Some thoughts on emotional responses to hormone therapy

Hello Worriedwife 

A very though provoking post - thank you. I have read it a few times and I think there are many things that for me personally have changed. Is it the Cancer, is it old age, is it the Hormone therapy or something else?

I am 30 months into my HT/RT journey, I have had my last 6 monthly injection and here are my thoughts;

* This year Lorraine and I have been married 45 years. We were close BC (Before Cancer). AD (After Diagnosis) we have become even closer - I didn't think this possible.

* Yes I can "Cry for England". I don't hide it - I've cried in front of the whole family, in front of my mates in the pub, in Tesco, at funerals in fact even watching my beloved Oldham Athletic. I agree we are human and there's no shame!

* In the last 30 months along with the fatigue (I still haven't had an afternoon nap!) I have "mellowed" considerably. I am more tolerant of others, I sleep better (apart from my loo visits), I enjoy the grandchildren more, I have more time for others and the best one - I don't worry over anything!!

* Lorraine says I have much greater empathy for others - yes I have had training from Macmillan but it's much more than that

"I do recall at some point Brian (Millibob) said his wife thought the Hormone Therapy had made him a better man"

Yes - that's just what she said - and I agree.

Worriedwife said:

In a nutshell (forgive the pun!!!) we become better people because of the diagnosis! We should not be ashamed of our emotions but feel able to display them with pride that we care for others!

Yes - in a nutshell (pun forgiven) you are 100% correct.

For me 30 months AD - I am a much better human than BC.

Thank you Worriedwife for sharing my my journey - it's been some ride but there have been some very positive outcomes from the darkness.

Kind Regards - Brian x

These are good thoughts.

I have only been on hormone therapy a short while, and have no recognisable side effects. I have my first 3 month injection on 19/07 and understand that more side effects are likely to kick in (if they do, and I am not one of the lucky ones who breezes through the whole things) about 2 weeks after that.

The sexual side effects may or not be present - they don't bother me.

There have been a raft of emotions though.

All the chaos of being diagnosed. The worry of all the tests and the thankfulness when you are told that there is a plan, and what it is.

I have not experienced any tearful events.

What I have experienced is a gradually inicreasing sense of joy and appreciation of the people, things and nature around me. It is gratitude, especially for my wife, who has her own problems. We hold each other up.

There is gratitude that I can experience all these things, even if my future is more uncertain than before.

I think that is a serious point. Some times the gratitude does move me close to tears.

Hi

Thank you for your post I haven’t been on lately either.  Totally agree didn’t think myself and my husband could get any closer but we have and we both look at life in a different way now.  

My struggles are that overnight my husband seems to have slowed down and is very tired as still holding down a full time site manager job, he did actually have a day off sick yesterday for the first time!   I worry constantly about him and we are both definitely more emotional! It’s not helped that he lost his younger brother recently to cardiac arrest so we feel lucky to still be alive as life can be cut short but not lucky if that makes sense.

Question to everyone is how do you all continue working whilst on hormonal treatment and is there any support out there if he needed to reduce hours, I’m not really sure there would be much support from the house building trade!  My worries are that his life will be shortened and he is constantly  struggling to work whilst being so tired and I feel really awful that he is having to continue to work under the circumstances and should be living life to the full well in between naps of course!

.  

Hello WATP 

Another cracking post - thank you.

I have continued to work full time for the last 30 months BUT I am an accountant so I sit on my backside all day. I also wok from an office at home so no travelling.

I agree with your comments about life being cut short, if you click in my journey you will see right at the start it's thanks to prompt action by my GP and the NHS I am writing this!!

Reducing your husband's hours may be possible but may depend on his employer's policies and his contract of employment. You can always ask the question in our ask a work support advisor and here's the link

 Ask a Work Support Adviser 

Once you have sent in your question, please allow 2/3 days for a reply. I do hope this helps.

Best wishes - Brian.

Thanks Brian really appreciate your response I will raise a question on the link.  I agree it  definitely helps if you can work from home.  Thank goodness for your GP’s prompt action! Thanks for your continued support. 

Best wishes 
Diane 

And thank you, Brian, for an equally thoughtful response. Your words so resonate with my own emotional experiences and responses but I am not dragged down with hormone therapy - unless , of course, I am feeling for my husband who has been slowed down by it?

I don't think it is an 'old age' thing (because , of course, I am still 21!!!! Not really!) I have seen so much pain and suffering in my lifetime that I would have expected to be somewhat hardened by now!!!

I always thought (and was often told) that I was 'good on empathy' when I was nursing. I am therefore wondering how your wife, also a retired nurse, has experienced this emotionally? 

I would whole heartedly agree with you about the prostate cancer experience bringing you closer to your spouse/partner. We have celebrated our 50th wedding anniversary this year. We have had a good marriage with, I guess like everyone else, some really good times and some more difficult times. I am so pleased we did have those harder times because the fact that we got through those difficulties gave me the courage and strength to get through this prostate cancer difficulty - whichever way it turns out, I hope.

It's funny because I also think BC and SC - before Covid and Since Covid! We have all had some very seismic changes over the last 4 1/2 years, haven't we? 

It has been my pleasure and my comfort to have travelled this journey alongside you, Brian. You have given so much support and for that I thank you. I also worry for you! I hope that MacMillan are giving you support as reading and replying to all the posts - some of them quite distressing - takes a lot of emotional stamina.

Hello MSTEV

I think you are quite right! There is gratitude for everything we still have. I think there is also recognition that life is fragile and we have to appreciate and be thankful for every day. and yes, when we 'count our blessings' we can shed our tears of joy :)

Hello WATP, I think so many of us feel closer to our partners and I ask why that is? Is it because we are suddenly jolted out of our complacency and we realise that  none of us are going to live for ever? Is it because we are so worried about our menfolk and, yet, as we can't wave a magic wand to make it go away,  we draw closer to help them feel better? And yet, I have heard too of marriages breaking because the cancer has been the final straw. I suppose we all react differently.

I am so sorry to hear of your family loss. The suddenness of it must  have hit the whole family very hard.

I'm afraid I don't know enough about employment law to advise but I see Brian has provided a link for you. I hope you can get some answers.

I do wish you and your husband all the very best and hope that your husband can side step into some work less physically demanding. 

Hello Worriedwife 

Lorraine's been with me throughout, not always by my side but the support has been there when I have needed it. She's left me to get on with life and she's taken on "more stuff" that she would normally. She's RGM, RGN too so she's been keeping an eye on my attitude and the two or three times the "HT" has "got me" and I have been in a "darker place" she's sorted me out.

When the Community Team asked if I wanted the Community Champions job we discussed it in detail and she said - "yes - go for it, it will do you no harm".

The initial training is great (I found it hard at first but it's improved my computer skills). You don't think of stuff like safeguarding, data protection etc but it all needs covering.  The training is ongoing, we "Champs" have our own space on the Community where we can chat and we "meet up" online once a month along with the Community team. Every 3 months I have a Virtual check up to see if I am OK with what I do and have seen and crucially I have access to support should I need it.

In the 10 plus months I have been a "Champ" I have made the odd mistake, made many friends, helped lots of Community members and now spend about 80% on my time on our forum - the rest all over other forums. Off the Community I am involved in a Macmillan publication about treatment delays to be published in 2025 and am writing an article for the Community too.

All in all I find the job very therapeutic - like you in nursing it's a great feeling when you see a happy ending, but I have also experienced death too!

We are looking for volunteers - here's a link to something I contributed to last month:

 community.macmillan.org.uk/.../it-s-wonderful-to-have-community-champions---celebrating-national-volunteers-week-on-the-online-community

As I said - it's been one hell of a 30 month journey, and although I have had my last HT injection it will take most of next year to get out of my body. I am on lifelong PSA tests and with that initial PSA of 182 and being a member of the Gleason 9 club - who knows what's next......

Best wishes - Brian.

It has always seemed to me (even before my current experience) that people push themselves too hard.

As David2017 says regularly "listen to your body".

If your body is saying "Shut up and sit down" you might be well advised to listen to is.

Of course, it's easy for me to say that, semi-retired on a good pension after working 40 years with a bank, not so easy if you are not in that happy place.

In answer to your question "is there any support, yes there is.

The Work Support Advisers mentioned by Millibob will be far and away the best people to help you.

If you want to do some homework before you talk to them, these web pages would give you a good overview:

1] https://www.scope.org.uk/advice-and-support/work-careers/reasonable-adjustments

2] https://www.acas.org.uk/supporting-disabled-people

If your husband doesn't feel disabled (I don't either) there may be times when he should be acting as if he, to get the right level of rest.

Please pass on my best wishes.

Steve