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Let the next chapter bring new adventures

5th Nov 2020

Franko tells us about his journey with multiple myeloma, from his diagnosis through to remission, and what has helped him along the way. During lockdown, he became a volunteer on our forum, using his experiences to help others.

Franko, blood cancer patient, with Michelle Roux Jr at a train station.

I was diagnosed with multiple myeloma in July 2018. At that point, I had never heard of myeloma let alone multiple myeloma. Initially, I had no idea that it was a blood cancer.

I'd been told that all I had was a bad back and that physiotherapy would sort it out. Giving me an MRI was fiercely resisted at first, but when they did, it revealed the truth behind the problems I'd been having.

I don't think I was even afraid when I was told that it was an incurable, but treatable condition. By that point, I was just relieved that there was an explanation and a treatment plan to get on with. Then, I could return to some sort of normality.

I had two weeks of radiotherapy, which helped to stabilise my back and enable me to undertake physiotherapy. This was followed by six months of chemotherapy. The treatment itself was very straightforward and I didn't experience any significant side effects. Apart from some occasional bone pain.

In fact, I stopped shaving or cutting my hair, as I expected it to fall out. When it didn't, I had to ask someone to bring in some cutters as it grew out of control!

They considered me for a rehabilitation home, but I was too young. So, I went home instead. I recovered my mobility far quicker than anyone had predicted. Within a few weeks, I went back to work. My treatment was rounded off with a stem cell transplant in 2019, which was far tougher.

Getting a transplant

There were several hurdles and harvests to get through before I even got to the transplant. All of which were long and tiresome. It was a challenge to finally get a bed for my transplant, where I spent three weeks.

The transplant process involved some very intensive chemo beforehand, which made me very ill and tested my immune system. It took a while for my body to calm down, as I had ulcers all down my throat and gut, which made it very painful to eat or drink.

For a while I lived on a diet of ice cream, jelly and fruit juice.

My isolation period coincided with Wimbledon, which I was able to use as a distraction through endless hours of infusions and supplements. When I left hospital, I bounced back very quickly and went back to work again. Since then, I have been in remission. Although, my plans have been severely impacted by the COVID-19 pandemic.

Once I went into remission, I was travelling quite a lot. In October, I had a moment of clarity, which persuaded me to use my experiences for other people to benefit from.

Joining the Blood Cancer UK forum

I researched organisations that I felt I had something to contribute to. I'd joined the Blood Cancer UK forum earlier that year but didn't get very involved. Now, I decided that it was time to take a more proactive approach.

I started posting on topics where I felt my experience counted. I found that not only were there others like me, but it also seemed to help other people. I officially became a volunteer during lockdown and have been working on the forum ever since.

Dealing with other people's anxiety at the same time as having to try and keep control of your own was the biggest challenge. It was here where my colleagues on the Blood Cancer UK forums came into their own.

There was always someone to offload onto in an environment where there was no judgement, and where others were going through the same thing. There were also conversations on practical problems for those shielding, such as getting shopping and medical supplies.

Now, the virus situation is getting worse again, and restrictions have come back into place.

After tasting freedom, many of us are afraid of the very real effect on our mental well-being.

Recovering the lost adventures

There's a good chance that I will be resuming treatment again sometime in the next 12 months. That dream trip to the south pacific that I've now had to cancel four times may never happen.

I try to stay optimistic about the future and find positives, but I must also be realistic

We'll see what 2021 brings

I, like many others, will be happy to say goodbye to 2020 and go forward in the belief that things will improve. Then, possibly, those lost adventures can happen, and the next chapter of the book can be written.

Franko, blood cancer patient, drinking a large beer from a glass. Mountainous view in the background.

Check out our advice on how you can cope with the emotional impact of the coronavirus pandemic.

Hospital

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