Friendships changed after my brain tumour

In 2019 my life was going along very nicely, family life was great, I had a lovely group of friends and the charity I was running was going from strength to strength. All that changed in the October when I started to feel weak on my left side. I had trouble walking, balancing, and sleeping.

I made an appointment with my GP who arranged a blood test which showed that I was very low in Vitamin D, and I was advised to buy some from the supermarket. The shoulder pain was put down to a trapped nerve. I was very relieved to hear this as I was expecting it to be more serious. There is a history of MS within my family so I was concerned it might be that.

Unfortunately, the Vitamin D didn’t seem to help, in fact my symptoms worsened. I decided to get a second opinion and consulted a different GP, who informed me that I didn’t have MS but that she would refer me to a neurologist to put my mind at rest. Her opinion was that I had developed health anxiety, and she prescribed anti-depressants. These made me feel very nauseous, so I returned to the surgery and told the doctor I didn’t want to continue taking them. She agreed and made a note on my file that I wasn’t to be prescribed them again.

Driving no longer felt safe

Time passed and I continued to get worse. I stopped driving as it didn’t feel safe. In desperation I saw yet another GP, who immediately marked my neurologist appointment as urgent, and I received a date for this at the end of November. By the time the appointment date arrived I could barely walk. The neurologist informed me that I would need a series of blood tests, 13 vials in total, and an MRI scan must be done within 14 days.

I had the MRI scan, which turned out to be the first of many, in early December, and received a phone call from the neurologist the following day to inform me I had a brain tumour and would need to attend my local hospital in Brighton immediately.

Getting a bed proved more complicated, but eventually I was admitted and had brain surgery on December 20. The operation went well, and they managed to remove 90-95% of the tumour. Unfortunately, it was Glioblastoma Multiform grade 4, the deadliest brain tumour there is, with an average life expectancy of 12-18 months. Being told you have cancer is awful, but being told it’s not curable is unbearable.

My life as I knew it stopped in that moment. I had survived the surgery but was about to embark on the fight of my life. After around a month of recovery from the operation, I began a six-week course of combined radiation and chemotherapy, 30 sessions in total. Unfortunately, the radiation centre was an hour’s drive from where we live, but between my husband and a few good friends, I was driven there and back each day. I lost all my hair but considered that was a small price to pay if the treatment worked.

Then Covid added to my problems

GBM4 was described to me as like an octopus – surgery removes the body, and the radiation and chemo kills the tentacles. After those six weeks of treatment, I was looking forward to some normality but, ten days after my final session, the first Covid-19 lockdown happened. Suddenly there was even more uncertainty. No-one was allowed to visit, we were left alone and unable to leave the house.

My scheduled six sessions of chemotherapy were delayed due to the pandemic, but only by around a month as I insisted I wanted to go ahead with them. The nurse from our GP surgery would come and take my blood, then I would have a phone appointment with the chemotherapy team before the postman would deliver all the drugs I needed! I was very lucky that my particular chemo drug was TMZ, which is in tablet form rather than intravenous.

However, following my second cycle of drugs, I developed a nasty rash which had the medical professionals stumped. It was suggested that it could be due to a washing powder we had started using, but when it appeared again during the following cycle they concluded I must be allergic to the chemotherapy drugs. Not happy to accept this, I did some of my own research and discovered that an itchy raised rash was a very common side effect. I gathered my evidence and the doctors agreed to allow me to continue with a steroid and antihistamine to help counteract the effects. I then managed to complete all six cycles, with only minor skin irritation.

Since then, I have regular MRI scans, fifteen in total now. At each one I have felt incredibly lucky to be told that I am stable with no sign of any tumour. I’ve now passed the four-year milestone and, although I will never be in remission, I’m starting to feel more positive about the future.

My life now compared to four years ago is totally different. My children have all grown up now and the charity I was running sadly closed so I was left with a lot of free time and nothing to do. These days you will find me playing bowls, indoor in the winter and outside in the summer, or in my kitchen baking. I give my cakes away in return for a donation which, at the end of the year, I split between a few cancer charities.

Friendships changed

I don’t see a lot of the friends I used to have, but I do have some who have stayed, and I’m making new ones through my baking and playing bowls. Life moves on for everyone and I feel that my life went in a totally different direction than some of my friends. It’s no-one’s fault, it just is what it is.

I know now what is important and what isn’t. I try my best not to stress over things I can’t control – some days that’s easier said than done! I don’t know how long I have left to live, but I’m not planning on going anywhere for a long while yet. I think I do have a lot of what would be called, ‘survivor guilt’ and wonder why I’m still here when so many others are not. Life is a gift and I try my best to make the most of it with my family and the friends I still have.

Sharon is now 48 and has been married to Paul for almost thirty years. They have five sons and live in East Sussex. She was diagnosed with GBM4 at the age of 44. Her hobbies include baking and playing bowls.