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My dad has a grade 4 brain tumour! I feel so alone as I can't speak to my mum and dad about it without breaking down

Jadeh2204
Posted by

Hi, 

My dad was diagnosed with a grade 4 brain tumour only 12 weeks ago. He had his operation 10 weeks ago and they managed to remove 98% of it so we was all so happy, they did say it would never go so gave him an estimate of 2-4years. Last week he finished a 6 week course of radiation 5days a week and chemotherapy tablets daily. Within 2 days he seems to have gone worse falling again, memory loss and he's also very down its breaking my heart to see him so fragile as for a 60 year old man he's never looked or seemed his age he's the life and soul of the party. I just need to get it off my chest as I'm so down lately trying to be strong and positive for everyone is hard. 


Thank you to anyone who takes the time to read this. 


Xx

barbaral
Posted by

Jade, I'm so sorry to read about your dad. Trying to be brave is such a challenge when the people you love are so unwell.

We can offer you a few channels of support. If you want to TALK, there's the helpline with trained advisers and nurses. You can call them Monday to Friday on 0808 808 0000  between 9 am and 8 pm. There is nothing you can ask them that they can't handle and they're quite used to people phoning up and crying so don't hold back. 

We can also find you some forum groups here. There are groups for various types of brain cancer - brain, glioblastoma, low grade, secondary brain cancer - but I don't think you're really looking for technical answers, I suspect you're looking for emotional support for yourself and a place to get things off your chest. I would suggest to try the family and friends group as a starting point.

best wishes

Kingstonsteve
Posted by

Hi Jade

My dad was diagnosed with grade 4 brain tumour start of April. After the initial shock and despair there was a period of reflection until we realised that, even though it sounds like a cliche, you really do have to take one day at a time. Try to do things when you are together and your dad is well enough. 

One regret I have is that we as a family did not take advantage of the many types of support through organisations such as McMillan and other local palliative care groups. Don't be afraid to ask for walking stick, stroller, wheelchair, bath aids etc as these should be seen as a way of improving quality of life.

Search for local palliative care organisations that may not be cancer specific.

We have a fantastic local group who organise aromatherapy massages, jacuzzi baths and are there to listen to you as well as your dad.

Wishing you and your dad all the best

Steve

PS my dad is still with us and has just spent a couple of days at a local hospice run by a palliative care group. My mum says she hasn't seen him as happy in the last 6 months so there can still be good days ahead for you and your dad

Jadeh2204
Posted by

Thank you so much for getting back to me. 

Having a bad day today and just writing my other message helped me a little bit. I think with it coming up to Christmas and seeing him struggle lately I'm worried this might be his last one with us. 


I will definitely try the family and friends group. It would be nice to speak to people who are going through the same thing. 


Take care 

Jade xx

barbaral
Posted by

Hi Jade

You'd be amazed how many people tell us that just writing something down helps even when they don't always have something specific to ask us.

Sometimes we don't really know what to say - but we try to say 'something' - in response. Luckily, it's equally amazing how many people just need to see that somebody read what they wrote and said hello. It's like a response validates what has been said.

Christmas can be a wonderful time but when somebody you love is unwell, it seems to take on a scope beyond the normal and a significance that's out of proportion to a so-called normal Christmas. The main thing is that whether your dad is with you a long time or a short time, that he's with you for the RIGHT time and not suffering too badly.

Good luck in the times to come. Look for help wherever you can find it. You'll be amazed how many good people out there are ready to help.

Jadeh2204
Posted by

Thank you Steve for this message. It's comforting on here to speak to people who are going or have been through the same thing. 

I think it's just so hard I'm an only child and the biggest daddy's girl . I do try and say let's go out even just to the local park for some fresh air he ends up pulling out last minute as he doesn't feel well, or like people looking at his scar even though personally I don't think you can see it. it's just heartbreaking to see him worrying and so fragile. 


Thank you for the advice about local groups I'll definitely give that a look in to. 


So glad to hear your dad enjoyed that, it's scary for us I don't know how they must feel.


Take care and thank you again xxx

Jadeh2204
Posted by

Hi Barbara,

Yes I feel so much better today after the bad day I had yesterday, and I really think writing this down and seeking advice has helped amazingly. 


Christmas is going to be hard but it's 10 weeks away and hopefully he should be feeling lots better by then as it's still so fresh. I think because he doesn't have his scan till the beginning of November it's just playing on our minds so much. 


Thanks again and take care xxx