Hi
I am not from the UK, I am in Canada so I hope its ok I am posting here...but I am really not getting answers on some of the US forums and the Canadian ones are even worse. Not many people posting/responding.
My dad was diagnosed May 2018 with a brain tumor...he was feeling very off for a few weeks, trouble walking, speaking, blurred vision, massive headaches....he finally went to the ER and after testing discovered he had a brain tumor..was scheduled asap for brain surgery..after the surgery the dr said it was a secondary tumor so we would have to wait to for pathology results....my dad is 69, had testicular cancer in the 80's and is in monitoring stage for prostate cancer.....he is a smoker so it was no shock when the results came back and they said he had nsclc adenocarcinoma. He had chemo done and late Dec/Jan he was having very bad days..kept falling, extreme fatigue and just not well...his dr orderd a CT and MRI....so the chemo didn't work and it was spreading in the lung and he has many brain mets and it had spread to the lining of the brain. We met with the brain oncologist and he suggested WBRT so my dad had 10 days of that. I think that finished about 2-3 weeks ago....lately he has days of extreme exhaustion...like he is only awake for about an hour in total in a 24 hr period...walking and talking is bad and limited. Some days are much better than others...so I wonder is that the cancer or the radiation???
2 weeks ago Frday, he collapsed and couldn't get up..he was conscious but physically couldn't stand up so my mother called the oncologist and they advised her to call an ambulance...he had a fever so they did an xray and it showed pneumonia..they couldn't tell how bad because of the lung cancer...they sent him home with antibiotics. The ER dr did tell my mom that they were going to call outreach to come out....well we didn't know what that was so my mom waited for the call which was on Tuesday and a team of a dr, nurse and someone else (cant remember) came over. They were from a Hospice and are the outreach team. My dad's next scheduled oncologist appointment was the following day....so they were talking to my mom and my mom said, oh we are seeing the oncologist tomorrow and the dr from hospice said there is no point..we are here to take care of him now...my mother didn't ask why hospice was called in or who made that decision...so the only thing I can think of is they saw the chest xray and maybe decided no more treatment can be done...maybe its all over the lungs now...I don't know what happened but I am assuming they only call hospice in based on facts..I would assume a report would have gone out to his oncologist who is out of that hospital...but my mom didn't ask why or who....In her mind I guess she figurd well if they said that's what they are doing, than that's it.
So the nurse comes once a week to assess my dad and will come more as needed...other than his bad days where he has a lot of trouble walking and is beyond tired, he seems ok. My mom said his breathing is getting worse but isn't that bad..and the nurse agrees...she said eventually he will probably need oxygen. My dad was going to discuss immunotherapy at his next appointment so I guess that isn't happening. The dr had said back in January without trying immunotherapy you are looking at about 3-4 months. Well that was 2nd week of January.
Does anyone here have lung cancer with brain mets or can offer advice. I don't know what will end up killing him, lung or brain mets? It seems like the brain mets will eventually make him bedridden. Can anyone offer what the end will look like? bedridden? pain? He says he is not in any pain. He also wants to stay home til the end if possible.
This has been hard on everyone in my family. I cannot even imagine what my dad is going through. His birthday is March 19..Hoping he makes it to see his 70th.
thanks for any input
Michelle
