Together we will beat cancer


myeloma scared

2 Jan 2016 02:01

On December 17th 2014 I picked up a plate at work, pain ripped through my arm and collarbone and ended up in a & e the next day. I was told I'd popped the ligament between my breastbone and collarbone but because it was a weekend I couldn't have an ultrasound or X-Ray and to go to GPS on Monday to sort it.

Two months, three GPS, five X-Rays and countless bottles of morphine and injections into my shoulder joint was still being told it's a ligament popped, well finally got the ultrasound on February 4th 2015, was admitted within an hour of the scan,  on the 7th February was diagnosed with Myeloma in my right clavicle. I was told it was a rare case as I'm a European woman aged 51 and that it's presented in the clavicle.

At the time it wasn't the cancer that scared me so much as the fact the doctors said it was incurable and that life expectancy is 8/10 years, with a stem cell transplant. I started chemo straight away for four months along side a drugs trial and the transplant which was done in October, I have my next bone marrow biopsy on the 11th Jan, results on the 21st. This last year has torn every emotion I have to shreds and if it was for the strength of my best friend holding myself, my husband and children together I wouldn't still be sane!!.

But with everything crossed by the end of this month I'm hoping to achieve the R word, and then the future scares me so much, i.e. when it comes back which we know it will, what if they miss it again for two months?, what if it comes back stronger?, why can't they cure these cancers?, the advert on the telly is true it can be a very lonely place mentally. Until that day in February I'd never heard of myeloma and don't know of anyone else that's got it or know of anyone who knows someone with it and that makes this journey even more lonely!!!! Is there anyone on here with Myeloma please???

myeloma scared

4 Jan 2016 15:34 in response to granny g

Hello granny g and a big welcome to our forum,

Many here will completely understand how you feel, that it is a lonely journey but this is exactly what this forum is for, to make sure that no one feels lonely and isolated even when diagnosed with a rare cancer.

We have some information on myeloma on our site here.

I do hope you will meet others on the forum with myeloma. I did a search for you and someone posted just a few weeks ago to ask our nurses some information about mult myeloma. I am not sure whether this person is in exactly the same situation as you but feel free to respond. You can find the thread here.

Best of luck for your bone narrow biopsy - do come back here and let us know your results on the 21st. We will be thinking of you and keeping everything crossed.

Best wishes,

Lucie, Cancer Chat Moderator


myeloma scared

4 Jan 2016 18:02 in response to granny g

Hi there, I've had this myeloma for 4 years now, it takes ages to diagnose because it masquerades as so many different things, I was treated for gall stones and sent back to my GP with a note to say u was wasting time. My GP was brilliant but still I didn't get my diagnosis until I collapsed in a&e from the calcium release into the bloodstream. I've had a stem cell transplant and 2 courses of chemo. I'm going into my 2nd relapse now but the good thing about myeloma is it doesn't need treating until the side effects are too bad. I think I'll be back on chemo by Easter. Chin up, it's pretty wearing but livable. And one of the bonuses is not getting hay fever or nickel rash anymore. Enjoy 2016, make occasions out of all events and work your way through a bucket list, no matter how silly it seems. 

myeloma scared

12 Jan 2016 23:34 in response to salltdapp

Thankyou salltdapp for your reply well I've had the biopsy so now we wait with fingers crossed, my consultant has been totally honest through out the whole time, and not given me any false hopes while being totally positive, I don't know what the future holds none of us do but this anger that wells up sometimes and the loneliness because nobody can give peace of mind that the next year isn't gonna be an endless round of hospital appointments like the last year has been, the hospital psychologist said to enjoy and make as many memories you can do the bucket list and all that, but when another year passes with appointments you think back and realise you haven't had time to do the bucket list, and that scares me that the only memories my loved ones will have is comparing the hospital visits not the holidays or days out, picnics, movies just spending time together. When I get like that I think of people worse of than myself as if I don't have cancer because I'm still struggling to believe I have especially on the few days I feel well and strong. Maybe I'm deluding myself I don't know I'm just terribly confused and lonely in all this mess.