Saying hello

Hi Debbie  I'm nearly 70 and had a stem cell transplant in September 2023 and since then have been in remission but am on a maintenance drug called Lenolidomide.   I had my consultant appointment on Friday and she says I am doing fantastic!  All bloods and markers are where they should be,  no sign of Myeloma! Even tho I'm am over the moon and do stay positive  I have been chatting to my husband this morning about the fact that I do still worry about if and when it will come back.  I am very fearful for this time and I look at my children, grandchildren and my impending first great grandchild in May and I'm an emotional wreck!  I worry so much about the future but at the same time stay positive.   My family are and have been fantastic as has the hospital but my fears are always there.  Your feelings are normal and please talk about them even if it's on this forum,  it's really helped me.   So from one worried warrior to another, stay positive,  stay well  and good luck with your treatment

• from Bunky. 

Thank you so much for your reply and advice. I really appreciate it. I too have a small but supportive family around me, but I don’t always show just how scared I am, I try to stay positive most of the time, but as soon as I stop or try to relax the worry creeps up on me. I’m hoping to see a counsellor in the near future which I hope will assist me with gaining some management skills. Well done with your markers, you’re doing brilliant. Stay strong and healthy my fellow warrior x

Hi. Debbie.   Kevin here.   SCT.  last.  February and like Bunky in remission on same treatment.  To say I am up and down like you is an understatement.     My wife and I have made plans we hope we never have to put into action.    A will and my wishes etc   Having listened to my best friend 2 years ago to a brain tumor. The reality can hit you.        I am a positive person   I tell myself that live the best life you can. When and while you can    The strides in treatments for. M. M. Is incredible and. NICE  approve more than they deny and patient groups pressure them on our behalf.     I am 67  father.   Grandfather. Lots to live for.   I will not let the unknown spoil my now time        Lots of love and strength from. Kevin.  

hello Debbiepol

The mental side of these diagnosis and treatments never gets mentioned a great deal.

I know exactly what you mean about scared for the future. (I have an imaginery clock above my head ticking down!)

But that`s where the negative thoughts stop. NOW.

I know people have different tolerances, views, attitudes to things, but I found this a good way to get through the weepy down moments.

There are two things you can do.

1. sit at home with your head in your hands saying Woe is me. (Tomorrow when you wake up nothing will have changed, it doesn`t help one bit)

or 2. Look it in the eye, head on, face to face, and fight it. How dare this thing come in to my body and do this to me. I`m not going to let it win. I will fight this all the way. Who gives it the right to spoil my life.

If this helps, then great. If not, sorry it didn`t work for you.

You mentioned `worried warrior` which tells me you are a fighter anyway.

wishing you all the best

This damned disease is a huge mental challenge to deal with. When I was diagnosed in 2022, I went through depression for a few months. I gradually got myself together and now don't lose any sleep over it - except literally when I am dosed up with dexamethasone!

I was diagnosed at stage 3 and am high risk. These are not exactly positives in terms of my prognosis. I don't know if any of these approaches are of use, but I turned my mental attitude around in the following ways:

- My doctor, healthcare team, family and even my employer have helped me so much. How can I not make the most of that by living the best life that I can?

- I will be damned if I let myeloma stop me any more than necessary. Life is for living, not moping.

- I do the best I can in terms of a healthy lifestyle. Exercising daily, eating well, barely drinking (I have never smoked). The rest is outside my control. The exercise also helps to keep my spirits up.

- I meditate regularly. Related to that,  I am a Buddhist, and I draw mental strength from that.

Having myeloma is a fight on two levels - physical and mental - and we must deal with it on both fronts to the best of our abilities. 

Thank you for your kind reply Kevin, Up and down that’s the best description as to the way I feel, I too have made plans should the worst happen, I do hope this is a long way off. I too think In general i’m a positive person, but by gosh this is challenged by multiple myeloma. Long may your remission continue, love and strength to you too x

Hi Debbie , lm new to this site but wanted to reply , lm 56 and have only been diagnosed for just over a year , 2024 was a rough year but l have a fantastic wife and family , it certainly makes you think about life in a different way , every time l see my grandkids l think lm not going to let this beat me & lm going to live life to the full  , lve had my sct and now on maintenance treatment & feeling so much better so try and stay positive, there is light at the end of the tunnel , l hope you stay well and live life .

thanks David