Prostate cancer

A support group for anyone affected by prostate cancer to come together, share experiences, and ask questions.

Hello from overwhelmed daughter

catsandtrees
Posted by

Hello all,

I was hoping if I post a shirt version of where things are at with my 79 dad you may give me some general pointers.

In 2009 he diagnosed with PC and he had his prostrate removed. No  other treatment. Fast forward to last Wednesday when I took him to hospital for results of an X-ray. We were told that it has spread to his bones(legs) and it is very bad, incurable, inoperable and all they can do is manage the situation with hormone therapy. He started that this  morning. 

We are waiting for an appointment for a bonescan which will hopefully be within a couple of weeks. I guess after that we will know the full extent of where it has spread.

We were told he has lesions in his pelvis and his and they mentioned his lymph’s so I guess it has spread.

My dad lives 50 miles away from me. He lives on his own in a flat which has a couple of 1 steps in places. He has struggled to walk from the living room to the bedroom/bathroom because of his legs. He has lost a vast amount of weight. He is taking up to 4 100mg of tramadol  a day.

what I would like to know is, who is responsible for his safeguarding? He is at risk of leg fractures and if he’s falls(which I think is only a matter of time) he will likely fracture his legs.

how can I get him a wheelchair?

how to you convince a fiercely independent man to give up driving? Do I take his car keys?

how do I get his flat risk assessed and how to I get him grab rails, raised toilet seat etc?

should he apply for a blue badge if he is no longer driving?

how can I get him help re shopping, cleaning etc?

i have stayed with him since Wednesday. My brother from 120 miles away has now come to stay with him for a few days but we all have to return to our jobs etc.

sorry for all the questions but I don’t know where to start.

just to add that his psa is over 1000 and the other thing that begins with A is also over 1000.  I know the outlook after his scan is going to be bleak.

gaz67
Posted by

Hi 

I'm sorry to hear this about your father the only advice I can offer is for you to ring McMillan I'm sure they will advise on a way forward

Cheers 

Garry 

Be positive stay positive 

Mally333
Posted by

Hi 

I would advise you contact your dads local authority social services department, they will probably do an assessment on your dads needs and implement any reasonable adaptations within his home.

best regards 

Mally 

Don't let your good days be spoilt by the worry of a bad day, that may or may not come along.

catsandtrees
Posted by

Thanks Garry. I will be calling them.

Chantel

catsandtrees
Posted by

Thank you Mally. I will call next week.

joewales10
Posted by

Sorry to hear about your Dad its very difficult but at the same time you have to admire his independence. one question I can answer is the Blue Badge, he can apply for one without a driving licence, for use by anyone who is driving a vehicle he is in. He really should have been having regular blood checks at least yearly after his prostate removal, its not that uncommon for it to come back.

Best of luck

Joe

catsandtrees
Posted by

Hi Joe,

despite me telling him to get his regular psa checks and biopsies it transpired that he last had them in 2011, so 8 years with no checks. I  was initially angry with him as this could have been avoided, however I told him that we now have to focus on the future and being angry will not help the matter. I am sure he will of course be cross with himself. He has said that he has been stupid.

well, I rang Macmillan this morning. They have gave me some contact number and I will be ringing social care on Tuesday to start the ball rolling with his care assessment. 

He appears to be coming round to the idea of him not driving. 

He has not yet grasped

how bad his legs are as I walked in to find him gently bouncing on a mini trampoline! Told him off. His urologist oncology nurse rang a few minutes after that and I told her what he was doing. She also told him he was not to trampoline any more. 

His bonescan appointment has come through for 25th September which seems such a long way away. Nurse said hopefully a quicker appointment will come through in the post. Does anyone know if we will get the results of the bonescan on the same day or if not how long will the results usually take?

i know this may appear selfish but I have a 3 week trip booked and paid for Vietnam at the end of September. It’s so hard to k ow what to do, to go or not to go. If I don’t go my travel partner who is my sister(different dad) will not be able to go as she doesn’t want to go on her own and her insurance won’t cover my dad being ill.

i can’t imagine leaving him to go on holiday if we find out his prognosis just before my trip.

I am finding this whole situation to be surreal. What on earth is my poor dad thinking? 

Well, busy day on Tuesday, lots of phone calls to get balls rolling.

Thanks for taking the time to reply.

Chantel 

flightsim
Posted by

Hi,

Sorry to read about your dad, and the number of balls you're now juggling just to get through life.

There's a lot I can't answer, however I can tell you that you won't be told of the results of his bone scan on the day. The staff who carry out the bone scan are qualified to do just that, The results will be sent to your multi disciplinary team, who will review the results and you'll find out what was found at a consultation with your consultant. That's how my bone scan went, and I expect the same will happen to you.

Best wishes to you both

Chris

Believe you can do it, and you’re halfway there.
joeven
Posted by

Hi

Sorry about the situation, but your father is a little like me, if he has it in his bones ( I have ) then they become brittle, any type of accident could cause breakage, but that does not mean everything changes. How self sufficient is he, plus apart from you and your sister is there anyone else ? If your very worried McMillan nurses can visit him.

The way you have portrayed him he seems fairly active, it’s hard to change and slow down, believe me I know, but this should not interfere with your holiday plans. Having said that if you go you will be worried about him, you have to weigh up the options available to you, remember he’s been through all this before all be it a long time ago, so he knows the drill, have you talked with him, he knows your going away, just ask him how he feels about all this news.

choices are never easy my wife worries when I take a few minutes extra just coming from the shop.

Take care

joe