Newbie

Hi Duggit and a warm welcome to this corner of the Community although I am sorry to see you joining us.

I am Mike and I help out around our various Blood Cancer groups. I don’t have Myeloma but I was diagnosed way back in 1999 with a very rare (also incurable) but treatable type of Non Hodgkin’s Lymphoma (Stage 4 in late 2013) so although my Blood Cancer ‘type’ is rather different I do appreciate the challenges of living with an incurable blood cancer.

There are a few active members at the moment so let’s look for them to pick up on your post. Do click on the main ‘Myeloma Group’ title and this will bring up all the group posts. Have a look at the posts and as always you can hit reply to any post and connect in with the wider group conversations.

I have had 2 Allo (donor) Stem Cell Transplants (June 2014 then Oct 2015) so know the post SCT world rather well….. you may want to have a look at our dedicated Stem Cell Transplant support group where you can talk with others about their post SCT journey.

You may also want to check to see if you have a Maggie's Centre in your area as these folks are amazing and most centres do run monthly Heamatology Support Groups, the one I attend does have a few folks with Myeloma in it so worth checking.

Always around to help more or just to chat.

Hiya Doug,  now that is a question.  I think everyone is different with their coping strategies. I was diagnosed with myeloma in December 23, but I knew something wasn't quite right months prior.  In my instance, I haven't really had a chance to find my feet. I have my brother, mother and daughter pretty much with me every day, and I am undergoing the radar trial. So to put it mildly, I think I have been too busy and overwhelmed to really take stock of what is going on.  When I do have quiet moments, my mind seems to always wander to the cancer, which is horrible. I think upon the long term, the uncertainty, what I want to achieve and what I never will, and it's those times that I find it the hardest.  What I have found a comfort is coming here. Just checking in every once in a while, because it can easily be something that can consume you if you constantly surround yourself with cancer sites, but looking in helps. I get to see that I am not alone and there are people that just get it.  I wouldn't say I am an optimist, more of a realist. I know I could live a long while yet, and in that time medical science might make strides to help my situation even more. I also know that it might not be all roses.  Acceptance is a big help for me, knowing what is going on, when it is going on, what I can do and shouldn't. I don't like being felt like I am in limbo, I want answers as soon as I can get them and admit that on diagnosis, I trawled through every reputable site I could find concerning my diagnosis. Even if it is bad news, just let me know so I can deal with it.  Now, this is another thing, I am making goal posts. Before I had my diagnosis, I booked theatre tickets for Hamilton and Wicked. My doctor may say, no no no, but there is hope I will be able to go.  My kid turns eighteen at the end of the month, so a family celebration. Even working out a day at the beach (appropriately covered..thanks chemo) is a goal for me.  Also, it's ok to not be ok. It's ok to be angry, to be scared, frustrated, all of that. We, or at least I, tend to worry about other peoples feelings, so I keep those emotions in, but I am working on just letting them out.  This is a rubbish hand we've been dealt, but at least you know that we're all holding twos instead of aces :/  Take care :)

Hi  Dugit,  Vespa  here  AKA   KEVIN!     I have MM   diagnosed last June,  had   4   cycles of the DVTB    cheno  and immunotherapy   drugs   to  help me get into remission,  then  in January this year    a  Stem Cell Harvest,  then  recently   a  stem cell transplant,     dont want to  make it sound easy,   its been tough,     i found a positive attitude and family support,  ( married,  4 kids)   helped me,  the  process of the  injections and  tablets,  whilst    demanding,  is not painful at all,  even the  harvest   the Transplant  was not easy,  but  i am home now   50+   days since   transplant,   and  on the mend,  walking,  ( slowly)  building up my  immune system and body strength,   it   tough  on you,  and your   family,   but   remember  its treatable   if not YET   curable,       people on this Forum ( Mike included) Thehighlander   have   come on that  journey  and living   full lives,     Also Like Grogulove   says   we are all  different,    Blood tests give us the info  we need to get the correct  treatment,      reach out to the  healthcare team  and ask  "  whats the plan"       come back to us and let us know   please     Kevin

Hi Doug Cakie here otherwise known as Sue  So sorry to hear you are struggling with this horrible writing time between bloods. 

I had a firm diagnosis of Myeloma August 22 and a year ago almost to the day I had a Stem Cell Transplant . I was MGUS 5 years previous .

In remission now but still on 3 monthly bloods   it's so hard when we are in the waiting zone  I found it was taking away my contentment of being in remission . I had 6 weeks of counselling with Macmillan which really helped   with accepting my diagnosis and helping me live with the reality of it .  Of course that anxiety does creep in waiting for results but I'm better at managing it  Also my CNS who knows me well now will always offer support if I'm having an off day  

Reach out for support if you need it , here on this site or other agencies that The Highlander has mentioned     

Best wishes Sue 

Hey there, your post is almost everything I feel as well. I knew something  wasn't right . I was constantly being told by GP and even hospital doctor it's muscle pain over stretching it takes time to heal. I came away feeling disheartened but also well eventually what ever it is it will present itself eventually.  This started in November. I had back pain & left and right flank pain.

I was suffering at work mistakes were made and they sacked me in February 15th. By March 4th the pain become unbearable I presented myself at A&E after tests they found out the cause of my pain MYELOMA. I have signed up for the RADOR trial as well my number is 790 which is how many people they have on this trial. Good luck and keep positive.

Mother trucker also known as June 

I start my first Chemo tomz.

It's true that we should all listen to our bodies for we know them better than anyone else!  I know GPs have to go through the motions, looking at the common causes of pain before going more in depth, it's just a shame it takes them so long or if at all, to find out the root of the cause. Really wish you well on the trial and that your chemo goes smoothly :)

Hi all , I dont really know how to use this sit .Hope you are all well as you can be.I have mm and have had stem cell removal,waiting for the call to go in.I am feeling very anxious and if im honest , frightened.On top of all that I am having to cope with an alcoholic son which is causing friction between me and my wife.Dont know why ive posted this , maybe i feel alone.love to all ,Mal

Hi Betterdays abd welcome to this corner of the community and sorry to hear about the challenges you are dealing with.

There are a few group members who have had Stem Cell Transplant (SCR)….. I have a different type of blood cancer but I have had 2 Allo (donor) SCTs….. (June 2013 then Oct 2015)….. yes it was hard going but it did the job for me.

We do have a dedicated SCT support group that people from all blood cancer can get support and give support.

If you click on the link below  

Stem Cell Transplant

you can join and have a look round the posts.