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Brain tumours are hard to treat and survival remains stubbornly low. That’s why brain tumour research is one of our top priorities. In the final of a 3-part series, Sue shares what it’s like to live with a brain tumour.

It might sound strange, but I was first diagnosed with a brain tumour because my gynaecologist referred me to an anaesthetist that he knew. I was 36 at the time and I’d been having migraines for years. I’d been to the GP but nothing they prescribed worked.

Botox was just coming out for migraines, but because of my medical history the anaesthetist couldn’t give me the injections without sending me for a brain scan first. That’s when they found the tumour.

I was referred to a neurosurgeon and was back in hospital within 3 days as an urgent case. The surgeon said he couldn’t do a biopsy because of the tumour’s location, as it would cause a massive bleed in my brain. I was straight in for surgery, which lasted five and a half hours. When my results came back, they’d found it was a grade 2 astrocytoma.

An invisible illness

Even though I’d been having symptoms for years, the diagnosis still came as a shock. I had 3 young children at the time and had to stop and think about them, and what would happen if something happened to me.

Because it wasn’t something you could see, like a broken leg, people just assumed that I was OK.

I recovered well from my operation and once I’d had my staples out and my hair was back to normal, you’d have never known I’d had brain tumour surgery.

Because it wasn’t something you could see, like a broken leg, people just assumed that I was OK now, so I didn’t feel that I got the support I needed. I wished people would have offered to take the kids out to the park for a few hours; my youngest was only 2 at the time so it was really difficult. But they just didn’t understand, which was frustrating.

At times like this you really find out who your friends are. We had some friends who, when I was on treatment, would come around and cook for us so many times. I never asked. It was brilliant, and just what I needed.

Living with unknowns

For the next 6 years I was well, and life was normal. I had to have scans every 6 months which were always OK. I don’t mind the machines, and there’s a lot to be said for building up relationships with the staff. I got to know them all and they’re all brilliant.

Then, in 2013, I had a serious seizure in my sleep while on holiday. We came back home the next day and I was given another MRI scan, but everything was fine. So, I was put on anti-seizure medication and for the next 6 months I was fine, the drugs seemed to stop everything. But then the seizures returned, first occasionally and then several times a day. The MRI scans still didn’t show anything, so in May the following year I had a different type of scan called an MRS, which is much longer and more detailed.

That picked up unusual levels of brain activity, so I had to go back in for surgery. The tumour had come back, but because it was picked up early it hadn’t had time to grow into a large mass. This time though, the tumour had changed to a grade 3.

For my type of tumour, it will never be: “You’re better now.” There’s no cure for it.

I needed to have 18 cycles of the chemotherapy drug temozolomide. It was 3 weeks on and 1 off, 18 times. It was a long, tough process. I did really well, I think it’s a brilliant drug. For me though, the worst part was the fatigue.

It really does wipe you out. But I had to carry on, and I was getting up every day to make sandwiches for my kids to take to school.

Right now, everything is OK. But for my type of tumour, it will never be: “You’re better now.” When I last saw my doctor, and asked him what my chances are, he said that unfortunately my tumour is the kind that will simmer away, and it will come back again.

There’s no cure for it. It’s how long I’ve got that’s the difficult thing to come to terms with.

For me it could be 10 years, or it could be 6 months. That’s the sad thing, I just don’t know. And that’s the way I must live.

Taking life as it comes

It’s been 11 years since my diagnosis, and I have good days and bad days. It’s changed my personality, which is probably because the tumour is near my temporal lobe, where emotions are made.

It depends on the circumstances as to how I react to people in different situations, but I’ve got a really bad temper. I know I’ve changed, but I never use the tumour as an excuse.

You’ve got to make the most of what you’ve got and enjoy the life that you have.

It’s worse when people around me have died because of their brain tumours. Because I’ve had cancer for a long time now, I’ve met a lot of people who have also had brain tumours. Some of these people haven’t been as unwell as I have, but then they’ve suddenly died from their disease, while for others their treatment hasn’t worked or stopped working.

In the last 3 months, 3 of my friends with the same tumour have had their disease come back and they didn’t have any symptoms. There just aren’t enough success stories for brain tumours.

I still have scans every 3 months, but my attitude is that I can’t change anything and I must take each day as it comes.

I’m quite tough, so I don’t believe in sitting around feeling sorry for myself. I don’t look at life as time I’ve got left. You’ve got to make the most of what you’ve got and enjoy the life that you have, because it passes you by.

If you’ve been affected by cancer and would like to speak to someone, you can call our nurses on freephone 0808 800 4040, 9am until 5pm Monday to Friday. Alternatively, you can join our friendly and supportive discussion forum, Cancer Chat.

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Penelope Kostick August 9, 2018

Thank you Sue for this! I don’t have a brain tumour but a malignant uveal melanoma (eye cancer). I’ve had the radiotherapy and am awaiting results. If it’s ‘cured ‘ the tumour; the actual cancer itself can return but to the liver, not the eye. So I too am in the position of six monthly scans. I absolutely understand the lack of support where there are no spots to show you’re ill! I’ve experienced this for 30 years with an invisible heart condition rendering me just 25% capacity and overwhelming fatigue. The thing is there are far more things on this planet that can kill us! That’s the way I see it. I take each day as it’s the most important day of my life, and try to be laid back by any unfortunate crass comments! It really is important to be kind to myself and realistic in what I can do. That includes cutting the grass in cycles of ten minutes with two minutes rest for three hours – if that’s what I chose! (Not often!) I do everything I can too boost my immune system and try to exercise as able. And every time the fear or worry comes into my head I remind myself of at least 10 things more important in Life, to think about instead! Life does pass you by, you’re absolutely right, the last words my father gave me before he died (of prostate cancer) were Live, you must live, live your life. You Sue, are doing just that. I take much encouragement from your writing and hope in a small way I may give you some too. While there is breath in our bodies, we will live.

Sue Hunt (friend of Marjorie Harper) August 4, 2018

Life can be so cruel sometimes! Your blog is amazing and you are an inspiration to others who suffer or have suffered this terrible disease. I am so pleased you are doing well and as they say ‘keep up the good fight and stay strong, each day is precious to everyone xx