Me and myeloma: Dennis’s story

Our ‘Me and myeloma’ stories are a series of stories from the myeloma community.

Tell us a little bit about yourself.

I am 56 years old. I. Currently unable to work due to chronic inflammatory demyelinating polyneuropathy (CIDP) caused by myeloma attacking my peripheral nerve system. I have three children and four grandchildren. I have a close circle of friends, most of whom I have known since primary school. I live with my 15-year-old daughter. My children’s mother passed away in December 2022.

Diagnosis story

Can you tell us about your myeloma diagnosis?

I was diagnosed with myeloma after investigations related to back pains that I was experiencing.

After blood tests and X-rays arranged by my GP, I was informed that I had degenerative discs in my lower back and possibly a condition called ankylosing spondylitis (unrelated to myeloma). I was also told that my blood tests showed the presence of abnormal proteins, which were probably nothing to worry about.

As you can imagine, I was not satisfied with being told that the abnormal proteins in my blood were nothing to worry about. I returned to my GP and demanded another referral to get another opinion. I was sent to the haematology department at Guy’s Hospital in December 2014. After more blood tests and a bone marrow biopsy, I was diagnosed with smouldering myeloma on New Year’s Eve.

I’d never heard of myeloma before. I was mortified when the doctors told me it was a type of incurable cancer.

What helped you when you were first diagnosed?

I attended counselling provided by Dimbleby Cancer Care. This helped me to put things in perspective.

My Clinical Nurse Specialist at Guy’s was also very helpful. She reassured me that there were many treatment options available. She was so supportive; I saw her as part of my extended family. The consultants were good too.

Talking to other cancer patients also helped. I learned as much as I could about myeloma and its treatment. I didn’t want any sympathy etc., from those around me. I wanted everyone to engage with me just as they did before my diagnosis.

What message or advice would you give to someone who has just been newly diagnosed?

Try not to worry too much. It’s not necessarily a death sentence. People are living longer and longer with myeloma. I’m living testimony to that. I have been living with myeloma for six years. The myeloma I have is controlled.

New treatments are being developed all the time. Almost every year, there’s a new treatment available. Ask your team questions to get an understanding of myeloma and treatment options available to you.

Try to maintain a positive mindset. Talk about how you’re feeling. For those struggling, seek strength and support from family and friends. Failing that, there is support out there for you. Talk to doctors and nurses or get counselling if you want it.

Stay away from negative people/energies. Look after yourself. Eat healthily, exercise or be as active as you can.

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