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Coping with life's difficulties

Coping with life's difficulties

following on from https://lifeline.saneforums.org/t5/Our-stories/My-Place/m-p/1622791/highlight/true#M243373

@Till23

My way of handling things has usually been to just go into zombie mode. I completely withdraw and just lose motivation to do anything. I did that for a week or say at the start of last year after finding out I had become resistant to the first hormone therapy. I was told i would be on it for 3 years, go off it... monitor the PSA... if it started going up too much, go back on it for a while and repeat. It seemed like a good deal to me at the time if that was all i had to deal with. I only made it to the 2nd PSA test in late December 2023 to get the bad news, so i never got close to the 3 years. Zombie mode hit and it took my months to really start to get my head together again. I think it was May that I found here and joined.

I have heard that a lot of CSA survivors do turn to drugs and alcohol and the damage that it does to their lives. So i think its a lot of credit to you that you didn't go down such a destructive route. But even so it's hard to imagine who difficult it must have been for you, even to just to trust anyone.


I have come up with so many reasons why people can just sort of disappear when someone they know gets cancer. You listed some of the man ones but i came up with quite a few. In the end I decided I didn't care what their reasons were. If they weren't going to be there for me, I didn't want them around. I wasn't going to pretend and people please anymore, thinking I had to people what people wanted, always be the happy, funny person so they would want me around which I had done for most of my life. Realising that had got me nowhere but a handful of people who disappeared as soon as i really needed them after never asking anything from them, i just decided "no more". I think that was probably the main thought that made me look for somewhere to reach out and brought me here. I had decided that if i didn't want these unsupportive people around, then maybe I could find people who would support me. I was also a couple of months into the planning for the cancer support group i was working on which had really got me motivated to get back into life again.

I was lucky I guess when I had my 8 weeks of radiation. I didn't have work and my partner was working from home a lot so she would just drop me off, i'd whizz in to get done and she would come pick me up. The were upgrading one of the 2 machines they had for the first 6 weeks i was there so they were done to one machine. To make up for it they ran until 9pm, so getting sessions later in the day was fairly easy.


It was a bit annoying because when i went it for the planning session and the baseline image they take, they suddenly ask me once i was laying there was it okay if the give me three little tattooed dots so they could align me in the same position for all the sessions. What was I going to say? So i have tattoos now even though i've looked but i cant find them anymore. So it's not very impressive if someone asks to see my tats. ‌‌ The annoying bit is the new machine didn't need the tattoos! But in hindsight, I'm kind of glad i did so I can say i have 3 tattoos but i'm not showing you.


In the past year I have joined cancer support groups, adoptee support groups and MH support groups. And one thing I've heard time and time again from new people joining is the first think I thought... that I thought these feelings were just me and/or it so great to talk to people who understand what it's like. It really is nice to be able to talk to someone and not spend most of the conversation trying to explain what it like. Especially when some of it you don't even know how to really explain. Rather just talk to someone and you both know the other person just gets it.


That's the excuse they generally use. That they're just concerned about me and that it might be too much. The past one i tried, the one that was with the chemo patients, I go to go there and have a tour and a chat. I was very upfront about where I was in my treatments and that it was always going to be ongoing. That I had done all of these support things, including starting the support group and this is what helped me the most and drove me. She seemed very impressed and said she needed to speak to head office and organize the paperwork and i would be able to start in about 3 weeks. I got an email a week later saying she had talked to head office and they decided to put a pause on my application and that i was welcome to come back in 6 months when my treatment was finished. Like I said, I was very clear about where I was treatment was, and they are a cancer treatment centre so they know my situation. It just felt like a don't call us, we'll call you. And it was just an email. That was the last one i tried as I just could keep doing it.

I have found some volunteer opportunities since then. A member of a steering committee at the local hospital for a nationwide register/database of prostate cancer patients and their outcomes over time. Various studies, workshops, and research projects. All of them are due to me being a "consumer" but they all do seem to value my input from a patients point of view on a multitude of areas, so any little thing i can do and find another little positive or two from my situation.


It must be so rewarding volunteering and helping out homeless people and others really struggling financially. It's so great that they have you there to treat them with some dignity and talk to them and understand them. I'm sure it means the world to them to be treated like a person and not feel like they're there being looked down upon or being judged. As someone who had spent most of their lives finding it near impossible to ask for help, I can't imagine how hard it must be to have to ask for something so simple like food. The main solution with homeless people seems to be just get them out of sight in a lot of places. So anything, or anyone that makes them feel like the have some dignity and respect is so important. If my parents both died when i was in my 20s for example. The house would have needed to be sold and the proceeds divided between us. No because then i found it so hard to find a job because of my own issues as soon as they money run out from paying rent and all the other expenses of living somewhere by myself, I could so easily of become homeless myself. It only takes a couple of things to go wrong at the wrong time for anyone. But unfortunately it does seem to be so much harder for people dealing with traumas and just trying to do their best to cope and get through life. Some of us can hide it better than others and some people have more to deal with but it can be so hard and it's nice to get a little understanding and compassion. It goes such a long way when you can find it. Those childhood traumas stick with you! It becomes the way your brain is wired and it's so hard to change. I honestly don't think you ever do get rid of it, you can just learn to find ways to work around it and get some wins against it. But it takes a lot of time, luck and help.


A lot of people are surprise at my social issues, especially here i think because it's all online. I have time to think about responses, edit them, reword them, change them. It takes me a while. In person I don't have that luxury and i think i freeze. While I do admit i've become better at it, all that anxiety, self-doubt, and low self-esteem issues are still there. I think I've always been good at faking it, but in person it's very had to hide and i think it's much more obvious that i'm not that comfortable around people. Although i think a lot of people may see it as other things. Like maybe I don't care, or i'm disinterested, of maybe even arrogance because I keep to myself. If someone starts a conversation with me now, i think i'm a lot better and more comfortable doing that now. But stick me in a room with someone else and I will sit there in awkward silence longer than anyone else. I will never start the conversation. These days it's not even really because I don't know what to say or think i will embarrass myself like i would have in the past. I think now it's just more of those doubts still say "Don't talk to them, they don't want to talk to you. If they did they would have said something by now." I know it's wrong in most cases and most times the person would be very polite and have a conversation, but those doubts are strong and still have a lot of power of the more rational side of my brain.

108 replies

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In response to: Coping with life's difficulties

Re: Coping with life's difficulties

Hi @MJG017,, I hope you are well.. It's been a really long time,, I am sorry for my very late response to your last post.. As I said I was away for a bit over Christmas and New Year and I have been away again trying to clean up Dad's property,, there is a lot of work to do..

How was your trip away?

I think I read somewhere that you are continuing your learning with mental health support, I can't remember the name of the course. That sounds positive

Any changes with your cancer situation? I have been thinking a lot lately about people living with metastatic disease, I think mainly because I now know of another couple of other people in this situation.. (Also I am doing some awareness raising for a charity for breast and ovarian cancer in May). I think I have some idea, but I think you don't really know until you are in that situation.. I am having some scans in about a month, I was reminded because the specialist had to be rebooked because they are away at my appointment time. I do not get scanxiety which is good because now it's about a month between my scans and the specialist appointment.

I am hardly on the forums these days and I don't see you on really at all now.

Anyhow I hope you are as well as possible.

In response to: Re: Coping with life's difficulties

Re: Coping with life's difficulties

Hi @Till23

Great to hear from you again. I'm not on here much any more, but I still keep an eye on emails in case anyone tags me. The trip to WA was great and it was an awesome couple of weeks. I did manage, with some tweaks, to squeeze it in between appointments for the clinical trial I'm on. Speak of which, the first 2 month cycle was a big success. My PSA was 6.66 at the start of the trial, and 3.3 at the end of the first cycle. I have the appointment to get the result for the end of my 2nd cycle next week. The PSA did rise slightly to 3.9 at the end of the 1st month of the 2nd cycle... but that's the month i'm off the tablets and have the testosterone shot. So a PSA rise in expected. I was just lucky with the first cycle that the PSA dropped pretty much all throughout the 2 months until it raised slightly during the last 2 weeks. So a bit anxious obviously about the result next week, mostly because none of these things have kept my PSA under control for very long, so mentally I now try to be cautiously is my optimism. Having said all that the PSA was doubling about every 6 or 7 weeks before so as long it's it's slower than that while in the trial, I'm happy.

I started studying counselling at Uni in February. It was a very last minute thing. A few people had suggested it late last year and it was in my mind, but I wasn't seriously thinking about it. In Feb, I saw a Facebook ad for counselling and entered my contact details to get an info pack. I thought I'd have a read and maybe think about it. Two hours later I got a phone call from per-admissions and at the end of the call I was gathering documents to enrol. So it was a really unexpected turn for this year. I'm doing the Diploma in Counselling. This way I finish the diploma (which is the first year of the Bachelor), I become an alumni and get 25% of any further study. So the next 2 years to complete the Bachelor, then even Masters, would cost less. Well, it would keep that student debt lower anyway. Knowing my luck, some miracle cure for advanced prostate cancer will come out and I'll have to get a job and pay this damn thing back! 😂 I also found out that i'm a co-author of a research paper that is going to be published in a Cancer Care related journal. So that's another first for me.

Hopefully your scans are more good news for you. Its interesting what you said about not really knowing about living with metastatic disease until you're in that situation. I think it's the same with any cancer. People have asked me about it in the past, and I say i'm not sure anyone can understand because it's nothing like what I ever though it would be like. I think of it like that idea of jumping in front of a bullet to save someone else. I feel like we all have an idea of what we'd do, but only in the moment do we learn the truth about ourselves. It can be a powerful thing to discover about ourselves. Dealing with anything life-threatening teaches us so much and it can take you to places and achieve things you never thought possible. I mean... me... counselling people?! What a crazy world we live in! 😁

I would love to do more awareness raising. I just don't know how to do more it, the media are only (slightly) interested in prostate cancer testing in September. And even then, every year one or two opportunities get bumped because of the footy herein Adelaide. I know a lot of cancer survivors just want to move on, and I can completely understand that. But the ones who devote time and energy from trying to raise awareness I give full credit and respect to. I think there's just a lot less interest in prostate cancer. I don't know, it just feels that way. A guy I knew who worked for the PCFA, left last year to take a role with breast cancer. He was passionate about prostate cancer as well, because his father had had it. So not sure if his decision was based on wanting more opportunities to do more or something else. It just made me wonder when I heard the news.

Cleaning up at your dads house must be a lot of difficult work. It must bring up so many memories and feelings... some good, but also some difficult ones I assume. Not being that close to my parents, it's hard for me to imagine what it would be like. Have you had any more sporting events since we last caught up?

Anyway, I hope you are doing well and not over-working yourself.

In response to: Re: Coping with life's difficulties

Re: Coping with life's difficulties

Hi @MJG017,, it's great to hear from you and also to hear that you are okay,, even if you are quite busy with studying etc.. I'm glad you were able to fit your trip in and that it was great and you had an awesome couple of weeks..

I didn't realise you were in a trial.. The last time we chatted I thought there were no current trials for people at your stage of disease.. It sounds like whatever the trial intervention is, it seems to be having a good effect.. Your PSA is quite low, it seems to me to be in normal range.

It's great that you are in the degree program with options to keep going.

Also a published author, that's amazing! Is it to do with support for those with cancer?

I have the problem with my immune/inflammatory disease, it's quite rare, there is a range of symptoms and different progression of disease. My disease is active so it seems like it will be a chronic condition that I will die with or maybe die of, however it might become "dormant". People don't understand the impact, because I seem OK, I do sports etc. I don't really talk about it to anyone, it seems not worth it.

Prostate cancer gets a bit of air time here, but somehow breast cancer gets more and also more than ovarian or gynaecological cancers (all women only cancers). I think it's a bit unfair actually. I'm glad the McGrath nurses, who used to be just breast are now all cancer nurses.

Yes, Dad's property is a lot of work and does have the emotional side. It will be a loss when we sell it. It's a big property, he lived there a long time and towards the end was unable to look after it.

With sport I've got a national competition coming up and later in the year an international event and another big overseas event. (I will do both in one trip). I have upped my training and am going to gym as extra! So yes, I am busy!

I really hope the trial intervention works out well for you.

In response to: Re: Coping with life's difficulties

Re: Coping with life's difficulties

Hi @Till23

Sorry for taking a while to get back to you. With Uni and everything else going on I've just been so distracted. Any spare time I've had I've been paying games on my PC. I haven't don't much of that in quite a while and made a conscious effort to make more time doing things I enjoy so finally got back into a bit a gaming.

My oncologist at the time had told me there were no trials for anyone at my stage. I thought that seemed unlikely so did my own research. When I told him about it, he agreed that it was definitely worth trying. I actually got a phone call later that afternoon from the trial nurse. A bunch of screening tests and I began the first two-month cycle on the 16th December. So I just finished my second cycle. With a PSA of 6.67 when I started and it doubling about every 6 weeks, having a PSA of 3.9 halfway through the second cycle is obviously far better than what that 6.67 would be up to after 4 months!
The published article is (loosely) on sexual health for men with prostate cancer. Which is odd. I hadn't had any testosterone in me until December (start of the trial) so not it seems a very odd thing for me to be a co-author on! 😁 But there you go... it's a crazy world sometimes.

I know what you mean about living with a 'hidden' or 'invisible' chronic condition. If you do say what you have to someone, they just instantly assume it can't be too serious since you look just fine to them. You do get into a bit of a habit of just not mentioning it after a while.
I did a co-design workshop for the McGrath Foundation... must have been over a year ago now. They got a crapload of funding from the government to design an Australian model of cancer care. Hence the 'rebrand' to all cancer, not just breast. Speaking to some of the prostate nurses, there are fears that they might eventually be phased out in favour of McGrath Cancer nurses, but they did get a guarantee of no changes in that department for 3 years. Which was about the time this project would take to be fully implemented. So I can understand the prostate nurses concerns.
It must be challenging having a condition, not only because it being hard for people to see as I mentioned, but also because it's so rare! I know people with rare cancers can have a really difficult time, not just with specific support, but treatments as well. Hopefully you get a big break and yours does become dormant. Or at the least, stops progressing. I don't tend to think about the future maybe's and what-ifs anymore. I've found it far easier to just focus on today and enjoy it as much as I can. I found it was just far too easy to get in a downward spiral mentally getting stuck on thinking about what may or may not happen in the future. Easier said than done of course, but at some point you just realise you're wasting precious time stressing about it. I figure you can stress about it AND get the most out of life at the same time.
All the best with nationals coming up, and especially with the International comp as well. I would be so excited to be able to play something nationally, let alone internationally. A shame you can't share any details, but i'll be cheering you on whatever it is.



In response to: Coping with life's difficulties

Re: Coping with life's difficulties

Hey @MJG017 - are you still on the forums?

I hope you are going well.

I have pretty much left. I've been away for so long I can't work out how it works now.

I miss talking to some people such as yourself.

However, I found it less helpful after a while and actually a bit repetitive on many threads, so it seemed too time consuming for what I got out of it. Now I feel like investing energy into finding out how it works is not worth it. I'll keep my account and maybe drop in every few months.

I'm still doing my sport, which is taking up more time as I do more things, I still do my CSA related stuff for NSW Health at my local health area level. I do a couple of other things through U3A and I'm in a walking group. I occasionally do a bit of cancer advocacy/fundraising as well.

My mum's health is deteriorating, so I'll be doing more related to her.

I still really just have acquaintances and not friends, but I'm sorting reaching a level of acceptance with that.

I hope that things are going well with you and all your advocacy and MH stuff and that uni is going well.

In response to: Coping with life's difficulties

Re: Coping with life's difficulties

Hi @Till23

Maybe you should look into Adelaide hot chip lovers. I heard you really enjoy hand cut chips!

In response to: Coping with life's difficulties

Re: Coping with life's difficulties

@Dimity

I wish you luck for the future. This page is pretty interesting.

In response to: Coping with life's difficulties

Re: Coping with life's difficulties

Thanks @Oaktree I'd missed this tag, I'll have a look

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