My Dad has terminal brain cancer

Hi, it’s really hard looking after those close to you. I was the main carer for my father in law for his last year before dying of heart failure. I have been the carer for my husband for the last 12 months, he has stage 4 oesophageal cancer,(currently no evidence of disease). Friends don’t really understand. My family live out of the UK so I have no one else close. Everyone says take time for yourself, but how do you do that? Speak to macmillan they may be able to provide respite care so you and your mum can go and get a coffee out somewhere. Also make sure you register as a carer with your local council. They can also provide someone to sit at the house so you can go out. I know it’s hard. My advice is just take any help you’re entitled to. There should be a carer’s network who may know of more help locally to you. Take care, Steph

Thank you for your advice, the only issue is my dad is refusing help from anyone else as he is so proud. It's just me and my mum and she's not very well. 

I think that's what I'm struggling with alot, people not understanding and saying they do, friends not listening or not being supportive. 

I thought talking to people on here would help because it feels so awful. I feel very young and I don't know how I'm going to move forward without my dad. 

Thank you for reaching out, I really appreciate it

Hi, I do so feel for you, my son was diagnosed with a brain tumour in October last year, we found out in January it was glioblastoma.  I think it takes a lot of time to process this as its such an emotional rollercoaster and yes it is so very, very unfair.  People don't understand - I think if this was happening to a friend of mine I wouldn't understand either.  

It sounds strange to say but I think in some ways this is more difficult for the careers and family than for the patient as you have the admin, looking after, coping with moods etc to cope with as well as the worry. 

It really might be worth speaking to a counsellor even if just by phone, I think Macmillan may offer something or I think the Brain Tumour Trust do as well. They may have both practical and self care suggestions that may help you particularly if you are feeling lacking in support in your environment.  Not to blame anyone this is a horrendously tough situation. 

You can of course post here too - I find doing so helps me as i support my son with his treatment. 

Takce care. x

Thank you so much for your message! I'm so sorry to hear about your son, I can't imagine how hard that must be. 

I've just started having counselling and it was her who suggested this site to help me feel less alone. 

I feel very guilty complaining about myself when my dad is downstairs suffering. But it helps to talk to others who understand what it's like to care for someone. 

I'm trying everyday just to make my dad smile or even eat something, I think I'm just abit exhausted. I suffer with mental health problems and I'm struggling to look after myself at the moment, so your message means alot knowing there's others who are going through the same thing and understand. 

I don't want to take out my pain on others but its very frustrating not having anyone who will listen. Thank you again for your message! 

Hi, I'm not sure my first reply sent. But I wanted to say I'm so sorry about your son, it must be incredibly hard. 

Thank you for your message it means so much to me to talk to other people who understand.

I feel very guilty struggling with my own things when my dad is so sick. But talking to people like yourself really helps. 

HI CFL

a warm welcome to the group. So sorry to hear about all that is going on. Life is cruel. A GBM diagnosis is an emotional rollercoaster ride for all involved.

I supported my late husband through the 3 years plus of his GBM journey so I get it. (You can read the gist of our tale in my bio- I'll not bore you here)

The last weeks are tough. We were handed off to the local palliative care team at the end of Feb 2023 when the oncologist told us G has a few days, a couple of weeks at most. We were in the palliative phase for 8 months but hard as that was, it gave us time to get to know the local team. You don't mention what if any support has been put in place. In our case, initially had weekly phone catch ups with the community nurses and a weekly visit from the local hospice community team. While G resisted this, for the my kids (24 and 26 now) it was a Godsend as we had familiar faces around us and the comfort of having someone on the end of the phone 24/7. In your case, if that's not in place, I'd encourage you to chat with your dad's GP.

All you can do is take this one step at a time. It's beyond hard but please trust me when I say, you will get through this. This is a safe and supportive space so please reach out here anytime. There's always someone about to listen who gets it , someone to hold your hand and to offer a virtual hug when its needed. You're not alone. We've got you.

It’s always good to talk so please remember that you can also call the Macmillan Support Services on 0808 808 00 00 - most services are open 8am to 8pm, 7 days a week Clicking here to see what is available. This service provides lots of cancer information, emotional support, benefit and financial guidance or just a listening ear.

There's no right or wrong way to feel just now. It's ok to feel all the emotions you are going through. Sadly that's part of this emotional rollercoaster ride. Friends are great but you're right, they don't always get it but they will be there for you so please don't discount that support. I'd have been lost without mine over the past few years. You are not a burden on them. They want to help and support you- they just don't know how. This kind of journey is well-outside most people's comfort zone and they don't know how best to help. 

Have you considered counselling? My daughter (24) got counselling via our local hospice to help her face her dad's death and said it helped. I've taken advantage of their counselling service since G's death and talking helps. Perhaps worth investigating. One of my key coping mechanisms is journaling. Once you see these words written down sometimes they feel less scary. 

There's some great support material on the main body of the website. Here's the link

If the person you care for is dying | Macmillan Cancer Support

For now though please be gentle with yourself.

Sending you  a huge virtual hug and lots of strength.

love n hugs

Wee Me xx

Your message is so lovely and means so much to me thank you! 

I've just started counselling so hopefully that will help, I've set up a fundraising page for the brain tumour charity as my Dad wants to help others before he goes. My counseller even donated to the page so I feel like she's very supportive. 

My dad has his gp visit us every week and nurses who come when called. My mum is very emotionally distressed and herself disabled so most of the support has been for her. 

She keeps saying that it's not about me but about her and my dad. Which I understand as he is her life. They've been together 38 years. 

I left my home and feiends and boyfriend to move back in with my parents to support them. But there hasn't been much support for me. So speaking to you I really appreciate it as I'm scared and heart broken. 

Hi. I totally understand how you feel, my mum had the same diagnosis with a glioblastoma. I lost her back in august. The palative care is hard, I’m still grieving. I’m so sorry, it’s hard to find someone that relates, I’m here if u want to talk

kate 

Thank you so much for your message! I'm overwhelmed with how kind everyone has been. I'm so sorry about your Mum, thank you for reaching out! Sometimes I don't even know how to say how I'm feeling, just that it's so much and it hurts. I don't really know how to cope 

If there's anything I can do to support, just ask.  Scared and heartbroken is understandable and perfectly normal so please don't be too hard on your wee self here.

love n hugs

Wee Me

xx