'I Had a Sore Throat, Weeks Later I Was Diagnosed with a Rare Disease'

In 2009, I was living in Buckinghamshire, England with my husband. We had a two-year-old and a four-year-old and I had just stopped working for a big bank, so I had no private health insurance.

Around that time, I'd been getting these sore throats, totally out of the blue. They were wiping me out for a week at a time, which with two young kids was pretty difficult. I started to get them almost on a monthly basis. And so I decided I was going to get myself checked, just in case. But I didn't expect anything really.

It never crossed my mind that I would be diagnosed with anything serious. When I went into the doctor's surgery in May, the nurse did a throat swab and actually wasn't going to bother doing a blood test. I remember she then said, "Let's just do a blood test now."

My family and I then went on vacation with friends, but when we came back, I had a message from my doctor saying she wanted to talk to me about the blood tests. So I went in for an appointment, and she told me that the hospital had picked something up and wanted to run some more tests. But she genuinely didn't seem to believe that it was going to be anything serious.

At that stage, I was obviously a bit worried. But I thought of how you hear these situations where people go in and get tested and everything's fine. I thought I'd be a little bit nervous, but that it would all probably be OK and that perhaps I was just being a drama queen.

But when I got to the hospital elevator, I saw that I had been directed to a hematology department and cancer unit and I just burst into tears.

Deb Gascoyne Was Diagnosed With Multiple Myeloma
Deb Gascoyne at her home in England. Gascoyne has been living with multiple myeloma since 2020. Deb Gascoyne

My husband and I then went in and spoke to a consultant and he explained that after seeing this one blood test, they wanted to do some more tests. They wanted to rule out multiple myeloma, a type of bone marrow cancer. But they reassured me that typically it was diagnosed people over 70 and more common in men and within the Black population. I was told that at the age of 34, I was likely far too young to have it.

The first tests all came back and looked OK; my bloods weren't as bad as I thought. I had no bone damage and the X rays were all clear. Then I had a bone marrow biopsy and the doctor came back and told me that I had 10 percent cancerous myeloma cells (abnormal plasma cells) in my bones. So I got diagnosed with myeloma less than six weeks after I first went to the doctor. I was classed as having smoldering multiple myeloma (SMM) for the first year, an earlier disease stage of multiple myeloma where the abnormal plasma cell levels in my bones and paraprotein levels in my blood weren't quite bad enough for any action to be taken immediately. Even being diagnosed with smoldering multiple myeloma is quite rare.

I still don't know if my sore throats were related to my diagnosis, but there is research that indicates some people with SMM can have impaired immune systems, because myeloma affects plasma cells, which are part of the immune system. So perhaps I was more vulnerable to picking up illnesses at that time.

I think a lot of doctors don't give a specific prognosis. If I'd asked direct questions, I think they would have talked to me about it. But I didn't really do that. I think I didn't really want to know.

Deb Gascoyne Receiving Treatment
Deb Gascoyne receiving immunotherapy treatment in hospital in 2020 prior to her second stem cell transplant. Deb Gascoyne

But the general prognosis I saw everywhere in those days for myeloma was around two to five years. It felt like my whole world just fell away overnight really. I genuinely didn't believe I was going get to see my kids get through elementary school, let alone high school.

My myeloma became more active in 2010. I had more than 10 percent cancerous cells in my bone marrow, which rose to 50 percent at worst, my calcium levels had risen, I was borderline anemic and I was suffering from some bone pain. So, the same year I joined the Myeloma XI trial. It involved maintenance therapy with a cancer drug called lenalidomide. The trial started with chemotherapy, then a stem cell transplant and then the maintenance therapy drug.

I went through two different types of chemotherapy and then had my first stem cell transplant in 2011. I was really worried still at this stage, fearing that because my condition had progressed, the prognosis of living for two to five years might be accurate.

The stem cell transplant was one of the worst experiences of my life. I was just so sick. I felt like I wanted the world to swallow me up. During the treatment your stem cells are collected, then you have a high dose of chemotherapy before the stem cell transplant takes place. I got ulcers in my mouth, couldn't eat and had no energy. When my husband visited I would just be asleep. I couldn't talk to him. I couldn't talk to anyone. I didn't see my children for three weeks. They came into the hospital once and it was just so difficult that I told my husband not to bring them again.

The first stem cell transplant put me into a partial remission. I was lucky that that was on the trial from 2011 till 2019, because that maintenance therapy wasn't available to most people at that time. Partial remission allowed my life to return to almost normal. Whilst I still had to be careful to avoid infections, I was able to go back to working, I took up netball for the first time since school, and focused on fundraising. Most importantly, I was there for my family.

Deb Gascoyne With Her Son During Treatment
Deb Gascoyne with her son. Gascoyne was diagnosed with multiple myeloma in 2009 after visiting the doctor to check on a recurring sore throat. Deb Gascoyne

But by 2019, my paraprotein levels had been going up for a year or so and they went outside of the trial guidelines. So doctors had to take me off the maintenance therapy, which meant those levels increased at a faster rate. I went back onto a different type of chemotherapy and immunotherapy, and then had another stem cell transplant in 2020. Now I'm on immunotherapy.

I think the maintenance therapy was a game changer because it gave me a much longer remission than a lot of people get, though treatments are getting better all the time, and now there are more options. When I do relapse again, which I will, hopefully there will be more options for me.

I hope that I can live with multiple myeloma long term. We're also keeping our fingers crossed for a cure at some stage.

If the nurse hadn't done those blood tests in 2009, it might have been months or years before I'd been diagnosed. And who knows whether that would have been good, in a way, because I'd have lived a few years without knowing, or whether I'd have ended up with bone damage or kidney damage, which is how lots of people get diagnosed with myeloma, when things have gone too far. But over the years I've realized there's nothing to be gained by having that conversation with myself. So I don't have it anymore.

I am hopeful for the future. I've become much more positive about my diagnosis. I began fundraising for the charity Myeloma UK, which has really been my savior because it's allowed me to have a focus on something that feels really positive. And, I now work as a community fundraiser for the charity Brain Tumour Research, and I love my job. It's the first time I've ever loved a job.

So I'm going to hope for the best, and if I relapse then we'll deal with that at the time.

Deb Gascoyne lives in the U.K. with her husband and two children.

All views expressed in this article are the author's own.

As told to Jenny Haward.