[posiedavidParticipant]

I just came upon your wonderful forum, while looking up symptoms for Revlimid. My husband David, who was diagnosed in 2011 with MM, received a SCT in February 2012, and when his protein levels rose again recently, is now on his second month of Revlimid/Dex. The first round, he got pneumonia; this round he has escaped that so far, but as of yesterday, he was extremely fatigued (after a specially good day the day before – a Father's Day gift, he said).
We live in Ontario, in a beautiful rural area, and on the banks of the Madawaska River. Our life has changed dramatically since his diagnosis. By the time David was diagnosed he was very sick in hospital. His first treatment of dex brought him back – first to a hospital bed at home, and a wheel chair, and gradually back to being able to walk and eat and get around a bit, with the help of painkillers for back pain from the damage done.
I was especially touched by Dai's post about sending his wife out shopping for sewing supplies, as I have found my sanity and support in my sewing also. I'm a bit of a homebody anyway, so being a caregiver for David suits my lifestyle. But my biggest problem is the rollercoaster ride I ride with David. When he has a good day, I have a good day. When he has a hard day, it is hard for me also. And yet I know he needs me especially then to cheer him up and be positive. Its a balancing act. I am fortunate to have a large supportive family, and although they are not all around here, we keep in touch.
Anyway, I hope you will let us ride on your coat tails. Does it help that my father was British? 🙂
Posie

[eveParticipant]

Hi Posie

Welcome to David and yourself,everyone is welcome on this roller coaster,patient family and carers,many just look in,some ask questions and are never heard of again,lots stay and try to help one another:-)

I tend to think its rather sad when people just stop posting,no one knows what has happened to them,some do not like to post bad news,but this is what this site is about the good and the bad. You will notice yourself people from Australia ,NZ Holland Germany,even Far East ,its not about we're you are it's about coping with Myeloma.

As good as relatives and friends are,it's only people who have Myeloma ,and Carers who know what this roller coasters about.,my husband had CDT. Then CDV ,then SCT all considered failed,and had started CDR,fatigue ,stubbornness ,is the order of the month,I hate the Dex more than he does,but it does give him an appetite ,:-(

Posie I hope you and David enjoy your ride with us ,it's nice to have people around who understand, the father of the house is a man who is ahead of most of us,but still takes time to help people,:-P

He writes and composes. Some lovely music, Eve

[meganjaneParticipant]

Hello Posie,

I am a fellow Canadian now living in London – England, not Ontario :-). This forum is a very welcoming place and I have received lots of support and after a year of living with Myeloma I have even been able to offer some advice myself occasionally.

I am from Winnipeg but came on a backpacking trip to Europe in the summer of 1996, met my husband Phil during the trip and settled here. Phil was diagnosed with MM in May 2012 at the age of 43. His initial treatment was Velcade-dex-dox, he had six cycles of this with a few delays along the way, near the start of treatment it was decided the lesions at the top of his femurs were to large to ignore so he was admitted for surgery on both legs to have the femurs nailed. Phil was just getting over this and starting the treatment again when he came down with pneumonia that resulted in another short stay in hospital. We got through all this and Phil had his auto stem cell transplant in December 2012/January 2013 and is recovering well.

I do know what you mean about the roller coaster ride, I am still learning the balancing act, I don't keep anything from Phil but there are some days where he doesn't need my worries. Phil and I are both learning how to deal with our new life together.

I knit and crochet, I find sometimes it is the perfect thing to relax, sometimes I find I can't concentrate on it but it is easy to pick up and put down as needed.

I hope David's fatigue is only a passing side effect and his protein levels respond well to his new treatment.

Megan

[JBFParticipant]

Hi everyone, first let me say a big thank you to all of you, I have been reading this site since my husband was diagnosed with Myeloma in March of this year. Now he is in the 11th week of CDT only another 7 to go. He is coping really well with the treatment and everything is going as it should so they tell us. The only thing that bothers him is the steroids everthing else he can cope with so he says. He had to have them reduced from 40mgs to 20mgs due to chest pain. A couple of days after they are finished he feels rotten then he is fine again a few days before the next lot start. The myeloma was discovered after an accident at work. He has no pain at the moment the only thing with him is he is bored as he cannot go to work due to the side effects of some of the drugs. We are hoping to have the SCT in September. As we live on an island we have to travel to Southampton General for the transplant. The consultant we see is very helpful with the questions we have asked, at first he didn't want to know anything now he is coming round as I tell him about some of the people off the site. Not too many details though. As I am a nurse I thought it wouldn't be too bad on me who was I kidding. Now I must stop going on and once again thank you all, you have helped me immensley.
Babs

[posiedavidParticipant]

What I noticed most of all in perusing the posts when I stumbled upon this site was the beautiful caring support you offer one another. It is true that no one who hasnt been here can really understand.
I realized that we havent really had contact with anyone who actually has myeloma – all our contacts are with hematologists and health care professionals who have a lot of knowledge, and seem to care – but they are going by statistics and watching what other patients experience.
We live a three hour drive from the Ottawa General Hospital, where David has hematologists, and where he had his SCT. So for emergencies (and there have been quite a few)we go to our very small local hospital, and they communicate with the Ottawa team. We went once to a support group in Ottawa, but it is quite a drive, and they meet only 4 times a year, and it just hasnt worked again.
I like to knit and crochet too, as well as the sewing, and I try to have a knitting project on the go and ready to go, for those expected and unexpected trips to the hospital. I find it soothing and I guess maybe it is something in my life that I have control over!
Thank you all so much for your caring. It is tangible.
God bless,
Posie

[eveParticipant]

May I first reply to BAbs

Hi BBs and a warm welcome,you may not get many replys as you need to start your own little bit, if you go into newcomers,scroll down to bottom and press discussion ,you can start you own thread.

Welcome any way,so glad you are finding this site useful,there is another couple who live in the Isle of Wight ,is this near you.

Hi Posie
I found before MM I was a prolific reader,I cannot settle to do many things,so do wish I had some skill,but temperament at this time has deserted me,Min on here has taken up sewing since her husband died,and she loves it,her designs are lovely.

I moan about. 15 mile drive,and an 86 mile to London ,but you have a lot of open country,were we are bum to bum in traffic.
My thing use to be travelling in are Motorhome,but every thing has had to be scaled down,not many adventures abroad. We cannot complain as we retired early and travelled a lot,just wish we could still do it on the same scale.. Eve

[Kazzam2Participant]

Hi Posie,

Welcome to yourself and David. I am fairly new to the forum, they are a very friendly crowd. I have certainly felt better about my MM since discovering this site and realising that although it is rare, a lot of people are in the same or similar situations, and through sharing stories and experiences it helps us all cope, and they are a cheerful lot despite everything.

Nice to meet you and I'm sure we will bump into each other from time to time
🙂
Very warm wishes
Karen

[Kazzam2Participant]

Hi Babs,

Welcome to you too, I'm sure we will bump into each other on here!:-)
Very warm wishes
Karen

[dickbParticipant]

Hi there, welcome to the very exclusive Club no one wants to join. As you're here now I do hope you find it helpfull and supportive. It has certainly helped us cope with things, there is so much focus on the sufferers I believe we sometimes forget the families as well, after all they live with it just as much as we do. As for being Canadian, MM does not differentiate between nationalities so why should we?

[VickiParticipant]

Hi poise and babs,

Welcome to this site and the roller coaster world of mm. Like most on here we had not heard of mm, until my partner Colin was diagnosed in October 2011, he had been fit and well prior to diagnosis and only started with back pain in August 2011, resulting in a diagnosis soon after.

It has been a real up and down time, but with some reward, and complete remission following sct in November 2012. It can be a hard road, he had lots of infections and a couple of rushes to hospital by blue light but we have got here so far :-).

The sufferers benefit from having the care and support of a loving family, and so do we as a supporter, it's not easy and has been said beforehand your life turns upside down, but lets make the most of it. I am sure they will find a cure soon 🙂

Best of luck with the treatment, by the way all nationalities welcome here 🙂

Vicki and Colin x

[charisma4Participant]

Hi Posie,

Welcome to our very exclusive club.I have found it a great support since I was diagnosed on Christmas Eve 2012.Even though this is a 'club' that we would rather not join,you will find that the people that you 'meet' here are supportive and caring.

all the best to you and David.
Lesley x

[tonyfParticipant]

Welcome from me Posie, as others have said we are a pretty exclusive bunch. Everyone's problems seem to differ and the treatments differ, but we are all in the same boat together.
Again welcome, keep,smiling.
Regards
Tony F

[tomParticipant]

and a warm welcome from me also Posie and David

Good Luck in your road to remission David, its an uphill struggle at times but one well worth it, as I am here after having my SCT in December 2009 and now drug free.

Take it one day at a time and roll with the blows that get sent due to MM.

All the best on the road to remission

Tom Onwards and upwards

[Author]

Posts