A question for the wives

As a princess said recently -you are not alone. You have a whole new family who are here to help each other.

Hello MamaS and welcome! I am so sorry to hear of your husbands diagnosis and your very very understandable distress - something a lot of us have experienced when our loved ones get this diagnosis!

like you , I just could not stop crying in those first horrible months when we were going through all the diagnostics and just did not know how bad the situation we were facing was going to be. It’s a horrible, scary time and one often fraught with waiting for reports, results, decisions to be made and treatment.

My husband completely withdrew from everything and everyone in those early days! He would not even talk to the doctors and nurses during his appointments. He wouldn’t talk about it with me or family either. I have never felt so lonely! This is how and why I came to this forum!

if you are like me and others who use this forum, burying my head in the sand does not work! I found that I needed as much info as possible to give me a sense of  some control in a world that was spinning out of control around me. Www.prostatecanceruk.org is a good starting point. It has loads of different pages for the different stages of prostate cancer and the treatment options etc etc. I worked on the basis that ‘knowledge is power’ 

also, there are people posting here who are dealing with prostate cancer that has secondaries like your husband and I know they will be responding to you soon!!!

the thing to really hang on to is that treatments for  prostate cancer have developed a lot over the years and there is a lot of research continuing to deal even more effectively with it in the future!  The medics have an impressive armoury to throw at it!  

what we found was that once treatment had got under way, we became more settled emotionally. We also realised that we had got to make the most of the good times and get on with enjoying life. I found that the diagnosis made me face our own mortality and that ‘now’ is more important than ‘what might or might not be’. Curiously and very unexpectedly, the diagnosis brought a new and much closer dimension to our relationship . It has not been easy and as I have just this last week posted, there are still now , some 21 months in, days when I just feel I can’t take any more. We still have our own needs after all! 

I do wish you and your husband all the very best on this new journey. Do let us know how it goes and also do feel free to ask any questions here. There is a wealth of experience to draw upon! X

Hello MamaS - Another warm welcome to the online Community - I am so sorry to find you here but as the "girls" have said in their earlier posts this is the place to be for help, advice or just to let off steam.

I am a bit like your husband - at first I didn't want to know - you read about Prostate Cancer but someone else gets it. Well by the time of my full diagnosis and I realised it could have killed me - my attitude changed and now I will move mountains to fight this cancer - not just for me, for my wife and anyone else affected by it.

You will find us to be a great bunch all with that bond - Prostate Cancer - so don't be afraid to ask any questions, however trivial you may think they are - nothing is taboo and we give honest answers.

The post from Worriedwife  gives a link to the Prostate Cancer UK site and here's the link to their publications - they are fantastic in giving details of the diagnositc process and also the various treatment routes.

https://shop.prostatecanceruk.org/our-publications

They are free and you can read then online or download them.

If I can do anything else for you please let me know,

Best wishes - Brian.

Hello MamaS and a warm welcome from me, Like your husband i have advanced prostate cancer which had spread to 8 places, started hormone therapy 20 months ago and aggressive radiotherapy 1 year ago for 4 weeks, resulting in all tumours shrinking by 80%+ and  NED "no evidence of disease" in 2, and maybe 5 more years to go, I can understand your husband closing up about cancer i didn't want to upset my partner and kids in the beginning but knew it was unavoidable so did. It really is an enormous shock to you both getting a diagnosis like ours, especially at the beginning, and it's normal to feel the way you do and crying is so much better for you than bottling things up, things will get a little easier soon and i hope your husband opens up a little soon. best wishes to you both.

Eddie

Hi Goingloppy 

Many thanks for your reply yes it was a big shock being told it was terminal.

Yes the HT has dropped the PSA down to 0.2 and I am now taking Calcium Tablets to strengthen my bones.

This is strange as I was on Calcium Tablets in 2005 following Radiotherapy for the consequences of my Stroke.

I have got my next bloods and appointment with the consultant within the next few weeks.

I do hope that everything goes well for you and your husband.

Prostate Worrier.

Hi Eddie,

Thank you so much for responding. I think it's little snippets of hope like yours that will get me through the initial shock and tough times and I will encourage my husband to also get support from others who are going through the same thing.

Please can I ask if you found the hormone therapy injections painful? He had an immediate one on Thursday straight after the biopsy and had two swollen lumps at the site of the injection which he said were uncomfortable. I don't want to go into full on nurse mode if this isn't something we should be concerned about so any feedback on your experience with the injections would be gratefully received.

Hi Worried Wife,

Yes, I am very much like you and I think the feeling out of control and not understanding what is going on or how this is going to change our life together is the reason for my panic.

Reading that you also felt this way is very reassuring. I think that once we see the oncologist to work out a treatment plan and to understand what our future now looks like, we will both feel more in control and I'm hopeful this will reduce the feeling of panic and enable us to put everything into more perspective. It will be great to just get to a point where I can talk about it, read about or think about it without it reducing me to tears every two minutes.

Thank you again for the kind words and encouragement.

Hi MamaS, please ask any of us any question you want, we are here to help you and each other. I have three monthly injections prostap 11.25ml in stomach and apart from an occasional small temporary lump, never any discomfort, I am assuming from your post the injection site is now pain free, if so and it remains so i would wait for his next injection and mention it to the nurse, I'm sure your husband would benefit from talking to others on a similar journey, if he would like that to be face to face, Mggies, www.maggies.org do a group course called "ongoing with cancer" for people like us, take care.

Eddie

Hello MamaS,

My partner is in a similar position. If you read my profile you can see his medications and treatment. He is doing very well now . Terminal is now treatable, and it is very much so. There’s lots of options for your husband to have and there will be more in the future, so don’t give up hope. My partner had full pelvic RT that was very successful, an advantage of being a younger man is that you are able to take some full on treatment and recover well. Because you are less likely to have other problems like diabetes or heart etc. once you become familiar with the treatments you will become more in control and you will be able to relax more. There’s lots of good advice here to be had so keep contact with any questions or worries. Best wishes to you and your husband .

L

Hi, my husband has also been diagnosed with stage four prostrate cancer that has metastasized to his bones. His PSA was 940, not as high as your Husbands, but he is kiw waiting for a hip and thigh repacement operation as they cancer has made his bones so brittle. The doctor has said that it could be 1 to 2 years but he is only 57 and I am devastated. Could you offer any advice? I know that you posted this 2 years ago, how is your husband?