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Highs and Lows after Brain Cancer

Charley‘Insta-friends’; True Friends; Good Family

After brain cancer, my ‘new normal’ is quite a relaxed existence. I used to be very active, going surfing and rock climbing, but now I focus more on building relationships with my family and friends.

You definitely find out who your true friends are when you almost die. And you find out which ones are the terrible people who just enjoy the gossip. I see the latter as ‘insta-friends,’ being nice to look nice. They are happy to find out everything they can on Facebook and pretend to be your best friend, but then offer no actual support to help you out.

You find that the people who really care don’t want to interrogate you to find out all the details, but they offer to spend time with you and take your mind off things, or if you want to talk then they'll happily listen but they don't make such a fuss.‘insta-friends,’ being nice to look nice.

My family have in all honesty been wonderful. We have grown so much closer and it makes you realise how much that matters because cancer does a solid job of pushing people away, even making you shut off from people. When you still have people around after… it means a hell of a lot.

Local Support

I also was lucky enough to find a local service called Cancer Information and Support Services who provide free counselling to cancer patients. My counsellor helps me a lot because I have to have MRI scans for life and she’s helped me calm down and reduce my anxiety and scanxiety. I’ve never been great with emotions as a whole so it’s been a massive help to my mental health.

We also have a Maggie’s around here and if you can get to one I would go. They’re a massive source of support even if you just want somewhere to relax after an appointment. There’s no stress or pressure there and they also helped me with my PIP forms which are essentially a giant essay on how rubbish you feel.

Returning to work

I went back to work full time during chemotherapy because I wanted to be able to live alone and manage rather than stay with family. They’re great for support, but I can be an antisocial cow and I need time to myself.

Plus cancer sadly makes you poor. I’m one of the lucky few who qualified for PIP and even that money is a struggle to live off.

Sadly I hated my job but there we are. I’ve got a new one now and thanks to the Equality Act they have to be very supportive. To be honest, I’m sure they would be anyway because they’re all really nice.

It’s still not the dream job but I’m going to start studying part time and hopefully become a teacher eventually.

The Lows

There have been quite a few sad moments. A friend I made during treatment passed away and I think that affected me a lot more than other deaths because we had the same form of cancer. And a family member died of a different form of cancer recently. It felt strange being at his funeral. Like you’ve cheated death a bit.

Top Tips

I haven’t really enjoyed the last couple of years, but weirdly it has had its plus sides. My family are so much closer. I’ve made more important decisions about my life and career and I have some close true friends.

The main advice I would give is that doctors have seen it all. Ask questions. Tell people you're struggling and make sure you get help.We’re really excited to have a little girl. She feels like a reward for the last couple of years.

Also, if you just want to spend a day relaxing at home, if you want to cancel plans, people will understand.

Strangely, there are also cancer and disability perks. You can get a blue badge for car parks, a bus pass free of charge, and the disabled train card. It’s worth it, especially if your driving licence was taken away.

There’s also a website called Ellie’s Friends which is only for cancer patients and they have loads of lovely prizes you can win. I won a glamping trip which I’m off to in a couple of weeks but there are also other gifts like food and spa vouchers and books. 

Family in the Future

I’d say now, apart from the scans, my life is pretty good! My boyfriend proposed a while back, I’m currently 23 weeks pregnant and other than the fact that the nausea still hasn’t buggered off, the baby is doing really well.

We’re really excited to have a little girl. She feels like a reward for the last couple of years. I know there’s always a risk of the cancer coming back but I’ve managed before and I will manage again.

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Discussion

Val (not verified)

I have a funeral to go to next week of a friend who died quite suddenly of cancer. She was told the chemo was working and then died the following day. So hard for the family . Why do I feel guilty about seeing her daughters - I am almost 2 years into remission. I visited her and we chatted about how she felt and people’s attitude to her. She said it helped - we used to laugh about the inappropriate things people would say and do!