Hi Tom
I only had 4 cycles of RCD before my ASCT .As both Eva and Peter have covered just about every point very succinctly I can only add that whatever decision you make will be the right one for you, if you choose asct it will not be pleasant but you will endure it and if you have questions and need answers someone out here will always answer if they can. I vividly remember that trepidation and excitement….. I have also felt it at times on this journey and it is a weird feeling, is it because we are about to take what is a potentially life saving journey but also a very personal choice too.
Good luck with it.
Love Helen
Hello Jo, Jean, Vicky, Ali
I apologise for the bulk nature of this reply, but thank you so much for your cheery replies:-)
I got the parking space back!….. And a little note from personnel asking how I was!
Jo are you managing your new treatment well or is it very exhausting?
And Jean I hope Frank continues to improve? How is the footy? Watching enough of it?
Vikki has Colin started to take things more slowly again?
Ali I can fully sympathise with your mum, I've had pain in my back for years …. arthritis caused by lifting all those patients back in the day before hoists, so I wasn't really sure if it was worsening until recently. Anyway, MRI scan next week to find out if any hot spots. Cornwall is the 3 rd of May then Glastonbury in June, (we are dropping our kids off there, mind you I wouldn't mind a bit of glamping, one of my work colleagues is gigging there too this year, probably on a different stage to the stones but hey it's a start! , anyone got a spare ticket?)
Dear Wendy, Eve, Tom, Andy and Tom
Am only a one finger typist on this iPad, and these posts take me ages to do, hence the brevity of them, and don't want to drop iPad in bath, ( most comfortable place for bad back after work :-0 !!!!!)
Hope your results are good on Friday Wendy, you can certainly sit in the seat next to me on this roller coaster, how are you getting on with work since the change of circumstances, I'm seriously wondering what to do next. Unfortunately I don't want to give in but I do wonder.
Eve The upsii- downyness and not knowing is hard, apparently neuts were last normal in June and just dropping slowly since. I can understand your worry about Slim, just get off in that new van, you can always come back if he gets ill.
Tom.. It's funny about trying to forget, as appointments get closer the anxiety steps in and you just can't help it, I think that's why I've not asked about my results recently. I've enough other things to get on with. Hope your appointment went well today and bloods are good.
Andy… it's really interesting that after a week in the sun the sflc's went down a bit. More holidays then! Will you be around Newcastle at all?
Veg are the only things I really like eating now Tom! And I'm not on face book so you must post photo in onesie on here for my delectation?
Love Helen
Hi Sue
I've never had a PET or MRI scan only CT, so MRI next week will be a first for me with mm, though I had a brain one as a research volunteer a few years ago…. And yes my brain is there,! I find the Revlimid tiring and it has probably worsened the peripheral neuropathy I had before diagnosis but not impossibly. I find it upsets my gut too, but overall I don't really want to stop it as it might have slowed things down a lot… Who knows we can't go back and see what I'd have been like without it! I do hope the next few weeks sort your levels out and you have an uneventful transition to Revlimid
Hi Eve
I hope the analgesia is sorted soon, I got referred to the palliative team for advice on which painkillers to take next as the nonsteroidals have been banned for me now and the codeine has only a short effect.
Love Helen
Hi Terry
I have just posted along similar lines and am in almost the same place as yourself. I still work, a huge part of my identity is through what I do, and I just love my job. It is interesting and stressful, valuable and sometimes exciting and humbling too. Without my work what will I do? I like the banter, i get a great deal of personal satisfaction from it, I'm valued … Any way if I retire?….. What will I do? I have a child at uni and one just setting off in work and relationship so no one at home, many of my friends work, I'm not a housewife by choice, and you can't be a nurse from home.
My husband is still 7 yrs from retirement and the end of the mortgage. I never had time for any real interests or hobbies, except sewing and gardening.
In a way it is easier to do nothing. Is giving up work finally giving in to the disease? I don't know, I've never given in to anything without a big fight
The dilemma as I see it is that I don't feel ill enough or incapacitated enough yet, but small things are causing me greater anxiety, so maybe the decision will soon make itself.
Uncertainty carries so many problems. Like you my optimism has been severely dented this last few weeks. I have to be pragmatic and realistic now. Face the progressiveness of the disease but maintain the hope that these new drugs will help.
I also think that if you can make an absorbing and profitable business from your car restoration, doing that might be your answer. It certainly sounds interesting.
Keep in touch
Love Helen
Hi Mary
My husband cornered the antibiotic wipe market, cleaned everything i was ever likely to touch and stopped all visitors and tried to cook. He managed 3 days cooking then self preservation stepped in and it was better to do it myself. I only ate very bland stuff for months and still don't eat as i used to. We changed beds and towels every day and He lived in the spare room for 3 months so he didn't wake me when he snored. I made him go back to work from day 2 but he popped home to see i was ok at lunchtimes? He did and still does most of the cleaning as I can't lift the Hoover. I still stay a long way from sniffly people if I can.
Love Helen
Hi I agree with Eva here, the drug arsenal for mm is still small so if a drug works and you can tolerate the side effects it's worth persisting and getting as much mileage out of it for as long as possible, then using it again in the future if you can. I have now spent the last 2 years on Revlimid with a few months off over transplant but each time I had any infection (I've had about 8) I've had an extra few days off it to recover then back on it again. I'm beginning to relapse now but I'm ok really, been back at work full time for nearly a year. I will move to velcade sometime in the future when the levels go up high enough. I'd grit my teeth and keep going if it is working so well for you.
Love Helen
Dear Sue
That is just an awful short time for you, I can only sympathise and hope all goes well on this next lot of treatment. It's such a tough road. Keep us posted on how you are getting on with it. I've been on the Revlimid for18 months now and had annoying but low grade side effects only.
Love Helen
Perhaps all we need to get better is more sunshine and beer! Love Helen
Dear Eve
It's really hard isn't it? And it feels unfair when you look and feel well! Make sure you have lots of anti midge stuff for Scotland, but it's always very pretty.
Love Helen
Well Tom, am envisaging you in the onesie:-P with a/bs and sorry face:-( hope you better soon
Love Helen
Oh how lovely, I hope you get them sorted, and next year I expect you to post a picture
Love Helen
Dear Vikki
I don't know what is normal and not normal still! I took nigh on a year to recover enough after sct to go back to work! So maybe Colin is trying too hard, who knows . Like Ali's mum, we have to do what we feel is best on that day! I have good days still, then I have really bad days where I struggle to get in to work, need lots of painkillers and at times I feel my work colleagues must be sick of me. Then I have other days where i am quite good. I have no where near the drive and energy I had before, even just before diagnosis, so it's a very different life I lead. I hate noise and lots of people now, whereas before I was a bit of a party animal. I suppose Colin might be sickening for something? Maybe if he's still like this and cranky too he should be persuaded to go see the doc, maybe he's a bit down? He might be having an optimism dip?
I'm hoping bmb result this week will show less than 5% and so can wait a long time before more treatment is needed. I have everything crossed!
Love Helen
Hi Jean
It's good to know he's doing ok, I still can't take wine or curry, my sense of taste is quite weird still, but it means I'm still very thin! Silver lining:-) actually it more likely means I drank too much before! As for the bmb… Results next week, but I'm fine really, I'm hoping I have a slow return to more treatment and fit in a few more holidays, this post has spurred me into filling in the form today and I will put some slap on tomorrow and go and gets the photos done.
Love Helen
Hi Jacquie
I finished my chemo on the 6th June and was booked for harvest on the 18-19th July. I waited from the 20th July when harvest completed to 15th August for HDT and SCT . Our hospital doesn't book HDT until successful harvest is completed so it is first available space after that….. About 4 weeks in all as they like you to bet fit as possible and well over the gcsf.
Love Helen
Hi David
Re bulbs, did you tell her what it was supposed to say? Or is that still a romantic secret?
How is Frank today Jean?
Love Helen
