Going to lose my dad

Apologies for registering just to post this, I know that's not how forums are meant to work but I didn't know what else to do!

My dad was diagnosed with cancer of the oesophagus about a month before the first lockdown in 2020. He had chemo, underwent an operation that June, more chemo and it was deemed he had had "successful curative treatment".

Unfortunately, that was not the case. I won't go into all the details but more tumours were found and it seems they haven't responded to the treatment. We (me, my brother and mum) have now been told he has six to 12 months left. He may be eligible for clinical trials he might not, we'll find out soon. 

It seems so unfair. At the start of all this he was 70, fit, didn't drink or smoke and hasn't had too many bouts of ill health. Even before yesterday's news I had thought on more than one occasion whether it was worth all the treatment, all the pain, when after it all he probably wouldn't be able to do the things he used to. Now I'm thinking about that even more. 

The best he can hope for is another year sitting in front of the TV and going for treatment. There's no chance of him ever playing golf again and it's unlikely he'll ever be able to go to the football again. He's not going to get to be a granddad. 

I've felt so helpless over the last two years as I live 80 miles away so it was my brother that drove him about most places and for large parts of the last 24 months I haven't even been allowed to go to see him. There are times I thought he was getting better but I guess those visits just coincided with one of his good days.

I guess this day has always been playing in my mind since we first got told the news two years ago but it doesn't make things any easier. I'm heartbroken about the fact things really are coming to the end. I'm not ready to lose him.

So many things have gone through my head in the last 24 hours - what will life be like without him, how will my mum cope on her own (they have been married nearly 40 years), how awful the funeral will be, what to do with the time we have left, how awful it will be watching him deteriorate and so many other things. 

I looked at this forum last night and other people's stories had me on the verge of tears. I'm in a similar state just writing this (and I'm a journalist so writing is my job!). I know in a way I am lucky because some people get told they have a lot less time to live than him and there is still a reasonable amount of time we can spend together, but at the moment it really doesn't feel like that.

I've no idea why I'm writing this, maybe I'm hoping sharing it will be cathartic. Any help that can be offered would be great, although I don't know what help I'm expecting!

  • I don't really have any advice, except to say I know how you feel. I lost my mum in January, she was 58 and has faced 8 years of treatment. Im sorry he won't get to become a grandad, I luckily had a little boy last year and tour post made me remember to be grateful mum gor to meet him. Life is so bloody unfair sometimes. I know it's easier said than done but try not to focus on all that is to come, just enjoy the time you do have left and worry about the rest of it when you have too. My mum use to tell me to focus on the positives and be grateful for the time we had. God knows how she was so brave. She did leave me little voice notes which I listen to all the time and it really helps. If you feel like you can, maybe you could ask your dad to do something similar. Whatever happens. You will get through it. 

  • Im in a similar situation. My Dad is 58 and has probably got a few weeks left. He also got told he had the all clear and then they found more tumours. My parents have also been together for about 40 years so really concerned about my mum. Three years he has been having treatment. His op got cancelled because of covid. Its all just been a big mess. The only way we found a clinical trial was by posting on social media. Im sure you're probably already doing it but get people on the phone calling all the hospitals who offer clinical trials especially uclh in London and Addenbrooks. It didnt work for my Dad but they can work! You are not at the end yet. Keep fighting!! 

  • Hello, 

    I'm in a very similar situation. Mum diagnosed at the beginning of lockdown with endometrial cancer. She underwent treatment and she was given the all clear. But last week spinal metastasis were discovered, she has a prognosis of 6 months or less. So I totally feel you. 
    I live several hundred miles away with a young family. I'm taking each day, not thinking about funerals, clearing houses, never visiting again. It's too much, it gets pushed out of my brain when it pops in. 
    I have asked her about her wishes, and been able to sort some stuff out which will help us to help her to die at home. She's taken some comfort from this. I'm being quite stoical around her as I think the worst bit is the prospect of people not coping with her death. 
    The next few weeks to months is about quality time, not quantity. Both from a visiting POV but also medical POV. 
    Ill make sure I have stuff lined up to meet her needs as they change (equipment, care, advanced directives etc) and that will take the stress out of it for everyone. I'm expecting a decline in her function, condition and I'm going to keep putting things in place to mitigate the loss of function, not try and seek a cure or expect any reversal is symptoms.  But it'll be hard work once we move to the terminal phase and then the aftermath. I'm dreading the aftermath, but again, currently blocking it out. I'll get to experience that in all it's glory in not too long, so it can wait. 
    Its utterly ***, but having gone through it with dad when I was 19, mum and I agree that her choosing to be in denial and also accepting every treatment offered isn't necessarily the best way forward. Honest open conversations have been a breath of fresh air. 
    Perhaps explain to your family how you feel, and acertain what they might find beneficial or how they are feeling? It's ok if one person tends to do appointments etc. It doesn't diminish how much you mean to someone, it simply reflects geography.  
    Also, re. Covid, we've decided that it's not worth getting stressed about. We too were ultra cautious and missed out on time together at the beginning of the pandemic. But now it's about enjoying time together. If we pass Covid to each other so be it, we could easily pass on a cold or flu. Hope that didn't appear to clinical, I'm not the best at writing!  xxxx