[tonyfParticipant]

Hello John, you seem to be having a difficult time of things at the moment. You don't say what area of UK you live in.
Most areas have a Myeloma Group, in Leicestershire where I live they meet monthly at the local cancer centre, and can give advice, help, listen or just supply tea/coffee.
Failing that why not get in touch with Macmillan.
I'm sure that they will be able to offer all sorts of advice on equipment and what you may need to help June.
All the best
Regards
Tony F

[tonyfParticipant]

Good luck to John, lets hope that the weather is kind to them.
Rob wil be wearing orange, I guess we will be at the Mall, easier to get in and out, rather than somewhere en route.
Good luck to them.
How's your myeloma treatment?
All the best
Tony F

[tonyfParticipant]

Hello John and June.
Welcome to this merry band of individuals, not a place any of us want to be, but here we are.
Sorry to hear that June has kidney and sickness problems, I'm sure that they will soon sort things out.
I was 67 when diagnosed, went through the Myeloma XI drug trial, eventually had a stem cell transplant ( this February ) and am on the remission road, had a two month break from all clinics and am currently not on any drugs or treatment, except for a monthly penidronate infusion. Just as Tom says it is doable.
You know it's a sharp learning curve and you learn more as you go along, don't let it stress you out, June needs you!
Good luck to you both, let us know how it goes.
Regards
Tony F

[tonyfParticipant]

Well done Tom, that's the worst of it over, now, just take one step at a time.
I hope you go from strength to strength.
I found it quite scary being at home, after those weeks having everything done for you, suddenly you have to start working things out for yourself, not difficult, but scary!
Best of luck, remember to wear a high factor sun screen if you sit out in this fine weather.
Well done.
Regards
Tony F

[tonyfParticipant]

Hi, yes go to sleep really quickly, but wake up at 3 in the morning worrying about all sorts of things!
Get away for as long as you can……..we disappeared off to Cornwall for a week,going home tomorrow.
Nice to walk, laze about,do nought, had a cream tea! Even had a few beers!
Will start to worry about clinic appointments nearer to the beginning of August.
Lets enjoy as much of life as we can while we can .
Yours,feeling really laid back.
Tony F

[tonyfParticipant]

Hi Bev, stop, don't panic.( easier said than done!)
Let the specialists do there tests, get the results and then take their advice and treatments.
Like David (Perkymite) says disability aids is a little premature.
Folk, including me have myeloma, it is a very strange cancer, and shows itself in all sorts of ways.
All of us have gone or are going through all kinds of treatments, all you need to do is write your worries / problems / issues on this site and someone has been there, done that, come out the other side and are willing to share, help and offer all kinds of support . We are there with you!
As far as your treatment is concerned, yes done that, had a stem cell transplant, come out the other side and am in remission.
Please, please don't let it get you down, think positively, any worries share it with us here.
Yes okay, worry,but remember you are not alone?
Hey, chin up.
Tony F

[tonyfParticipant]

Absolutely superb news, well done for fighting the good fight.
Long may it continue,best of luck with the insurance company, let us know how you get on, always interested in that one!
In the meantime, book that cruise and as my specialist said to me, " go out and enjoy life"
Regards
Tony F

[tonyfParticipant]

Hi Kathy.
I can endorse what Richard has said, I think I mentioned this on another posting. I live in Rural South Leicestershire, we have some very attractive villages here, great train service to London via Rugby, good motorway access for M1/M6 etc and if you choose your spot, property prices are good!
More importantly the Leicester Royal Infirmary has an excellent reputation for the treatment of Myeloma, they are a very dedicated team, very caring and very positive, none of the problems that others on these postings seem to have encountered.
I have no complaints about the treatments that I have recieved from them.
I can always give you more info if you require it.
Regards Tony F

[tonyfParticipant]

Day15 well done indeed, hope you don't find it too difficult being back home. Remember take it easy, one step at a time.
Regards Tony F

[tonyfParticipant]

Hello Christine, can I add my welcome, along with everyone else. I think we are quite an exclusive bunch, all of us have gone through different treatments and can offer support, help and advice on most things related to myeloma.
For my part I was diagnosed in March 2012, I went through the drug treatment for 5 months, had a break for a few months, at my request, our daughter was married in October and I wanted to be drug free etc for her wedding. In January 2013 I had a stem cell harvest followed almost immediately with the transplant, it was tough going at times but now 5 months later I am drug free, no treatment, except a monthly penidronate infusion and daily adcal tablets. Had to have all my baby jabs again. Last thing the consultant said to me was to go out and enjoy life!
Don't be terrified, it is daunting, but very doable?
Good luck
Kind regards
Tony F

[tonyfParticipant]

Thanks Karen, promise I won't email dr.
Have a good break, hope the weather stays fine.
Regards Tony F

[tonyfParticipant]

Hello Karen, seems like an awfully long time to wait for the results.
Interesting that you can email Dr Garg!
Why did you have to have another BMB? Is it standard practice at Leicester Royal after an SCT?
Regards
Tony F

[tonyfParticipant]

I live in a small village in Leicestershire. Was diagnosed in March 2012 and have been treated at the Leicester Royal Infirmary. The treatment put me onto the myeloma XI drug trial and eventually a stem cell transplant. I have found everyone polite, professional, caring and very positive. I cannot fault the way that they work, I had a dedicated male nurse who could be contacted at any time.
For your interest I am 6 months post transplant, I am off all treatment except for a monthly penidronate infusion, no drugs, and appointments every 2 months with the haematology dept.
Best of luck with your move.
Regards
Tony F

[tonyfParticipant]

Would like to add my good wishes, 16 days , that's not a bad record to try to beat!
Best of luck.
Tony F

[tonyfParticipant]

Hi Gill.
What a wonderful, sad, thing to do, and what a pleasant last resting place for your husbands ashes.
Lets pray that he is now at peace,in a place that I am sure he loved.
I am sure that it is not the end of your grief, that you will always remember, but remember with a smile, not a tear.
Love to you.
Tony F

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