and listen to absolute nothing was a real treat.
My hair is just starting to grow back. My head resembles something like a small duckling. hopefully in a few weeks it will be presentable.
I’ll try and post more frequently from now on.
Well done and thanks to Rob and crew for completing the journey from south to north. Next year we’ll all tackle Mont Ventoux of Tour de France fame?
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
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.
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.
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.
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.