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Vicki 11 years, 5 months ago.
Hi,
I began having constant back ache in November 2010 which continually increased and after becoming quite ill was eventually diagnosed July 2011,straight into 6 lots of chemo till November and had SCT March 2012, I only wish I had found this site earlier, have been viewing for quite a while before tonight, found it very helpful.
I am no longer working and my husband is my carer so our life completely turned upside down, I am only 54 and had not planned on early retirement but that is what MM has gifted to us!
Babs
Hi Babs
Sory you had to join us but welcome. It is such a shame that you have only just found the site as this is a great place for support,advice and friendship. I hate the word carer, but I am carer to my hubby Frank. We are just waiting for a date for his SCT. How was yours are you in remission? Although I have been a member of the forum for some years but it is just recently that Frank started treatment and I am not up on all the terminology so I am on a steep learning curve..
Hope all is well with you and look forward to reading your journey
Love Jean
Hi Jean,
I can only say that I wish I had found this site before my SCT as the lonliness in hospital and not having anyone to compare with made it quite hard, since finding this site I have found great comfort in finding my experience very similar to others who are sharing their journey through the process on here.
I worked with the back pain from November till April 2011 when I fractured my T11 rib whilst in bed,( it was a very scary moment for both my husband and I as we both heard it crack and I screamed with the tremendous pain that followed, )we had booked two weeks holiday in London to go up to experience the royal wedding but I was so incapacitated that I only managed a short walk around the site and we ended up spending the whole two weeks on site and watched the wedding on the telly! I was in so much pain for the next six weeks that my Dr signed me off work, I was never to return and eventually was given medical retirement from work at the end of December 2011.
Unfortunately I have collapsed bones and the myeloma had done its damage prior to me knowing I had it, luckily I was offered one large dose of radiotherapy to hopefully ease my constant back pain and was lucky to have this take the pain away completely for the moment.
I had previously like many others on here been quite fit and healthy prior to this, We have always enjoyed cycling and had done many of the converted old railway cycle ways around the country and also enjoyed walking, I used to walk or cycle to work but in the latter days was so incapacitated that work gave me a car parking space and I had to drive in and at my worst I actually fell asleep with a client sitting in front of me at work!. Now I can barely walk any distance and can only stand for short periods before my back aches.Shopping, cooking and housework have become a no go zone for me!
I am on the trials like many others on here and today go to my local hospital Canterbury to collect my tablets to start the maintenance trial myeloma XI, I have been randomised to take Zolinza(vorinostat) and Revlimid (lenalidomide) with asprin to guard against DVT's.
My apologies for rambling on but hope my story will give some hope to others embarking on the myeloma journey.
Jean my STC was successful and was at Kings on Denmark Hill and I am said to be in full partial remission which is the best I can be, I was in for 5 weeks and 1 day,due to my having an infection in my hickman line,( I had in 7 weeks two hickman lines and a picc line inserted but that is another story for another time! )
I wish you and Frank a smooth journey through the STC , this site will certainly help.
Love Babs
Hi Babs
IT is a bit of a bummer,comes and knocks you side ways,all your plans for the future,flying out of the window,well i am a carer and I felt like that:-P, still do some times,it,s a big learning curve,but look around you,all ways someone worst off than you:-S
My husband had his SCT in May so a little ahead of you,and we are off to NZ next weekend!!!!!,we in tend to make the most of the time we have,an awful lot of money was spent on getting him to this position,he will never be the person he was before,and neither will I.I have to give myself a kick every now and then.
So Babs,in another couple of months,you will feel if you have turned the corner and the SCT was worthwhile,I have the tea shirt to prove it.
Welcome to the club,and start thinking about a nice holiday.Eve
Well Babs I can understand the way you feel,having treatment in Canterbury it,s not the most pleasant experience,you spend more time in the waiting room than being treated!!! guess were my husband had his treatment,and I do not suppose you every every saw the specialist nurse who is based at Margate LOL ,How many hours did you spend waiting for tablets!!!! no wonder you sound down.
Babs soon you will only have to go once every few months,so things will get better,were are you based I am in Deal.Eve
Hi Eve,
I have been reading this site for several months and you and Slim have been a great inspiration to me, our youngest daughter left the uk in August 2010 to travel Australia for a year, loved it so much she qualified for a second year, met the love of her life and has only yesterday has been granted a visa to stay with him, we brought her home for 5 weeks in July 2011 to tell her my diagnosis, then she came home this year for 8 weeks to be bridesmaid at her sisters civil partnership but I dearly want to go out to meet her new Australian family and see where she is to live her life, I had thought this may not be possible till I found this site and caught up with you and others who travel this far, we hope to go next year and have already checked out insurance!
I look forward to reading about your and Slim's travels.
Babs.
Hi Babs
Get that letter from the consultant and book it,it will do you the world of good,since remission,we have had a cruise,been to France and now NZ,we do not have a lot of money,but when you now your chances of living until you are 80 are not great,it,s not important.
Hi Jean
Thought I would say hello while on,we never seem to be on line together,Sorry about starting to games of scrabble on facebook,.Eve
Hi Babs
Welcome to the Site, but sorry you have had to join it! You are well on with the journey, and should be able to get planning now for some enjoyable happenings. None of us would chose life with MM, but we are all committed to making the best of our lives as we can, and we can spur one another on.
Lots of love.
Mavis x
Hi Babs
You certainly have had a terrible time. But as you have read a out Slims journey you will,know that there is light at the end of the tunnel. Slim had a hard struggle but look at him and Eve now gallivanting all over the place – and New Zealand no less!!! So as Eve says book you Australia trip (when you get consultants permission) then you will have something to aim for
Take care and take it easy.
Hi Eve no worries about the two games I enjoy them. I am playing 3 games at the moment with a girl in Australia. Not long now before your trip hope you and Slim have a wonderful time. Will you have access to play scrabble ha ha. You will have much better things to do
Love Jean
Babs,
Welcome, and congratulations of your SCT success. My partner Colin has just had his SCT, in fact i am sat in hospital with him now! It is great for me and colon. Tom read success stories so keep them coming. It's great to hear success stories. I had a real wobble here at the hospital this afternoon and blubbed to two nurses as I am so worried this SCT thing won't have worked. However it gets tiring doesn't it! And all the little worries become big ones when you're sat thinking!
Colin had a bad back too, had one vertebrae wedge, and the rest as they say is history….wish you well and like eve says, travel and do whatever makes you happy, especially seeing your daughter as that's precious time and you can go to a great part of the world too!
Vicki x
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