Coping with life's difficulties

[MJG017]

@Till23 

Good luck with the funding for the course.  They do seem to be quite expensive without it.  But that may be here. 

All we had here with indoor cricket was the evening night comps.  State teams would sometime play during the days, but it was a good time to go down to a free net and have a bit of free practice.

I hope you don't mind me asking questions about CSA cases.  Feel free to say you'd rather not.  I just wonder if the low amount of cases the go to court and convictions is due to the fact that often victims don't come forward for many years later when they're adults.  Which bring in a few reasons for those poor numbers and sentences.  Like the victim is now an adult so the outrage that this was done to a child is lost slightly.  In no way should it be, but it's baffling that the number are so low.  Is it also a case of it being a child's word/version of events vs an adults?

That is really interesting about the genetic details of cancer.  I know a little bit about the BRCA1/2 and ATM mutations increasing risks, and the immunotherapies that can target it, but that's about it.  I know there is a lot of new research into CDK9 protein inhibitors which is showing a lot of promise to slow or stop growth of a range of different cancers.  The most relevant bit for me personally is its ability to do it with prostate cancer cells that are resistant to both hormone therapies.  I'm sort of keeping a bit of an eye on this one.  But despite promising early research results it may be a little too early to benefit me, but you never know.  And even if not, it does seem very promising for a lot of people in the future.

You're probably right about the prostate nurses and that look.  It just feels that way to men i guess.  I know they are all incredibly compassionate people so what you say makes a lot more sense.

That must have been a shock to have those scans all light up and thinking the cancer had spread so far.  I guess a person has never been so relieved to find out they had an weird autoimmune disease.

Yes, my panic attack had nothing to do with flashbacks to anything. It was more of a flash forward to was was coming.  It was weird though.  Maybe it was just a natural slight phobia that was greatly enhanced due to the stress i had been under at the time as it was obviously just after I was diagnosed.

It is a lot easier to share cancer experiences with someone who has been through it.  Not just because they understand and you dont have to explain everything, but you know that other person isn't going to be put off because of the subject matter.  I find it very difficult to talk about what i've gone (and going) through with my cancer, especially mentally, with people who haven't been through it because there's always the feeling that they really wont want to hear it and will just avoid talking to me.  So i consciously try to limit what i say to people.   Its refreshing to not have to do that.

Yes, this cyclone is very worrying.  I saw the maps of it earlier.  http://satview.bom.gov.au/  I usually have a zoom advanced PC support group meeting tomorrow, but it's been cancelled because a couple of guys who run it live in Queensland and obviously have other concerns right now.  I hope your family doesn't get hit too hard.  Fingers crossed for them. 🤞

[Till23]

I don’t mind at all

@MJG017 I think the more people are educated about these things the better for kids and people impacted by it.

The average time between the crime and the victim reporting it to police is 20 years. Many people never report it. By the time it is reported there is usually no evidence available. Sometimes the evidence that is available does not make the legal standard. The cross-examination is absolutely brutal, so even if it is reported victims often don’t pursue the court case because of lack of evidence and the cross-examination where you might be asked to describe in great detail what actually happened in the rape etc. There will be the why didn’t you fight off the perpetrator, as if a 7 yr old or even a 16 or 18 yo could fight off an adult. Because when you’re giving evidence you are a fully grown adult not a skinny little kid and of course the court only sees the adult. Why didn’t you say something at the time. People don’t believe that you can remember stuff in detail and think you must be making it up. That’s the amygdala and hippocampus- why flashbacks are so realistic- the trauma had never been processed by higher brain. So when you are asked what happened the next day or whatever you have no idea because who remembers those everyday things because they are processed by cerebral cortex and discarded as not needing to remember. The court and juries don’t realise that though, so they think the detailed description of trauma is just made up. They go for discrepancies between original statements and what you say in court.

There are so many reasons cases don’t get prosecuted or won. Then the sentencing is abysmal because judges are mostly male, think you should be over it by now, take into account the “good” things the perpetrator has done. The other thing is legally they have to use the law that was in place at time of crime. When it’s a long time ago, it was low sentences because people thought kids “get over” these things.

Yes the treatment of prostate, breast, ovarian cancers are quite similar and the newer immunotherapies are looking very promising. The advancements in science are amazing and technology has helped a lot. Treating diseases with genetic solutions is quite new. The human genome was only sequenced in 2003.

I’ve been a scientist in a previous life, so have good understanding of these things.

Yeah the difference between two CT scans within 6 months was huge with all these things in my lungs and other places and then then to see all these things light up on PET scan I thought I’d be dead in 6 months. Then I got the biopsy results. However I was pretty sick with the other disease before and after the diagnosis. I had a flare again after my father passed away. It can be debilitating and you can die from it, but I’ve been pretty lucky and now have very few symptoms. I will always have it though because there’s no cure, so it could flare up at any time, but I just don’t think about it. Like I don’t think about a cancer recurrence. If I was constantly worrying about it, my life would be much worse.

It’s very common for people to have problems with MRI, sometimes they have to be sedated. Also common for people to be worried about operations and the more complex and critical the surgery the more people worry. I think that’s just natural. Don’t forget people faint just having their blood taken.

Yes I agree I feel when you’re talking to people who’ve had/have cancer you know they won’t be thinking hurry up and stop talking about it or I don’t want to hear this. So you can say or ask me anything I’ll let you know if I don’t want to answer, but I won’t be offended at all.

Well I better get to sleep so I can maybe travel to my sport meeting. They said they’d let us know Friday mid morning if they are going to call it off. Although obviously they can do it at anytime after that if they think it’s too dangerous. Where I live will get some effect from the cyclone. The competition is in Sydney which should get less of an effect. We’ve already been getting rain here. But wind, rain and high seas and swell will get worse over next couple of days so who knows. Obviously nothing like SE QLD or northern NSW, who’ve already been impacted and flooding has started.

[MJG017]

@Till23 

I definitely agree it needs to be talked about more.  The stats are damning and so incredibly depressing.  Kids should never have to go through that and then spend the rest of their lives dealing with the fallout.  The more that's known, the greater the public pressure can build for some changes.  So I think it's incredibly brave of you to talk about it to help get that knowledge out there.

People don't remember details at the best of times.  I've heard multiple times that eye witness accounts of even very recent crimes are notoriously unreliable.  You add the fact that person was a child AND it was many years ago, what does anyone expect?!  It feels like the only way to really get some justice is if multiple victims come forward for the one abuser.  I imagine what victims must go through if it gets taken to court, and you can see why they might decided not to do it.  To have what you've been through, and going through, questioned on top of everything else must take a very strong person to deal with all of that.

That makes a lot of sense about the flashbacks.  I always wondered why people find them so distressing as i guess if you haven't experienced them you just assume its like remembering something from a long time ago.  But it must feel much more real and in the present than that if the mind can hang on to a lot of the details like that.  Ignorance really always seems to get in the way with so many things.  It's similar with adoptees.  It's only recently starting to be acknowledged that the damage it does to children.  The ways it adversely affects them for all of their lives.  Even now though there still is a lot of that mindset, that "you were a baby at the time, how could it affect you?".  When someone clearly has trauma, why can't we just believe them?!  I know with court cases there is a burden of proof, but lets just try to make is as fair and easy as possible try and prove that.

I've heard that before about the abuser getting lenience because of good things they've done since.  I can see how in any way that goes out the window after what they did.  There some things you can forgive and there's other that are just... no!  You don't get to play that card.  Ask the victim if it makes it any easier on them that their abuser did some good things after.  It frustrates and angers me to think about.  I cant even begin to imagine how it makes the people who went through it feel.

I know it can get a bit more complicated if the perpetrator was abused themselves as a child.  That's what i've heard anyway.  But in these cases it just makes it more important to stop, because it can start these cycles that last for a long time and can affect more and more children.

The science is certainly amazing.  I've always been really fascinated with different sciences.  But the biology and genetics areas are still all very new to me.  So it's really interesting to read what you've written.  I could literally have no idea about something like I do with this, or it may be an area i'm much more knowledgeable in but either way, i could discuss it all day long and still be ready for more.  Looking back, I really wish i had of pursued the passion more after school.  It was probably timing that ultimately got in the way.  I finish high school in 1986 and home computers were starting to take over and electronics was another passion i'd had for years so that seemed like more fun so i went that way instead.  I look back and I regret that.  It was fun and I enjoyed working in IT, but it was always just that... fun.  I never really had that passion for it.  Plus being someone with a lot of social anxiety, the idea you could sit in a dark quite corner with a computer or building some electronics just too perfect to ignore.

It seems like a lot of people who have cancer, or other potentially life threatening conditions, find some level of acceptance.  I guess you have to to deal with it.  I know i realised that the zombie mode was not going to help change anything... all it was doing was wasting time and yes, there was now much less of that ahead, but that made it all the import important to try and get something out of it.  It's easy not to fear things when the worst has already happened.  As long as you're still going then that's a bonus.  So many priorities in life change.  Time becomes more and more important. 

Although there's still the knowledge, always present in my mind that it is limited now, but somehow i've learned to keep that thought way at the back.  I still don't really know how i do it.  I keep expecting it to come back like a massive truck through a glass window but it seems to stay there.  Just little frequent flare ups to remind me to not look out of that window... keep looking at all the nice things in the room.

[Till23]

Sorry for very late response @MJG017 

I went down to my sport competition on Saturday which took up most of the day. Surprisingly I didn't sleep well last night I thought, being physically tired, I'd be out like a light, but my brain wouldn't stop.
Yeah, it's a lot better than it used to be. I was hoping I could use my story in some way to help others. I'm interested in trauma informed healthcare.
I know that a lot of people with trauma backgrounds have shorter life spans than people without a trauma background. One of the reasons is because they do not seek healthcare. There are a lot of reasons for that, they care little about themselves, they are embarrassed to seek healthcare, they can't afford it, mostly it's because they don't want anyone to find out about their pasts.
Also, trauma, especially childhood trauma, is known to associated with a number of chronic diseases including cancer. So, people who've been subject to trauma are more likely to have a medical problem and less likely to do something about it. I'd like to be able to do something to help change that,
Yes, in flashbacks you feel like it's really happening now. The word triggered is overused nowadays, but when you are triggered in PTSD your mind goes back to an event you have suffered back it the past, but you think it's happening in the present. So, people can have really bad reactions and do things that seem strange to any witnesses. Because they are trying to avoid the trauma they think is happening or they might freeze to try to avoid something bad happening. So, it's not the same as just remembering something from the past. It's hard to live with and a lot of people self-medicate with drugs or alcohol or use some distraction like working all the time.
Yeah, that is why childhood trauma differs from trauma that happens later on, it’s all got to do with attachment. It seems like you've read about John Bowlby's attachment theory. So, any trauma including not having your family of origin, has major repercussions, which can be lifelong if the underlying trauma is not treated.
There is a narrative that a lot of perpetrators are victims themselves, but although some were, the percentage is actually low.
I got a Texas Instruments computer in about 1985 that I hooked up to my portable TV, as my first computer. I well remember the Atari coming out. IT is a good industry though and back then it would have been exciting because there was real change at that time.
I do fundraising for breast and ovarian cancer and try to keep across what is happening so I can help other people in the breast cancer group I am in. Actually I went to a free lecture online from the Garvan Institute, they talked about latest breakthroughs in breast, ovarian and prostate cancer, https://www.garvan.org.au/news-resources/events-seminars/annual-breast-cancer-public-lecture-2024
The prostate stuff is towards the end.

I know it's so interesting how the brain works and how you can manage to "ignore" something that is important. I sort of tried to do that with the CSA, I suppose, but it did still affect me a lot, even though I went to uni, got jobs etc
Well, this has as usual turned into an essay - sorry about that. It's so easy to chat to a person who's on the same page and to learn things and reminisce about aspects of the past.

[MJG017]

@Till23 

Yes, that brain will keep us awake long after the body says "please can we get some sleep!"

It so great that you are using your own experiences and knowledge of trauma to help others.  This past year or so i've found it so helpful with my own mental battles to find positives out of things I didn't think I would be able to.  But I found positives in helping and support others going through what I have.  The idea to start that support group came at just the right time for me.  Right as I was really struggling with the news that the ADT had failed so quickly.  It was really the main thing that gave me some reason to get off the couch and start living again.  It's just become a passion ever since.

But considering what you've had to, and still, deal with, i'm sure you will be able to help a lot of people who need it so badly.  You'd think there would be more funding around to help these people, if only to save some a lot of money on medicare for all of the extra care they will need in the future, because there wasn't enough support early on.  It's the same with many things i guess.  Like how much could they save by sending out a letter to all males over 50 (ideally 40) to get a PSA test down.  They could even send it out with the bowel cancer screening kits.  I know the amount of money that everything i've had costs and if I got tested earlier then maybe i wouldn't have needed anywhere near as much.  I know they're now trying to get Lutetium funded for early treatment rather than just as the last resort as it is now.  But I don't like their chances as it only just got put on the PBS as it is.  There just doesn't seem to be any long term thinking anymore.

Those attachment issues are so hard to deal with when you're an adult.  It's so hard to explain to people who haven't experienced it.  Which just makes it so much worse, because you have to find ways to hide it.  By the time you learn about it and it's relation to childhood traumas, it's so ingrained its so hard to change.

I'll take a look at that lecture, so thanks for that.  I find is reassuring to know what is going on with the latest research.  Maybe none of it will be in time for me, but its still fascinating and it also brings hope to other men that I talk about it with that have a lot more time than I do.  You can talk about the advances in even the past 5 years and it does give them back a bit of optimism that there's still hope there that they may have a lot of years in front of them.  Obviously there's no guarantees, and they understand that, but it's reassuring to know the pace of which these advances are being made.

I got my C64 mainly because I knew people at school who had them and I would be able to get games off them.  But i just become so interested in the programming side and i got quite heavily into that.  You're right though.  I kind of forget how new and exciting it was back then.  It's easy to look back from 40 years ahead and say what we should or shouldn't have done.  It would be so nice to have a practice run a life, learn your lessons, and then start afresh.  But even then, so much is out of our control.  I wonder how much it would actually change.

You do seem to be challenging my position on Sane as the 'writer of the longest posts' 😀  But yes, it is so good to be able to chat to you about these things.  Not only do I get to talk about a lot of my own experiences I don't usually go too much into, but I've learnt a lot from your own experiences and your wealth of knowledge.  If there was an equally 'chatty' astronomer or astrophysicist here as well, I'd be sitting here typing and reading most of the day! 🤣

[Till23]

Ha @MJG017 - I'm also into astronomy! I have taken photos of total moon eclipses where I've got a number of moons slowly eclipsing on the one image. It takes a lot of time and a few failures to get it to work.

I'm sure you know Brian May of Queen is an astrophysicist with a doctorate - apart from being a guitarist! Some people are just so talented. I feel happy when I tie my shoelaces up first go 😂

I had a TI 99/4A back then, I think I couldn't afford a Commodore64

I think having a purpose in life is so important, because I've worked in science and healthcare, I have felt I've had a purpose, but I've really struggled, since I retired. The volunteering is helping with that, but I feel I will need something else; I just have to work out what that is, but l hope it can be in getting healthcare more trauma informed for all people.

Of course, funding is always short. People complain about taxes, but then when they go to hospital and wait, they complain about waiting. Most people do not actually understand the economics of everyday life of society. 

There is long-term thinking but there are so many things pulling on the health budget, like medications for different diseases, staff, public health (like screening programs and education), it's hard to spread it around, it's difficult for people who don't know to see the big picture and rural and remote people always get shafted. I knew one person who had to travel 1200km to get cancer treatment so back and forward every treatment cycle, not just 30mins or an hour to get into town. One of the problems for males is that they don't go to doctors, because there is a health check for men which includes PSA, just like there's one for breast screening and cervical screening for women. More women get screened because they got to GP who reminds them. Bowel screening has become easier because people can do it themselves and you don't need to keep it cool, so can be done at home and mailed in, most things can't be screened like that unfortunately.

Yeah, that's right - you have to think "Life's not a dress rehearsal" and just do stuff even if you're anxious. I have started to do this a bit more now, I have a bit of perfectionism as part of cPTSD, so I am worried about doing things in case I'm not "good enough" at them, but I'm trying to let that go now that I'm aging.

I was just talking to my psychologist today about attachment trauma and some of the repercussions that I hadn't sort of realised I had really. I was also talking about the difficulties of changing things because they are so ingrained.

Don't worry @MJG017, you're still winning the long forum post title.

[Till23]

Hi @MJG017 

I haven't heard from you for a while.

I hope you are well and not too busy studying away with your course

I have seen you occasionally on various threads on the forums, when I've been browsing

I hope I have not offended or otherwise made you feel uneasy chatting.

I have really felt that I've got a lot out of our chats.

I have been commenting a bit less on the forums and not joining some threads at all, to try to kind of look after myself.

Anyhow hope you are well.

I spoke to my psychologist (she is a psycho-oncology psychologist, that does a little bit of general work) about assisting other people and she gave me some ideas regarding cancer advocacy with lived experience. I mentioned I'd interacted with you on the forums and what a brilliant thing you'd done setting up the younger men's support group, she also thought it was great and that possibly gave her the idea to mention the cancer advocacy groups to me. 

[MJG017]

Hi @Till23 

Sorry I haven't replied in a while.  My last post was just before I tool a bit of a break.  I've been easing myself back in.  I keep reminding myself to reply in the thread but something always seems to distract me.  Not just with this, but a lot of stuff lately.  I have a telehealth appoint with a specialist in Hong Kong on Tuesday (setup by by GP who suggested getting a 2nd opinion) and the my next onco appointment on the 10th.  I know the news isn't going to be good, the PSA will still be rising, its just a  matter of how much, so I think it's just had my mind all over the place the past few weeks.

You definitely haven't offended me and i do enjoy these chats.  I think it may just be that i like to take some time to write these replies and so by the time i get all the quick one out of the way, I've gotten distracted by other thoughts.  The course is also taking up a bit of my time.  The current assignment is on "work effectively in trauma-informed care."  There are 3 scenarios you choose and then 12 questions you have to answer 3 times, once for each scenario.  I'm half way through and it's already at over 8000 words!  I'm sure they're not looking for this much but I don't know how to answer the questions any briefer.  The first question for example "Describe the type of traumas this person experienced".  I could just list them i suppose, but i don't learn much from that.  I list them and briefly describe the events that lead to them.  the next question "What was the impact of trauma on this person? In your response consider social, emotional, physical and spiritual impacts. Briefly describe the behaviours and distress they experienced.".  It does say briefly, but it's a lot of stuff to talk about with some many impacts from complex trauma.  I'm probably overthinking it again, but i dont really have much feedback as nothing i've submitted this term has been graded so far.  So she's just going to have to do a bit of reading.  One of the scenarios was a woman who experienced CSA so our chats did give me a bit of insight into answering that 

I've sort of done the same.  Just really being active in a couple of threads, plus another that I saw that i felt i could help with.  Even then, i do feel the pressure though spending time here again after my little break.  I do worry i'm slipping back into bad habits and taking on too much again.  Maybe it's stubbornness, or just a high tolerance and i don't notice until it gets too bad.  It's probably a bit of both.

I'll be curious about what ideas you come up with for cancer advocacy.  I've tried to do a bit and i'm not really sure what else i can do.  I have the support group and do get some small outside projects from being a group facilitator.  I have my 2nd training session tomorrow morning with the Cancer Council SA for their cancer connect program.  Apparently no other state offers the service for people with advanced cancer, but SA are starting it.  So i guess that's why they let me do it even though the requirements say you need to have been off treatments for 2 years.  So i'm not sure if i'm a bit of a guinea pig.  I prefer 'trailblazer' 😁  I did put my name down for a similar volunteer role with the PCFA but I never heard back.  I would like to do more awareness advocacy work, but i'm really not too sure where to start.

I even got an email from a magazine writer at Cancer Today in the States on Sunday morning.  He found my name in a couple of articles while researching the Lutetium-177 treatment.  I had done a newspaper article and a radio interview last year organised by a PR company hired by Novartis about the time Pluvicto was approved by the TGA and looking towards getting it on the PBS.  So i'm assuming that's how he found me.  He wanted to interview me to get a patients point of view as he thought his readers like that personal aspect.  He'd already done all the clinical side.  Other than these sorts of opportunities and the cancer connect role, i'm not really sure what else i can do outside of peer support.  I'm still just working this out as i go. So yes, i'm really curious about what you come up with.

I had some i know who has had some medical issues with his eye complain to me about how long he is kept waiting every time he has and appointment at the hospital.  He was cursing them for the huge amount of people waiting. I told him he's blaming the wrong people.  That there are just too many patients and not enough doctors. But i'm not sure he was listening.

As a male, i know we tend not do checkups and things like that very well.  But the testing for prostate cancer is extremely hit and miss.  If you're under 70, some GPs will not test you.  So many guys in out group (40s and 50s) have similar stories of it only being found by luck or persistence in asking for a test.  Some have been outright refused.  It's quite common with men i've spoken to.  there are new guidelines which are coming in finally after getting everyone to agree which is testing for men over 50, 40 with a family history.  So hopefully this will filter down and we can see that resistance from some GPs greatly reduced.  I'm pretty sure the new guidelines included increasing awareness with GPs for this testing.  I don't think it goes far enough, but it's a big improvement.  We have someone in our group who was diagnosed in his mid 40s with no family history.  Then there's men who dont know their family history.  Maybe they're adopted or their father died young or was just never a part of their life.

[Till23]

It’s great to hear from you @MJG017 

I wasn’t too worried that you hadn’t responded, because I knew you were busy with study and you had Ca appointments, plus just life. I’m very glad I have not offended you.

Wow, Hong Kong that’s a bit far away! Hopefully that will be useful. Yes, it’s hard for people to understand the waiting to find out results, especially if you think it’s not going to be good. I’m crossing all my digits that your PSA has plateaued, if not decreased. We were doing cleaning up at my Dad’s house to prepare for sale and I found his PSA results, that had really increased and he hadn’t told us. He had some good responses to treatment at times and his PSA did go back to baseline previously. I wish we knew, because we could have done things differently near the end that he probably would have liked. I suppose he thought he was protecting us. I have my monitoring mammogram and ultrasound and a PET scan all coming up in April.

 I’m glad you thought our chats were helpful in your assignment. Yes, it’s hard to know what briefly means. And as you say with open ended questions sometimes you can write a lot because impacts can be so far reaching into every aspect of life.

Tonight I went to a talk from a lady (probably in her late 50s) who told the story of her mental health struggles including a suicide attempt. It was interesting because this occurred in her early 40s, with no previous MH difficulties and no know MH difficulties in her family. She had a reasonable size family and was close to them including extended family and no trauma history. She had many symptoms that I, and other people on the forums, have had. Hers was a successful story, although she occasionally has some fairly low level difficulties. She is now doing peer support and advocacy work. So it was good to hear of a successful story and also she’s having success in her MH work now, which is encouraging. It was put on by a suicide prevention organisation.

However, what became clear to me, not that she talked about it, is how disjointed, confusing and under-funded MH is in this country. I feel there is a lot of waste in the system because there are so many different groups involved in MH care and sometimes they are doing very similar or even the same things. So time and money is wasted re-inventing the wheel, instead of increasing services or access to services etc

I’m hoping I can use my trauma and MH experience to help make meaningful changes to the current MH chaos.

With cancer, I already filled in a survey for new breast cancer framework for the nsw government.

My psychologist suggested Cancer voices as a possibility for cancer advocacy. I haven’t had time to look into it yet though, so not sure if it’s good.

I did a Dip for Cancer for Cancer Council where I did fundraising by going for a swim in August - it was supposed to be the end of August but I had to do mine early because I was having my second surgery just before the actual day and I couldn’t get my bandages or surgical wound wet!

I did the Sydney City to Surf last year fundraising for Beyond Blue, since I was in the top 10 fundraisers I ended up with them paying for my entry and to be in a special charity group to start so it wasn’t so crowded. I’ve done a 100km walk over a month for Black Dog Institute in 2023. I feel I can do more than fund raising though with my lived experience. To start with, this year I am going to be a Community Ambassador for Mother’s Day Classic (5km walk/run) for Breast and Ovarian cancer.

I’ve just looked up the Cancer Connect and I’ll have to look into it more carefully.

 I think you are already a trailblazer with your younger men’s support group so yes you’ll be a double trailblazer with the cancer connect program!

Yes my brother has been getting his prostate checked since 40 because of Dad. Dad also had genetic testing and was BRCA negative, but I still got breast cancer twice. I have had limited genetics done and am BRCA negative and my brother, sister and nephews and niece will get funded early testing for PSA and Breastscreen because of Dad and I. So we both had rare genetic mutations.

 I will look forward to hearing from you, when you have time. Don’t stress about it, you have a LOT on.

[MJG017]

@Till23 

After my tests result in November and a couple of followups in the new year my GP looked at the numbers, said "that's depressing" and asked if I'd thought about getting a 2nd opinion.  I said i'd thought about it but had no idea who I should go to.  He's Chinese so he has these contacts in China.  So he said he knows someone who is young and a PC specialist and is very good!  But that he only sees patient in Hong Kong usually.. and that healthcare there was more expensive than here in Australia, but was happy to ask him if he'd see me, but no guarantees.  I got a call back the next day saying that he was happy to look into my case and see me.  So even, just for peace of mind, I thought if i don't get a 2nd opinion now, its probably too late to worry about it.

I hadn't really even considered the PSA might plateau, i think a decrease is very unlikely.  But no one will be happier than be if that happens.  I'm basically prepared for another increase, and just hoping that it's not going back towards the rate of increase it showed back in July - December in 2023!  It went from 0.07 to 1.26 so it was doubling about once a month.  By them time i saw the oncologist 2 months later and got another test, it was up to 4.5!  So mentally, I just don't want to get my hopes up too much, as I've had more bad results than good ones so far.

It sounds like April is and important month for the both us us then with you having scans.  Hopefully it's all good news for you.

Unfortunately my lecturer was sick yesterday so she wasn't at the study hub.  I talked to the woman who stood in for her about my assignment and i was concerned about how long it was.  She asked if she could read it and said she was very impressed!  She said the everything i said was relevant and that there really is nothing that should be removed.  That it covered everything and explain it all very well.  She did say that maybe this early on they weren't expecting so much detail yet, but she wasn't sure.  But ultimately just said I should be very happy with it.  So i'm very happy with it.  I did say that i could have just been a lot briefer and just listed things without explaining the whys and hows.  But that I didn't feel i'd learn much that way.  I think i've really learn quite a bit more with trauma-informed support from it, which had built nicely onto other things i've learnt these past few months.  Which very much includes here.  It is mostly online though, which is convenient in many ways.  But being there yesterday and talking to the other two students there and giving them some advice for the assignments really reminded me of what I mess about in-person study.

It's funny.  The four of us yesterday were talking about why we are doing this course.

And it's was a similar story for everyone, healing for past trauma or a really tough situation in life, refocusing the priorities and a new found passion for supporting other people.  It sounds like a similar situation with this lady you saw give that talk, and yourself as well.  It seems to be most of us.  Maybe its a change in outlook on life, or exposure to the inadequacies in the physical and mental health systems.. or both that make people want to do what they can to help and support other people.  Ultimate though, i think it's important for us mentally to feel like we can take some very bad or difficult experiences in life, one which there seems to be very little positives, and find those positives and run with them.  I feel like it reframes an awful experience/s as something that allows this 'new' life we create for ourselves in the aftermath to have meaning and that we are taking control over what happened to us and turning it into strength and purpose.

I just had a quick look at Cancer Voices.  I'll read through more later, but it seems really interesting so far.  So i think i'm at the same stage with them as you.  It does seem very interesting though.  For what i saw, you can sign up as a representative and they can match you to places wanting someone with that lived experience.

I have finished the Cancer Connect training, except i have to do a 10-15minute practice call to finish up... probably next week and i'm ready to go.  From my experience so far, I recommend it and from our chats so far, I think you would like it.  You are free to decide how many clients you want at a time, provided you get any as it obviously depends on who requests the service. 

I did the Long Run fundraiser for the PCFA last September, with that month being prostate awareness month.  I managed to raise about $1600 which i was really pleased with because I don't know that many people and so i was really grateful that friends and family who I don't have a lot of contact with were do generous.   It was no top 10 effort but i was very pleased with myself, especially doing the 72km over the month. So it did give me motivation to exercise more which was a huge positive from doing it as well.

As someone who was a top 10 fundraiser, well I just have to ask how you do it?  Any tips for someone who doesn't have many friends and family to ask for donations.  How do you go about raising money from other people/places?  I know i could contact places to see if the would 'sponsor' (i guess that's the word) me, but I'm not sure i have the confidence to do that.  Even thinking about it now, i'm straight away reminded of a difficult experience in high school (Year 10) when the gave us books of raffle tickets to sell to raise money for a school bus.

My social anxiety was quite bad back then.  I think i hid it reasonably well, but who ever really knows.  The anxiety built over those 2 weeks as i really didn't want to take my book back to home room with none sold.  So a few days before i forced myself to go up the street to sell some tickets.  Honestly, even to this day I have no idea how I forced myself to do it!  Especially remembering how difficult it was for me back then.  I went to the first house and no one was home so I thought "this isn't as bad as I thought."  I went to the 2nd house and someone answered.  There was a screen door that they never opened and I could see through the mesh.  It was one of the most awkward and babbling few sentences that have ever left my mouth.  I don't even remember what they said.  I just know they didn't buy a ticket and I decided I can't do this and went home.  A few days later in home room, we were asked to bring up our books and the money we'd raised.  Of course mine was empty.  So i'm standing there in front of the whole class while the teacher gave me a bollocking for being lazy, having no school spirit and letting the school down.  I had to stand there and take it because I remember just thinking while it was happening that i had two choices. 1) stand there and take it, or 2) admit in front of everyone that I tried so hard to do it, but i was just too scared.  I knew how that would go in a public high school in the 80s, so I knew it was much easier to just take the bollocking to keep my 'complete failure to be normal' a secret.  I can't tell you much about year 10, other than my tech studies asking the class what the definition of light was, and i responded "Something you can see in the dark". But i have never forgotten that experience with the raffle tickets.