Hello penny,
My partner was diagnosed in october 2011,our first experience of myeloma, as we had never heard of it. Up to now Colin has been able to work either from home or at work. He works an hour and 10 minutes away so the drive is arduous in itself. However colins employers have been excellent, as have mine when I have needed to take time, particularly for hospital (unexpected admissions!). I can tell you I have been the ful range of emotions, as has Colin however this is a battle to be taken on and won (we hate to be beaten LOL!
This forum has been a godsend to both of us, whilst I do all the posting, Colin either hears the responses from me, or he's also started having a peak at the posts himself, but not written one of his own! Your post is very encouraging to us, 12 years with mm so far. An achievement:-)
Can't give any advice on benefits etc but am familiar with revlimid, Colin had it as part of induction therapy. He found that ok, it was the dexamthazone that he hated. Fatigue is his main issue.
Best of luck
Vicki and Colin x
Hi all,
Once again thanks for the advice re the lollies, and recounting your experiences. The info about the hickman line really helped Colin so thanks!
Mari, I hope you and Stephen enjoy your holiday! Colin and I were too apprehensive to travel anywhere as early on he had some cracking infections and a really bed rigour where I had to call an ambulance as we did not know what was happening. That un-nerved us as we only bit the bullet this last weekend since he was diagnosed, to go to Cornwall (and I was worried about that LOL!).
Peggy, good luck and onward progression to SCT (looking forward to it would be pushing it I know!).
Teresa, thank you for your kind thoughts and words, they are appreciated. I hope your husbands pain is under control now!
Stay well all
Vicki and Colin x
Hey well done Helen,
You have well and truly beaten this mm into submission and the new hairstyle to boot. Keep on going!
Vicki and Colin x
Hello Jen,
Fatigue thing is very common. Colin could sleep on a clothes line, i am sure!. Really glad your dad is responding and hope your boys are better soon. Always better safe than sorry. I am sure my new name is Mrs Dettox because I disinfect anything within an inch of it's life to keep the bugs at bay!:-)
Vicki x
Hi Beverley
Welcome! My partner Colin was diagnosed with mm last october 2011 and did not have smouldering myeloma. (well as far as we are aware!). I can't really offer any advice other than to agree with the others and be supporting andnencouraging when you need it:-) The friends on this site are well known for it!
Colin has finished his induction treatment and is waiting for an SCT in august. We were devastated when Colin was diagnosed because like others a random blood test put us on this roller coaster. That said having been daunted by the treatments the medical teams are great, no question too insignificant and always give you time. Hope you don't need to experience these treatments for a very long time.
Vicki and Colin
Hi etta
Just been keeping up with your posts and stem cell harvest. Good luck with the rest of the SCT. Colin is a bit behind you and harvest is due 25/26july. Fingers crossed and best of luck
Vicki and Colin x
Dear all 🙂
We just wanted to say thanks for all of the support, information and guidance. It is so good to know that we are not alone. We've had a couple of wobbles today in terms of worry and anxiety, gone through the do we really need to do SCT thing, and recognising that this is the best option. Our provisional dates are :
Line in 23rd July and overnight stay
25th and 26th Bristol for stem cell collection
6th august those final tests and checks and forms
20th august in for the big one, with return cells something like 23rd!
We have been advised to take in ice lollies, any idea on how many and how many days do I need to take them in for? The nurse said it was to do with melphalan? I did say to Colin that she did not been boxes full of magnums LOL:-)
Colin does have concerns about the line being in for virtually a month before SCT but no option.there is no way I would do the gcsf injections! We are having the nurse if for the first one to see how we get on.
Ali, I hope your mum is doing ok. On the home run now x
Again to all, thanks and will keep you posted
Vicki and Colin x
Hi theresa
Colin had terrible back pain but ironically not at the point where he had the vertebrae fracture. This was love down at the bottom left of his back. Before diagnosis for mm Colin has always had back problems and had surgery about 10 or so years ago. So the pain relief was more about the lower back and we were told that the MRI was not affecting that point.
With regard to the medication there was a lot of trial and error but they settled on zomorph (100mg) 2 a day, pregabalin 25mg x2 day. Paracetamol 8 a day and oramorph when required. After all that seemed to work!
Vicki x
Hi Dai,
You even make being I'll sound entertaining. Hope you are feeling better soon 🙂 🙂
Vicki and Colin x
Hi ann and Peter
Sorry to hear about your travel insurance. They get you all ways with feeble reasons!. Poor Pete.
We bit the bullet and went to Cornwall for two days to so e friends, Colin did really well considering we had a little temperature visit to the hospital on tuesday last and he's on antibiotics now! Sorry to hear they are being tough with you guys but hope you can enjoy your upcoming abroad holiday.
All the best
Vicki and Colin x
Hi Andy and steph,
Just catching up. We bit the bullet and went away to Cornwall for two days, weather rubbish but good to get away.
At least you know where you are with the mm now, and it sounds like you have the top man on your case. Mavis is right re the back pain, it took ages to get the right does for Colin, they sent us to the palliative care team, which freaked us out to begin with, however they did the trick and his back pain is well under control.
I really hope the top man can get your pps to move so that you can go for SCT.
All the best Vickii and Colin x
Hi Stephen and all,
Just catching up. Colin and I bit the bullet and went to Cornwall for a couple of days break! First time we've been away since he was diagnosed last October. A bit nervous before we went as he seems to pick up infections all the time, but it was worth it (weather rubbish!). Glad things are goin ok for you Stephen, we were wondering. We have ALS been following penny lawson. Glad they have your sickness under control and you are managing to keep your chin up. All the best.
By the way, thanks Ali for your good wishes for tomorrow. We've been bolstered a bit from our two days away!
Take care stephen
Vicki and Colin x
Hi Andy and wife (sorry what is her name?),
Thanks for your kind words….don't know how we cope with it really, but we are both stubborn ha ha, and don't like something to beat us!. We have tried to keep a bit of humour as well, though that's not easy. We said we were going to treat it like a project, needless to say I ended up demoted as Colin wanted to be the project director! That said all that resolve goes out the window when we are trooping to the hospital with yet another infection and worried about what will be!:-)
We read, read and more reading on the subject (well I did most of that), because whilst we are not medical it helps that you can ask informed questions at the meetings and feel that you are at least a bit on par with the consultant to truly discuss the options. I like to think that we are dealing with this as a real team, me taking responsibility for medicines, writing the notes up on thoughts, feelings, side effects etc and being there at every consultation etc…. That's hard when I work full time as well. We are lucky that overall Colin is relatively mobile too (touch wood).
Andy, as hard as it is, ask all the questions but on the understanding that whatever is said you can find a positive and a route that will suit you and you wife to battle this thing through. Its flippin hard but keep believing and positive. I am sure there must be an element of mind over matter in there somewhere.
Very best of luck on Friday to you both x
Vicki and Colin
Hello only me,
We are sorry to hear your sad news. As I hear and know, there is no one like your mum. Our thoughts are with you and your family at this sad time.
Vicki and Colin x
Hi Alethea
Welcome 🙂 My partner Colin was diagnosed in October 2011. it was a complete bolt out of the blue. We have certainly been on a roller coaster….lots of hospital visits …..even today for a temperature and he has been off treatment for 4 wks now waiting SCT! The positive of what I'm saying is the medical teams are great at treatment, do a great job and will get you better. There are bouts of 'downtime', me and Colin for different reasons,that's natural. However the positives when they come, make it better.
Any questions, if I can help, will do
Vicki and Colin 🙂
