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User
Posted 20 Mar 2017 at 06:56
Hi all,

This is all new to me but I don't know where else to turn.

A bit about me: I am a 45 yr old woman who works full time,married to my soulmate with no children. Last August,hubby was diagnosed with advanced prostate cancer which had spread to his back and ribs. We began chemo but had to stop after 4cycles as it made him so poorly.

We have been discharged from the Oncology dept as there is nothing more they can do,ad are waiting for a follow up back with the urologist.

I asked the $64k question"how long" and was told we could have 6 weeks,6 years or 6 months.....how long is a piece of string.....

Hubby taking everything in his stride and is more concerned about me (I admire him for not letting it get the better of him)

Me...thats a different matter: I am trying to be strong, am still working full time -although this will be changing soon, and I am trying to keep my "Game face" on when we are together,but inside I am screaming!

Is this normal, what is normal. Has anyone out there felt this way, how did you cope as I feel I am losing the grip😞 please help as I feel so alone. Friends have rallied but there us only so much they can do/say.

User
Posted 20 Mar 2017 at 06:56
Hi all,

This is all new to me but I don't know where else to turn.

A bit about me: I am a 45 yr old woman who works full time,married to my soulmate with no children. Last August,hubby was diagnosed with advanced prostate cancer which had spread to his back and ribs. We began chemo but had to stop after 4cycles as it made him so poorly.

We have been discharged from the Oncology dept as there is nothing more they can do,ad are waiting for a follow up back with the urologist.

I asked the $64k question"how long" and was told we could have 6 weeks,6 years or 6 months.....how long is a piece of string.....

Hubby taking everything in his stride and is more concerned about me (I admire him for not letting it get the better of him)

Me...thats a different matter: I am trying to be strong, am still working full time -although this will be changing soon, and I am trying to keep my "Game face" on when we are together,but inside I am screaming!

Is this normal, what is normal. Has anyone out there felt this way, how did you cope as I feel I am losing the grip😞 please help as I feel so alone. Friends have rallied but there us only so much they can do/say.

User
Posted 20 Mar 2017 at 16:42

I see and I'm sorry to hear that.

Originally Posted by: Online Community Member
please help as I feel so alone.

You're not alone anymore, this community will support you all the way.

David

User
Posted 20 Mar 2017 at 20:31
Hi all and thank you again for your replies. The diagnosis is terminal, that and his age (he's 75this year) do go against him. We are in Leeds and have one of the best oncologists and urologists there.

Like I said in previous post, he is coping/dealing with this as though he has just got a cold, and I admire him for that-he even volunteered me to a tandem skydive for the charity!!😁

Perhaps I should take a leaf from his book....we have already started a "fuckit-bucket list" lets live each day as it comes and make plenty of happy memories 😁 😁 xx

User
Posted 21 Mar 2017 at 00:17

Hi Taffy

I know that all of the partners and wives on this site will understand how you feel - putting on a brave face is the norm isn't it, feels as if it's expected of us even though we might be falling apart inside.

Two things that might help: first of all this forum is a fantastic place to rant / yell / cry / howl on. You can say anything, share anything, and people will really understand you and be there with comfort and empathy. So feel free!

And secondly, get in touch with the Macmillan team via your GP or your consultant and ask for counseling. Just having a place/space to cry in and a place to voice your fears can be a huge relief. You aren't alone but might have to be a bit pushy to get the support you need.

Will be thinking of you.

Hugs

Eleanor

xxx

PS And your f..k-it bucket list sounds like a brilliant plan too. Go for it!

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User
Posted 20 Mar 2017 at 08:18

Hi you are not alone and I am sure other partners will be along soon to share their experiences.
I do find it strange that the oncologist is referring your OH back to urology. Is he having some renal problems etc?
IMO I thought the oncologist would oversee his care going forward. Is he on HT etc to help manage the PCa?

Your feelings will be absolutely normal under these circumstances.

Take care and sending you a virtual
((((((((Hug))))))))

Bri

Edited by member 20 Mar 2017 at 08:18  | Reason: Not specified

User
Posted 20 Mar 2017 at 08:38

Hello Taffy. Sorry to see you here but you've found us now and we'll help where we can with advice.

Is it normal to feel as you do? Absolutely.

All us wives have that initial feeling of shock when the diagnosis is given. For those of you whose husband's are in the incurable camp it is even harder, so yes, it's normal to feel the anger and despair and sense of abandonment. Especially in your case as you do not appear to have support for the next stage.

You will, I am sure, receive help and advice from the other lady members who have been (are) in your situation.

Was no aftercare mentioned at all. No Macmillan support?

Is your husband in much pain? What medication does he have?

Sorry a lot of questions but as Bri says, you are no longer alone and help and support are what we do best.

(((((((hugs))))))))) from me too.

Best Wishes
Sandra

******

We can't control the winds - but we can adjust our sails
User
Posted 20 Mar 2017 at 08:50

Tafy, there are men on here whose diagnosis were awful and still around enjoying life.

There's not much I can tell you other than I'd like to be supportive to you some way. If you ever feel like sharing your emotions, remember that a Spanish old lady's shoulder is here.

Hug,

Lola.

User
Posted 20 Mar 2017 at 09:02

Originally Posted by: Online Community Member

Last August,hubby was diagnosed with advanced prostate cancer

We have been discharged from the Oncology dept as there is nothing more they can do,ad are waiting for a follow up back with the urologist.

Discharged from Oncology! This does not sound right to me. What on earth are Oncology doing? There is loads they can do. First line hormone therapy (Zoladex, Prostap, etc), Bicalutamide, second line hormone therapy (Enzalutamide or Abiraterone) and Stilboestrol. I'd be making a great big fuss about this. You could start with the Oncology department or the PALS service at your hospital or your GP. Don't take no for an answer. Good luck and don't hesitate to seek further support from all of us here if and when you need it.

 

User
Posted 20 Mar 2017 at 10:47

I think it is quite common for oncology to close the case once they believe a man has moved into the terminal phase but they should have referred your OH to the palliative care team? The urologist may need to stay involved if the progressing cancer affects his ability to urinate, causes kidney issues, etc.

It will help if you can give us more information - what else was tried apart from the chemo? Do you have the diagnosis details anywhere? Did he have a biopsy and if so, was he diagnosed with adenocarcinoma or a rarer type of prostate cancer?

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

User
Posted 20 Mar 2017 at 11:52
Thank you all for your kind words, it is a relief to know that I am not alone.

We are still on HT (Prostap) every 3 months. Oncology Said that there is nothing more they can do until THAT time comes, so will be back under urology(where we started from). At this time, we don't have a designated MacMillan nurse and chemo was the only other treatment that they could try. On a plus note,his PSA levels have reduced, but we have had to adjust his pain meds-currently on Gabapentin and tramadol at night. I appreciate all your comments and support, THANK YOU. Xx

User
Posted 20 Mar 2017 at 14:44

Taffy,

I'm absolutely horrified by what Oncology have said to you. So what about Bicalutamide, second line hormone therapy (Enzalutamide or Abiraterone) and Stilboestrol, when first line hormone therapy fails? Why are they ruling them out for hubby. Please feel free to print out my history (click on my name) take it to Oncology, shove it under their noses and say "if Oncology at the Royal Devon and Exeter hospital can do all of this for this chap why aren't you doing the same for my hubby?".

User
Posted 20 Mar 2017 at 15:54
Thanks ColU_FC

As the cancer has spread so far,2nd line hormone treatment was not on the table

He hasn't and wont give up though. His strength is amazing and his outlook on life is inspirational (I'm the one that's a wreck!)

Taff.😁

User
Posted 20 Mar 2017 at 16:42

I see and I'm sorry to hear that.

Originally Posted by: Online Community Member
please help as I feel so alone.

You're not alone anymore, this community will support you all the way.

David

User
Posted 20 Mar 2017 at 17:00

You could look up Trevor Boothe's profile for further inspiration.

We can't control the winds - but we can adjust our sails
User
Posted 20 Mar 2017 at 18:16
Hi taffy

Sorry to hear about your husband but I am with ColU on this

I really can not understand what they are saying I was diagnosed over 4 years ago with mets everywhere to the point where they was considering a hip replacement

Abbi and enzo are great drugs and I cannot understand why they think he would not be suitable for them

If you don't mind me asking what hospital is he under

Best wishes

Si

Don't deny the diagnosis; try to defy the verdict
User
Posted 20 Mar 2017 at 18:59

There is obviously some important information that we are missing here - I don't believe an oncology team would just close the case unless he is terminal. It is entirely possible that this is down to which country Taffy lives in - perhaps no access to the Cancer Drugs Fund or other complicating medical history or something like that? We haven't got the full story :-(

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

User
Posted 20 Mar 2017 at 20:31
Hi all and thank you again for your replies. The diagnosis is terminal, that and his age (he's 75this year) do go against him. We are in Leeds and have one of the best oncologists and urologists there.

Like I said in previous post, he is coping/dealing with this as though he has just got a cold, and I admire him for that-he even volunteered me to a tandem skydive for the charity!!😁

Perhaps I should take a leaf from his book....we have already started a "fuckit-bucket list" lets live each day as it comes and make plenty of happy memories 😁 😁 xx

User
Posted 20 Mar 2017 at 20:49

Having read the whole thread again, I think we have misinterpreted the phrase 'there is nothing more they can do' or Taffy heard what is a not very nice phrase and has taken it too literally. Taffy's partner is on HT which it seems is currently successful as the PSA is dropping which leads me to assume that the chemo was 'early' chemo not 'last resort' chemo as used to be the norm. The fact that he did not tolerate the chemo and it was stopped does not imply that he is moving towards the last stages; he is still having the HT that he would have had if he hadn't been offered early chemo at all, and in that sense, he is in exactly the same position as all of you other men on long term HT - prostap will continue until such time as he becomes hormone resistant at which point presumably bicalutimide will be added for a while and then whatever other alternatives are available (abbi, enzo or something new not yet invented perhaps?)

We do have other members whose hormone treatment is managed entirely by the urologist - not everyone on here has an oncologist - so it may be that at Taffy's hospital, oncology were only involved in relation to the chemo and he will be referred back to them in the future if and when he becomes hormone resistant. That would explain the 6 months / 6 years comment as those of you on long term HT are all aware that there is no way of knowing how long it will be before your cancer learns to survive without testosterone.

That's my take on the situation, anyway. Hopefully Taffy will correct me if I am wrong.

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

User
Posted 20 Mar 2017 at 20:54

Ah sorry Taffy - I was still writing my post when you replied so I didn't see it. I doesn't change my view though that I and the other members misunderstood your use of the phrase 'nothing more they can do' - I think you may be using 'terminal' when you mean 'incurable'? Terminal is usually used when the man is in the final stages of the disease and no treatment is being offered except pain relief to keep him comfortable. Men who are incurable can survive for many years with clever use of hormones.

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

User
Posted 21 Mar 2017 at 00:17

Hi Taffy

I know that all of the partners and wives on this site will understand how you feel - putting on a brave face is the norm isn't it, feels as if it's expected of us even though we might be falling apart inside.

Two things that might help: first of all this forum is a fantastic place to rant / yell / cry / howl on. You can say anything, share anything, and people will really understand you and be there with comfort and empathy. So feel free!

And secondly, get in touch with the Macmillan team via your GP or your consultant and ask for counseling. Just having a place/space to cry in and a place to voice your fears can be a huge relief. You aren't alone but might have to be a bit pushy to get the support you need.

Will be thinking of you.

Hugs

Eleanor

xxx

PS And your f..k-it bucket list sounds like a brilliant plan too. Go for it!

 
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