Read through this entire thread and could not help but shed a few tears. I'm so sorry for both of you...my dad is fighting this exact same monster as we speak.

He was diagnosed with prostate cancer while on a trip to his birth country in South Asia visiting his elderly mother, had a surgery, returned to UK and continued with chemo. He seemed to be okay for a year or two with no immediate concerns apart from some chemo side effects.

He has been complaining about headaches, poor eyesight and memory loss for some time but we did not think much of it as he was being checked regularly by doctors since he completed chemo and assumed it was just normal for those who recovered from cancer and given his age (mid 60s). He also struggled a lot throughout his life coming from extreme poverty, worked many manual labour jobs in various countries, faught court cases, involved in numerous land disputes, depression and in recent years many arguments and family issues. We thought all this must be a reason why he is not so well and nothing more serious.

Despite the complicated family relationships, we still love him and likewise he does too - it's still same blood at the end of the day as they say.

Come May 2021, he has suddenly become severely ill and in need of regular assistance with small day to day activities - tripping over things, shouting/crying, partial loss of vision, unable to walk unaided, cannot eat properly,  bedridden unable to move one side of body, etc. He was 1000 times better the month before and so we were somewhat puzzled as to why he was acting so strangely all of a sudden. After numerous battles with the GP receptionist, we managed to book an appointment with the GP who later arranged for a MRI due in few weeks, from initial inspection GP stated that everything is normal when in fact it was far from normal, it was explicitly clear but this GP is notoriously known for poor judgements and reviews are atrocious for this GP surgery, it's main target audience is non-English speaking patients - not many question his ethics/practice and so pretty much gets away with things.

Fast forward few weeks, his conditions worsened and so we had no choice but to send him to A&E. Initial CT scan showed 'lump' (not sure of the exact term they used) on one side of his brain, the general doctor ruled out a possible brain injury after some inspection and indicated that it may be his previous prostate cancer that has now developed in his brain. He was placed on some antibiotics/steroid treatment. He was then transferred to another general ward and passed the scans to a team of neurologists at another hospital for review. Nurses and doctors in both ward were terrible, if we tried to ask any questions they would become agitated or frustrated, nurses weren't aware of my dads conditions and would treat him as though he was a fully able person. They simply wanted us to listen and keep our mouth shut. I get it they do this day in day out and C-19 has exhausted them but we are concerned family members. We don't get joy from being in hospital...just looking for clarity. 

Anyways, we pushed them to do MRI and they did after a few days, MRI came back and they now found tumour on both sides of the brain. They sent the findings to a team of neurologists at another nearby hospital and we are currently waiting for them to confirm whether they want to take fluid out of his brain and then decide best course of treatment or whatever other suggestions they have. 
 

My experience of NHS was really good when I was much younger coming from a foreign country but now that I've lived here and visited various departments within the local NHS hospital, my views are somewhat tainted. The quality of care and service is extremely poor, it's rushed, bad attitude from doctors/nurses, lengthy waiting time and communication with family members is appalling. Partly blame the government for lack of resources/funding and partly blame those who choose to work in NHS despite knowing the challenges.

I too fill **** about life. Question whether I should have acted differently with my dad, feeling a sense of guilt. I reduced the amount of news I consume (although I must admit it is difficult when it's all around you) but news is infested with negative coverage of horrible things happening around the world and bothers me seeing people suffer. Question religion/god, feel lost and empty a lot of the times. Constant battle every night in my head. Lack of motivation to do anything, struggling at work. 

I know this may come across as bit of a rant but wanted to get it off my chest and also shed bit more light on this rare phenomenon. Any tips/suggestions of potential treatments that we can explore would be massively appreciated! Interested to also hear how you coped over the years and if anything helped alter your perspective on life.

Wishing you all a happier, healthier tomorrow :)

Read through this entire thread and could not help but shed a few tears. I'm so sorry for both of you...my dad is fighting this exact same monster as we speak.

He was diagnosed with prostate cancer while on a trip to his birth country in South Asia visiting his elderly mother, had a surgery, returned to UK and continued with chemo. He seemed to be okay for a year or two with no immediate concerns apart from some chemo side effects.

He has been complaining about headaches, poor eyesight and memory loss for some time but we did not think much of it as he was being checked regularly by doctors since he completed chemo and assumed it was just normal for those who recovered from cancer and given his age (mid 60s). He also struggled a lot throughout his life coming from extreme poverty, worked many manual labour jobs in various countries, faught court cases, involved in numerous land disputes, depression and in recent years many arguments and family issues. We thought all this must be a reason why he is not so well and nothing more serious.

Despite the complicated family relationships, we still love him and likewise he does too - it's still same blood at the end of the day as they say.

Come May 2021, he has suddenly become severely ill and in need of regular assistance with small day to day activities - tripping over things, shouting/crying, partial loss of vision, unable to walk unaided, cannot eat properly,  bedridden unable to move one side of body, etc. He was 1000 times better the month before and so we were somewhat puzzled as to why he was acting so strangely all of a sudden. After numerous battles with the GP receptionist, we managed to book an appointment with the GP who later arranged for a MRI due in few weeks, from initial inspection GP stated that everything is normal when in fact it was far from normal, it was explicitly clear but this GP is notoriously known for poor judgements and reviews are atrocious for this GP surgery, it's main target audience is non-English speaking patients - not many question his ethics/practice and so pretty much gets away with things.

Fast forward few weeks, his conditions worsened and so we had no choice but to send him to A&E. Initial CT scan showed 'lump' (not sure of the exact term they used) on one side of his brain, the general doctor ruled out a possible brain injury after some inspection and indicated that it may be his previous prostate cancer that has now developed in his brain. He was placed on some antibiotics/steroid treatment. He was then transferred to another general ward and passed the scans to a team of neurologists at another hospital for review. Nurses and doctors in both ward were terrible, if we tried to ask any questions they would become agitated or frustrated, nurses weren't aware of my dads conditions and would treat him as though he was a fully able person. They simply wanted us to listen and keep our mouth shut. I get it they do this day in day out and C-19 has exhausted them but we are concerned family members. We don't get joy from being in hospital...just looking for clarity. 

Anyways, we pushed them to do MRI and they did after a few days, MRI came back and they now found tumour on both sides of the brain. They sent the findings to a team of neurologists at another nearby hospital and we are currently waiting for them to confirm whether they want to take fluid out of his brain and then decide best course of treatment or whatever other suggestions they have. 
 

My experience of NHS was really good when I was much younger coming from a foreign country but now that I've lived here and visited various departments within the local NHS hospital, my views are somewhat tainted. The quality of care and service is extremely poor, it's rushed, bad attitude from doctors/nurses, lengthy waiting time and communication with family members is appalling. Partly blame the government for lack of resources/funding and partly blame those who choose to work in NHS despite knowing the challenges.

I too fill **** about life. Question whether I should have acted differently with my dad, feeling a sense of guilt. I reduced the amount of news I consume (although I must admit it is difficult when it's all around you) but news is infested with negative coverage of horrible things happening around the world and bothers me seeing people suffer. Question religion/god, feel lost and empty a lot of the times. Constant battle every night in my head. Lack of motivation to do anything, struggling at work. 

I know this may come across as bit of a rant but wanted to get it off my chest and also shed bit more light on this rare phenomenon. Any tips/suggestions of potential treatments that we can explore would be massively appreciated! Interested to also hear how you coped over the years and if anything helped alter your perspective on life.

Wishing you all a happier, healthier tomorrow :)