[courtneymyelomaukModerator]

If you would like to speak to someone on a one on one basis to discuss what’s going on for you, you’d be welcome to refer yourself for Peer Buddy support. Myeloma UK’s trained Peer Buddies all have experience of myeloma or a related condition, or of supporting someone with myeloma or related condition as a carer or family member. Sometimes it’s helpful to speak to someone who has ‘been there’ and understands intuitively what you are going through. Support is available to patients and also the carers/loved ones of patients.

Peer Buddies are happy to discuss their experiences of myeloma and its treatment, as well as more personal and social issues such as employment, family life and coming to terms with the diagnosis. You can find out more and find the referral form via the Peer Buddy page on the Myeloma UK website. Please note that for data protection purposes the form must be completed by the person seeking support themselves.

If you would like to discuss receiving Peer Buddy support you can also find out more by calling the Myeloma Infoline on 0800 980 3332.

Courtney, Peer Programme Coordinator, Myeloma UK

• This topic was modified 2 years, 1 month ago by  courtneymyelomauk.

[mervyn53Participant]

Dear newbbies

I was diagnosed with MM in November 2016 so coming up to my eitgth anniversary. I was always very fit (half marathon 1:2) never smoked in my life, not a heavy drinker. Nevertheless, I collapsed with three fractured vertebrae when the GP was advising rest and ibuprofen.

Since then I have all the cocktails the NHS can throw at me and I am not on unlicensed Venetoclax. I have had two stem cells transplants and one radiotherapy session. Alklpretty grim, but you get over then and can be grateful for the extra time allocated to you. Some cancer patients have only three months.

I just do as my doctors tell me and have lived an extra 8 years. I do have problems – diarrhoeia, neuropathy in feet, sleepless nights when on dexis but all easy to bear in the circumstances. Do you want a pilot who has trained and studied all his life or to believe Google and gossip ?

Good luck and hope this helps.

Mervyn

[tony642Moderator]

Hi Mervyn,

I am one of the forum volunteers. I had a very similar initial experience to you in that I was diagnosed with MM after collapsing with 2 vertebral wedge fractures and then had a stem cell transplant almost 3 years ago. Funnily enough, I was a pilot as well!

It sounds like you have gone through a lot caused by the disease, and you are still having problems, but as you say, you are still here 8 years later and grateful for it. It sounds like you have a very positive approach to what you have to deal with. I am sure your story will be an inspiration to others that being diagnosed is not necessarily the death sentence that some people think, and that you can still lead a happy and fulfilling life, although I do recognise that you have ongoing problems.

We are here to help and support you in any way we can so please keep in contact and let us know how you are getting on. Stay positive and keep your chin up!

Regards, Tony

[scholarshipspostParticipant]

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[reputationParticipant]

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