Me and myeloma: Diane’s story

Tell us a bit about yourself

I’m married to Steve and we live close to the beautiful town of Dartmouth in Devon. We moved here 12 years ago from South Africa when we retired. When I lived in South Africa I volunteered monthly at an animal sanctuary working with lions, tigers, cheetahs and leopards so, when I came to the UK, I wanted to do something similar, so I volunteer at a horse rescue centre. I’m also a keen crafter, creating scrapbooks and cards, and when we can, Steve and I hop in the car and go to the beach as it’s only a 10min drive away.

Can you tell us about your myeloma diagnosis?

My diagnosis was a rollercoaster. The first sign something was wrong was in February last year when I realised I had lost over a stone in weight but I wasn’t worried at first. I assumed it was linked to my other health conditions which mean I have to adhere to a strict diet that is gluten-free, lactose-free and sugar-free.

Then I started getting lower back pain. I am pretty active (when I help at the horse sanctuary you’ll find me climbing over gates and rolling under electric fences) but the back pain was so bad I saw a chiropractor. He revealed I’d fractured my coccyx, had whiplash and dislocated my pelvis and he advised me to see my GP. I now know that broken bones are a common symptom of myeloma.

Over the next six months, I was passed from pillar to post, trying to get to the bottom of the back pain. My legs started swelling and I was struggling to breathe. I had physiotherapy, was prescribed medication for suspected asthma and then had a CT scan for suspected lung cancer. Thankfully, it came back clear but my symptoms remained. I’d gone from walking around 12 miles each week to managing around 1 mile. It was almost a year after my symptoms began when I finally got answers. My GP did a full blood count and then I was called with the news that it looked like I had myeloma, which was confirmed on 17 December. My haematologist assumed my GP had told me and so started talking about treatment and I was caught unawares, I was a bit shell shocked.

What helped you when you were first diagnosed?

I’m a very practical person so I wanted to understand the condition as much as possible and the Myeloma UK website was helpful. There was so much information to absorb that I read it in parts. I set up a profile on a website called Caring Bridge which allowed me to share my journey with family and friends and for them to comment. This was particularly important for me as a way of staying in touch with people because, when I was first diagnosed, I didn’t want to see or talk to anyone as the treatment made me emotional.

For 12 weeks, I did a research trial called RADAR but then for various reasons I was taken off it. This also meant I couldn’t have a stem cell transplant. Instead, I started a treatment called DRD, which is made up of three drugs – daratumumab, lenalidomide and dexamethasone. I have around 80 tablets each week and an injection via a cannula into my stomach at my local hospital.

I have never taken much medicine in my life so it has been hard psychologically to be on the treatment. Doctors are unable to tell me if I will have to be on chemotherapy for the rest of my life but I am determined to look on the bright side. The side effects haven’t been as bad as I anticipated. I have had a little bit of nausea, a metallic taste and cravings for beetroot!

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

Acceptance is the key. Initially I’d look at the tablets I needed to take every morning and evening and think: I don’t want to take them. But then I started taking some with my breakfast, others while doing an online jigsaw puzzle, and others when I was loading the dishwasher and this stops me focusing on the tablets – they have just become part of my routine. I know the medication is necessary. It’s no good fighting against it. Other good advice I had from a friend is not to overthink things and take each day as it comes. Listen to your body and if you feel tired, go to sleep, no matter what time of day it is. I have also always meditated helps me calm my mind.

Make sure you have things to look forward to – that might be something small like reading a book you love. For me, it’s planning trips in the UK. We want to go to St Ives in Cornwall and places in Scotland and Wales. The list is a mile long!