Today we'd like to hear how your brain tumour has impacted your social life

[Jane_TBTC]

Has there been an impact on your partner? Parents? Children? Friends? Or other extended family members?

[Tumo Pioneer]

Yes I think my brain tumour diagnosis impacts on everyone around me. Firstly financially it made a big difference as I didn’t know where to get help and was on SSP for 6 months then nothing. PIP is so hard to apply for when I have sight problems etc. They really should give it to anyone going through this for at least 6 months. I often wished my Tumour was cancerous as it would make it easier to get help. (Of course I didn’t really mean that) it took them 12 weeks to assess me and I never scored 1 point, what an absolute joke. Appeal they said but I wasn’t strong enough and felt like I was a liar, so no money no social life, that was 4 years ago. Now going through it all again, TBTC are helping me fill in forms next week but I just can’t cope with all the stress of trying to justify why I can’t work full time yet, so I just battle on. I can’t walk far so outings are difficult, I can’t drive and hate asking for lifts, so I don’t visit anymore. Get a blue badge they said, but guess what, I was turned down. Then I was told if I can’t drive on medical grounds I can get a free buss pass, well no I can’t? I’ve had to go back to work or lose our house as still paying a mortgage. So yes my social life has been impacted on because of health and money, which is affecting me, my husband our son and our family and friends. Then came Covid!

[Hidden in reply to Tumo]

Sounds really tough and a bit of a catch22 situation being unable to access services which would help to improve your social life. I do understand your comment of ‘cancer’ diagnosis making services more accessible such as mobility issues and living expenses related issues. I am so pleased the BTC are able to help you with forms and I wish you well in getting more help to enable a social existence. Best wishes to you and your family whom are all impacted by your situation. 🤗

[MimiSpree in reply to Tumo]

Yes, the disappointment one experiences with programs and people that I assumed would be a no-brainer I'd one of my greatest dilemmas.

[Hidden]

I noticed when my daughter was diagnosed (aged 17) friends were afraid to be in touch - the diagnosis cancer and brain tumour are frightening. I suspect friends were also afraid to see my daughter blown up on steroids and minus hair. Being immunocompromised limits your ability to 'go out' and socialise, so, on-line communication predominated her social existence apart from two close friends who came to see her and treated her completely normally. Family were fine because we ket them updated with news and pictures to prepare them for visiting and not to be frightened by changes in appearance. Animals are unconditional so my daughter made sure she visited a favourite horse weekly (she'd just finished an equine course) and she regularly snuggled with the family dog when she was feeling grotty. Her sister set up a private facebook page to invite close family and friends to follow her 'journey' - it kept people involved and supportive as well as educating them on exactly what the diagnosis and treatment involved. We did a few fund raising events to highlight charities such as the Brain tumour Charity which increased social interaction (and education.) The Brain Tumour Charity events for young people was a lifeline as has been the Ellen MacArthur Cancer Trust sailing trips. Since recovery some old friends have reappeared and new friendships have developed. As a family we are very sociable, so we have continued to immerse her in those social aspects of life during all stages of her diagnosis, treatment and recovery. I hope that this has facilitated her growth in confidence and can do attitude along with empathy for those who were frightened to be with her when she was poorly. I must add that social media has a place in a constructive way of allowing social contact when face to face contact is not possible (particularly in the current climate with the pandemic).

[Brownie_bea]

Yes, I don’t go out unless I really have to (hospital etc) I’d I see someone I know I try and hide, I don’t want to answer questions as I don’t want to cry in public. My husband is great but we don’t get intimate anymore, he’s scared he hurts me or affects my wound 😢

[Shannon_TBTC Partner in reply to Brownie_bea]

I am really sorry to hear that Brownie_bea, this sounds really difficult for you.

If you ever want to speak to a member of our support team, you can contact us on 0808 800 0004 (Monday-Friday, 9-5) or email us on support@thebraintumourcharity.

In addition, we have found that many of our community affected by a brain tumour diagnosis have experienced an impact on their relationships. We have partnered 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.

Our free counselling service is here to support you, whether you just want to check in to help keep your relationship on track or you feel like you’re really struggling. And you can access it as an individual or as a couple. This may seem like a large step to take but it may help you both understand your relationship better.

You can find out more here- thebraintumourcharity.org/l...

Best wishes, Shannon

[plushelephant Pioneer]

My daughter Oksana fell ill at the age of 13. She was a sociable outgoing girl and friends, as for most teenagers, meant and mean a lot to her. Before the disease, she just went to a new school. Unfortunately, since then only one girl has remained as a friend (though she is very busy), thanks to the fact that her mother understands how Oksana needs friendship and support. Other children who do not see Oksana for a long time do not think about her. It is very sad. Even though I several times asked the parents of children from the class where Oksana is homeschooled, to call or write to her a bit, they don’t.

[Wolfie04]

I don’t have a social life

I don’t have a significant other

I don’t have the will

I don’t have the money

I don’t have the confidence

I don’t feel significant or it being worth it.

I’m on a whole load of medications for this ongoing situation. One of them is giving me an issue that I cannot deal with. I’ve had the weight gain, I have the unhealthy glow and now I have sweating. An awful word for an awful “thing”. It’s not the sweaty armpits type. It’s the makeup slides off your face type - so I don’t wear it. Head sweats - so I have cancelled my hair appointment. It’s the needing to have a lie down just after a shower type. It’s visible. It’s embarrassing. It’s changed all this head/brain crap into something else, it’s even personal. That probably sounds odd but it’s ridiculous. I’ve been through five years of my head ruling my life and I’m tired. I lost a pair of sunglasses the other day. It really upset me! I’ve lost so much but losing those sunnies was really really upsetting and I cried about those glasses. Found them the other day! I’d just misplaced them and I cried that I’d misplaced them. I’m not the person I used to be. I’ve lost pretty much everything to this. I’m living today with some of the decisions I made before diagnosis. I made some stupid decisions....

Sorry, I’m just full of self pity this morning. I woke up to my usual fuzzy head.....gets a tad boring. I wish I could’ve held on to some people that I had in my life previously but they came and went. They got bored..... fair weather friends.... don’t blame them coz I’m bored. Let’s “hope” we all can have a better week. Just watched news and Newcastle (where I am) gone into lockdown restrictions! I’m pretty sure that I’ve been in self isolation for five years! There’s a lot more going on than me and my gripes. Kind of puts me to shame to gripe on about me this, me that.....

Sorry again I think I’ve taken this question of “social life” to far. Too much information!!!! 🍀🦋🌻🍀

[Tumo Pioneer in reply to Wolfie04]

Wolfie04 anyone of us could have written this I’m sure. Forget the past you, become a different you, try to laugh with yourself. I make notes now of what I think I’m going to do and cross them off as I do one at a time, no specific time or order. The worst thing is when I misplace my notes, and the worse is when I misplace my phone. We are all in this together, it will never go away but we are here for each other. Take care

[Wolfie04 in reply to Tumo]

Thanks Tumo. I know I’m stuck in the past but reality is all this “stuff” is very much current. I’m stuck in a bubble. Its like time has stood still! Living a nightmare and the only thing that changes is my age and date! Just woke up on a downer today but I thank you being there and replying to me. ⭐️

[KazBlue]

My social life is zero. Im scared to go out as I cant see straight and with all the shaking and stammering I am scared people will take the fun out of me. I have this tiny schwannoma less than a cm big but the impact it has had on me is massive. I used to love a chat with neighbours over the wall or meet up with a group of friends for a meal. Now I have issues getting food in my mouth and not over the table or my clothes I shake so much. My poor partner has taken so much flack from me over this. He gets my temper, my tears and my frustration. He has not come back at me his patience is amazing. My daughter however has autism and has a tough time dealing with emotions as she cant read faces like we do. She is coming down very little from her room right now as we all adjust. She has been oretty incredible too trying to step up to the plate.