Is it normal to feel miserable?

I would agree that men are not good at talking but I have found through Maggies that when new members join the group, initially they are very quiet but once they realise how relaxed and open the other members are, they soon open up and talk freely….and they feel much better for it.

Derek

Hi Nick

Yes, in a word. I am on active surveillance after a second opinion on my diagnosis made it an option originally denied.

I am thoroughly miserable about the whole thing, and cant stop questioning whether the original pathologist was right and I am being stupid. I know, and am constantly reminded, that this is arguably a far better option than facing up to the side effects of treatment sooner than necessary. However, I cannot seem to shake off the low mood that has been hanging around since my MRI result some months ago. I think I was tending towards mild depression before this even started, as my mother has terminal cancer, and my younger brother has just undergone major surgery for oesophogeal cancer.

I think we just have to remember that there is always someone worse off than us, including a lot of the stalwarts of this site. I know that I will at some point (possibly sooner rather than later) suffer these side effects, but hey, you've got to be alive to pee in your pants eh!

Try and stay positive mate.

You have my sympathies.

Had my RP five years ago and have recently completed RT and am on HT, as my PSA has been rising again.

Most the of time I stay happy and upbeat but sometime I can have some really low moments.

Enjoy the good days and don't let the bad days get you down.

Good Luck from a fellow survivor!

Nick

I think I read in your bio that you're a runner? Hopefully that will help with the mental stress. I have just started trying to get out again after a few months of not bothering, and I am finding it makes a big difference to my state of mind.

Ian.

Nick

Yes I lost interest after my biopsy really. Had to take a week out for obvious reasons, then was too stressed to bother until diagnosis, after which I sort of lost the plot with most things.

Back at it now though. Want to run an ultra next year, as I will hit 60 and refuse to grow old gracefully! I also think I might as well be as fit as possible for the foreseeable future, to help with whatever this disease brings.

Cheers

Ian.

Nick

Yes unfortunately so. It'll be another 2 or 3 years until I can afford to call it a day. Makes training for anything a bit of a pain in the winter months, but the treadmill/Zwift option is my fallback. I think an ultra will be a big challenge, but having done a marathon a few years back, it seemed like the next goal to aim for. We'll see....

Ian.

Hi Nick Plym

It is quite shocking for me to see so many relatively young  men (compared with me who was diagnose at 72, surgery 12 years ago and still here!) diagnosed with this life threatening or at the very least affecting your quality of life, particularly sex life. 

Nick, what you are feeling is perfectly normal. When I was diagnosed our world fell apart, so we thought. But with encouragement from my kind urologist and support from my wife I began to feel that there was life after this catastrophe. Very slowly but surely I began to recover and now we are once again enjoying life. We always had a very satisfying sex life which we were determine to reclaim and have done so. Even now we are amazed at what we have managed to achieve. Because of my age my erections were waning anyway so after my surgery I did not expect a miracle and we began to look at alternative approaches to our love making. Because of my age and the surgery I decided to use a pump and in many ways our sex life is better than it was just before the surgery.

You have a pump gathering dust in the cupboard. May I suggest you start using it regularly to remind your penis of its enjoyable function. Get the blood flowing. You may wish to following the link below to see how it is possible to re-claim your sex life; if you send me a private message I will send you a video on how best to use a pump.

Best wishes

Pratap

https://community.prostatecanceruk.org/posts/t28948-Re-establishing-Sex-Life

Yes, although I'm now retired.

I worked with some very supportive people.

I was able to be very positive at work, except when I got a call saying that my bone scan had picked up cancer cells on my ribs, at which point I broke down completely. 

The next day I was able to return to my positive self and no one mentioned the previous days events.

Alan, sounds like we’ve both been lucky with our colleagues. I’m one of three partners in a small firm so am fully aware of the impact my situation has. Unfortunately it’s a double edged sword, I am deeply grateful for their support but at the same time feel immense pressure to not let the side down.

I also try to stay positive but that can give people the impression that I’m sailing through it, like a stoic. Things came to a head this week and I think my pressure valve has gone, hence taking time off work. It’s so unlike me to feel so down, I have to say it’s taken me by surprise. 

On the work front, I totally agree.

Quite often I find myself thinking why do employees make such a drama out of minor issues, and I get quite irritated with them. Its not their fault, and most are only trying to do a good job, but my head space is saying these issues are just not important anymore.

If I get into conversations with any about health issues, you find almost everyone (certainly over a certain age) has their own health dilemmas to deal with, serious or none serious.

Life goes on and your priority and focus drastically changes when faced with such things as PCa.

Hi Elaine

Thanks very much. The not knowing exactly where the cancer is I find very frustrating. I just want to get on with treatment to be honest so I’m hopeful that we’ll do that and I can get out of the state of limbo. 

All the best to Rob. I’d be interested to hear how his HT goes . I know everyone’s experience is different so I’m trying to read plenty to get a rounded picture. I’m hoping the local support group will be useful in that respect too.

I have a couple of counselling sessions left, which I think will have been very helpful. Finding someone with experience of working with cancer patients has been great, I recommend it. 

I’ll update about the scan.

Nick

Quick update:

PSA has risen from 0.4 to 0.53 in about 7 weeks but still no sign of the cancer cells on the PSMA PET scan. I decided to continue active surveillance, waiting for it to get to 1.0 and have another scan. If still no show then wait to get to 2.0 and have a choline PET scan. 

Advantages of waiting are: 1) to give more time for innards to repair post-surgery, which increases chance of better continence outcome; and 2) to give more time to try and get some sort of sexual function back before HT/RT starts. If I still have complete ED before then, the chances of regaining any is apparently remote if not impossible. Neither Mrs Nick or me were really aware that was the case, so a bit of a shock. 

In other news, I am feeling mentally well enough to start gradually going back to work. It’s taken about 7 weeks of being off work to get myself back to this point. I’ve done a lot to help myself: counselling, talking to hospital cancer unit support workers, reiki, breathing exercises, surfing, running, better diet, bird watching, making airfix model aeroplanes, gardening, walking, joining the gym and getting a personal trainer, seeing family, starting going to local support group, talking to Mrs Nick. I can’t say that any one thing has been more helpful than the rest, but I know that having the time off work to do all those things has been key (and not thinking about work!)

I also spoke to an old client and friend who is almost exactly a year ahead of me having had very similar experience of recurrence (and had HT/RT.) He’s ex military and said his journey is like being given a hand grenade and told to hold onto it. I wonder how many others have felt like this?

Nick

I’m in Plymouth, but I don’t know if every onco does it their own way, even within a department.  Maybe I struck lucky. 

Good luck with it

N

My father was diagnosed with it when he was 77 years. I think he was just treated with HT and lived another 11 years. He soldiered on but his last couple of months weren't easy. 

Unfortunately, very shortly after dad died, my younger brother was diagnosed with the disease and opted for HT/RT.  A couple of years later I was diagnosed and elected AS.  Two years later, the disease had aggressively progressed, and I had RARP.

What concerns me is I have two sons, 45 and 43, and I often wonder whether they'll get it. Ironically, the youngest is a doctor of genetics but he doesn't seem overly concerned.

Like yours, my wife is very supportive. I'm sure she's coping a lot better with me having cancer than I would if she had it.

As you say, life is certainly a roller coaster. Two months after my prostatectomy, I had a heart attack and had to spend  two weeks on a cardiology ward,  whilst still recovering from the prostate op. There were poor blokes in there waiting for triple bypasses, who were feeling sorry for me.  Their reaction showed me, that most people are more afraid of cancer than other more life threatening diseases.

But whatever our circumstances, there's always someone much worse off.

I can remember, when I was in the Old Bill, getting a call from a very distraught mum that her nine year old son had run away from home.

It was a foul winter night, freezing cold and sleeting. Me and the lad's dad went searching for him. Eventually, about two hours later, we found him huddled by the bins at the local secondary school. He was soaking wet, extremely cold, and clutching his favourite Action Man.

It wasn't until he was safely back home, that I fully understood why he'd done a runner. He had some form of blood cancer and was due more unpleasant treatment at hospital the following day. The poor young kid was so frightened that he couldn't face the prospect of anymore pain and sickness.

I  often think of that little lad, and wonder if he's still with us. It certainly puts life into perspective.

 Sorry for hijacking your conversation. It wasn't until I read back over it, that I realised how much I'd rambled on.

Edited by member 02 Dec 2023 at 23:33  | Reason: Typos tons of them

Nick , out of interest, do you know which tracers you had. My first one was the 18f 1007, that picked up one tumor, the second one a few months was the Gallium 68, that detected the second very small tumor and a residue in the first tumor.

Not qualified to say if one is better than the other, but thought I had seen that they had different detection capabilities.

Thanks Chris 

Chris, I’m afraid I don’t know which tracer. If I remember I will drop the CNS team a line and see if they can tell me. I didn’t realise there were options.

Cheers

Nick