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Is it normal to feel miserable?

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User

Posted 11 Oct 2023 at 21:54

Ian,

Thanks for words of support. Sounds like we’re in the same boat, mental wise. I don’t think it matters where you are on your cancer story to feel rubbish, it’s a bit like Cato in the Pink Panther, jumping out on Peter Sellers. Not now Cato you fool!

Work-wise, the reduction in the amount you give a sh*t is quite alarming isn’t it?! As you say, concentration lapses, good enough becomes good enough (when it should never be) and I’ve found I’ve become Mr Slopey Shoulders, handing off work to everyone else. Thank goodness for decent and accepting colleagues.

One good thing is that I’m lucky in that my critical illness cover paid out so money is much less of an issue than it was. But that’s only a minor saving grace.

I am considering stepping back for a while but like you, I’m waiting for my next treatment to begin so feel a bit of a fraud for even thinking about it now.

In running news, I ran London in 2018 at just over 4 hours. It was the hottest year they’ve had and it was in equal parts amazing and awful. But you know what Steve Winwood says…

Keep on running

cheers

User

Posted 12 Oct 2023 at 00:49

Hi Nick

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.

User

Posted 12 Oct 2023 at 10:20

Ohwow,

One of the good things to come out of this has been that I’m less likely to judge people. As you say, many people have their own health issues, physical or mental, so I take it easier on them than before. And if people don’t understand why I’m feeling down then I try not to be upset or angry - how can they possibly know how I feel if they haven’t been in the same circumstances? None of that is easy to do but I try.

I hope things turn out ok for you. It’s a long and winding path, good luck.

Nick

User

Posted 12 Oct 2023 at 10:53

Nick having read your profile just now the stress of an ongoing PSA issue after primary treatment should not be underestimated.

Personally I have found work helpful and my new "don't give a sh***" attitude has actually helped me in many ways to get things done because I no longer feel suppressed and say stuff like it is.

Re your treatment did the Onco explain why he thinks waiting until 1.0 for SRT s a good idea? I have read a few papers now which still support early SRT @ <0.25 even with negative PSMA

User

Posted 12 Oct 2023 at 15:32

Hi Nick,

Sorry to hear you haven’t been feeling at your best. It’s always a difficult time when you find you have a recurrence. We’re of course in the same situation but I think I had prepared us really well for that day, so we handled it better than I thought….although still have our moments of course.

Just following what Francij has wrote above. I see your PSA was 0.17 when you had your first PSMA scan, do you know what it was at the 2nd scan??

Rob had his at 0.164….although I think around the time of the scan we had another test of 0.221. His PSMA scan was also clear. We were given the choice to go ahead and start treatment asap with RT targeting prostate bed and nodes as a ´best guess’ sort of situation. (Oncologist recommended this as best option). We could have also waited for PSA to rise further and have another PSMA scan….she said a figure of 0.5 for re scan. It’s a difficult choice and no idea if we made the right one but if the correct area is targeted then we hope it’s good we went early 🤷🏻‍♀️

Rob has been on hormones about 10 weeks, he’s had his planning scan and RT starts 23rd October.

For us the HT has the biggest impact on sex life as he has no interest now. The ED actually seemed less of a problem. Again though my priority is that he is here and is well and thankfully life is still very good for us at this point.

Wishing you all the very best Nick 👍

Elaine

User

Posted 12 Oct 2023 at 20:59

Bit of an update: PSA has risen from 0.17 to 0.4 so another (my third, I’ll be glowing soon) PSMA PET scan in 6 weeks then decision time. My inclination is to start treatment, but will see how it goes.

@Franci, thanks for the words. The lovely onco really described what sounds like an educated guessing game when it comes to low levels of rising PSA, when and if to start SRT etc. They expect it to be in the prostate bed but even if it’s there or somewhere else it may not all be picked up by the scan. Too early for a choline scan.

@elaine, thanks too. My first PSMA PET was prior to surgery, just to check out a shadow on the pelvis (just wear and tear) and my PSA then was about 22. The second was when it was at 0.17 where nothing showed up and this coming one will obvs be at 0.4. We’re hoping we’ll see something this time! With a Gleason of 7 she’s not worried that the cancer will jump ship and start roaming around my body, which is very reassuring.

I asked her to sign me off for 4 weeks which she happily did. Then she escorted us to meet the Macmillan support worker who was great. I’m now in line for reiki, a support group, relaxation sessions and maybe a weeks stay in a caravan. She was great with Mrs Nick also. We were both close to tears - it happens when someone is so nice to you doesn’t it!

It does sound like your husband’s situation is very similar to mine. I expect I’ll end up choosing to go for treatment after the scan but we’ll see. I should have 2 months HT, 6 weeks RT then 2 or 3 years more HT. Is that what Rob is facing?

Now I’m off for a while, I think the pump and pills will be coming out of the cupboard while the kids are at school!

I hope you stay strong for each other,

Nick

User

Posted 13 Oct 2023 at 10:45

Yes very similar in terms of the pet scans. Rob had one before surgery too as his bone scan showed a positive met.

That’s good you’re having another scan at 0.4 then….it’s very difficult because you don’t want any cancer to be there but it’s also handy to know where it could be lurking 🤷🏻‍♀️people were wishing rob good luck for his scan and I wasn’t quite sure what a good result was! Of course glad there was no huge mass of cancer somewhere but also unsure now if all the treatment could be for nothing.

With Rob being upgraded to G9 we felt we couldn’t wait, only time will tell. He started his HT about 10 weeks ago and the plan is for 2 years but will see how he goes. His RT will be for 4 weeks starting a week on Monday.

So glad that you have managed to find some support groups and relaxation treatments for you and your wife. It’s really important to look after your mental well-being also. I had some counselling in the very early days but we seem much better 2 years on. As long as Rob gets up every day looking and feeling well, and able to be his usual active self and getting on enjoying life then I’m ok with that….my aim is to keep every day like that and then in reality it doesn’t matter that he has cancer.

Keep us updated on your scan Nick and wishing you and your wife all the very best x

User

Posted 13 Oct 2023 at 21:34

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

User

Posted 15 Oct 2023 at 01:07

Yes it’s really difficult not knowing. I’m just hoping Rob’s is in an area they are targeting and will kill it all 🤞🏼🙏🏼

So far with the HT he seems ok but of course it’s early days, he seems to have a few little aches (which I hope is the HT and nothing more sinister) fortunately he’s not having any flushes yet and he’s still able to be his usual non stop self! I think he is a little more tired at times but he is 75 now too. Like you say though everyone seems to have very different experiences x

User

Posted 01 Dec 2023 at 23:11

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

User

Posted 02 Dec 2023 at 00:13

Slightly concerned you are delaying salvage therapy when you had a positive margin. There is a good chance you know where it is, waiting until 1.0 or 2.0 means there is a good chance it will be somewhere else too.

Did your onco recommend waiting,??

User

Posted 02 Dec 2023 at 00:34

Originally Posted by: Online Community Member

Nick

Hi Nick.

Like you I had bilateral disease. I had RARP in Feb this year, pathology of removed prostate showed it had breached the capsule, Gleason 9 (4+5) T3a. I've had 3 x 3 monthly PSA checks since, all undetectable, but have been told there's still a 50% chance of recurrence.

I'm a young 67 year old, ex Army, ex Old Bill so pretty bomb proof. My previous occupations have given me a dark sense of humour and this has helped me cope. I'm also still pretty fit. Like you, until I was in my early 50's, I was running 5 miles every day and doing 5 sets of 80 press ups daily. Despite being mentally and physical quite strong, I've still had difficulty in dealing with this set back. I like to be in control of my life but this disease often seems to have a chaotic life of its own. There are so many uncertainties and so much waiting about for procedures and results.

What I find most difficult to deal with is the anguish it has caused my loved ones. I have posted before, that my heart goes out to younger men, like your good self, who have younger families and work commitments. I'd struggle to cope in those circumstances and I salute you for the way your dealing with the situation.

Keep your chin up mate. You're doing well, and should be proud of yourself.

As for the hand grenade analogy, always remember you're as safe as houses so long as you manage to keep the pin in.

Best of luck.

Adrian

Edited by member 02 Dec 2023 at 00:51 | Reason: Not specified

User

Posted 02 Dec 2023 at 08:31

Francij - thanks. Yes the onco said ‘if it was me I’d wait’ so I have to trust her reading of the situation and assume she wouldn’t say that unless the benefits significantly outweigh the risks. But I also know that we will consider our options at every three monthly PSA test and change course as the circumstances dictate.

Thanks

Nick

User

Posted 02 Dec 2023 at 08:45

Obviously you can't say who made that recommendation but you can say where? The logic of waiting until it's detectable on a scan appeals to me, my ONCO wants to blast everything at 0.2 regardless.

User

Posted 02 Dec 2023 at 08:48

Adrian thanks. There’s no telling how or when this disease is going to affect you, no matter how robust you are, is there? Another analogy: it’s like the proverbial rollercoaster but not one you want to be on or can get off.

I agree about the effect it has on loved ones although I count myself incredibly lucky to have a rock solid wife (who happens to be a counsellor, often of cancer patients) and two surprisingly mature teenagers (when it comes to my illness, not necessarily their own lives!) My dad was diagnosed with it two months before me, so my poor old mum has had a lot to shoulder too.

It’s a cliche but talking about it is very helpful. Whack it all out there and ask for help. I went to my first PC support group meeting on Thursday and it was great to compare notes, horror stories and jokes. Nobody was shy about talking about leakages or their old chap not standing to attention! Plus it was quiz night, and I came home with a box of chocolate biscuits, so every cloud and all that…

Good advice about the grenade. Let’s hope the pin stays firmly in position and yours doesn’t make an unwelcome reappearance.

Cheers

Nick

User

Posted 02 Dec 2023 at 08:54

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

User

Posted 02 Dec 2023 at 08:57

Nick, difficult situation to be in. There are lots of debates on the right time for salvage RT. Mine was done at around 0.23 based on the educated guess, obviously something was in the bed because the PSA dropped but presumably there was something out side the bed because the PSA then began to rise again. In the last 18 months I have had two separate lots of saber treatment to two separate tumors. SRT didn't do me any favours but not having SRT would not have done me any favours either.

A PSMA is not guaranteed to pick up anything, we have on here a PSMA picking up something at 0.023 and nothing at 200.

As you say you need to trust your oncologist's advice.

Hope you get a resolution.

Thanks Chris

User

Posted 02 Dec 2023 at 09:07

I think talking about is so important. The only people I wanted to talk about it to was my close family, and I couldn’t watch ANYTHING about ANY cancer on the TV. All that was before I joined my local Maggies Cancer Support Group, Then I began to open up and come to terms with this rollercoaster ride. I find some of the Group, with a far worse prognosis than mine, truly inspirational. Now I’m comfortable about telling anyone about my cancer, and if I’m having a bad week I always come away from the meetings feeling SO much better. I’ve also made many new friends from the Group and we support each other.

At yesterdays meeting we had someone from ‘Andys Mans Club’ come along and tell us all about his j9jrney and how the club had helped him through the years.

I know some Support Groups are not as good as mine but it’s well worth giving it a try…even if you THINK you are coping.

My biggest concern is that if my primary treatment of HT/RT doesn’t get it all then what’s next for me as a don’t have the option of SRT, and HT for life scares me😱

All the best to everyone on this unwanted ‘journey’.

Derek

Edited by member 02 Dec 2023 at 09:10 | Reason: Not specified

User

Posted 02 Dec 2023 at 09:59

Hi Nick,

Low mood hit me a couple of months post op and I have to say.. speaking to a councillor definitely helps.

Like you I had a positive margin and PSA started creeping up around 18 months post op. I had SRT to the prostate bed last year and so far so good.

Really hope things pan out for you.

Good luck.

Kev.

User

Posted 02 Dec 2023 at 10:18

Originally Posted by: Online Community Member

My dad was diagnosed with it two months before me, so my poor old mum has had a lot to shoulder too.

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 03 Dec 2023 at 00:33 | Reason: Typos tons of them

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