Mum-of-one Melissa was just 24 when she was diagnosed with an inoperable low-grade brainstem and spinal cord glioma. Her tumour had an irreversible impact on her mobility and, together with living with chronic pain, she is unable to work. She and her partner Lee have decided not to have any more children because of her debilitating symptoms. Nearly six years on, Melissa, a makeup and beauty blogger, learnt in April 2021 that there has been progression of her tumour and she has since started chemotherapy treatment.
Here is Melissa’s story…
The last year has been very difficult because I live with chronic pain in my neck as a result of my brain tumour, but the pain management clinics I normally go to were cancelled due to the coronavirus pandemic. I had to find an alternative way of managing the pain, so I turned to acupuncture, which I had to pay for myself.
Having a keen interest in make-up and beauty, I have found my Facebook page, MKR Make-Up and Beauty, where I upload tutorials, a great comfort and distraction. I often had days when I couldn’t leave the house, even before the pandemic, so it’s a good way to communicate and feel less isolated. Though I wouldn’t be able to pursue beauty as a profession, it’s a fantastic hobby and a great way to connect with like-minded people.
“Social media is also a useful tool for reaching out to other patients. As a member of support groups, I find comfort in speaking to people who can relate to what I’m going through and that makes me feel less isolated.”
After nearly six years of stable scans, it was a big shock to learn in a phone call in April 2021 that my consultant was concerned about my scan which showed growth of 3.5mm and wanted to liaise with Addenbrooke’s to get their view. I had to wait another two days before I heard that the consultants and specialists unanimously felt that the best route for me was chemotherapy because of my age. I couldn’t have radiotherapy, because I had already that when I was first diagnosed.
Looking back I did have some symptoms like my double vision getting worse and increased left-sided weakeness, which I had put down to me being paranoid, knowing my scan was coming up.
I am now on PCV chemo, which means the drugs are delivered intravenously and in tablet form on the first day in Norfolk and Norwich University Hospital, followed by ten days of tablets at home. I am hoping to be able to complete six cycles by Christmas 2021.
Being on chemo means that my immune system is very suppressed so I have to be really careful not to catch anything. I am pretty much house-bound apart from taking walks for fresh air and exercise.
“Learning that I had tumour progression was a real shock and very scary. I have been told I am now back to having three-monthly scans. But I am hoping that the treatment will be successful in stabilising the tumour and give me more years with my partner Lee and daughter Millie who is now eight.”
As Millie was only three when I was diagnosed, this is really the first time she’s been aware of what’s going on. I sat her down and explained that Mummy would probably feel quite poorly because of the chemo, but it will hopefully make me better. It’s hard because she’s very quiet and doesn’t want to talk about what’s going on with me.
My lovely, caring followers on MKR Makeup & Beauty knew I was going for another scan because I don’t make my brain tumour diagnosis a secret. They were worried when I went very quiet and didn’t post anything in the days afterwards. It took me a while to be strong enough to post a video to share the news of my disease progression, although not surprisingly, I still found I got very emotional. I shared with them the details of my chemotherapy and explained how I am hoping that treatment will make the tumour sleep again and give me more years. The video has had 9,000 views and more than 200 comments and I have been overwhelmed with the amount of love and support shown to me by my followers.
There are no words to describe how it feels to be diagnosed with an inoperable brain tumour at 24. Though it’s been the hardest journey, now nearly six years on from my diagnosis, I’ve learned not to take anything for granted and to appreciate the good things in life. I’m blessed to be a mum to Millie. She’s a happy, healthy and smiley young girl who loves school and gymnastics. She is my daily source of inspiration. My partner Lee is fantastic and my mum and dad, who live in my hometown of New Romney, Kent, have always been there for me.
It’s frustrating that while Lee goes to work and does all he can to support us, I cannot do the same. My tumour has a terrible impact on my mobility, to the extent where I have had to walk with a frame. It’s hard enough being a stay-at-home mum; I simply wouldn’t be able to hold down a job. It’s horrible because I still feel so young and would like nothing more than to provide for our family.
“Brain tumours are indiscriminate and can affect anyone at any age. It’s an invisible illness and to many I might seem like the picture of perfect health. That makes it even harder to deal with and I often feel lonely, as if no-one understands what I’m going through.”
It took a long time to get my brain tumour diagnosis. Having suffered from dull continuous pain in my knees and lower legs, it was frustrating to be told by a number of doctors over a year and a half that my symptoms were merely a consequence of working late and long hours as a barmaid.
However, over time the pain got worse and it became difficult to lift my legs and walk more than 100 yards. My mum could see I wasn’t walking right and I also developed pain in my neck.
I went back to the doctors and demanded a second opinion. I was finally referred to a consultant at James Paget University Hospital, which lead to further tests, but it was several months before I had a full MRI scan.
The scan revealed ‘something abnormal’ on my brain and I went back for an appointment to discuss the results. I was taken into a consulting room with Lee’s parents Denise and Tom and it was explained that I might have MS, Hodgkin’s Lymphoma or more likely a brain tumour. They wanted to refer me to a specialist.
“Further results confirmed I had a low-grade glioma on my brainstem and spinal cord, meaning surgery would not be an option. Later blood tests revealed that some of the cells in the tumour were cancerous, so I would be referred to an oncologist at the Norfolk and Norwich Hospital as the only treatment would be radiotherapy.”
I had 30 sessions of radiotherapy over six weeks and once that finished, I needed routine scans. I coped well during treatment but emotionally everything took its toll afterwards. Physically, I was very tired and was wheelchair bound. The steroid medication really affected my sleep.
I’m relieved that since my treatment ended, my tumour remained stable until recently. However, I suffer from debilitating pain and take daily medication to control this. The medication makes me fatigued and as a result caring for Millie is often overwhelming.
“Because of my symptoms, taking medications and having regular scans, Lee and I had decided early on not to have any more children. Before I started my current chemotherapy treatment I was given the option of freezing some of my eggs, but I chose not to. Caring for a baby while living with my illness would be too hard for me to cope with. This makes me appreciate my family the way it is even more and, truly, Millie and Lee are the reason I keep going.”
Lee and I bought our first house together a couple of years ago, by the seafront in Great Yarmouth, and that’s been a huge positive. It’s very spacious and there’s a downstairs toilet which is a great help on the days when I feel poorly. Millie loves playing in the garden and it’s only a short distance from her school, so she’s able to enjoy her childhood even on the days when I’m in a lot of pain.
“I hope that by sharing my story I help to raise awareness of brain tumours. Though my tumour is low-grade, it’s had a huge impact on my life and while I might look fit and well, I’m living with an invisible illness which means I cannot live my life to the full.”
I am currently taking part in Brain Tumour Research’s Jog 26 Miles in May campaign and am hoping that my efforts will help to make a difference for patients in the future.
Brain tumours are indiscriminate; they can affect anyone at any age. What’s more, they kill more children and adults under the age of 40 than any other cancer... yet just 1% of the national spend on cancer research has been allocated to this devastating disease.
Brain Tumour Research is determined to change this.
Together we will find a cure.