Gemma Brown: my story

In the summer of 2018, a routine pregnancy check turned into a life-altering moment for mum to-be Gemma as she faced an unexpected diagnosis. Here she tells her story of strength, love, and resilience, and takes us through the highs and lows of her remarkable journey.

“My story starts on 5th June 2018. I was 27 weeks pregnant and needed to go to hospital for a regular glucose intolerance test as well as my 28-week bloods.

The following day, I received a phone call from the consultant at James Cook University Hospital asking me to come to the hospital straight away. At the time, my partner was still at work, so phoned him and my mum immediately as I didn’t want to attend on my own.

Once we got to the hospital, we went to the haematology department, where me, my mum, and my partner Craig were taken to a small room. I was saying to them “I must have cancer” but they both said to me there was no way that could be the case.

We sat there and they took my bloods again. A consultant came in with a specialist nurse and it was in that moment that I was told. “You’ve got blood cancer – MDS”. I just couldn’t believe it. It was so surreal. Such a shock. Looking back, I now know I had many of the symptoms, but at the time I thought these were pregnancy related. My gums had been bleeding, my nose at times, I was very tired, I was bruising, plus there was sickness and weight loss, but surely lots of pregnant women could relate to these.

Navigating pregnancy and treatment

I was told I would need chemotherapy as well as bone marrow biopsy. The biopsy they could do straight away and that it would take 10 days for the results to come back.  

The consultant urgently met with the maternity department, as I couldn’t start my chemo treatment whilst I was pregnant. They wanted to get me to 32 weeks to help my baby but were worried with recovery time after the c-section as this would be a further delay into starting my chemotherapy treatment. 

I went to the hospital every Monday and Thursday for blood tests and monitoring and then at 30 weeks, it was decided I needed to have a caesarean, and in that moment my baby boy was born, weighing just 3lbs 14oz and we called him Thomas.

On the 4th October I started chemotherapy. I was told I’d have to be in isolation for a minimum of three weeks but in the end, I was in there for five weeks. Those five weeks were one of the hardest things I have ever had to do in my life, sometimes I felt like giving up, but I knew I couldn’t because I needed to get home to children. 

At the time, we also had an eight-year-old son Jake – but we hadn’t told him I had leukaemia. We said I had an infection and needed to be in hospital, or I could get very poorly. Saying goodbye to go into hospital for those five weeks, not knowing if I’d see my sons and family again or come home was the hardest thing ever. My Mum stayed in with me the whole time, which was amazing, my dad was only allowed to visit for one hour twice a week, whilst my partner was looking after the children.  

During the first 10 days in isolation, everyone had to wear masks and gloves just to be near me. For five weeks straight, I didn’t step outside unless it was for medical tests like CT scans or X-rays.  

On the 13th day, I received my stem cell transplant from a donor as my brother wasn’t a match. At the time I was extremely ill, unable to swallow, drink, or eat. I had to rely on a nasal tube, as my Hickman line had become infected. I received blood transfusions and underwent counselling to cope with being away from my children. In a situation where I craved control, I found myself powerless.  

For nearly a year I struggled to do some of the simplest things like walking, eating, and drinking. I had to use a Sippy cup as I couldn’t drink without one. What hurt me the most was that I couldn’t hold my baby for two months after I returned home from hospital. This got me down; I felt like a failure as I couldn’t do the things I wanted to.  

Post-treatment recovery

Six months after my transplant, we were faced with financial strain, childcare challenges, and health complications, adding just another layer to our uphill climb. 

I continued to get infection after infection as well as graft-versus host-disease (GVHD). At the time my muscles were tight, I couldn’t straighten or stand up and it impacted my bowels, lungs, and uterus. It sent me into early menopause which was just something else for me to deal with! At 31 years old I was put on HRT, and it took a while to get the levels right for me to feel ‘normal’. Then, in 2017, I was hit with something else. I had a high-risk (abnormal) smear test result, which meant more treatment, and even more delays to recovery. 

Looking to the future

I’ve been struggling with health anxiety. Thankfully, counselling is helping me cope because I know I can’t keep feeling this way forever. It’s been a few years, but I’m starting to make progress towards feeling better. Talking about my experiences, even though it’s tough, has been surprisingly helpful. I can see some positives now, which gives me hope that I can overcome this. Of course, there are still some tough days where I feel sad, especially when I think about the people I’ve met since my diagnosis who didn’t make it. I feel guilty for surviving, but I’m truly grateful to be alive.  

Just before I went for my stem cell transplant, I promised Craig that if I got through it we would get married, and on 6th August 2022, we tied the knot. It was a beautiful and meaningful day to the both of us. 

Thomas, now five, brings boundless joy and brightness into my life. Health challenges persist, but with immunosuppressants, regular check-ups, and an unwavering spirit, I continue to embrace life.

My message of hope

In sharing my extraordinary journey, I hope to inspire resilience, highlight the strength found in familial bonds, and celebrate the remarkable power of hope. My story is a reminder that even in the darkest moments, there is room for triumph and joy.”

Support services

If you or a loved one needs advice or support regarding your diagnosis, please get in touch. You can call our free helpline on 08088 010 444 and speak to one of our nurses. Alternatively, you can send a message to our team via WhatsApp on 07500 068 065 (services available Monday to Friday, 9am – 5pm).

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Local face to face support group sessions take place on a regular basis and are a great way to bring people together to help each other with emotional and practical support. To find your local support group for you, email our team by completing the online form below.

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