Want to help improve brain tumour care? Take part today

Our Relationship Support Service is helping relationships thrive

To celebrate Valentine’s Day, some of those we’ve helped through the Relationship Support Service were kind enough to share their experiences.

Valentine’s Day is a time to celebrate love, but, as Shakespeare famously wrote, “the course of true love never did run smooth”. And this can be especially true when you or your partner is living with a brain tumour.

That’s why this Valentine’s Day we’re shouting out all those couples whose lives aren’t full of cherubs and love hearts right now; every couple that’s managed to weather the storm; and everybody who feels daunted by the idea of starting a new relationship after being diagnosed.

You certainly aren’t alone!

A brain tumour diagnosis can put a strain on even the healthiest of relationships and make it harder to start new relationships.

In fact, our Losing Myself report found that 2 in 3 people felt their diagnosis had a negative impact on their relationship with their partner. For some, this added strain can cause the relationship to completely breakdown and, if the relationship can be maintained, it’s often changed significantly.

I split from my partner of five years following my diagnosis. It put so much strain on our relationship and we were unable to deal with it.

39 year-old woman with a low grade tumour

72% of the people we spoke to reporting that a brain tumour diagnosis had affected physical intimacy in their relationship. One man we spoke to said that he felt like his wife had “become his mother” now that he relied on her for care.

The distress of personality changes caused by a brain tumour can also be overwhelming. One participant told us that his wife had divorced him because of his personality change and another described feeling like she was “married to a stranger”.

I felt I was married to a stranger and had to relearn how to love again.

57 year-old woman with a low grade tumour

Good quality relationships can even affect survival and quality of life, with research showing that married people are likely to survive longer after being diagnosed with a glioblastoma – the most aggressive form of brain cancer.

That’s why we launched our Relationship Support Service in April 2020, partnering with Relate, the leading relationships charity in England and Wales, to deliver a free counselling service for UK-based couples and individuals whose relationship has been affected by a brain tumour.

You have done exactly what I needed – someone outside of my immediate family to listen to my past emotional problems. This alone has helped me through my road to recovery.

Service user who is living with a brain tumour.

Since then, we’ve made 127 referrals to Relate and provided 562 free sessions with Relate counsellors. The service has helped couples keep their relationship on track, provided a lifeline for relationships that are really struggling and helped those without a partner feel confident about starting a relationship.

We asked some of the people who’ve used the service to tell their stories (some personal details have been changed slightly to help protect people’s privacy).

Brandon

Brandon’s partner experienced low moods following her brain tumour diagnosis and it was becoming difficult to jointly care for their daughter. Conflicts at home seemed compounded by lockdown.

Brandon found life a challenge, he often felt tearful and was struggling to access support from his network because he felt he didn’t want to burden them. That’s when we introduced him to our Relationship Support Service.

“It’s been a great help; it has been really supportive. I’ve felt understood and backed. I’ve felt the therapist has been really there for me. It’s relieved some pressure and given me a space to explore my emotions without worrying what the other person thinks or worrying that I need to protect them.

“I’ve had around half the allocated sessions and it’s been agreed I can reserve the remaining ones for as and when I need them – I feel this may be soon as my partner is due to have surgery in the next two months.

“It’s the most flexible and personal service I’ve ever experienced, tailor made for my needs and the situation of a partner living with someone with a brain tumour.

Nicola

Nicola was diagnosed with low grade ganglioglioma in 2017, but doctors say she may have had the tumour since childhood.

She met her partner, Matt, in 2013 prior to her diagnosis and credits him for providing invaluable support throughout her treatment, recovery and continuing in the present day. Both Nicola and Matt have made use of our Relationship Support Service to help keep their marriage as healthy as possible.

In the first session, the counsellor got an understanding of how everything has been since the diagnosis; how home, work and family life fits in with us all at the moment. After that we had a separate session each and then one together

“As someone directly affected by a brain tumour, it made me feel better that my partner had someone to talk to confidentially – or even just vent to!

I believe the Relationship Support Service will really help other people who are directly affected by a brain tumour. We don’t always talk about everything to our partners, and vice versa, so it’s wonderful The Charity can offer this help to others. Especially those who might be struggling more than usual because of all the additional stress during the pandemic.

Ed

Ed from Kent was diagnosed with a Grade 4 glioblastoma in June 2018 after he collapsed at work. He and his wife have recently been using the Relationship Support Service to help support him as a husband and father.

My wife and I had been together for 10 years when I was diagnosed. Until then, our relationship had been so carefree and we knew that we had a long-term future together. However, my diagnosis threw all that into question overnight.

“We did still get married just nine months later and we soon welcomed our first child after going through IVF. The diagnosis really changed how I viewed myself and all of a sudden, I needed help and support to complete what should be really simple tasks.

“I thought that I had become a burden – someone who needed caring for – and it really knocked my confidence. This resulted in a total lack of interest in the physical side of our relationship.

“The Relationship Support Service with Relate was so empathetic though. I quickly built a rapport with a professional ear, which gave me the confidence to discuss in detail the emotional and practical barriers which were creating the issues in my relationship.

“We talked openly and real effort was made to understand my situation, offer practical solutions and also understand that sometimes maybe I didn’t want to talk.

“If someone is looking for practical or emotional relationship advice, I can’t recommend it highly enough to help navigate the tricky ways in which a brain tumour diagnosis can impact on a relationship.

Alan

Alan is 59 and was diagnosed with a low grade brain tumour in 2010. Having met his wife Erica in 1988, they have been married for 30 years and they have two children together.

At the start of our marriage, I was incredibly busy running my own business and Erica was responsible for bringing up the children. We had a strong social circle and we were very happy together.

“However, I began taking medication to treat my pituitary gland and it almost certainly changed my mood. I was quick to go from calm to very angry and took this out on whoever was ‘in range’. Once I had calmed down I found myself confused as to how I had let it happen.

“I had previously had counselling and had learnt some great coping strategies for when I was feeling under pressure. So, when The Brain Tumour Charity offered the opportunity to work with Relate, Erica and I decided to try joint counselling. This took place on Zoom due to the pandemic.

“We found it so helpful – we have learned to plan time together and we now have a designated ‘date day’. Erica has also learnt not to worry about things which she can’t control and I definitely don’t get so angry anymore. I would suggest that other people try it too as they may find it as beneficial as we did.


Have you experienced changes to your relationship with a partner because of a brain tumour diagnosis?

Do you feel you need support to help start a new relationship or keep your current relationship on track?

If so, you don’t have to try to cope with this alone. We’re here for you.

You can find out more about our Relationship Support Service in our counselling FAQs or register your interest using our online form. You can also contact our Support and Information team today to find out more about the service.

The referral form for the service was so easy to fill out online and I received a call from The Charity the next day! I spoke to a lovely lady that talked me through everything, gave me so much advice on how to remain positive and encouraged me to ask the professionals anything – even it seems daft. That call from her made my day that day.

Service user

It’s really helped my husband and I think about how to realign things for this next chapter in our lives and provided some great ideas for how we can do that. For me, it also provided some reassurance that things weren’t quite as bad as I originally thought they might be. It also gently introduced my husband why having a therapist or a neutral person to talk to about his own feelings would be very nurturing for him. Thanks so much again for this wonderful service, I am eternally grateful!

Service user