One month before I turned 40, I was given some news that was going to change my perception of life and my health. I was diagnosed with myeloma, a blood cancer.
I was sat down by a consultant in the hematology department at Guy’s Hospital in London, on a Wednesday afternoon in late September 2019. She explained the reason why my kidneys had been failing over the previous few months.
Stems on my white blood cells were inflamed. In fact blood tests showed mine were at nearly 4,000% of their usual size.
She told me I would be having a bone marrow biopsy, to confirm her diagnosis, as soon as I left her room. But she was already pretty sure I had myeloma. And she wanted me to start chemotherapy in the next couple of weeks.
There it was. Plain and simple. I was pleased she had told me directly. But I never expected to learn I had cancer aged just 39, in what was already one of the toughest years of my life.
A night in the emergency room
Since I was 15, I have had a chronic back problem. Nobody knows why, but I suddenly had a crack in a vertebrae in the lower part of my spine, making it difficult to stand or sit for longer than 15 minutes at a time.
I even had to do school exams in my own room, so I could stand and walk around at any point.
Even now, I’m rarely pain free. But after years of physiotherapy and effort, I am pretty active for my age.
Then in early May 2019 I had another flare up. I suffered a massive back spasm in the shower. In fact it took 15 minutes to ease me out of the bathroom and onto the bed.
A spasm wasn’t so unusual but this felt slightly different.
Over the following weeks, I worked to fixed the spasm and the movement in my back started to recover quite quickly. But I continued to have pain further up my back. In fact, it was harder to breathe deeply.
One night it got worse and I called the National Health Service emergency advice line on 111 who told me to go to A&E (what we Brits call the Emergency Department). After an all-nighter there, I got some painkillers and went home.
‘Your kidney function has dropped, this is not normal’
But the problem persisted and my doctor ordered various blood tests.
A week later the nurse called to say my kidneys were failing. In simple terms, everyone’s kidneys function at around 90%, but mine had dropped down to 44%.
This was alarming. But I learnt that ibuprofen-based painkillers can affect kidney function. And I had been taking some powerful ones. So I stopped and took another blood test.
I was with my partner Tris at Waterloo station, about to go to our friend’s house in the Isle of Wight for the weekend, when the nurse called again. My kidneys function had dropped from 44% to 35% in a week. This was not normal. I had to go to A&E again. Now.
So we dragged our cases to St Thomas’ Hospital, by the Thames. And once there, they sent me straight through to the ‘majors’ department. The team were amazing but it suddenly seemed very serious. When they took my blood pressure, it was understandably sky high.
They put a cannula in my arm – I was going to get used to those later – and took about 10 blood samples. Then I had an x-ray, urine test and an ultrasound. Everything looked normal, but my kidney function was at 33%. They had no idea why.
The doctors thought about admitting me over the weekend. But eventually they agreed to let me go to the Isle of Wight, provided I was at the kidney unit of Guy’s Hospital by 10am on Monday.
Am I cured?
That weekend, I should have been beside myself with stress. But strangely I wasn’t. A peaceful house with no TV, leisurely breakfasts in the pretty garden and long walks on Ryde’s beach worked wonders.
Come Monday morning, and after another set of tests, the kidney specialist was pleased too.
‘Whatever you have done this weekend, please do more of it,’ he said. ‘Your kidneys have gone up to 40%. We still are unsure what is wrong, but we are going to keep an eye on you and want to see you in a month’s time.’
I felt a rush of relief. Maybe I just needed some good sleep, no painkillers and the right food and I’d be fine.
Diagnosed with cancer
Nope. The saga wasn’t over.
A week later the hematology department at Guy’s Hospital called. They wanted to see me. And they were booking me in for a pet scan and MRI.
So that is how I found myself in the hematology consultant’s room that Wednesday morning, desperately trying to stay calm.
And then that word – cancer.
‘I’m sorry to have told you so bluntly,’ she said. ‘But we need to press on with the biopsy and treatment ASAP.
‘And there is good news. We can’t cure myeloma but we can treat it. This is definitely not a terminal diagnosis.’
She actually did a brilliant job of explaining it all. So we quickly learnt that myeloma was the second most common form of blood cancer but usually only seen in people over 65.
And she explained that treatment had come on leaps and bounds in the last five years. People of my age, and fitness level, usually do very well.
Disney’s Frozen will never be the same again for me
But then, straight away, I had to have the bone marrow biopsy. I was still in a state of shock and my muscles seized up. For some reason the gas and air made me sing Frozen’s Let It Go. I think that was a first for them.
In the end it didn’t work and they had to do it again the next week with me under sedation. It wasn’t painful. But it was unpleasant. It felt like having your bone tugged out with an apple corer, which is pretty much what happens.
Still, things started to get better from that point. Though it took time.
For the first three days, I couldn’t help but burst into tears.
Apparently the sense it is unfair is pretty common in these cases. After all, they have no idea what causes myeloma, there’s no obvious genetic or lifestyle link.
At the same time I was telling family and friends about it. In fact, mostly Tris was telling them while I cried and said ‘sorry’. Of course, I was worried about how everyone would react. But the love and support have been amazing.
Chemo and a transplant
Meanwhile, I started treatment.
Right now, I’m four months in to six months of chemotherapy. By comparison to other people on chemo, this is pretty manageable.
I have an injection on a weekly basis at the hospital. I also take a lot of pills. One of the chemo drugs is thalidomide, which is incredibly toxic. It’s pretty strange having to handle the tablet with disposable gloves and then pop it into your mouth each night.
And then I take more pills to manage the side-effects from the first set of pills. One day of the week, I take 20 steroid tablets. I bounce off the walls for 48 hours after that.
In fact, we’ve created a spreadsheet to track the tablets. That was a brainwave. It is also very helpful when you attend yet another medical appointment and they ask you what drugs you are taking.
This spring, once I finish this first phase of treatment, I will be admitted to hospital for a stem cell transplant.
This is unlike other transplants, in that I don’t need a donor, so there’s no risk of rejection.
Instead, they will filter out my own stem cells, give me an extra heavy dose of chemotherapy to kill as much myeloma as possible, then put the clean stem cells back.
I’ll probably be in hospital for three weeks. At this point, however, my white cell count will be very low so I’ll spend most of the next month recovering, avoiding crowds and possible infections.
While the myeloma will eventually return, I should hopefully be in remission for several years, maybe even 10 or more. And then, eventually, I’ll need treatment again.
We don’t talk about cancer in the LGBT+ community
In many ways, it’s like an HIV diagnosis. Barring a scientific breakthrough, I’ll have myeloma all my life. But it can be treated and I will survive.
And that’s the start of counting how lucky I am.
I’m lucky to have access to the NHS. There’s a reason why us Brits are so protective of it. It’s bloody amazing. It takes a team of people to diagnose and treat cancer, and everyone I’ve met has been exceptional.
I’m also so lucky to have strong support from my partner, family, friends and colleagues at GSN.
On the other hand, I can’t help worrying about other people who are going through the same thing, or worse, without a support network.
I saw a report last year that said LGBT+ people rated cancer as their fourth biggest health concern. And yet, we rarely talk about it in our community.
Another way I’m lucky is having GSN’s platform to tell my story. So I hope by sharing it, I will encourage others to talk about what is happening to them.
I’ll come back and update you soon. Meanwhile, I’m doing well, staying positive, and looking forward to the summer when I should be treatment and cancer free.