Dad's terminal cancer

User

Posted 23 May 2017 at 20:39

Hi there, not sure where to start really, my Dad has been battling advanced prostate cancer which has spread to his bones for approx 4 years. Initially he was on aberiterone for 2 years then had 5 rounds of chemotherapy followed by radium 223 in February this year.

From January/Feb onwards Dad started to deteriorate and has suffered from severe fatigue and has lost aprox 4 stone. When we saw the oncologist at the end of February she said there was nothing more they could do treatment wise as Dad was too weak. Dad asked what his prognosis was and she replied 2 weeks to a month, his PSA was over 4,000 and that he would be referred to palliative gold care as his cancer was very aggressive..

Well amazingly Dad is still with us possibly thanks to being prescribed Dexamethasone steroids over the last 10 weeks. Although I know how dangerous they are. I really don't know what to do as my folks are still trying to carry on as normal, they are refusing Macmillan and district nurse home visits despite Dad's deteriating health. When I pop round to see them Dad says how ill or sick he feels and that he's walking into door frames and stumbling, but won't entertain calling the gp. Apart from about a month ago when I called the gp and dad was admitted to hospital by ambulance for 4 days and put on a drip and iron tablets for his anemia. Is this extent of denial normal ? Help I'm so worried. They've been married for 54 years and are inseparable and Mum has her own health issues too. I feel so helpless.

Edited by member 23 May 2017 at 22:22 | Reason: Not specified

User

Posted 23 May 2017 at 23:35

Oh it's so awful isn't it such a cruel disease yep think I was very naive to it too.

Also think Dad being very anaemic might also be contributing to his fatigue, he's on anti sickness tablets too for his sickness which he rarely seems to take!

Hope you can get you Dad's pain relief sorted soon.

User

Posted 23 May 2017 at 23:41

Thank you. I hope you get your dad to bend on his pain relief views. Keep us posted x

User

Posted 23 May 2017 at 23:47

"He'll get to the point where he HAS to take something stronger and hopefully it will be at that point he will let macmillan into his life"

Not necessarily; some men slip away very gently and relatives don't realise until the last minute what is happening. There are a number of threads on here about endings that were sudden and or painless just as there are those who experienced terrible pain and suffering. My father-in-law didn't need any painkillers at all - he just stopped eating and then drinking, his body started to swell with lymphodema and he died 24 hours after we found out it had spread.

Sunshine, has your dad sorted out his affairs? Written a will, spoken about what kind of arrangements he would like? If not, then it is important that you encourage him to do this and the blessing of him being in denial is that it makes the conversation easier to start .... it is much less frightening for a person to talk about these things when they don't believe it is imminent.

Edited by member 23 May 2017 at 23:52 | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 26 May 2017 at 22:06

Hi Sunshine,

We are pretty much on a similar path and have just finished Raduim 223, with 4 years under our belt and a starting PSA of 13000 we are now bumbling along at around 4000.

Trevor hasn't ever really talked about his diagnosis and it took me a long time to come to terms with that I know understand that it is his way of dealing with it.

Trevor had a rocky patch at Xmas and has been on slow release morphine since then he also takes paracetamol 4 hourly .

I can sense your feeling of helplessness in your post and it's so difficult like Lyn I think dad will ask for extra help when he needs it .

Sometime asking for help is also an acknowledgment.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

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User

Posted 23 May 2017 at 23:04

Hi,

My dad was diagnosed in July last year but unfortunately has very aggressive type of cancer where the hormone injections didn't work and on his 4th cycle of abbi, his PSA had risen. We go on Tuesday for 5th cycle.

He too has been in denial and its only really this week, I think the penny has dropped. He accidentally discharged himself from macmillan care after me convincing him to get it by telling them he was feeling great and going for a game of golf (?????!).

He has been experiencing rib and sternum pain this week and it's been an eye opener for him as he was convinced he had pulled a muscle in his back. Is your dad on any kind of pain relief yet? It could be when the pain kicks in, he won't be able to refuse the Macmillan care. Ours came out today and she was lovely.

My mum is not in denial but he is very short with her when she contradicts how much pain he is actually in. it's only me he "allows" to contradict his "I'm fines".

It's tough being a son/daughter of these stubborn parents x

User

Posted 23 May 2017 at 23:21

Hi Beebee, thanks so much for your reply so sorry to hear about you Dad's health.

Dad does get a lot of bone pain and takes 2 x 500mg paracetamol a day and spends most of the day lying on the settee as he's so fatigued. He says he doesn't want to take anything stronger.

Such a worry isn't it with these stubborn parents for sure!

Our Macmillan nurse is lovely; I've spoken to her a few times privately, she thinks it will have to get to crisis point before my folks will accept medical support it's such a worry.

Edited by member 23 May 2017 at 23:27 | Reason: Not specified

User

Posted 23 May 2017 at 23:28

He'll get to the point where he HAS to take something stronger and hopefully it will be at that point he will let macmillan into his life or seek further pain relief from gp.

It's a constant battle with my dad to increase his morphine/meds as he "doesn't want to get addicted" and he hates feeling sleepy. It's interesting that your dad is fatigued without the morphine as it could be that my dad would be sleepy even without it.

I was quite niave about how painful cancer is. I thought people just deteriorated and faded. So niave 😔

User

Posted 23 May 2017 at 23:35

Oh it's so awful isn't it such a cruel disease yep think I was very naive to it too.

Also think Dad being very anaemic might also be contributing to his fatigue, he's on anti sickness tablets too for his sickness which he rarely seems to take!

Hope you can get you Dad's pain relief sorted soon.

User

Posted 23 May 2017 at 23:41

Thank you. I hope you get your dad to bend on his pain relief views. Keep us posted x

User

Posted 23 May 2017 at 23:47

"He'll get to the point where he HAS to take something stronger and hopefully it will be at that point he will let macmillan into his life"

Edited by member 23 May 2017 at 23:52 | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 24 May 2017 at 09:17

Hi LynEyre, aww thanks for your reply, Dad's appetite is very poor has been for many months now and he hates the fortisips drinks with a passion! Luckily the dexamethasone helps a little with that stimulating his appetite. But I've no idea how much longer he can be on them. That's helpful to hear about your father in law And the painkillers aspect.

Oh gosh not sure where to start, I have tried to speak with Mum/Dad about future care plans but Dad says he doesn't want to do that; he's a very private person it's so hard to get him to talk.

When Dads GP approached him about not doing DNR due to Dad's condition my mum refused Dad to sign the paperwork. They have made wills though, think this was a few years back.

When I spoke to Dad yesterday by phone he was slurring his words slightly and seemed a little confused, Gosh they worry me so much!

User

Posted 26 May 2017 at 22:06

Hi Sunshine,

We are pretty much on a similar path and have just finished Raduim 223, with 4 years under our belt and a starting PSA of 13000 we are now bumbling along at around 4000.

Trevor hasn't ever really talked about his diagnosis and it took me a long time to come to terms with that I know understand that it is his way of dealing with it.

Trevor had a rocky patch at Xmas and has been on slow release morphine since then he also takes paracetamol 4 hourly .

I can sense your feeling of helplessness in your post and it's so difficult like Lyn I think dad will ask for extra help when he needs it .

Sometime asking for help is also an acknowledgment.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 26 May 2017 at 23:03

Hi Julie, aww thanks so much for your reply it's really appreciated and gosh Trevor has really been through it. Yes it certainly sounds like they've both had a similar roller coaster journey in some ways. They are both so brave it's so heartbreaking isn't it.

Gosh the more I think about things and it is hard to get your head around but by not talking about diagnosis is their way of dealing with things. Im sure Dad will ask for help soon, I just want to protect him and keep him safe.

Thanks again and keep strong x

Edited by member 26 May 2017 at 23:04 | Reason: Not specified

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