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User

Posted 05 Mar 2017 at 11:21

I don't know if you will remember me from the old forum.

Hubby dx 2011 then had HT and radiation treatment.

Been off HT for a while but PSA rising.

Had MRI clear but bone scans suspicious. On Thursday got results from PET scan. Now in bone (2 spots) and also 2 lymph.

Been offered 2 treatment paths. Intermittent HT / or Chemo and life long HT. As is is only 56 and our daughter is now 13 - we have gone for the more aggressive approach.

So we are definitely now in the incurable camp -

Any advice on

1. how to handle the chemo ? Reduce risk of infections etc

2. How to tell a 13 year old this devastating news. She has recently had friend trouble at school as well. We did not tell her when she was a younger to spare her the pain in the hope the RT would work.

Thanks.

User

Posted 06 Mar 2017 at 00:16

Hi STF,

All I can say is every family is different and every teenager is different Trevor was diagnosed when our boys were James was 13 and our youngest Zack was 9 . Trevor at that point was unable to stand / dress himself or walk and so to get everything out in the open at that stage was for us the right thing to do so pretty much from the the get go our children have known .

The choice has to be yours but sometimes with children the fear of the unknown is worse than the truth, This was al 4 years back for us and I am glad we told them when we did because know I don't need to have that conservation.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 16 Mar 2017 at 19:08

Hello Shireen,

We were on the post "Radiotherapy Underway" that you started, and all shared our experiences back in 2011. I am so sorry to hear your news. It looks like this spread has been picked up early, which is a good thing, but it is a nightmare to move from the "Curable" camp into the "Incurable" one. At least we are 6 years down the line, and there are now more treatments available to hold back the cancer. All of us on that original post knew we were "high risk", but we did all get good treatment. I do remember that your husband's RT was carried out with him face down, whereas we were all face up!
Please remember me to him, and good luck with the Chemo. The HT should hold back any advance for sometime, but it does have its side effects, as I am sure you both know.

Best wishes,
Peter

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User

Posted 05 Mar 2017 at 13:22

Hello STF and so sorry that things have escalated.

I won't comment on how to tell a teenager, I'm sure others on here will have that experience and will share.

As for Chemo, one thing I did pick up was pineapple sticks which apparently help stop mouth ulcers forming.

I hope somebody else can confirm that for you and offer their own take on it

We can't control the winds - but we can adjust our sails

User

Posted 05 Mar 2017 at 14:52

Hi STF

So very sorry to hear your news - do hope that some of the long-term members of this brilliant forum come on to tell you their cheering 'I'm still standing' stories. They were a massive help to me in similar circumstances.

I can't answer the teenager question but I'm sure the specialist nurses / counselors on the site will be able to give you good advice.

But everything you ever needed to know about chemo and preparing for it is on David's session by session review 'the highs and lows of Docataxel'. He's just completed 6 sessions and, like my OH, found it entirely manageable.

Do hope your husband has a similar good experience.

Good luck and very best wishes.

Eleanor

User

Posted 05 Mar 2017 at 16:45

I found some really good material on the Macmillan site dealing with how to talk to children of different ages. Bupa also had some interactive material that might work too. Mine are younger, and our diagnosis is different but also fraught with mental health issues, but we have found that being as honest as possible and using age appropriate language has worked for us.
I also went into school and made sure they were aware as well as friends parents just in case they wanted to talk to their friends who then mentioned it at home.
Good luck with it all.

User

Posted 05 Mar 2017 at 18:50

On the basis that the chemo/HT combo could keep him well and with you for many years, and who knows what science will bring us next, I would be tempted to tell her he has cancer but not necessarily go into detail at this point about the fact it is incurable. Many adults believe chemo cures all cancers and so it is not outrageous to imagine she will also hold this belief for a while, at least until after you have got through the chemo stage. Drip feeding information bit by bit may be better than knowing the full story immediately. But you know your daughter best and can judge better than us how much she can take.

Her school will have a designated safeguarding lead (DSL) who is responsible for the welfare of all pupils and should know what services are available in your area (counselling or support groups where she might meet other young people in a similar situation, for example)

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

User

Posted 05 Mar 2017 at 20:43

Shireen,

Firstly read this:

http://community.prostatecanceruk.org/posts/t12167-Surviving-Docetaxel-Chemo#post151949

Then read this:

http://community.prostatecanceruk.org/posts/t12197-Docetaxel-Chemo---the-highs-and-the-lows#post152202

I'll allow you to skip the bits about beer. http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif

David

User

Posted 06 Mar 2017 at 00:16

Hi STF,

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 06 Mar 2017 at 06:45

Hi , sorry hubby has ended up in the incurable ( currently!) camp.

My kids were 9, 15 and 17 when I told them. I read the Macmillan stuff which was good. I told them that I was incurable but did not say "terminal". I was 49 at the time. I went through chemo ok and made a point of being same old dad. My release is running which I still do as I found time to mentally sort things out regularly helped/ helps enormously, does hubby have a hobby he can mentally escape with?

Just over 2 years on I am still running ultramarathons and if anything being more adventurous than ever, I won't stop until I can't do any more physically but as I have discovered, mentally most things are up to you.

Do share how you tell your daughter and reactions as it will be helpful to others.

Kev

Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019

User

Posted 06 Mar 2017 at 09:28

Hi Shireen,

I can't really add much to what's been said, other than teenagers are often quite robust and too focused on their own relationships to worry too much about their parents problems. My own 'natural children' were in their 20's when I was diagnosed, and my teenage step-children were still getting over the angst that I had had the temerity to marry their mother, so perhaps it was easier in my case.

What I have noticed with my wife, is that she needs to know that I am open and honest with her, if she thinks that I am trying to spare her bad news, like a high PSA result, then her imagination goes into overdrive. So I have learned to tell her everything she wants to know.

You may need to focus a little on your own wellbeing, many of the wives on this site have talked about anticipatory bereavement, by the sound of it your husband has many years of life ahead of him, and they may be many years of worry for you. I don't know quite how you combat that, it seems a bit flippant to run out the mantra that 'I've got cancer but cancer hasn't got me'.

When I was first diagnosed I was desperately keen to learn all I could, my wife and I used to go to all of my local support group meetings, and our house was full of reading material I had picked up here and there. Slowly but surely we have got rid of all references to cancer in the bookcase and I know longer go to meetings, I can keep up-to-date on the Internet and find this site very useful, but my wife and family can get on with their lives without constant reminders that I have cancer.

I am not saying that is the answer, and I don't suppose a day goes past when my wife doesn't suffer some anticipatory grief, but it seems the least we can do to make our lives as normal as possible, and yes we do have some fun, and yes I do sometimes forget that I have cancer.

Dave

User

Posted 06 Mar 2017 at 15:21

I told my 17 year old and my 14 year old. My 17 year old, who is hoping to study medicine next year looked up prostate cancer and found a research report into erectile dysfunction and incontinence. 'Not very good, dad, what with you being a man' was her comment. They are both reassured that at the moment I look well and am no different visibly from before my prostatectomy. I've told them I'll be around for a very long time yet (as I probably will) and with teenage short-termism, they're happy with that.

Ulsterman

User

Posted 16 Mar 2017 at 19:08

Hello Shireen,

Best wishes,
Peter

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