Newbie Here... Trying To Stay Positive.

Hi Mla73 and a warm welcome to this corner of the Community although I am sorry to see you joining us and hear about diagnosis. 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.

You may find it helpful to call the Macmillan Support Line open 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00. This service provides cancer information, practical information, emotional support, benefits/financial guidance or just a listening ear.

For good information do check out Myeloma UK who produce very good information and run various support platforms including their Buddy Scheme, they also have a Support Line on 0800 980 3332

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.

Hi, sorry to hear about your diagnosis but I only went to give blood at a donor session and was told to go to my GP for blood tests as my iron levels were extremely low.  I was just suffering with pain in my hip at the time.  Long story short the same week I was told to go straight to hospital and wS told I would need an mri scan and  a bone marrow biopsy. By this time I was very worried as I felt reasonably healthy. Waiting for the scan etc. One day a bent down, felt a crack in my back and that's when I was admitted to hospital  for pain management as it was excruciating.   I was diagnosed with multiple myeloma, this was March 2023.  I was started on chemo immediately which I responded to and in September  2023 had a stem cell transplant.   I will be honest,  I was very very poorly but they prepared me for that and after 3 weeks in hospital I came home.  I had to take it very easy but day by day I got stronger and stronger.   I had 2 more cycles of chemo and now the myeloma is in remission!  It was very hard to stay positive at first as I have 10 grandchildren,  but with the help of my husband, who has been fantastic,  my amazing husband  and the fantastic staff at the hospital  I am getting more positive every day.  I am sure 100% you will get thru this and will think and pray for you. Please take care.  Diane.

Hi  Mia73,     i have  MM     diagnosed in June  23,  and recovering from my Stem cell transplant,  ( Auto)   in Feb  24, i do not have what you have experienced with   vertarbra damage,  but do have Hip lesions,   the Stem  cell  was a success,  but still taking  treatment as a  outpatient  on the DVTB    cycle,   the    Stem  cell harvest and   transplant  were totally Painless,  bit boring,  but  the recover  in hospital for 10 was tough,  no  sugar coating,    with sometimes, up to  5  IV    bags to go in me,  but that is the thing  the    team  put your first,  and the care  for me was wonderful,   also from my Family      i am now    10 weeks post stem cell   and  walking,  driving  again,    so the future  whilst no  curable is treatable  and  you have two  separate    issues,  but of course linked together,    i hope you can keep up the  positive attitude,  it  is what has pulled me though some dark days and nights   to be honest,     Vespa   AKA  kevin

Hi, totally agree with you Kevin,, one day at a time . My story is very similar to yours. It is one day at a time. I too still have dark days but the good ones far outweigh the bad ones. Stay positive and take care.

It's utterly rubbish isn't it?  I've had a similar path as you, doctors that have taken the safe route and gone down the physio path, then one day bam, a break. In my case it was the L4 (lower spine). I have lesions throughout the body, the skull and all the way down, so I am hoping nothing else goes crack!  I too am the one that takes care of others, often putting aside anything to do with me, due to necessity. I have a disabled, autistic 18 year old daughter, disabled and elderly mum and a older brother with Asperger's.  So really, there wasn't any time to focus on myself, so I totally understand.  I also understand how frustrating, frightening even, it can be to suddenly lose the ability to be in that caring role.

How do I stay positive? I'll be truthful here, I'm not always and that is normal.  What I try to do though is acknowledge every step taken, every chemo session I've gotten through, every little thing I have accomplished (even if it is just doing a sink full of dishes). I find it hard to hear it when people ask how I am, I have a bit of a wobble or do the British thing of saying I'm fine, when inside I feel far from it. Also little treats help me, if it's a drive to look at something pretty from the car window, or an indulgent bit of cake, a new book, anything really that is something nice, positive and nothing to do with myeloma.

I have a stem cell transplant due next month. It'll be in a hospital that will be an hour and a half from home, and all I can think of is how my daughter will cope. Not the procedure, not the side effects or recovery, but how she, my mother and brother will manage...but....I am going through this for them, and that is a driving force. Also, I have been told by many nurses and doctors since my diagnosis, that they are making great strides in the treatment of myeloma.  My stem cell consultant said that it is unlikely I would need a second sct as there could very well be even better ways to treat the condition by the time they might consider it!  Keep that in mind. We have been given a horrible illness, but they are actively working to find a cure and things are so much better than they were just ten years ago!

The last positive I can give you is that you have found this forum. It's helped me and I doubt you'd ever find a better source of comfort and support.  Take care :)

Thanks everyone 

It's reassuring to hear that I'm not alone in all this... It does feel very isolating.

Hi Mia ,I am so sorry to hear of your situation.I too am awaiting stem cell transplant , living for that phone call which isnt easy.I have worked all my life and everything has just stopped.Asking for benefits to survive and that hurts too.You have a much greater burden than me , bless you , I have to cope with an alcoholic son , all the promise in the world, travelled the world with work and he has lost it all.Sorry for moaning but we have to stay strong and get through a tough run.I hope you grit your teeth and say 2 words iI cant say on here.good luck , Mal

'Any thoughts/advice on coming to terms with a myeloma diagnosis and finding ways to move forward/stay positive would be much appreciated.'

Welcome to the forum, although in one obvious sense, none of us wish we were here!

I can suggest a few ways of looking at this.

Firstly, one way to help come to terms with it is - in the broadest sense - spiritual. You could reach out to your religion via prayer and to your priest/vicar/imam/rabbi etc for advice and support.

Personally, as a Buddhist, I have come to a relatively calm position through meditation. However, non-Buddhist meditation is perfectly doable. The book 'Meditation for Dummies' could help, or there are apps such as Calm.

Secondly, stem cell transfers and the recovery from them are tough. There is no two ways about this. However, they don't go on for ever. I recommend looking forward to things afterwards, and planning for them. Maybe not booking stuff so much: recovery times from STCs vary. It is more a matter of lifting your focus to going into remission and what you can then enjoy. For example, I am in remission and am enjoying every day. People do really live with cancer these days and get on with their lives.

Thirdly and in the meantime, you can take pleasure in the little things: nature, music,  TV and film... Comedy stand up on Youtube works well for lifting my spirits.

Then there are all the treatments out there. There is a lot approved already in the UK, and much more on the horizon, including CAR T, bispecific antibodies, CEL MoDs and dendritic vaccines.

All the best. You've got this.

Hi there, 

not sure what to say but feel fortunate my fracture was between shoulder blades so no brace needed. 
im here if you want to chat / I’m 52 and Nana to four grandsons so I’m not going anywhere yet. We can do this

Hi firstly let me say I can relate.

Pre diagnosis I led a busy and active lifestyle working (hard) and using my spare time travelling etc.

Then in 2022 I pulled my back but even though I visited drs & even did a course of physio no one gave me a scan. So l lived with the pain of sciatica for a year. Sept 23 Work put me under pressure by doubling my workload Oct 23 woke up exhausted couldn't go to work not like me at all a trip to the Drs & a referral saw me diagnosed with MM.  Further investigation (the scan) showed id fractured my back !! So I made the decision to take the treatments offered.  I had my back treated was on enforced bedrest no privileges so that was a wake up call eventually allowed home - I give updates to my family as I don't want to talk to them ALL the time about it as previously we were up close to someone precious who died of a different cancer - I use the myeloma support groups for that - join the online meetings they help and give inspiration as well as good to know information.  Join other activities online - body dependant find a new routine for your body.  Research food & mental wellbeing being - recognise & understand your body is sick it can be treated your mind is well & kind of think of this as a new project that you have to manage - you can dip into work remotely when speaking to occupational health - I would delete emails say a quick hi to my boss / colleagues etc.  I took all the Look Good Feel Better Workshops online that I could.  But I now have a bit more respect for my body by resting it when it needs it.  You have got this & the myeloma community has got you by way of support.  I hope this helps.

Maz