Why Myeloma matters

August 2013 I received a phone call from my dad saying he’d had an accident, that he was fine but he was in the hospital and could I visit him. Up until this point my visits to hospitals, for both myself and others, had been limited - little did I know that this would be the start of a tour of many hospitals over the coming years and the game of Hospital Bingo devised!

When I arrived he was in a wheelchair with his arm in a sling, my memory puts us in a corridor being spoken to by the doctor but I think that’s my brain trying to piece together what happened in that moment. We were told that his arm had broken and that there was what appeared to be a tumour in the bone but they needed to do more tests….

… let me take you back for a moment to dad before the accident. On his boat which was out of the water being worked on ahead of a lifelong dream to sail the world. He’d been scraping the bottom of the boat and had been complaining for a little while of soreness in his elbow. A storm came across and as the lightening stuck across the sky he jumped and felt his arm snap - that was all he did, jumped at the lightening crack above. He got himself to hospital in a taxi, knowing something was wrong and in immense pain.

As I think back now there’s a fuzziness to this day and the days that followed. I think it was the shock that not only was my dad hurt but we had the dreaded “C” word hanging over us. What did follow were days of dad in hospital in pain, high on morphine and seeing ‘ghosts’. More tests were carried out and eventually we were told that they believed the tumour was something called Plasmacytoma and that they would look to remove it…. long story short, after radiation therapy he ended up in Stanmore hospital having his bone removed from shoulder to elbow, replaced with a metal prosthetic. The radiation sadly had wrecked his rotator cuff muscle leaving range of motion small, but the cancer had been removed and life could continue, albeit with regular visits to the haematology department for check ups.

It was at one of the check ups that the Myeloma was mentioned and the likelihood that in the future this would require treatment.

Fast forward to 2017 and the numbers that had been tracked by the haematology doctors had started to increase and they started talking about treatment for the Multiple Myeloma that dad had and would now have for the rest of his life as it was an incurable cancer. I am still unclear as to whether that initial diagnosis with the Plasmacytoma included the Myeloma, I believe it did but we just didn’t understand what was happening. Next came a round of chemotherapy followed by stem cell removal and transplant.

His stem cells were removed at Addenbrookes hospital, Cambridge. They were taken away and cleaned, then in the February of 2018 he went into his hospital to have them put back. The snow fell outside his window whilst inside it was warm, as the stem cells were removed from their container of dry ice the ice ‘smoke’ flowed out like something from a science fiction movie. Each bag was gently brought up to temperature in a water bath and for the last bag the nurses let me help with this stage, gently rocking my dads stem cells and bringing them to life is something I’ll never forget. Next I got to watch the cells as they were pushed through the tube and into his system - a pink bubbly solution that would hopefully work to fight off the mutant myeloma cells in future.

Almost 5 years later I’m typing as the myeloma is starting to rear it’s ugly head again. He’s done incredibly well to have not needed treatment for 5 years and at age 74 is bucking the trends (we don’t like to fit into the norms in this family!). Knowing this day would be coming we moved to a home with an annex for dad so we could keep an eye on him and provide assistance if he needs it. He is now in a stage called relapse and will undergo a drug regimen which will hopefully push those mutant myeloma cells back again until he is in a stage called maintenance. One day the drugs won’t work any more so they’ll be changed and this will continue for the remainder of his life.

What does this mean for daily life? At the moment we just have to be extra cautious with his immune system - it is busy fighting the myeloma so any other infections or viruses can prove dangerous. The new drug regimen may see him a little lethargic and the steroids could increase his mood swings. He won’t lose his hair this time round which he’s pleased about. We won’t know how much of an impact the drugs are having for a few weeks but have planned some lovely days out to look forward to and as with life in general, will take each day as it comes.

Throughout the past few years, Myeloma UK has been a constant source of support and information which has helped us to understand the disease and how to deal with it. A few years ago, before his stem cell transplant, we (dad, me and my brother) attended one of the Info days put on by Myeloma UK and not only was it incredibly helpful with regards treatment information and meeting others with it, but they also had a dedicated session for those classed as carers to help us discuss the disease from our point of view, it allowed me to recognise that I shouldn’t feel guilty when I too have a bad day.

I realise that this is a rather brief synopsis of an experience with Myeloma that has been a presence in our life for the past decade, I think I could probably write a book of all the ups and downs and events that have occurred as a consequence of this disease but for now this will hopefully give you a little insight into why all sales of bee experiences until Christmas will see £5 from each sale donated to Myeloma UK; a small contribution for the wonderful work they do for people like my dad.

Update 4th January 2022 - Thank you to everyone for your support and for the bee experience orders in December. £150 was donated to Myeloma UK and dad is coping well with the drugs so far.

Stem cells going back to dad.