Sleep/low mood

Hi Brizzy 

I have different treatment/tablets than yourself but I’m replying because I have a similar issue. I wake up needing a pee then back to bed and have a very low mood , worrying or just being scared in general. This is always at nighttime 

It doesn't happen all the time but enough to know its worrying. I’m putting it down to anxiety. . I’m going to try and go to the Maggies centre next week, apparently theres lots of things on like relaxation classes and yoga and cups of tea.

Anyway just wanted you to know theres people in the same boat as yourself and hope you get it sorted.

Hi There

I don't think this is due to your treatment, it's an age thing
I used to do it before I was diagnosed and still do now
There are loads of articles on T'internet you canread
Here's one 
https://theconversation.com/why-do-we-wake-around-3am-and-dwell-on-our-fears-and-shortcomings-169635#:~:text=Core%20body%20temperature%20starts%20to,launch%20us%20into%20the%20day.

Good Morning Tam1 and Brizzy1 

Maggie's is a great idea and the support there is top drawer. Two other avenues open to you for support are:

* Here at Macmillan we have linked up with BUPA to provide free Counselling should you think this would help - link here - Free BUPA Counselling.

* There's always the great folk on our Support Line on 0808 808 00 00 (8am to 8pm 7 days a week) who have plenty of resources for additional help.

I hope the above helps, if I can do anything else for you please do let me know.

Best wishes - Brian.

Hello Brizzy1

im really sorry to hear about your insomnia and low mood. You are describing exactly what has been happening for me since my husband was diagnosed- and I’m female!!! That said, my husband reached an extremely low point 18 months into his HT and, on medical advice, stopped.

I do think the diagnosis of cancer forces all of us ( patients and partners!) to face up to our own mortality and the fear of losing our loved ones and both are very scary. It’s not nice being frightened like this and this fear is much bigger when we wake up at stupid o’clock.

I think you need to talk to somebody - either a partner, relative or friend or a professional such as yourself Gp, your hospital team or a counsellor. Our mental health and wellbeing tends to get lost within the maelstrom of the cancer treatment but it is so very much part of the journey and part of the treatment.

practically , my own coping tactics! If I wake up and feel alert , I will often put radio 4 on ( my husband is deaf so it doesn’t disturb him). It doesn’t offer a lot in exciting conversation but it’s sometimes so boring I do fall back to sleep. If I don’t get back to sleep, I sometimes have a very early breakfast and put on some very light tv or radio entertainment. I’m not sure whether the more interesting entertainment distracts me so much that I go back to sleep or whether it’s having eaten. ( I’ve had breakfast at 3.30 these last two days!) Sometimes nothing works and I just do without the sleep in the hope I can stay awake all day!

It’s actually amazes me how I can live with so little sleep!

I hope this makes you feel less alone in this battle with insomnia! It sure sucks!

Hi Brizzy1 ,

I recognise this, but had this before I was diagnosed.

It was something that started happening some 30+ years ago due to job related stress. Whenever I get stressed now, it recurs.

As I am sure everyone on here recognises, being diagnosed with and treated for prostate cancer is a stressful experience. So right now, it comes and goes.

In my case, it occurs later than your experience. If I try and ignore it and go back to sleep then I end up in a kind of semi-nightmare state where, as you say, nothing at all is right with the world. I don't even have the trigger of needing to use the loo.

I do this to overcome it:

1. Get up.
2. Do some breathing exercises.
3. Play solitaire on my phone.

Once I break the cycle, I am usually able to go back to bed and resume sleep, often annoying my wife by sleeping through the alarm.

It all sounds quite easy, but those times I wake up in near-panic are not fun at all.

I suspect that we all have our own way of dealing with similar experience.

From my point of view, neither drugs nor booze helped.

I wish you very well,

Steve

Hello Brizzy1,

This has happened to me for over 5 years - it started shortly after I retired from work but stepped up a gear or two when my PC recurred in early 2024. Once a blue moon I will get 7 hours sleep but the majority of nights it's no more than 2 to 4 hours. I'm on prostap but noticed no difference when I started on it.

Like you, it's when I have to get up for the loo and I can't get back to sleep. My own remedy is to put the headphones in using my 'phone to listen to LBC chat which is mainly about current news and is on air 24 hours a day - it helps take my mind off any dark thoughts. Sometimes I'll nod off for a while but often not.

The strange thing is that, despite getting little sleep I never feel tired in the evening, rarely fall asleep before bedtime and it doesn't seem to affect me in any other way so I've never felt inclined to do anything about it. If it bothers you maybe it's time to consult your GP?

HiBrizzy1 

It’s probably the side effects of HT. Mr BW is the same, hopefully things will go back to normal once you finish taking it.

Lx

 
side effects for low testosterone : 

Hello Worriedwife 

Thank you for your post. I am so sorry to read of your insomnia - I am aware it's a very common issue on the Community.

Over on the Breast Cancer group they have a general chat thread, it's called AWAKE for obvious reasons and in the 8 years it's been running it's had 18.75 million views and 48,000 replies.

I also understand that 1 in 2 people diagnosed with cancer suffer from some form of mental health issue.

On a personal note I have fought this fatigue for 3 years and although I have resisted the "day time nap" I can sleep for England at night. Yes I suffer from nocturia, however I get up, wee and go back to sleep

Best wishes - Brian.

Hello Brian, thank you for the details. I am aware that I 

not the only wife/ partner posting in this forum who suffers with insomnia. Obviously, too, there are men who suffer from it too. Just as we have ‘no specific topic’ place in this forum , I am wondering whether we should have a PC ‘awake in the wee hours( pun intended!) place to go?

just a thought but don’t worry if you feel it is inappropriate or not needed.

Good Morning Worriedwife 

I wrote that post in reply to yours about 18 hours ago, and have been so busy (still have brain fog) got distracted and totally forgot to press "Reply". I was looking for it this morning thinking it had been moderated, found it and posted it.

Worriedwife said:

I am wondering whether we should have a PC ‘awake in the wee hours( pun intended!) place to go?

That's a brilliant idea, I think it's worth giving it a go so leave it with me.

Since the start of 2025 it's been noticed (not just on our group) but throughout the entire Community that we are much busier.

Kind Regards - Brian.