Me and myeloma: Dave’s story
Our ‘Me and myeloma’ stories are a series of stories from the myeloma community.
Tell us a little bit about yourself.
I’m married to Margaret, we have two boys who now have their own families, and we have three grandchildren.
My hobby for many years was playing the drums. Most of my career was spent in people development, mainly in training, training management and design. I also specialised in coaching and mentoring, and although I don’t practice anymore, many of the topics I studied are still an interest, and I sometimes get involved as a volunteer for online projects with some organisations.
I’m also a sepsis survivor. I have survived sepsis three times. Sepsis has left me disabled. I have lost both legs below the knee and the tops of three fingers on both hands. During a stem cell transplant in 2022, I developed neutropenic sepsis and was ill for several days.
On a positive note, I have been talking at conferences on sepsis awareness across the UK, Belgium, Spain and Switzerland. We have also been involved in some TV and radio, again raising awareness of sepsis. I present not only about sepsis but I talk about cancer and sepsis and how they affect one another.
Diagnosis story
Can you tell us about your myeloma diagnosis?
At the end of June 2020, I attended A&E in Kettering General Hospital with pain in my chest. We immediately thought of a chest infection or pneumonia, and my experience was that this could lead to sepsis. After an X-ray in A&E, I was diagnosed with a cracked rib which was a real surprise.
About 2/3 weeks later, I became really breathless when walking. I returned to A&E, and the doctor wanted me to come back for a CT scan the following day. While I was in the clinic waiting room, I received a phone call from my GP. He said he had been reviewing my X-ray and wanted me to attend the surgery as soon as possible to put me on a programme to investigate possible lung cancer.
When I was called into the clinic for my CT scan, I mentioned the phone call I had just received from my GP. Over the next few hours, I had a CT scan, chest X-ray, blood test and urine test. After all these tests, I was told by the consultant that although I needed a further MRI test and bone marrow biopsy for final confirmation, I had multiple myeloma with extensive bone damage, and that’s why my rib had cracked.
I was shocked and could hardly take it in that after all I had been through. I now had cancer, and although my consultant told me it could be treated, he also said that, unfortunately, there was no cure at the moment.
What helped you when you were first diagnosed?
The help I received from my consultant and specialist nurse was important in understanding what happened to me. My nurse pointed me toward Myeloma UK, and I found the information on the website so useful.
My wife and I also found one of the myeloma support groups on social media really beneficial. Reading about others who had this type of cancer and being able to connect was so helpful. I also worked with a psychologist to help me come to terms with my diagnosis, which in turn helped me talk with Margaret about it. I worked with a psychologist when I developed sepsis, which was also beneficial.
What message or advice would you give to someone who has just been newly diagnosed?
Just take some time to take in the diagnosis, talk with your partner and family and spend some time discussing things with your specialist nurse and consultant. If you feel you need more psychological help, ask for it. Read about myeloma on the Myeloma UK site and connect with others when you feel you are able to on a support group.
In remission
Can you tell us about your experience with remission?
After my stem cell transplant (when I developed neutropenic sepsis), hearing that I was now in remission was so good. Not having to take so much chemotherapy, I began to feel better, and my sense of well-being improved. I’m now going to shops and restaurants and meeting more friends. However, with COVID still going around, I’m still aware of keeping safe.
What message or advice would you give to someone who is in remission?
Enjoy yourself, and be more aware of diet and exercise if you can manage. Make sure you keep yourself hydrated, and if you feel able to talk about your diagnosis, then do it. It’s about quality of life.
Relapse
Can you tell us about your experience with relapse?
The first two months of treatment made me feel really ill, although it did keep on top of the cancer.
My consultant changed the treatment to find the balance between treatment and quality of life, but unfortunately, it didn’t keep on top of the cancer.
When my consultant told me that I had relapsed, I was so disappointed, but I had a lot of faith in my consultant, who changed my treatment, and that really worked well. I then had a stem cell transplant.
What helped you when you relapsed?
Faith in my consultant to change my treatment successfully was key. Support and encouragement from my wife during this time was important, and also, support from my psychologist to help me deal with the situation to see this as temporary really helped me.
What message or advice would you give to someone who has relapsed?
It can be difficult but try and be still, not to panic, have faith in your consultant talk to your medical team and family. Again if you need psychological help, ask for it. If you feel able to share this with a support group, then do so. You’ll find there’s a lot of support, goodwill and encouragement out there.
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