Coping with life's difficulties

[MJG017]

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.

[Till23]

Thanks for making this thread @MJG017 

It feels better to have this new space than sort of intruding on Oaktree’s space 

[Till23]

I think zombie mode is a perfectly acceptable response to that news @MJG017 

From reading through various threads I think many people have been lucky to find the forums and I am definitely one of them. 
I do try to be careful about not spending too much time here, to ensure that I participate in “real world” things. I was on a lot when I could see HopeandLove was in need. However, I am going to try to back off a bit now I think to maybe a little bit more than when I got back on again in January of this year. I did join in 2023 but I didn’t engage very much at that time.

 I think people (well at least I) have to be careful about not taking on everybody else’s problems too much.
Trust is often a huge issue for CSA survivors and I have definitely had, and still do to some degree, have issues with trust. Another common scenario is recurring abuse. Many CSA survivors experience abuse after the initial abuse has finished because of poor self-esteem, conditioning etc. I have seen examples of this on these forums such as people having abusive relationships in adulthood, sometimes several times. I have avoided that because I have avoided relationships but of course that comes at the cost of loneliness, no children etc

I have also tried to keep upbeat in my cancers as sort of a people pleasing thing, such as not wanting to bring them down.

Sometimes when people found out I had depression they couldn’t believe it because I was always one of the “fun” people. I do that less now especially with people I know quite well. It is a funny sort of defence mechanism because perhaps if people had known sooner you could have got support earlier. On the other hand though, the may have walked away sooner.

You were so resilient to start the support group when you were feeling unwell yourself. That would have taken enormous strength and courage. You should be proud of your efforts and especially that it was successful.

How did you link up with people to invite to the group, did you “advertise” through your treatment centre? Or leverage off support groups for older people?

Sounds like the centre you went to was fairly small if they only had 2 machines for radio. I somehow thought you were in Adelaide.  Or maybe I’m confusing you with someone else.

Yes for my first radio I got two tatts for alignment. I knew I would get them before the planning session though. The second time they had the new laser alignment method but I said I’d have the tattoo anyhow because they could use one of the existing ones and now I have symmetrical tatts. I can still easily see mine but it’s not even 3 years since I had the first lot. One is over sternum (breastbone) so I would see it every day but I don’t really notice it anymore. I have scars from my surgeries which are bigger of course and so  much more noticeable to me, but apart from medical staff no one else has seen them.

Yes I agree having the similarities with other people really helps. I am supposed to be joining an online CSA survivor group and people say it really helps talking to people who “get it”.

 I have been helping a friend who was diagnosed with cancer just before Christmas and she has said to me and to a mutual friend who has told me that she has found it very helpful because you can just talk without explaining everything.

When I was being treated and I made the donation of the ceiling tiles I was asked to fill in a form to be part of a consumer group but I have not heard anything. I think maybe having cancer was one thing but having MH problems was a different kettle of fish. I think I will chase it once, but then forget about it. I’d like to help other people though because if you don’t already have a MH condition before you’re cancer diagnosis, there’s a good chance you’ll have at least a temporary MH condition at diagnosis and during treatment.

I try to think of the people at the drop-in centre as “there but for the grace of god go I” because it can so easily happen to anyone. I did stay in my car for a very short time once a long time ago. Especially these days with cost of living so high, more people are struggling. Older women are now the fastest growing group of homeless people.

Yes there’s no plenty of evidence that traumas no matter what they are change your brain and especially so if the trauma occurred in childhood (including teenage years).

Clearly you are able to start conversations as you would have needed to do that to start the support group especially when you were organising it. I think sometimes it’s easier though if you’ve got a definite topic. I definitely find that. I’m not good at small talk, but if there’s something to organise etc I am able to do that.

 I hope you have a good day today after being up in to the wee hours this morning 

[MJG017]

Hi @Till23 

I think you're 100% right about needing to be careful not to take on too much of other people's problems while dealing with you own.  I've had quite a few people warm me of the 'compassion fatigue' as I've gotten more involved with supporting people.  Especially with the cancer support as obviously it is a very personal issue for me as well.  i think it's just a very personal choice about knowing where to draw that line, or knowing when support others is getting to that point where it having too much of a detrimental affect on our own wellbeing.  So it's good that you seem to have a good idea of where you own personal line is.  I'm not sure i really have an idea of mine yet.  I did start putting my name forward for so many things last year and it did start to become overwhelming and I had to rethink a lot of things.  It feels like i've cut back on my activity here as well.  I tend to just stick to replying to things I think I have experience in and can offer the most effective support.  

I did used to reply to a broader range of posts, but it was taking a lot of time and I would love to keep doing it, but I know now that I do need to be better at prioritizing.  Especially now that I've started this study and that's a lot more time i need to try to fit in.  It's not like i'm slammed for time every day all day, but I know now, especially after supporting HopeandLove that I do need some time away to just care for myself.  That became pretty clear to me.

I don't really have much experience in talking to people who have been victims to CSA. I've always thought of it as something you just don't ask people about when you find out they've been through it.  It's obviously a deeply personal thing, but as i was writing this the thought i've wondered about people having a similar thought on not wanting to talk to me, than there was no way I would want to talk about it.  Two very different things i know, but it's probably a factor of why we find it so hard to ask for help when we're struggling mentally.

I can see how CSA survivors would be more vulnerable to more abuse.  I would assume there more than a few abusers about there who know the sort of people to look for and find themselves in abusive relationships.  I can see how easy a trap it could be for survivors can fall into.  I know for myself i would like anyone who seemed to like me, or even showed a bit of interest in me because of my loneliness and poor self esteem.  For me that might mean i would fix their PC and never hear back until they needed help again.  But for a woman, i assume there are a lot of men who see that and see it as someone they can control and abuse, whether it be emotionally, physically, or worse.

I've always felt a lot of pressure to stay upbeat while dealing with the cancer.  You really don't want to be that person where people think "Oh no it's them again!  They're always such a downer.".  Then there's people who do support me, especially my partner where I feel like i've already put her through so much, it's not too much to ask to try and maintain a smile on my face for her and pretend i'm doing better than i am.  I think about this a lot now and I do wonder if i'm just making excuses to keep the old bad habits of never asking for help.  Lately i think a lot about what she is going to have to deal with when i'm gone and how little support around her.  And I can't help but feel selfish and that maybe I should have stayed alone and not put her through any of this.  The only answer I have is to not appear to be struggling too much in front of her.  I know she's is aware of how much on my bad days, but if i can minimize that when I have the strength to put that 'happy face' on the it doesn't seem too much for me to do.  Again, maybe it's just those old habits.

At the start, in the planning stages of the support group it was flyers to local pathology places (every diagnosis starts with a PSA blood test), urology places, hospitals etc.  But really it was reaching out to the specialist prostate nurses.  Once they knew, they told any younger guy they had about our group.  They were all incredibly supportive.  I got to do a few media sports raising awareness/fundraising etc and got a few members who say or heard that.  Last week i took part in a workshop for a paper a research was working on and I got to speak with the nursing director of the PCFA and we talked a bit about the group.  She said all the PCFA nurses who work for the telenurse service (where people can ring to talk to a prostate nurse for support/advice) across Australia know about us and when they talk to someone who is under 60 they will ask them if they Live in Adelaide.  If they do they tell them about us.  Coincidentally, on saturday I was talking to one of our members who just got back home from having his surgery and he mentioned that he had originally heard about us from calling the hotline when he was first diagnosed late last year.  So really, a lot of the success in getting members has been down to the support from the prostate nurses.  Even interstate apparently.  I guess when you get you face stuck on enough campaigns and articles, you get known in those circles.  I wont lie, it is nice when someone recognizes you, especially a professional in that field.

So yes, i am in Adelaide.  How many machines were there were you had radio.  I sort of thought 2 was pretty standard considering how large each room is to fit one.  There are quite a few places her who do it but maybe I just assumed having never really left Adelaide very much.  Some people seemed surprised we have electricity over here. 😂

I hope that you find the CSA survivor group helpful and find it and find it a safe place eto be able to talk to other survivors.  I know from my own experience and speaking to quite a few people who just joined up to various groups, that so many of the were surprised at how helpful it was that everyone just seemed to understand so well things they were dealing with.  So be it cancer, adoptees, or MH groups.  So I hope this one is the same for you.

The workshop i attended last week one of the things i said (which was backed up by the other two men there as 'lived experience with prostate cancer' backed up was that when you're told you have cancer you're flooded with information and you know the treatment options and made aware of all the potential side effects.  But no one tells you about the MH side of it, and how hard it is going to be.  You sort of just find that out for yourself.  I think a lot of the medical professionals can be surprised when you say it.  Some of them seem to have an idea that you're so focused on trying to beat the cancer that you don't have time to be anxious or depressed.  And again, people in groups who admit that they are struggling mentally seem surprised when we tell them that we have all dealt with that was well.

The housing situation at the moment is just insane!  We were so lucky we bought our house when we did back in 2017 before it really went off a cliff.  It's just getting so much hard for people.  People who can afford it are struggling to find a rental, so how does someone who is limited financially survive without friends or family to support them?!  It is so easy to fall through the many cracks when there's no one around you to notice.  It so sad that as a society we just seem to pretend these people don't exist... out of mind out of sight. 

I can start a conversation, if i really have to.  And yes, as a support group leader and organiser I've had to do it far more than I would like.  But I still struggle to do it and I always feel incredibly awkward doing it.  It just feels unnatural to me and like every eye in the room is on me.  Of course this is someone who had to a 45 second talk during a weather cross on TV to promote a fundraiser in October last year.  I still have no idea how I did that!  It was easier because I was just answering a question to start me off, but still...  It's moment like that I sit there afterwards and think "who is this person and how is he controlling my body?!"  It is definitely easier if you have something that you need to speak to someone about.  But if i'm in a waiting room and there's someone sitting next to me, then i'm strictly sticking to the rule of "Dont speak unless spoken to."

Definitely an early nigh for me tonight.  I have to be out at the other side of the city tomorrow morning so no late night tonight.  How much actual sleep there is will be another question.  I hope you had a good day as well.

[Till23]

Hi @MJG017 I was away a bit longer than I thought I would be.

 I had dinner with some ex-work colleagues last night, which I enjoyed.

Today I just “had lunch” with Rosie Batty. It was a webinar run by Flourish that I found out about somehow, can’t remember how.

It was an amazing story of resilience and bravery. However, although she did not spend too much time on it, she did talk about her struggles with MH and other things. It was very inspiring. In case you have forgotten she was the woman who’s son was killed by his father and she became Australian of the Year in 2015 for her family violence work.

 I also find you inspiring for your support work for younger men with prostate cancer.

I think there is definitely something in the lived experience that is really helpful for other people.

However, compassion fatigue is real, and Rosie Batty eluded to that in her talk and said she had wound back her advocacy and fundraising type work.

What study are you doing?

Don’t worry you would have talked to someone with CSA in their background, it’s more common than you think, although there is a range of activities within the crime as well as a range of ways it is carried out and the responses of victim-survivors.

Yeah, I agree, I think people find it hard to know what to say or do when faced with certain issues, so they think they are better off just avoiding it. So then it lands on the person with the issue to have to reach out, which is, as you know, very difficult if not almost impossible.

 I call it “wearing the mask” when I smile and do things and talk to people like everything is ok, when I’m really struggling inside. I think people don’t want to be “brought down” by other people. Of course you never know what load other people are already carrying. Or sometimes I actually think well, they have kids and are trying to work and are doing something else etc, they don’t want to be worrying about me. So I try, wherever I can, to be upbeat.

However, your partner is aware of the situation and she’s still there, so I think that tells you she’s willing to stand by you. I think that says a lot about you and her. It’s good if you are able to talk about those worries though and maybe do a bit of planning which could be very helpful. 
There were 8 radiotherapy machines at the hospital I had my radio. So I bought a lot of ceiling tiles 🤣.

Actually I have visited Adelaide a few times for work, especially when I lived in outback NSW, because Adelaide can be the closest capital city as Sydney is a long way away on the coast.

 I was in Adelaide in 2023 for my sport when they had the Australian Masters Games there and I visited a friend in Adelaide hills. So I know the “big country town” messaging about Adelaide and I also know about the Haigh Chocolate shop. 😁

I agree that the amount of information you get when you’re first diagnosed is pretty overwhelming and there’s decisions to make in a short time frame. I was lucky that my surgeon referred me to the McGrath breast cancer nurses and then my hospital had a psycho-oncology department and I was referred there. So I had that professional assistance at the time of radio.

 I think the difference between our cancers is that I have a cancer that is overwhelming diagnosed in women, whereas you have a cancer that is only diagnosed in men. Of course there is the narrative that women are soft and teary, and need someone to help them with everything. Whereas for men the narrative is that they are strong and tough and don’t need any help. So for me, no one was surprised about the MH effects of breast cancer, whereas for prostate cancer probably as you say no one talks about it. Plus depending on treatment for prostate cancer there is the risk of impotence so not many men want to be talking about that. The surgery for prostate is often done so there’s no visible scarring whereas for women who’ve had a breast removed it can be obvious to lots of people but it’s definitely visible to a partner and even if it’s just a little bit of breast taken there is obvious scarring and if you’ve had lymph nodes removed people can sometimes see that if you are wearing a top that is low cut around arms like a singlet top. So I think because it can be obvious to people, medical people are not surprised about the MH effects of breast cancer. Hopefully you will change the narrative of MH effects of prostate cancer in your work.

I think housing insecurity is going to be a very big problem pretty quickly. Not for those who

own multiple properties and are making a fortune from others though, like many politicians. So it’s going to be interesting to see what happens, because we are getting to the situation where wealth and power are being concentrated into a smaller number of hands and the gap between rich and poor is widening rapidly. A lot more people will fall through the gaps and with our increasingly virtual society, people just won’t notice, because every day connections are just not there. You don’t even need to go to a shop to get milk anymore, so the shopkeepers don’t see you etc etc

I used to absolutely hate speaking in a group or in something public, I am better at it now though but I still would rather not do it.

 I hope you’ve had a good couple of days and continue to do so.

[MJG017]

@Till23

I thought the name Rosie Batty sounded familiar. She must be an incredible person to do everything she has done. I guess something like she went through can really focus the right person to devote themselves to that cause and try to do what they can to make sure as many people as possible never have to go through anything similar.

I'm doing a Cert IV Mental Health - Peer Work. I'm doing the first unit this term. All the fun and interesting stuff. WHS, legal and ethical responsibilities. It's interesting so far though and i'm learning a lot. One of the assignments was based on a scenario based on a woman experiencing domestic violence and I am her peer support worker. So it's given me a good look into the situation and made me think a lot about it. Also researching the support services here in Adelaide. Not that it's anything like my own lived experience, but it has given me a lot to think about and had me rethink a lot of things about providing peer support. With cancer or adoptees or MH issues i've experienced, it's so much easier. I can use my own experience. But when you don't have that, you really have to go 'back to basics' so to speak and just try to understand, empathize, and think in different ways with the support.

I guess I probably have talked to people who have experienced it and not known. It does seem to be frustratingly and depressingly far too common. I wonder if it has always been there like it seems to be now, or we just hear more about it now. It can make you feel ashamed to be a male at times.

I remember one of the first times I let 'my mask slip' as you might say. I was in my mid 20s i guess. I had a small group of friends I hung out with and played sport with. I was working at Myer at the time. It was a Saturday and they had said they were going to the local pub for a drink and I told them I was working but I could be there after my shift ended so I could be there about 1pm.  Like i said it wasn't a large group, 2 were friends I knew well, and 2 were more friends of theirs that i knew. They had had a few drinks by the time i got there and were all quite 'happy'. We would take jabs at each other joking around like we did. It was normal an no one took it as anything more. But i just remember it just all seemed to be directed at me alone on this occasion and it felt relentless, which just annoyed me. I didn't say anything... i kept the mask on, but maybe it slipped slightly as I didn't really join in. I just sat there quietly and didn't say anything. After a while they said they were going out to a club. Now I hated clubs and I only ever went once. So they knew I never went to them. But it made things weird for months. I stopped hearing from them. But we still played indoor cricket every week. I remember going to the games and there was just this awkward silence between me and the 2 who were at the pub. It took like 6 months before things started to feel like it was back to normal. I still don't really know what happened or why they seemed so offended. The only real difference is I sat there at the pub for an hour and wasn't cracking jokes and laughing as I had learnt as a kid was the way you have people like you. I just remember thinking that whole time through those awkward silences that I must never do that again! I still struggle not to do it. I can be having the worst day, feeling about as low as i can get... i find myself having to talk to someone and it's like a switch flicks in my head. The jokes and laughs start. Once it's over and they're gone, that switch flicks back. I've never really understood how i do it. It's not something that I have to try and do, it just happens.

It's just exhausting trying to be upbeat and happy for people all of the time. I think people see it as just what you do when you're around friends. That's fine I guess, but what they don't get is they can go to close friends or family and talk about what's bothering them and get that support. When you're alone and don't have people like that in your life... when do you get to take that mask off?  You don't!  Or when you do, it's only when you're alone. It baffles and frustrates me that people who don't live like that don't seem to care or understand this.  After all that effort of always trying to make everyone else happy and comfortable and have fun around you, you are rewarded by none of these friendships seem to ever get more than surface deep. Rant over!

If the radio machine rooms are each a similar size to the ones I was in, that is a lot of tiles! It must be nice to know those tiles are there because of you, but at the same time you'd be very happy to never see them again I assume.

Yes, and trip to Adelaide surely means a visit to Haigh's. Charlesworth's Nuts is another worth checking out.

I didn't get to chat to anyone for my initial decision of surgery vs radio.  I sort of felt that if the urologist is asking me what treatment to go for that I must be in big trouble!  It was all so quick because of the aggressiveness they found.  Mid December, surgery... start of February starting ADT and radio!  The hospital had a free psycho-oncology service that I eventually agreed to try.  It was the first time i had ever seen someone like that, but i did find it helpful... until it ended poorly. They used the students in their final placements so maybe that didn't help.  I don't think any of them really knew what to say.  "Don't assume the worst" was the main one I heard.  This was started about 3 months after my radio had finished though.

It's definitely a big stigma to fight with prostate cancer. Even though there's a lot of it with it being the most diagnosed cancer, it's all guys and so maybe that's why you dont really hear much about it. There is a lot of resistance to get help. But its a bit different for younger guys to find that support. Only about 15% of prostate cancer diagnoses are men under 60. So the main support groups aren't really that helpful, if they even talk about prostate cancer at all. It was the main reason I started our group. I don't know of any others like it running Australia.  Maybe the main groups interstate do focus on the support more and have a range of ages.

The gender differences are sort of evened out though. Most men with PC go on to ADT so have no testosterone. So we also become 'soft and teary' and have years of hot flushes. Don't tell anyone though, we like to keep all of that to ourselves. ‌‌ It's hard to maintain than 'manly' air when we get manboobs, can't sleep because we're too hot with the covers on and too cold with them off, cry over anything, and nothing downstairs works... but there's leaks. 😁  It certainly changes your perspectives. Maybe that's why my partner has stayed. I think she likes this new, softer more emotional me.

The surgery to remove the prostate is preferred to be done robotically, but in my case we only have one machine in Adelaide and even with my urgency it was still going to be a 3 month wait. They said that was too long so I had it done old school. So a nice big scar from my navel straight down. But unless I somehow magically develop a 6-pack and ripped abs and want to show them off, it's very easy to hide. Even still, it would be no where near as the feeling of something to hide as it must be for women with surgery from breast cancer.

They've done studies that have shown the MH affects for prostate cancer tends to be slightly worse for the partners than for the men. While it is still hard for men, i think there is the extra strain on the partners as obviously it stressful for them as well, but there tend to be issues with the fact that the ADT also reduces the sex drive to basically zero! So if the communication isn't really good partners can start to feel that they're not seen as attractive anymore. So they found overall the partners MH decline is on average slightly worse.

I completely agree with you points, but i think the mainstream media has a lot to do with the ever widening wealth divide as well. It's so focused on more sensationalist things that stories than are important to keep governments accountable for their decisions and spin are largely ignored, unless it already has a large public outcry. So things that need to be done to help the vulnerable are just tokenistic efforts a lot of the time that achieve nothing.

[tyme]

Thanks for sharing @MJG017 . What an eye opener!

[Till23]

Yes it was an incredible talk that she gave @MJG017 

I am also thinking of doing the Peer Support Worker certificate.

It’s very relevant for what you are doing so that’s excellent.

 I am wondering how expensive it is to do, I don’t know if there’s a difference between SA and NSW.

Yes that’s an interesting point isn’t it, that you would probably be better at supporting people where you had some similarities. I would probably be at a bit of a loss for adoptees, foster children, people with drug and alcohol addictions etc as I don’t have experience with those things.

Yes the rate of CSA is pretty steady. In the 70s when it happened to me, it just wasn’t talked about, there were no TV ads or stories in papers on radio or TV The attitude was that it didn’t happen and if it did it was the victims fault. Had I disclosed back then, I may well have ended up in an institution, which is how MH issues were “treated” then.

So everyone stayed silent. But it was still happening. The stats are 1 in 4 females will be sexually assaulted before age 18 and 1 in 9 boys.

97% of perpetrators are male and 3% women but it’s likely to be more women than that and there is estimates that it’s 90:10. Perpetrators are different people, so I don’t blame all males. However, there is are societal issues which is about to get worse with Trump as President. 

Yes, I have also been in that place, where I refuse to join in when people are making jokes at someone else’s expense. And people (except the victim) make fun at you for not joining in. It’s a terrible situation, but I don’t care to not be part of that crowd I’d rather be alone than join in with that.

Here’s another similarity I used to play indoor cricket in the 1990s!

Yes, I agree the only time I don’t have my mask on is when I’m at home alone, so only my dogs have seen me like that. Even with my family I have a mask on. Hopefully you can have your mask off with your partner.

It’s exhausting to always wear the mask, but I’m so used to it now, it will be hard to take off with people, if I ever get to that stage.

The tiles in the radio rooms don’t take up the whole ceiling, they are strategically placed to be in the patient’s line of sight. So just to each side of looking straight up. They won’t be good for all patients because people with head and neck cancer have the machine close to their eyes of course and even with breast the machine is often in the way. But I got them for 9 rooms because I also got a set for the planning room. Yes I hope I don’t need to use them! Although there’s always a risk because I had two different cancers within a year of each other.

It’s interesting you only had psych-Onc  after you finished radio. I am sorry it ended badly. My psych-Onc was the senior one, so very experienced and good. Even with that I very nearly didn’t make it because I was only sleeping 2 hrs a night because the rest of the night was filled with nightmares and flashbacks to the CSA. For breast ca you get a harness made and they put your hands above your head and strap them, so you don’t move, and you lie there half- naked so it very much replicated some of my CSA and as I was having daily radio, I had to try and deal with it daily, hence the nightmares etc. It was very intense so I nearly gave up and ended myself.

Yes of course all women go through menopause so same as ADT just that it’s oestrogen and it’s all women not just those with a cancer, so it’s more talked about. But all women have hot flushes, mood changes, decreased libido and sexual dysfunction to varying extents. Some women have medical menopause because they have ovaries removed in ovarian cancer or oestrogen deprivation by treatment sometimes the same way as they do it for men sometimes by blocking oestrogen receptors. Most women after treatment by surgery and radio go on some kind of oestrogen deprivation treatment (as I am) as a preventative for up to 10 years or for life because they have metastatic disease. So they go through an even greater deprivation. Also the testosterone to oestrogen ratio changes and so can get hair growth in places you don’t want and balding heads. So there’s not that much difference actually between the genders. It’s just that males are not used to the menopause all women go through and that thinking that they have to be “manly”, which I agree is a societal thing as well. It’s the same problem with partners of women who’ve had breast cancer treatment, or ovarian or gynaecological cancer, they have low libido, can’t lubricate, have shrinkage so sex can be actually painful, so there’s problems in that department for both partners. 
I also have pretty good second hand knowledge of prostate cancer treatment side effects because my dad went through the early version of ADT when he got prostate cancer. I also worked in health care.

Yeah, I agree the media and especially now social media with it’s ridiculous unattainable “standards” have a lot to answer for people are spending money on superficial things and not “real” things. The amount of people with extensive tattoos, or the latest haircut or clothes or shoes or whatever that say they can’t afford the rent or whatever is pretty amazing to me. But I suppose they feel the pressure to conform to something that is just unattainable.

Well I’m really enjoying chatting with you and we’re covering some great topics, but I’ve got to do my volunteer role tomorrow (which is now today).

 I hope chatting on the forums is good for you and I hope you are looking after yourself because I see you on quite a lot of chats supporting other people and as @tyme says you can’t pour from an empty cup.

[MJG017]

@Till23 

There's pretty generous state government subsidies here in SA.  I think the course cost was $1200, but $500 with concession with the subsidies.

Wow!  1 in 4?!  1 in anything is terrible, but it's shocking that it's that high!  I mean how does that even happen?!  I don't know what's being done to fix it, but clearly no where near enough!

Indoor cricket was all the range back then wasn't it?  It certainly was here in Adelaide there were quite a lot of ICA's.  We used to play 3 or 4 nights a week.  Sometimes you'd fill in and end up playing 2 or 3 games a night sometimes.  I always really enjoyed it.  I remember when we started we were the team of young guys playing the old men. But the time we stopped, we were than team of old men.  Those last few years I completely understood why the old guys always seemed so smug when they beat us in the beginning.  It's a very nice feeling. 😁

Its amazing how often i will just take the mask off at home and talk to one of my cats.  Usually the same one. Because the oldest one will be sitting out the back area, and the youngest, who is only about 4months old is never stationary long enough to have a conversation with. 

I've heard of a few people who have had different cancers in quick succession.  They say they're unrelated but the odds of that seem very high.  You'd think there would be some link there.  But with all the ultra-processed food and the chemicals in everything it's probable not that surprising these days.  Hopefully 2 is your final score.

One of the things i noticed when I first got diagnoses, is the nurses seemed to always have a slightly 'satisfied' look when they would tell me about certain side effects of ADT.  There is definitely that pressure to stay 'manly' at all times through treatments, but the guys who are only on ADT for a set time definitely can't wait to get off it... obviously... and get that testosterone back.  But for those of us that will never be off it, there is an acceptance of this is the way things are now.  For speaking to a few of them, it does seem that in a lot of cases it makes them happier in life.  Priorities change and there just seems to be calmer, gentler outlook on life.  I think the partners tend to prefer it as well.  Maybe they just say that to make us feel better, but i think it makes sense.  So i guess for women on their own hormone therapy, there's not the same possible positive affects that some men find.

That harness sounds horrible, even without the CSA triggers.  I hate being in a position where i can't move.  It just freaks me out.  Even if i'm laying comfortable in bed and a cat jumps up and lays on my feet.  I lay there thinking i don't need to move me feet... i'm perfectly comfortable... but it doesn't take long to get to much and the need to move gets too much.

I've only ever and one panic attack in my life.  Maybe with another 2 half ones.  The first one was about a week before i was due for and MRI for the initial biopsy.  I woke up in the middle of the night thinking the MRI was in 6 days... it was coming and there was no getting out of it.  The thought of going head first into that tube going through my head and I freaked out!  I had to take the covers off me because i felt closed in.  Then even the darkness felt like it was surrounding me to closely, so i turned on the light.  Then even just laying down felt like it was to closed in, so i got up to walk around.  It calmed me down a little so i thought i'd go back to bed.  But as soon as I did i felt it building up again.  So on came the light and i just played puzzle games on my phone until the sun came up a couple of hours later.

Then the time of the MRI.  They pushed the button to start loading me in.  I stupidly opened my eyes just to see how close the top of the tube was.  I felt it coming one and i tried to calm myself, but within a few seconds i felt myself pushing the panic button.  I felt like and idiot and asked them what the options were.  They said come back next week and try again.  I though no way i'm going through all this again!  So I took a deep breath and said "okay, lets try again".  I kept my eyes closed this time and it went fine.  It is soooo hard to not open your eyes, even for a second, when you're trying so hard not to open them.

The 2nd small one was while they were prepping me for surgery.  I was laid out like a crucifix with my arms on boards going out from both sides as they hooked up various tubes and things.  They had given me a shot of some anesthetic in the base of the spine just before i layed down.  So once my arms were all hooked up i felt like i just needed to adjust myself slightly.  I couldn't use my arms but i could feel the bard at the nd of m the bed with my feet so i went to push off that to slightly move myself.  But I couldn't move my legs.  I felt that panic rising and i was trying to breath deeply and calm myself, but it wasn't working and i knew that panic was about to hit.  That was when the general anesthetic kicked in and i went under. So it was beautifully timed.

It's hard to imagine how difficult the situation for you must have been though with the radio.  To have to deal with those triggers for every session, and everything constantly being brought back with the flashbacks!  I'm sorry you had to go through that over and over.  I'm not surprised it took such a huge toll on your MH.

I'm enjoying chatting with you as well.  Even though we talk about all these difficult things we've been through, i find it easier because i do get to talk about my own issues as well, so I think that helps me, because i generally only do it if using it as an example for someone going through something similar or if someone asks.  So it's nice to just swap 'war stories' i guess you could say.  It helps keep a bit in that cup.

[Till23]

I will look into funding for the Peer work course @MJG017 

Main thing that is happening for CSA is education. Education for children and wider society so that the victims speak up or people who see or hear of etc suspicious activity will speak up. 
Unfortunately cases that get to court are low, convictions even less and appropriate sentences virtually never.

Yes indoor cricket was big back then. I was living in Melbourne and I was in a mixed team. It was good fun. We just played once per week, in a night/evening comp.

 Oh yes, I take my mask off at home because it’s just too tiring all the time. Plus it’s just me and dogs. I don’t usually say much to them about how I’m feeling I kind of just play or interact with them. 

Because you need at least two genetic mutations to get cancer - one in a gene that becomes the oncogene and one in a gene in the tumour suppressor pathway. If you get another mutation in a gene that becomes an oncogene and the suppressor for that is on the same pathway as the original cancer, then you’re more likely to get another cancer. So it’s not as far fetched as it seems. My Dad got prostate and then in last 5 years thyroid cancer. Which is kind of good, because if you’re going to get a cancer, thyroid is a good one to get, because treatment relatively easy and high success rate. My mother had two breast cancers and so have I, but I was the youngest of all when diagnosed.

 I’m sure the prostate nurses wouldn’t have been smug, it was probably more a knowing look, like yep, I know what you’re saying.

Yes, there’s a low compliance rate with the anti-hormone treatment for breast cancer prophylaxis, even though it decreases risk of recurrence by 50%, because there are other side effects like pain in joints, blood clots, tiredness etc that is hard to deal with as well, so most people start it but many give up. That’s if it’s prophylactic, not treatment.

Flashbacks are different from panic attacks, but there are some similarities.

I’m actually ok with the MRI tunnel, but I also like to be able to move. I suppose in the tunnel, it’s sort of safe, because another person can’t get to me. So it’s different. I did have to have a cage on my head in MRI because they were looking for stuff in my brain.
For my second cancer they thought I had widespread metastatic disease but it turned out to be a weird kind of autoimmune disease, which I still have, but is not bad at all. Cancer and this other thing both “light” up

on a PET scan, so when they first saw the PET scan results that’s what they thought it was Stage 4 cancer. I had a breast biopsy one day - cancer and a lung biopsy the next - not cancer, but this other disease. So I’ve had a lot of scans for that disease.

Yes it is like swapping “war” stories isn’t it. I feel I can be pretty open because we’ve both had a kind of similar experience. I know you’ll know to some extent so don’t have to explain everything.

 I’m a bit worried at the moment because I have a nephew in Brisbane’s and my sister and her family are on the northern NSW coast and they will be affected in some way by this cyclone. I’m further down the coast in NSW and we are predicted to get rain and wind and high seas and swell. But nothing like further north.