All Patient Stories

My story leading to my diagnosis with Myeloma

My first experience leading to multiple myeloma was when my GP asked to see me, following a routine blood test. He told me that I had MGUS (Monoclonal Gammopathy of Undetermined Significance. It is considered a precancerous condition, specifically a precursor to multiple myeloma). I had never heard of that! It was all very low key so far, as the GP was concerned and quite honestly I decided that it was something I should not think about again until anything changed because it seemed so unimportant. That must have been 20 or 30 years before I was diagnosed with myeloma. That happened in January 2019. Again, it was picked up due to a routine blood test I had as a review of the Prostate Cancer I had previously. I was asked to go and see the Consultant Haematologist in the Royal University Hospital Bath, which I did without too many concerns.

When I saw the Consultant, she asked me why I was on my own and where my wife was. I began to worry! I had not been asked to bring anyone with me, so I did not. She suggested that I ask my wife to come there and then! Which was not practical as she was working. That worried me all the more! I was then told that I had myeloma and what that meant. And that it had followed on from the original MGUS diagnosis. It then started to ring an alarm bell, rather a loud one! I asked my GP to check my notes and sure enough there was MGUS. I had been warned but chose to blot it out. We both went two days later to hear what I thought was going to be the worst.

What has helped me cope and stay positive

Being diagnosed with Myeloma was not a happy experience. But how could it be? I had to tell my wife, my children and all the family, plus our friends that I had incurable cancer. NOT easy! So I decided to make light of it. That set the scene for how I would deal with it personally from there on. My way of coping was no sadness, no negativity. Don’t feel sorry for yourself and think how lucky you are! Count your blessings. They were my way of dealing with it and they still are and if ever I felt sorry for myself or had negative thoughts I invented a mental dustbin with a big lid and put those thoughts in it and put the lid on firmly. No more thoughts, no more feeling sorry for myself!

What I wished people understood more about living with Myeloma

"I wish people would think before they speak. Or indeed speak but really talk. I feel that people don’t really want to know or think about illness and I don’t blame them. They are thinking how lucky THEY are, not surprising, but it can make people seem uncaring. Most people don’t want to know about illness, so, they ignore it. They avoid the subject."

Most don’t remember that I am on four weekly treatments, or indeed that I am being treated at all. Try living with Myeloma relapses. Try living with the constant reminders from Myeloma UK. Seminars. Potential cures. NICE. And the four weekly grinds of blood tests and treatments. All well intentioned of course, but nevertheless constant reminders that I have an incurable illness. Try listening to all the positives about cancer, and there are many. Look at pancreatic cancer and MND. So many trying to find a cure for those. Wow doesn’t that put life in perspective.

An older man and woman (Hugo and his wife) each holding a dog and sitting in the back of a car with an open roof. Hugo is wearing a baseball cap and sunglasses and his wife has a pink headband and blonde hair
"My advice is to really talk to people about their illnesses; I find that almost never happens. Make them feel that THEY really matter. It is so easy to walk on the other side to avoid the conversation and I am afraid I have personal experience of that."

My message to those diagnosed with Myeloma recently

The big message for others newly diagnosed is that there are so many treatments out there that really do work. Talk to everyone about the options available. Never give up and just let everyone that can, help. Always check the blood results. Challenge the prescriptions. Use the most powerful tool of all, your brain! And most important of all take a mental break from your illness. Take time off from it in some way. And do talk to others, don’t bottle it up or hide it. Find someone like me to talk to!

Don’t let yourself be beaten by myeloma or indeed anything else! Talk. Listen.

Take your time to work out the problems.

"Don’t panic because you have Cancer. Work out a way of living with it."