Hi Jan
How are things with you??? How is the treatment going,you are another one like Princess Fiona who has gone off the radar a bit!!!!,or is it me not looking into the site as much!!!!
Thank you for the connection recordmenow,I have looked at it,but do not know if it will happen,Slims not one for expressing his feelings about anything,so I have not spoken to him about it,watch this space you never know!!! I can see it could be a comfort to the person left behind.
We have both taken the attitude in the past,on all are travels we have never taken many photo,s that the memory,s belong to us and do not feel the need to share,or bore the kids for that matter!!
I do realise he is thinking about all the things he will miss,he would have loved to go back to NZ,so NZ is coming to us,Kiwi grand kids and daughter and husband coming over.so may be I can get a bit of a video going then,
Let me know how you are Jan?? How is your treatment going and what are the plans?? Love Eve
HI, it’s Chris here from Taunton. A few of you may have read my posts last year, but I have been off the radar for a while as I have been back to ‘normal’ life and not thinking too much about Myeloma.
Lena has told me about the re-vamped site, so I am having a look around at a few new members of the ‘club’.
I had my stem cell transplant in October/November last year, and I have now been drug free since May. I get a few aches in my shoulders and back if I overdo it, but generally feel really good, and fully back at work.
I am having 3 monthly checkups with the consultants at the Beacon Centre at Musgrove (next one next Friday), and a monthly top up of Palindramate for my bones but have given up the weekend antibiotic Sepsin as a year has gone past which is the recommended period.
If anybody has any questions I will be happy to answer, how ever daft you may think they are, as at the beginning of treatment everything is a mystery!
An amusing follow up to the SCT is that I have to renew all my childhood jabs owing to a new immune system, so in the last couple of months I have had the meningitus, whooping cough, flu, polio, and various others. Apart from picking up every cold going round, I have had no real side effects apart from an arm like a pincushion (nothing new there!).
Look forward to hearing from you all,
Chris and Lena x
Hi all.
Phew I'm Dex free now till my next cycle 😀 just waiting for the crash now :'-(
David – like I said in the original post those results are the norm for me and are the results I have to live with and I'm bloody well going to live with them 😉 though I must admit my neuts do make me a bit nervous.
I've been told at the day case unit if I get to cycle 25 then the Revlamid becomes free to the NHS. A goal to aim for but still not on my radar yet – I have my radar set a bit closer to home than that.
I'm glad you are getting on with plans for some holidays away I do think they give a you boost and a break from MM though they can be a bit nerve wracking at first being away from you usual medics.
Massive congratulations to you and Mo for becoming debt free 😀 what an achievement.
Eve – I'm on this regime until it stops working. Then it'll be a mad scramble to see if they can find anything else to keep the MM in check! I'm on 25mg of Rev 21days/cycle, 500mg Cyclophosphamide days 1,8 & 15 and 40mg Dex days 1-4 The only adjustment is if my neuts go down to 0.5 :-S then I stop the cyclophosphamide for a week. My beer intake goes up and down with my nausea – thanks cyclophosphamide :'-(
Vicki & Colin – I'm resigned to the fact that my PPs aren't going to dip much further I'm just happy they're stable and hopefully the drugs, sun and beer will keep them that way.
It's annoying that my back op has been delayed because it stopped us going to Belgium last weekend. No losses were occurred but still!
Tom – stable will do for me. After all you are stable too 😉 in a stable remission lol and long may you stay that way.
I try not to get p***ed off because it doesn't achieve anything and is a waste of energy BUT lol and I think Steph worries around blood test time as I do as I think the majority of us do but there's not a lot we can do about that.
Holidays, breaks and beer booked to date.
End of Sept – week in Greece. 😎
Early Oct – 3 nights in the Lakes 😉
After the Lakes off to the Nottingham beer festival 😛
And before the end of the year a weekend in Belgium to be booked no confirmed date as yet.
All the above are provisional and rely upon the skill and professionalism of my wonderful NHS medical team and the drugs they so readily supply me.
This ain't a rehearsal lets get out there and give it our best shot!
Every day is a gift
Andy & Steph xx
Hi George
Like you guys my partner Colin was fit and well right up to diagnosis, other than back pain starting about 6 weeks before a diagnosis. He was diagnosed within a month having had full skeletal survey, bone marrow biopsy, blood and 24 hour urine test! It a roller coaster alright! I don't thin now that you are on the radar George, that a few weeks will make a difference either way. They will plan and assess and then find the right treatment for you.
It is doable though, so be strong and hit this mm on the chin :-). We'd never heard of it before, now Colin has had front line treatment and a stem cell transplant!
Good luck with your treatment 🙂
Vicki and Colin x
Hey jean and frank,
Frank must have a built in sport radar….waking up for football and then rugby LOL! It's hard to see frank with the tummy troubles and not eating but it will pass. And his neutrophils are past the magic zero which Is great :-). As debs said things will speed up and frank will make a sure slow improvement. Be careful for yourself too jean, I haven't been 'right' since the sct (Colin would probably has I never have ha ha!). It's very stressful supporting the one you love through this very horrible time. But there will be bonuses when things get better.
Take care both……by the way not reading the news papers today, too depressing. The national sport of rugby for us needs to change to something like tiddlywinks…..we might stand a chance of winning then ! 🙂
Vicki and Colin x
Hi Peter
I think I know that now 😀 but you nip under radar as often as you wish 😉 but dropping by the normal way is better as its "Good To Chat"
Looked for you On Face Book, do you have a photo on profile? or is that you that just joined ??
And i will try to be good 😛
Tom Onwards and Upwards
Hi Tom
You have to remember that on our side of the hill we are very sneaky
15 stone ok , unless you are 4-6" tall !
The wine & chocs were taken several hours apart !
Going to rub grow more into beard to encourage growth
Very cold on top without much hair this weather
Outside today @ -3 c plus windchill I think spring is a long way off
Sorry I sneaked in under the radar , next time I wil ask !
Be good
Peter
Hi All
Frank feeling sick and terrible runs. Have given him tablets for cramps and sickness. Drips down. He had a power failure when doctor was talking to him 😛 . He slept for four hours and said that he has never experienced such a deep sleep. Doctor did not say anything about bloods but told him that "he was ahead of the pack" but not to get complacent as it will get worse. Thanks for all your good wishes
Best to all
Love Jean xx
Ps woke just in time for United match – think he's got built in radar? :-S
Hi Eve
I'm not off radar, I just don't come to this site very often, but I do blog fairly regularly, so if you want to know how I'm doing, you're welcome to read it: jetblackliving.wordpress.com.
And yes, you're right, after both types of SCT, you need to renew childhood vaccinations. But your haematologist and GP should advise you.
I didn't intentionally have a back to back SCT. I was in CR after the auto, but sadly it only lasted about 5 months, so I had to re-commence treatment in Feb this year, which was followed by a donor transplant, from which I am now recovering.
Thanks for your comments and good wishes.
Same to you.
Jet
Hi Jet
Nice to hear from you,must have been heavy going with back to back SCT,they do say it is the best thing to a cure.Have not heard about vaccination for shingles,but do know if you catch it early,have less side effects.
I believe you have to have all your childhood injections again with donor transplant:-S Helen got whooping cough,seems injection only last 7 years and she only had an auto.
So important to keep your immune system healthy,good luck for the future just in case you go off the radar again.Eve
Gill
My heart goes out to you. Grief is so painful. My neighbour's husband died in March this year and we both look out for each other and ask how it's going – grief and managing alone versus cancer and its treatment – fortunately we both feel able to say how it is, good days and bad days. She has experienced the same as you though, with people avoiding the subject of death and grief, I think because they can't deal, or don't want to deal with the pain they will experience when you express yours.
One friend who went off radar with me soon after I told her about my diagnosis came up to me the other day in town and apologised. She said that her partner of 25 years had left her and that she couldn't face my vulnerability on top of her own.
The other thing is that often people are scared to broach the subject, because they think it might upset you, not understanding that the upset is there whether you express it or not and not realising that you actually WANT to talk about how you feel and about Stephen. So it may be that you need to take the lead, maybe you need to express your feelings as a way to allow them to talk about it and to talk about Stephen. You may be happily surprised by the outcome.
And as everyone else has said, it will take time and crying is good. I wish you well.
Jet
Well spotted Eve, I missed it first time round but you managed to sneak your news under the radar Jo!:-0
So, spill the beans about your relapse and your new treatment if you please. I know it's not easy and as positive as I may usually be, each relapse (I've had 3 up to now) has knocked me for 6… one into the outfield, one into the stands and one right out of the ground… I couldn't find the last one and had to call for a new ball. Anyway, enough of the cricket analogies… I'm no big fan. :-/
in your own time.:-)
Much love 🙂
Dai.
Hi
I would like to thank everyone for all the good wishes. I must admit the thought of a sct had slipped from my radar and I was just coasting along. The meeting with the Prof. On Monday has brought it back into sharp focus. I knew an auto sct was off the cards for me and that an allo sct was ultimately the only way forward for me. Never the less when he said we need to do it ASAP and possibly early in the new year it gave me a fright. I soon got over the shock of the suddenness of the announcement and the pitfalls he highlighted to knowing this is what I wanted and really my only option. No less scary though. I now have a plan and a goal to work towards which will keep me focused and maybe a little jittery.
Thanks once again for all your support.
As the wonderful Tom would say "onwards and upwards"
All the best
Andy
Hi Gill,
My thoughts have been bent towards the two of you for weeks and especially for the past few days. It was yours and Stephen's 'voices' that were the first to speak to me when I discovered Myeloma UK… brave voices, bright voices and you strengthened me more that you will ever know.
Now Stephen has slipped off the radar, peacefully, painlessly… and now my thoughts are with you and you alone.
Enough for now, except to say, much love as always.
Dai.
Hi,
Sorry to hear about your Dad. I am well aware how under the radar myeloma can be but even I am pretty shocked by the low standard of care given to your Dad, even if your GP was ignorant of myeloma, like you say he should have carried out some blood tests etc. I am sure that you wont be feeling like it right now but you could complain to his local primary care trust. You dont say how old your Dad is or which hospital is going to be treating him but I am sure he will now be in safe hands,and get the appropriate treatment underway to reduce the pain etc
Wendy
