How has PCa changed you?

User

Posted 13 Sep 2023 at 08:53

In a recent post gaz61 made a very profound comment

‘I feel for those still suffering this horrible desease it definitely changes you’

This got me asking myself the question ‘ How has it changed me?’. I am by no means through it yet, with another 21 months (YES! I’m counting!) of this horrible HT a treatment to go.

I’m not talking about the obvious sometimes debilitating physical side effects of the disease and treatment, but more how has it changed you as a person for better or worse,

My thoughts are listed below…I’d be interested to hear yours!

The Bad!

1. I’ve always had a wee bit of a short fuse, but when waiting on tests results, I am extremely tetchy….my poor family😟

2. It’s made me angry at times….the ‘Why Me?’ Syndrome 😡

3. It’s made me quite emotional, although I think the sertraline helps with this enormously.

The Good!

1. It’s given me an even closer loving relationship with my wife, who has supported me throughout, wiped my tears away(not THAT often!) and kept me thinking positive.

2. I tend to treat every day as if it were my last.

3. I don’t put off things that I can do today, until tomorrow. I just get on it’s them NOW! major house renovations which I’ve put off for years are going on at at the moment, new boiler fitted, conservatory roof replaced and inside refurbished, new kitchen being delivered in 2 weeks time…it’s all go and keeps my mind focused!

4. I don’t waste any minute of the day, I don’t watch rubbish TV anymore, mainly watch sport…disappointed at the Scotland result last night but wow! England WERE good!

6. I am much more active, I only rest when my side effects tell me I need to. Walking, cycling(love my e-bike!), gym and swimming.

7. Through Maggies I have many more male friends, some of whom I’ve formed a close bond with. Maggies really has been my saviour.

8. I love the simple things in life like just going out for a coffee….love my one shot of caffeine per day and it really helps boost me😊

So…many more positives than negatives, and I think that’s important for getting through this ordeal!

I would love to know how it’s changed others….

Derek

User

Posted 13 Sep 2023 at 08:53

In a recent post gaz61 made a very profound comment

‘I feel for those still suffering this horrible desease it definitely changes you’

This got me asking myself the question ‘ How has it changed me?’. I am by no means through it yet, with another 21 months (YES! I’m counting!) of this horrible HT a treatment to go.

I’m not talking about the obvious sometimes debilitating physical side effects of the disease and treatment, but more how has it changed you as a person for better or worse,

My thoughts are listed below…I’d be interested to hear yours!

The Bad!

1. I’ve always had a wee bit of a short fuse, but when waiting on tests results, I am extremely tetchy….my poor family😟

2. It’s made me angry at times….the ‘Why Me?’ Syndrome 😡

3. It’s made me quite emotional, although I think the sertraline helps with this enormously.

The Good!

1. It’s given me an even closer loving relationship with my wife, who has supported me throughout, wiped my tears away(not THAT often!) and kept me thinking positive.

2. I tend to treat every day as if it were my last.

4. I don’t waste any minute of the day, I don’t watch rubbish TV anymore, mainly watch sport…disappointed at the Scotland result last night but wow! England WERE good!

6. I am much more active, I only rest when my side effects tell me I need to. Walking, cycling(love my e-bike!), gym and swimming.

7. Through Maggies I have many more male friends, some of whom I’ve formed a close bond with. Maggies really has been my saviour.

I would love to know how it’s changed others….

Derek

User

Posted 18 Oct 2023 at 06:28

In recent years I've discovered that I'm ADD. I use that term rather than ADHD because in adults the Hyperactivity bit isn't usually quite as apparent as it is in young children. For me, it's a family trait that effected my father and now gives my son trouble.

The reason I raise it here, is that based on my own experience and from watching my son growing up, testosterone at puberty really brings out AD[H]D. I'm fairly sure that being on HT temporarily smoothed ADD symptoms for its duration. Post HT the second puberty has been a mixed blessing and I'd sort of forgotten what ADD was like and how to deal with it, so while leaving HT behind has been a great relief in most ways I think it's worth telling others here, that if they are ADD people, they might have to deal with a resurgence of this blight when they regain their normal testosterone levels.

Jules

User

Posted 18 Oct 2023 at 17:47

I'll bet that I am in the minority but maybe it was the way that I was raised - my family talked about death frequently and were very matter of fact about it - it happens to everyone eventually. We were not religious, don't believe in anything afterwards and just think that you should live your life every day at a time. When Mum and Dad passed, we shed a tear of course but there was no funerals and the ashes were spread in their favourite places - in dads case it was at his local fishing spot and I promised to feed him back to the fish so they could get their own back LOL

So to answer the question, I really don't feel that it has affected me very much at all. I'm still deeply in love with my wife, enjoy life day to day and even joke when she wants me to do something that "I can't - I have cancer!" - I bet that will get some comments but it's just the way we are.

I know my diagnosis was not what I hoped for but hey, there are a lot of people in a worse condition and I'm sure that there are plenty of treatments and options that will keep me alive for another 15 years or so.

User

Posted 29 Jan 2025 at 15:22

Hello chaps.

Interesting thoughts on this thread ! I can feel a ramble coming on…

I’ve been on this journey for 7 tears now and i fear it is nearer to the end than the start with chemo and Abiraterone both unable to stop the spread. Next appointment with consultant February 19th to see what we do next.

Retired in 2019 when i was 64. I didn’t choose to but as an agency consultant they decided I’d be off soon because of the cancer so i got me marching orders. In actual fact it wasn’t a bad thing. We decided to downsize and I spent a few months redecorating the whole house and now we’ve been in the new house over 3 years we are very happy here. Redecorated here as well , just a new kitchen to go in now.

I bought an old 1973 Kawasaki to rebuild when we moved to keep me busy. Took me about 9 months but i got it done and i have to say it looks fabulous now after starting off as something from the swamp. Gonna sell it on now as i don't feel safe on it now as i have lost so much strength in my body and i also think my cognitive abilities have reduced quite a lot.

I did have a really difficult time mentally at the beginning and luckily saw a counselor straight away. I had issues from my childhood to deal with which I’d never done so we had a lot to get through. I still struggle at times and depending on how i feel after my next appointment i am going to ask about a couple more counseling sessions. When my allocation of hours run out she did say if you get a change in the cancer situation she might be able to get a few more sessions. I think she was hinting that i have to say it’s the cancer situation thats changed.

I am at the point where i can only really think about this coming year and nothing beyond. The wife and i both love travel but it’s really difficult as you will no doubt know to get travel insurance when on treatment . So i went straight online to get travel insurance when they told me in December they were giving me a rest from treatment other than steroids and HT for 2 months. Immediately booked a weekend away in Jersey to visit our oldest son , his wife and our grandson as they live out there. Also 10 days away in Portugal with the oldest’s family in April. Hoping they don’t start me on something in February which means ill have to tell the insurance people…

I do get quite depressed about leaving my wife on her own. She’s 8 years younger than me so has the opportunity to have another life after I’ve gone. That does upset me and then i get more upset for being upset 🤦 as i know i only want her to be happy. Both our boys i know will be ok so I am not so worried about them. They are both in their 30’s so old enough to deal with this stuff and they’ve known from the beginning all the joys of this rollercoaster ride.

The wife and I have been through our finances so it will be fairly simple for her when i croak… Do have to get our wills sorted though. She will lose my state pension when i go and also my private pension (which is crap anyway). We do have a rental property which is a nice income so she’ll have that. Difficult mentally to do all this preparation but it must be done.

One thing I’ve noticed is that I’m looking round the house like I'm going to be moving and I’m trying to get it all in my memory. Not sure my brain can take in that I’m dying and really wont be around to remember it … bizarre feeling.

Also sometimes get annoyed that my Dad lived to reach 94 and he was never nice to me. We never really got on even when i was a child but as he was local and in sheltered accommodation then at a care home i had to see him at least weekly. He fawned over my younger brother but never seemed to like me. As an example imagine your parents putting you in (unregulated) foster care when you were 13 because they had better stuff to do. Had to change school twice because of that. Me and my brother were very independent and I’d also had much worse things happen to me when i was younger so we just got on with it.

What i did find was that up till the PCa entered my life my brain was quite happy to keep all the s*** well out of sight of my consciousnesses but then it was like all hell was let loose. Pandoras Box springs to mind. Not sure if it was the HT or the diagnosis or probably a bit of both. Anyone else get that?

One thing is I have learnt a hell of a lot about myself and why i am who i am. The counselling is amazing and i would advise anyone that it can only help. 🤪

I did say i might end up rambling on, and i have , so I’d better finish now.

Take care chaps, hope I haven’t put a cloud over this interesting thread…

Phil

User

Posted 13 Sep 2023 at 23:50

Hi Decho,

Interesting thought but after 10 minutes thinking it seemed most of mine are more neurotic than logical. They're more related to getting older.

There are things like is this food or activity possibly detrimental. Is dairy bad for PCa? I cut back to 2 pints max or half a bottle of wine twice a week because too much may undermine my immune sytem or irritate rogue cells.

At the gym is the saddle on the bike going to loosen rogue cells. I'll stick to the treadmill for intensive activity.

I worry more about my wife and I think she worries about me which does make you more considerate and shielding than normal.

I never ask why me though. I just think what do I need to do to keep it down.

It's a new interest, is there anything new about PCa. Is there anything on the PCUK forum I need to know.

New thoughts. How long will I survive, will it come back. Do I need to be aware of scan timescales. At the moment I can imagine lasting another 10yrs which seems pretty good and imagine I might last 15.

The combination of getting older and the recurrance going slower gives more optimism, for me.

I think it's going into ramble mode so it's bedtime.

User

Posted 17 Oct 2023 at 23:56

The telly keeps telling me that 1 out of 2 people will have a cancer during their lifetime and 1 out of 8 men will have prostate cancer.

Morbid though it may seem I often reflect on these figures. It stops me thinking I'm unlucky or drfting into bouts of self pity. I also think more of those who are far less fortunate than me.

However I do feel sorry, in fact at times, almost guilty, for the effects my disease is having on my loved ones, particularly my wife. I certainly wouldn't cope as well if it was her that was ill.

I try to live as I did prior to this set back. I still drink too much. I still eat relatively unhealthy. I still get far too little sex.

I suppose I'm a bit more grumpy than I used to be, but that seems reasonable.

What I have found quite refreshing is that I no longer worry about things that don't need worrying about and treasure more the things that matter most.

Edited by member 18 Oct 2023 at 00:45 | Reason: Grammar

User

Posted 20 Oct 2023 at 09:10

Sorry that it has affected you so badly John - that sucks.
How much do you talk to your wife and children about your situation and feelings?
If you are bottling it all up then that's doing you or them no good at all.
Worried about how they will cope when you have gone - ask them, talk about it. Yes, there will probably be tears, but discuss it.
Death is part of life, we all die one way or another sooner or later. Some through disease, most through coronary disease, and some through accidents. Face up to it as a fact and then talk about life after you (or they) have gone.

Sitting there worrying about it yourself is not helpful.

And yes, I think 'motivation' is the #1 problem in maybe 90% of cases.
A trivial example is that when I was younger (at school), I would go hunting and fishing with my Dad. At the weekend I'd be lying in my bed until maybe lunchtime EXCEPT on the days we were going fishing or rabbiting when I would be up and dressed by 5am raring to go. It could be the worst weather, rain, snow etc but his comment the night before - "If you aren't ready then I'm going without you". Motivation achieves miracles :)

Edited by member 20 Oct 2023 at 09:11 | Reason: Not specified

User

Posted 21 Oct 2023 at 22:55

Ditto what Steve says ForestJohn. However I know from personal experience in Maggies that men find it MUCH easier to talk to a group who are in the same position as you, rather than people close to them(and that includes me!). It needn’t by PCa, any cancer, we have a guy joined recently who was not in a good place but is slowly opening up and it IS helping him. I also get inspired by some of the group who have a far worse prognosis than me but are so positive and living their lives to the full.

Its good that your determined to keep teaching, although that in itself must make you tired.

Re finding something that excites you, I find eBiking does it for me. You’re getting lots of exercise, you can work as little or as hard as you like and it’s quite exhilarating. The thing is even if I don’t have much energy, I can just stick in turbo mode and still have a lot of fun.

Have you ever thought more carefully about getting a little help in the form of something like sertraline….it’s done wonders for my mood. Yes, I would rather deal with this myself, but the way I see it is the anxiety was brought on by HT, so it’s just another side effect which can be mitigated by taking his ‘Happy Pill’. Without it I would be miserable and anxious and I already have enough to deal with with this disease

All the best and try and stay strong and positive, even though it might be hard at times.

Derek

User

Posted 29 Jan 2025 at 08:20

As Adrian say's it has increased my internet use dramatically! It has also made me re-evaluate my priorities in life. I have accelerated my retirement plans. I am now aiming to semi retire at the end of this year (down to 3 days per week) then fully pack in working in another couple of years. Given the reasonably high chance of BCR in the next few years, I don't intend to spend any more time working than I need to. I intend to spend far more time doing stuff that I enjoy.

Oh, and I also seem to have developed a bit of a F**k it attitude to most things in life. It certainly puts things in perspective 😬

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User

Posted 13 Sep 2023 at 23:50

Hi Decho,

Interesting thought but after 10 minutes thinking it seemed most of mine are more neurotic than logical. They're more related to getting older.

At the gym is the saddle on the bike going to loosen rogue cells. I'll stick to the treadmill for intensive activity.

I worry more about my wife and I think she worries about me which does make you more considerate and shielding than normal.

I never ask why me though. I just think what do I need to do to keep it down.

It's a new interest, is there anything new about PCa. Is there anything on the PCUK forum I need to know.

The combination of getting older and the recurrance going slower gives more optimism, for me.

I think it's going into ramble mode so it's bedtime.

User

Posted 17 Oct 2023 at 23:56

The telly keeps telling me that 1 out of 2 people will have a cancer during their lifetime and 1 out of 8 men will have prostate cancer.

Morbid though it may seem I often reflect on these figures. It stops me thinking I'm unlucky or drfting into bouts of self pity. I also think more of those who are far less fortunate than me.

However I do feel sorry, in fact at times, almost guilty, for the effects my disease is having on my loved ones, particularly my wife. I certainly wouldn't cope as well if it was her that was ill.

I try to live as I did prior to this set back. I still drink too much. I still eat relatively unhealthy. I still get far too little sex.

I suppose I'm a bit more grumpy than I used to be, but that seems reasonable.

What I have found quite refreshing is that I no longer worry about things that don't need worrying about and treasure more the things that matter most.

Edited by member 18 Oct 2023 at 00:45 | Reason: Grammar

User

Posted 18 Oct 2023 at 06:28

Jules

User

Posted 18 Oct 2023 at 16:59

1. More emotional can easily tear up

2. Reluctant to do stuff I don't want to.

3. Take control of situations i.e do stuff that is a positive to take control. Before I would just accept stuff as is, but not be happy about it. I can't control what cancer might do in the future but there is plenty of stuff I can influence.

Edited by member 18 Oct 2023 at 17:19 | Reason: Not specified

User

Posted 18 Oct 2023 at 17:47

User

Posted 18 Oct 2023 at 21:21

Well done for being so positive - you're a bit of an inspiration for us all!

How has it changed me?

Didn't have any significant sex life before diagnosis thanks to OH menopause. Thanks to orchidectomy plus apalutamide it no longer worries me. No decernable libedo anymore, just a love for my wife.

No longer have boundless stamina, so lie ins and naps are a common part of life. I acknowledge I'm wasting time and my remaining life, but I haven't the energy or motivation to fill every moment.

I now exercise for my life rather than more for fun. Apalutamide can have issues for your circulatory system, so I push myself to complete at least 40km per week on the row erg. The hope being that this will keep things flowing.

I recognize symptoms of depression in myself (hardly surprising), so I'm determined to keep teaching as long as possible. The children keep you smiling!

I've lost my trust in the nhs. I'm fed up with the system that tries to follow standard protocols, rather than considering the impact on the life of the patient. I've had to do my own research to find out what might be best for me. When you talk about the alternatives with the consultants they usually agree they're probably better or no worse than standard protocols! You shouldn't need to fight!

I do try to push myself more to enjoy the moment. It often works, but at some point reality pops back into your head and you end up sitting quietly just watching the social situation around you.

Snap with the home improvements. Solar panels next week and lift and small extension early next year !

I now worry far more about the future. How will my wife cope when I'm gone? When will the apalutamide fail? How much pain, disability and loss of dignity will I suffer on my way out? I used to carry on, thinking I was invincible. Now every new pain or niggle sends me into an internal (protect the family) panic! I'm always quiet and on edge every two months before each consultant phone call.

That's probably enough!🤣

User

Posted 20 Oct 2023 at 09:10

Sitting there worrying about it yourself is not helpful.

Edited by member 20 Oct 2023 at 09:11 | Reason: Not specified

User

Posted 20 Oct 2023 at 20:02

I don't tend to talk about my worries to anyone. As you say it upsets them. Whilst I've been my normal stoic self, my wife and eldest son have already gone on happy pills because of me! I prefer to just try and deal with it - very old fashioned I suppose. However, we have at least got wills and powers of attorney sorted out, so I haven't completely put my head in the sand.

To be honest, talking about it makes me even more miserable so I try to avoid it.

Yes, motivation is the key. Unfortunately, other than hard targets such as going to school to work, or diaried commitments, everything else seems to slip. I need to find something with sufficient pull to get me up, a bit like your fishing.

User

Posted 20 Oct 2023 at 23:08

I've become a lot more intolerant with external issues, also prone to bursts of anger which never happened prior to diagnosis, but never with my grandchildren. My late father had an Irish temper which unfortunately I seem to have inherited late in life.

On the plus side having no libido I've managed to be more decisive, more productive, taken wider interests and managed to accept and adapt my changed existence.

Everyone's journey is different, we're all fighting our own battles against this s*** card we've been dealt.

Keep the faith brothers 👍

User

Posted 21 Oct 2023 at 18:49

Originally Posted by: Online Community Member

I don't tend to talk about my worries to anyone. As you say it upsets them.

I feel for you - it's tough but you might be surprised by their resilience after the tears. I know that we always try and protect those close to us but sometimes you have to break down that barrier and open the door.

Maybe start by asking them to read this thread - sometime starting things by writing them down can help.

However you deal with it, be strong and positive - best of luck!

User

Posted 21 Oct 2023 at 22:55

Its good that your determined to keep teaching, although that in itself must make you tired.

All the best and try and stay strong and positive, even though it might be hard at times.

Derek

User

Posted 22 Oct 2023 at 00:21

Find a local support group. I have a couple of new best friends I would never have met otherwise. We can offload onto each other since we all have prostate cancer, without worrying that we'll scare off our other friends who haven't been through it and would struggle with how to react. In the local support group, we all talk about the stuff men traditionally don't, absolutely no holes barred, just like here.

I am more careful talking with my non prostate cancer friends. I think it is easy to scare some people away, because they don't know what to say, and are worried they may quickly get out of their depth in trying to support you.

User

Posted 05 Jan 2024 at 15:52

How has it changed me?

I'm probably not the best persons to ask but *I* think *not much*. I know I'm going to die one day, but I'm not afraid of dyeing (although I'd rather not). I am afraid of leaving my family behind (youngest is 11).

Been ol Zoladex for 2 months and awaiting RT. I still eat too much, still drink too much, but no weight gain (or loss), at least not yet. Still a couch potato.

As an Airline Pilot I can't work. From diagnosis Medical is immediately suspended and so I'm grounded until post treatment is reviewed by the CAA and found satisfactory. I have way too much time to think now and in itself has been a problem at times.

Decided not to tell the children because I think the 11 year-old would freak out. Might be wrong, but I'm not taking any chances, and even if i am wrong there's no benefit for them to know. In fact, haven't told anyone in case of a leak back to the kids. They think I've taken 1/2 paid winter leave from the airline. Come 1st April, when I've told them I'm due back, if I'm not back, we'll have to think of something else. I'm hopeful of getting through treatment without them knowing. But this whole cover-up has been quite stressful.

From my through-the-roof PSA result (71) until the battery of tests were done and an explanation of exactly what I have from the medics was about 6 weeks. It was, without doubt, the worst 6 weeks of my life. I couldn't think straight, sometimes I couldn't think at all. Wouldn't wish what I was going through then on my worst enemy. But I'm ok now. Back to normal.

I'm generally a happy and positive person and now that I have the diagnosis, the medical pathway, and more knowledge, I think i still am.

These forums have helped me massively. The Experience and knowledge here is just staggering!

Thank you all.

User

Posted 29 Jan 2025 at 06:35

For me it's the "one day in the future I will not be here" that has clanged around my head.

Times past, I would feel that life goes on forever, PCa has suddenly taught me that it doesn't and wasted time is just squandering what we have. Will I die tomorrow, no, chances are I will be around for 10+ yrs, a bit broken but still around. I'm thankful for that.

Ive a mountain of things that need to be done around the house, previously put off but now seem more urgent.

I'm previously not a fitness guru nor too bothered what I ate. Not now, I'm out most days walking around and taking in nature's seasonal changes. I cook everything from scratch. No more ordering in food. I also treasure my time with friends and family. I was only diagnosed a few weeks ago but the way my regular PSA was going, the MRI and then being called for biopsies, I knew this was on the cards.

Going through the life changing decisions now, surgery or RT HT decision is hell. I just want someone to say it will be fine but no one will.

My job is very flexible with time and I work from home so surgery should be relatively easy to get through from a practical point of view. I've found that currently I am more productive and more conscious of what my colleagues are going through.

I feel the need to make my mark, to write perhaps or do more creative things, is that common?

User

Posted 29 Jan 2025 at 08:02

I now spend far too much time on here. 🙂

Edited by member 29 Jan 2025 at 08:09 | Reason: Typo

User

Posted 29 Jan 2025 at 08:20

Oh, and I also seem to have developed a bit of a F**k it attitude to most things in life. It certainly puts things in perspective 😬

User

Posted 29 Jan 2025 at 15:22

Hello chaps.

Interesting thoughts on this thread ! I can feel a ramble coming on…

One thing is I have learnt a hell of a lot about myself and why i am who i am. The counselling is amazing and i would advise anyone that it can only help. 🤪

I did say i might end up rambling on, and i have , so I’d better finish now.

Take care chaps, hope I haven’t put a cloud over this interesting thread…

Phil

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