Different outlook on life

Hi Ewol09, I haven't made my own post here yet, but after finding your post, I just wanted to reach out as I'm going through something very similar. My dad was diagnosed with stage 4 NSCLC in March this year. He went downhill within a month or so and has never recovered. His chemo caused a lot of harm to his weaking body causing him huge weight loss and stopping him from enjoying his life anymore. He's now been admitted to hospital last week for the 4th time this year and we've been told the immunotherapy he's recently had hasn't worked at all and his cancer has spread to his bones, adrenal glands, and heart lining. He's confused and exhausted all the time, he's losing use of his right hand, has had multiple mini strokes and has so many blood clots all around his body. I am in constant shock and cannot feel anything but sadness and desperation. My heart physically aches when I think about all the things my dad had planned with his retirement that he will probably now never have the chance to do (he was diagnosed weeks before retiring). He has said several times that he doesn't want to die and I can see he's so depressed and scared. My big strong dad lying in a bed unable to sit himself up, tears rolling down his cheeks..I don't know how I am getting through each day, I honestly don't. We have a meeting tomorrow with the oncologist to find out if they will continue any new type of treatment, and I am so terrified tonight that they're not going to and we have to say goodbye soon. I never in a million years imagined he might leave us this early, we were convinced we had more time to make memories. I can't eat, I can't sleep, I can't work, I can't think of anything but my dad's illness and how I desperately would do anything to save him but can't. I am a broken human, and I don't know how I'm going to get through the rest of this to be strong for him, but somehow we find a way? I am here, feeling your pain, your anguish, your sadness and I hear you. I'm probably awake in the middle of the night when you are, feeling sick, sad and alone as you are. So if it helps, I'll send a thought your way. Take care of yourself.

I am so sorry to hear about your dad also and sorry for the late reply I missed your post. Life is cruel and I know whats coming but its the suffering and change in personality that is upsetting me the most. Its like my dad is slowly drifting away from me and there's not a damn thing I can do about it except watch it all unfold before my eyes. And yet again the NHS has let us down this last week, I feel like he's been forgotten about. He's been in a bad way this last few days and it's taken me to make numerous phonecalls to find out what the heck is going off. His MRI results are back so if I'd not chased around yesterday for answers, when would be have found out the results? Because his next appointment isn't until December 12th!!! Unfortunately he now has multiple brain metastases which explains the vision loss, slurred speech and dizziness. We have a big meeting today to discuss how we can make him more comfortable.

How did you get on with the appointment? What I've found is taking myself away from the situation (and putting my phone out the way) for a day/half a day/couple hours just gives me a breather to compose myself because if I don't I am too overwhelmed and it is shutting me down mentally and physically.

Sending hugs, I feel your pain x

Hey Ewol, I can't imagine how frustrating and scarey it is having to make so much effort to get results! It's shocking what so many of us go through just to get basic help and information. The hospital has been great with us up to a point, but after my dad was hospitalised 2 weeks ago, he's been left lying in a hospital bed with no specialised care for 14 days solid after being told he has weeks left to live and there's no more treatment. We found out he has a clot in his heart and several in his head. He has days when he is lucid and understands what's going on and he's very depressed, other days he thinks he's going home and tries to get out of bed to get dressed. We finally got a bed for him in a lovely hospice yesterday afternoon and he's very confused and tired, but at least he has the specialised care and help he deserves 24/7. We had no idea we could have received help at home from the hospice earlier down the line when we really needed it. I feel sad and frustrated at myself that I didn't push my dad to get more help for his pain, falling over and confusion when he was at home, we just muddled through and did our best. It's surreal that 2 weeks ago we thought we would have years and years with him and in seconds we're told a matter of weeks. We tried to set up a room downstairs for him so he could come home like he wanted but his needs became too complex for us to manage at home, and now I'm riddled with guilt every time he mentions coming back. The house is empty, quiet and pointless without him. I feel like my life will be the same after he's gone :( I can't imagine having any good times without him and I can't help but feel angry that he won't get to live the long and happy life he so deserved. Watching him suffer and deteriorate is the hardest thing I have ever encountered and I have no idea how to get through it in one piece, maybe I won't? 

If you feel you can, please do let me know how you're meeting went. Thinking of you both Xx 

Hi Ewol09 

I wonder if it might help you to talk to one of the staff on the helpline here - 0808 808 0000, it is open 8am to 8 pm 7 days a week and I have certainly had a good cry at them in the past.

There is a tool on our main page too that can help identify local support groups to you given your postcode - we are very lucky to have a Maggies at our hospital and they definitely helped me.

<<hugs>>

Steve

Hi, unfortunately I couldn't attend the meeting due to work but my nan was there. She said they were really helpful and he now has a nurse going in everyday to check on him and I have also been given a fast response number incase I need help or advice, someone would come out. But no surprise, no doctor attended the meeting. He has now refused to go to a hospice and wants to stay at home. He has been very angry this last few days and getting pretty mad with the world as he's getting frustrated not being able to see. I am so scared of him having a stroke or falling as he lives alone. I can see very hard times coming our way trying to keep his best interest at heart but he's not going to see it like that as he is changing like a split personality. I have never really been close with my dad but have been since this all kicked off 9 months ago and I think we both regret that now. 

Also wishing you strength and best wishes. We can only do what we can by showing support and love. We can't change it can we :( 

Hey, I'm so sorry you're going through this too. It is really really hard and I too struggle with focusing on anything else. Im so sorry the hospital isnt helping that must be so frustrating. I know it's really hard but for me what helps is trying to think of all the alternatives and how things couldve been different. I know it sounds awful but I always think about how much extra time I've had since my dad's diagnosis to say all of the things I want to say before he passes and to cherish even the most difficult of moments. I wouldn't have had that opportunity if he had died suddenly for example. I also really benefitted from counselling with someone who specialised in cancer care. It gave me an outlet and it really helped change my perspective. Of course everything is awful but they helped me reframe that and gave me coping mechanisms for when things felt overwhelming. You're also not alone, always reach out when things feel too much