Want to help improve brain tumour care? Take part today

Love is in the air for our Young Adults community

Some of our Young Adults Service community explore how to give Cupid a helping hand this Valentine’s Day.

Love is all around for Valentine’s Day – but the path to romance ain’t always smooth.

Relationships can be tricky, never mind factoring in a brain tumour. Our supporters talk from the heart about how to give Cupid a helping hand.

Beth, 28, a primary school teacher

Dating CV: Long-term relationship since before diagnosis

My ♥ tip: If people really love you, they’ll accept having a brain tumour has helped shape the person you are.

“I told him he could leave me – but now we’re planning our life together!”

When Sam (finally!) proposed to me on our 10th anniversary on New Year’s Day after years of heavy hints, it just felt right.

Rewind a couple of years and I’d told him he could leave if living with my diagnosis was too much for him.

But he said he wasn’t going anywhere and now I can’t wait to spend the rest of my life with him. We live apart during the week for work but we’ve bought a house and see each other most weekends.

We’ve been together since we were 18 and met through mutual friends. I went to Bangor University and he was at Coventry University, but we managed to visit each other regularly.

At 22, after months of headaches and dizziness which were put down to labyrinthitis, I was diagnosed with two brain tumours.

My mum broke the news to Sam on the phone as I was struggling to process the news myself, never mind explain it to him.

He rushed straight to my parents’ home to help support me. My surgery, three lots of cyber knife and endless hospital appointments made things pretty tough on us.

But the worst part of my treatment was being on steroids. I put on two-and-half stone and felt so bloated with a moon face. It knocked my confidence but Sam reassured me he still found me attractive.

And I suffered terrible mood swings, poor Sam just ended up agreeing with everything I said to keep the peace!

Now things have settled down as I’m stable and have scans every three months – “scanxiety” is part of our lives but we focus on the positive.

Sam loves me for me – he makes me feel “normal” – like Beth, a person, a woman – not a brain tumour patient.

Tilly, 21, an English literature student

Dating CV: Single

My ♥ tip: Wait until you’re comfortable to tell dates you’ve got a brain tumour – and remember you only have to share as much as you want to.

“I don’t tell dates about my brain tumour straight away.”

Currently, I’m single but when I’m dating, the same thoughts run through my mind: Should I tell them about my brain tumour? When? What will they think?

I worry if they’ll notice my symptoms like the slight droop on the left side of my face, a stutter and going blank sometimes.

And on a few dates, lads have gone to hold my left hand and I can’t squeeze their hand back because of weakness on that side. Usually they don’t say anything, but I fret they’ll think I’m stand-offish.

I don’t tell dates about my brain tumour straight away. I’ll wait until I’m comfortable with someone and things are looking serious.

Most people are fine about it but usually have lots of questions which I need to be ready for. The first are usually am I OK and will I survive?

Some boys couldn’t deal with it, especially after my surgery in June 2016 when I was in hospital a lot. They dumped me and never spoke to me again.

But you soon become a good judge of character and know who the nice guys are.

I’ve dated on and off and I’ve never had a serious long-term relationship – but I know the right person will be there for me.

A woman feeling supported as she scrolls through the posts in one of The Brain Tumour Charity's Online Support Groups.

Join our online support community for young adults

Our online support community is a great place to connect with other young adults who are affected by a brain tumour and share experiences of how you’ve managed relationships.

Chantal, 24, an anaesthetic practitioner

Dating CV: Newly engaged

My ♥ tip: Ask yourself if you’re ready to let someone into your sometimes confusing, overwhelming world. But if you feel ready to love – and more importantly to be loved – it’s the right time for a relationship.

“I was worried life with a brain tumour would rob us of our carefree 20s – but it’s enriched our relationship.”

At 22 and 18 months into my first relationship, I was diagnosed with an inoperable brain tumour.

My boyfriend Ryan stayed at my side and two years later, we’ve just got engaged on February 4. He held up our new puppy Dexter and it had a diamond ring around its collar!

Facing everything with Ryan is all I could wish for.

Now I’m blessed my tumour is stable but being diagnosed did initially put a strain on our relationship – I feared dying and it made me sad Ryan was being robbed of his fun, carefree 20s.

When I got my MRI results, at the time I was ironically working in awake neurosurgery. I rang Ryan and he came to see my consultant with me.

We talk about everything and I told him that if anything happened to me, I wanted him to find love again.

But my outlook is much more positive now because of Ryan’s attitude. He always makes me feel supported, loved and tells me I have a beautiful soul.

We both work incredibly hard but always find time for each other, whether it’s cooking a meal together, hitting the gym or going to the pub with friends.

There are some days that I get an incredibly bad headache, but it does make me giggle that I can pull the “headache” card whenever I’m feeling too lazy to get frisky!

Life with a brain tumour has been more rewarding than I could have ever imagined. Our outlooks and experiences are different than those of “normal” couples, but if anything it’s enriched our life together.

Molly, 19, a psychology student

Dating CV: Met boyfriend three years after diagnosis (Molly and Harry are pictured at the beginning of this blog post).

My ♥ tip: It’s only natural to be nervous about starting a relationship after a diagnosis, but remember there’s no right way to do it – even if you haven’t had a brain tumour – so just have fun!

“Don’t be scared to say what your limitations are.”

After being diagnosed with an ependymoma at 16, dating was the last thing on my mind for nearly three years.

Then just after getting the all-clear, I met Harry at sixth form. We texted non-stop for a week and hit it off straight away.

Our parents had mutual friends so he already knew about my diagnosis.

One thing I can’t stress enough, especially if you have fatigue, is to know your limits and don’t be afraid to voice them.

On my first date with Harry, we walked loads and I was exhausted, He asked if I wanted to go to lunch and I told him that I’d had a great time, but should probably go home.

It felt awful because I didn’t want to disappoint him, but he understood and if your partner can’t understand these (not so) little things then they’re not right for you.

Although Harry already knew about my diagnosis, other than the big scary label “brain tumour,” that was it.

So I gradually dropped in random bits of information as I didn’t want to overwhelm him – when my Facebook memories popped up, I’d share the stories behind them with him.

He came to my last scan with me as he said he hadn’t experienced that part of my life and wanted to be there for me.

Harry always lets me make the calls on my health. If I think something will make me too tired, if I’m not feeling well or if I’m a bit anxious, he respects that I’m the expert and asks what he can do to help.

Young Adults Service

Are you a young adult aged 16-30 with a brain tumour diagnosis? Our Young Adults Service is here for you, helping you to connect with others and supporting you with any information you might need.

Lizzy, 20, a speech and language therapy student

Dating CV: Diagnosed six months into her relationship

My ♥ tip: Learn to love the “new you” and count your blessings

“I worry I’m a burden on my boyfriend – but he says I make him happy.”

I’d been with my boyfriend Matt for six months when I was diagnosed with a low-grade glioma last June while I was on a university placement.

And I couldn’t be more grateful for his support and the network around me.

We first met when I was 15 when we danced together – he went on to train as a professional dancer and we lost contact.

A few days before Christmas 2018, we bumped into each other when Matt was working at my local brewery and I was picking up some beer.

It is hard coming to terms with the impact my brain tumour has on my everyday life.

I don’t drink, which is ironic as Matt works at a brewery so his friends do sometimes ask why I don’t drink and I’m the one nursing a lemonade while I’m out with my uni friends.

My predominant feeling is guilt – as though I’m a burden to my boyfriend, which he assures me I’m not.

My stubbornness and desire for independence can cause the occasional argument – losing my driving licence has had a big impact as I have to rely on Matt to ferry me around, and he has to make the four-hour round trip to visit me at uni.

But I realise that the true turmoil is within myself and having to adjust my sense of identity to being someone who sometimes needs looking after.

I rely on Matt to fill in my neurologist as I don’t remember my seizures and to remind me to take my medication when I’m too sleepy from my anticonvulsant drugs.

Overall, I know I am very lucky to have a low-grade tumour. Life is still sometimes a bit of a struggle, but Matt makes me happy.

Molly, 22, Young Ambassador 

Dating CV: Catalogue of online disasters until she met “the one.”

My ♥ tip: Just hold on and don’t rush into anything or accept somebody who isn’t right for you – and who doesn’t deserve you.

“I found love when I gave up looking.”

Brain tumours and relationships are a difficult mix – my main issue was meeting some absolute idiots on dating apps.

At first, I didn’t tell guys about my tumour until we were thinking of meeting up and suddenly they blanked or unmatched me.

Eventually, I got sick of people wasting my time so I decided to be upfront in my bio that I had a brain tumour.

Cue a message from one guy who asked if I’d mentioned it to get a “pity shag.”

Someone else messaged to tell me that boys prefer girls with long hair – so, me being me, I messaged him back: “Well, girls prefer not to have brain tumours, but it can’t always be helped.”

But when I stopped looking, I got lucky when I met an incredible man, Jeremiah, in October.

On our first date, we walked along the seafront and talked for hours. Immediately, he saw past my brain tumour and saw me for me.

He’s so supportive of my work as a Young Ambassador with the charity, hospital appointments and my daily struggle coping with fatigue and how much sleep I need.

Jeremiah came into my life when I was least expecting it – and he was worth the wait.

Staying safe online

Dating is fun, but be savvy and keep yourself safe. Here’s how.

Your profile

  • Be clued up about your profile picture.
  • Best not to post photos you don’t want your work colleagues or future possible employers to clock

Getting to know someone

  • Beware of scammers – never give out your bank details
  • Take it slowly and don’t over-share – there’s no rush.
  • Stay in meeting and chat rooms

Meeting up

  • Meet in a public place
  • Let family or a friend know where you are
  • Don’t drink too much!
  • If your date makes you feel uncomfortable, leave – and let the dating site know