Coping with life's difficulties

[Till23]

Hi @MJG017 How are you?

I cannot apologise enough about being pretty absent, to totally absent from the forums which especially meant that I was not chatting with you. I'm really sorry about that.

I sort of was on a bit when I got back from my trip and thought everything was good.

Then there was some comments on forums that I found very hurtful and invalidating and that made me back off and then I've been back and forth but no where near as much as before and pretty much absent really. I became really unwell and decided I'd had enough of the world. But I did not leave it, as was my intention. However, I have not really been here much since, just an occasional comment if someone tags me specifically (I don't answer the group tags, because there are other people who can chat).

The main thing about the forums I thought about while I was absent was not engaging with you. I have been engaging with a person in Yarning Space, which I hope is helpful for them I also wanted to keep up some engagement there. 

I went to a state level sport comp in Sydney on the weekend and again met up with the cancer survivors from around NSW in our specific events. I see prostate cancer survivors there at times and it reminded me of you.

I have just been engaged by my state's health department to do some Lived Experience work for educating health workers on people who are adult survivors of CSA and their interactions (or not) with health services. Initial it will be engagement with drug and alcohol services, but I want it to expand to all areas of health including cancer.

I don't log in much now but I noticed that you don't seem to either.

I hope you are ok and was wondering how your father-in-law is.

I hope you are able to continue on with your studies ok, it sounds like you've been busy.

[MJG017]

Hi @Till23, good to hear from you again. 

Please don't feel like you need to apologise for not being around, i completely understand how hard it can be when in a tough place mentally, it sounds like that's where you've been, and i'm so sorry things have been so difficult for you.  I don't know what was said on the forum to you, but it's upsetting that someone would say anything hurtful or upsetting to you.  To anyone here really.  If this can't be a safe space for us, then something is very wrong.  I know it can be really hard to return to somewhere after something like that.  Even if it's just feeling invalidated it hard, so add more on top of that and it's completely understandable you took some time away.  Like I said though, i'm just sorry you had to go through that.

Personally, i'm very happy you're still here.  Not just for myself obviously, but hoping it means you're feeling like you're in a bit of a better space mentally.  I'm always happy to chat with you if you need it, or even if you just need to vent or take your mind of things.  I just hope you're doing okay now and feeling better.   

As you've noticed, I haven't been around much lately either.  Similarly, I only come on if i'm tagged in specifically, because that would just be from you, or one of the others I've made a bit of a connection with.  Most of them have disappeared so I haven't had a reason to come online.  I just think there's people better suited to offer wise words to people here.  If it's cancer or adoption (or attachment) related then I feel i can help, other than that I'm just not sure I can offer much.  As they say "stick with what you know".  I think i've just (finally) focused a bit more on myself.  So continuing my adoptee's counseling and psych sessions about the cancer.  It's really difficult to find people who will openly and honestly talk about the mental struggles of both and it makes it very isolating. But i'm not telling you anything you don't know.  And please don't take any of that as any sort of pressure to stay here.  If you feel it is ever too much for you to come online here, then that is what you have to do and I fully understand.  I guess I just wish there was something I could do to help in that situation.  I guess we all feel like that though when someone we know is struggling.        

As for me, I'm doing okay thanks.  Well, you know... okay.  Had my latest oncology appointment a couple of weeks ago, and yet another PET scan in a couple of months before I see him again.  So not much i can say (or do) about my situation until then.  Just trying not to think about the possibilities to be honest.  The best ones are just the least worst of a bunch of bad outcomes.  But whatever happens, at the moment they're all possible worries for another day. 

Thanks for asking about my partner's dad.  He's back at home.  Getting a bit of in-home rehab as he's still a bit unsteady on his feet, but doing well otherwise.  I haven't really done much course work since last term.  My lecturer gave me a short course to do over the holidays... 'working with people affected by adoption', after a chat we had about the PASS service at RASA (Relationships Australia SA) looking at the possibility of peer workers next year, and i'm doing my course with them so of course I said I was interested.  I've done one short-ish assignment (mine never seem to turn out short) but motivation had been lacking for a lot of things the past few weeks.  I think it may be something with all the hospital visits with my partner's father and then after all of them, my own oncology appointment... it just sort of hit me i think.  You thing you're handling everything okay, and then something just triggers and you realise that there had been something building for a while.  A bit like that idea of putting a from in a pot of water and slowly bringing it to the boil so the frog doesn't notice.  While sitting in the oncology waiting room, a funeral ad on the TV there certainly doesn't help.

Other than that, getting ready for September and prostate cancer awareness month.  I already have one possible TV spot lined up with the PCFA's PR people.  A segment to talk about the support group and why I started it and how it helps.  It's mainly to raise awareness about the Long Run fundraiser.  I'm entering again this year, but got a few of the guys from the group to form a team this year.  We've even set up a fundraising night... some musical bingo thing that is apparently popular at the moment.  We've raised enough so far to cover costs plus a bit more so it's going well.  It's only been a week and we've sold 2 tables and gotten a donation that has paid for the venue and the guy running the bingo so it's going well so far.  We have another month to sell the rest of the tables and get donations for raffle prizes and things so hopefully we can raise 2 or $3,000 from it.  Then add that to what each of raise individually with the Long Run and I've set our goal to $5,000 so we're a good chance at making that which would be an awesome result!  Plus if I can get some media opportunities again to spread the word about getting tested then it's a huge win.

Speaking of huge wins!  That is fantastic news about you doing that work for the State Health Department!  What an amazing opportunity to do some really great and important work.  How are you feeling about it?  Going from our chats here, it's hard to imagine they could have picked a better person for the job.  I'm sure you'll smash it!!  'Congratulations' doesn't seem right considering everything you've been through to be in the position of doing this job, but I'm sure you can help a lot of people and much a big difference. 

[Till23]

Hey @MJG017 nice to see your post and that you are going ok. Sounds like you’ve got a lot on. I’ll quickly write something here and I’ll come back to your post properly later. I like chatting to you and I feel I can be pretty real with you, I don’t really have that elsewhere.

Prostate cancer month is September and Breast cancer is October. We have some of our things in September though.
I just signed up tonight to do 7 Bridges walk in Sydney in October for Cancer Council (all cancers) which is 28km walk. I put my father as the person I am honouring by walking. Obviously the funds will go to Cancer Council projects they choose.

That will be the week after I come back from the Australian Masters games for my sport. Which will be about a month after the national sport event. I am doing too much I know, but it keeps my mind off things.

I got selected for another lived experience workshop about suicide which will be for 2 full days at end of this week.

It’s funny, I’m fine if I talk about cancer, poor mental health and suicide in general or for other people, I just put on a sort of mask and I can talk about myself, but I’m kind of dissociated from the feeling of it. But if I stop and think about my actual self, I’m not so fine. So, I’m currently using the avoidance strategy, but hoping it will help other people.

I’ll answer properly later as it’s 2am now and I’ve got to be at table tennis in a few hours!

Thanks for chatting and Catcha later

[MJG017]

@Till23 I will wait for you longer reply before my own longer reply to your reply. 😀

I just wanted to say I completely get what you wrote about being able to talk about anything to others without much issue (masking all the way), but the difficulty starts when we start to think about our own situation.  That disconnect is gone and it feels like you're on a precipace... feet starting to slide down a rapidly crumbling edge.  Distraction is the only way to stop from falling in.  It's such a weird head space to be in.  It's difficult to figure out why on one hand we can talk about our situation so easily, but on the other hand, thinking about it can be so destructive to our mental health.  I feel like I learned a long time ago to switch this feelings off in order to get through life and interact the little I did with people.  But that switch can't stay off indefinitely, so we save it for when were talking to other people.  Which I've always wondered if it makes other people see me as a bit cold and uncaring, especially in the past. 

[Till23]

Hey @MJG017 I haven't been on the forums much since I got back from overseas trip. Sometimes I just check in briefly late in the evening, and only look if there are any tags to respond to. I haven't been able to get the motivation or head space to check the rest of forums. 

I haven't noticed you on much, but I haven't been on that much to notice.

I've felt bad that I haven't chatted with you much since coming back from overseas.

I have been on a little bit more in last week.

I saw over on Gratitude thread that you were nominated for a Lived Experience award - that's fantastic and very much deserved given what you've told me.

How have your cancer follow-ups been going?

I have struggled a bit MH wise since I got back from overseas and discharged by my psychologist.

I have some ok days.

I recently came back from a sport thing on Gold Coast. The event itself was ok but I felt awkward at the social things.

I also see you have been on the Cancer Council counselling service. Do they pay you for that?

I have had my second meeting as a CSA Lived Experience person for my health service which covers about 20% of NSW. Hopefully I can do some good with it. They want me to do some stuff for general MH in the service, so will see what happens there.

Looking forward to hearing from you when you have time (and if you like) - you seem so busy!

Are you doing the Long Run now?

I will be doing the 7 bridges for Cancer Council in Sydney next month

[MJG017]

@Till23 

Great to hear from you again.  I'm not on here very much at all any more.  Just when I get tagged by someone and I come on to read and reply.  I get the emails if I'm tagged, so I just go by that.

Yes, the email about my being accepted as a finalist for the lived experience workforce awards was quite the shock.  I didn't even know I had been nominated.  My lecturer nominated me for the 'peer work student' category.  So the email I got saying I had been chosen as a finalist was a massive surprise, to say the least.  I would have assumed it was a scam or something, but I recognised the name.  It was someone I contacted at the MHCSA when I first looked into maybe doing the course and had no idea how to proceed.  So if feels like that conversation has come full circle now in a way.  I'm just really honoured that I was nominated, let alone chosen as a finalist!  Each nomination has to have a 1 page bio about the nominee submitted.  I get sent a copy of the bio my lecturer wrote for the nomination next week, just for me to confirm.  I'm extremely curious to read what she wrote about me.  

Sorry to hear your still struggling a bit with your mental health.  Have you had much luck working through it?  Even just getting a few more of those okay days?  I have okay days and bad days. I've come to accept that the bad days are just normal for anyone in my position, so I accept them, allow myself to feel the pain and sadness, and just try to get going again.  I don't beat myself up about them anymore.  It used to feel like I was failing or doing something wrong when I had those bad days.  But now, I just look at it as being fine and normal.  As long as it doesn't stop me getting on with life that much, then I figure it's all okay.  

Yes, I did the training for the Cancer Council Cancer Connect service a few months back and have been waiting for my first match.  I finally got it last week and made the call the following day.  We talked for just over an hour and he said he was really appreciative of being able to chat to me and that he got a lot out of it.  He wanted to talk to someone who was in his situation, someone who was also going to be fighting cancer for the rest of their life.  He'd talked to people who had had the surgery or radiation and had an undetectable PSA since, so effectively cured, and he didn't find they really understood what he was dealing with. Ive scheduled another call with him for early January.

It's a voluntary position, but it's something I really wanted to do, so I was excited when I got my first match.  A bit nervous of course, but not as much as I though I'd be.  The social things still make me very awkward, but I'm getting better. One in one is a lot easier for me.

I'm sure you'll do a lot of good with your CSA lived experience workplace.  I'm sure, sadly,  there are quite a lot of people who would benefit so much from listening to and talking to you.  I don't imagine a lot of survivors of it like talking about it very much so don't really get to talk to someone else who's been through it.  I've gotten a lot just talking to you about cancer, so I think you are so open and honest that you can help a lot of people, with things far more traumatic than cancer.

Good luck with the 7 bridges.  Yes, I'm doing the long run again this year.  A pity about the anonymity, otherwise I'd be only too happy to donate something.  I've raised $4200 so far and done a lot of kms for the month so far [edited by moderator], so I'm really pleased with how it's gone.  I actually formed a team this year.  There's only 5 of us, but last I looked we were still hanging onto similar [edited by moderator for anonymity] place on the teams leaderboard so really proud of everyone.

Take care of yourself and I hope the MH gets a bit better for you and you get some more of those okay days.  I'm always happy to chat if you feel it may help.  I've missed our chats as well.

[Till23]

So good to hear from you @MJG017 

Oh yes it will be interesting to see what your lecturer has said @MJG017 I think I remember at one stage that you were feeling a bit like you weren't sure the work was for you. But look you've really landed on your feet, doing the Cancer Council stuff on top of your own group stuff - you're a real positive in MH.

I'm really proud of you!

In the Long Walk are you supposed to do a certain number of kms in the month?

Good fundraising - is that just you or the whole team?

I have a small team for the 7 Bridges - just me and a former co-worker (her sister died of breast cancer and left behind young kids - that was decade or so ago).

For my Lived Experience stuff, I'm not talking to survivors I am advising the health district on ways of engaging and engaging with CSA survivors. It's known that health outcomes (physical as well as mental) are worse for CSA survivors. Often survivors avoid medical services and health screening etc. Eventually I will be talking directly with health workers who come into contact with survivors (so all workers), but now it's just advising on training programs and printed information. The role will evolve so just seeing where it goes. All things in health bureaucracy move slowly.

Yeah my MH has always been a bit up and down, but somehow I was in better control when I worked, I think because I had that feeling of doing something useful, with my work.

I know I do volunteering and the LE stuff and am on executive of my sport club, but I still feel it's just scratching the surface. The thing that has set me back the most I think is my psychologist discharging me. So I do kind of feel like I'm failing. Some days I'm OK, but I feel like I never really feel joy.

Right now I have a cold and I'm much sicker than I normally would be, due to this inflammatory/immune thing - I'm quite breathless at times and lots of coughing so now I've got chest pain from that! It's only temporary though, so will pass.

How are you going with your cancer surveillance?

[MJG017]

Hi@Till23 

Sorry it's taken me a while to reply, it's been a bit chaotic with a lot of stuff happening.  One of which, my partner works for MS Society SA/NT and the went into voluntary administration.  I'm not sure 'voluntary' is needed as there wasn't much choice.  So it's been a bit crazy with that and all my stuff as well.

Yes, there's been momentshere I have doubted I am capable of peer work.  Its never been the theory or the effort, just the self confidence thing... as always.  Its always held me back.  It's a bit more manageable these days but still a big struggle.  You know how it is... It's hard to deprogram yourself after a lifetime of being one way.  I think it's also knowing with my health situation, it seems a bit late to try and build a new career... even if some place let me, which from experiences over the past three years I doubt very much.  I never went into it expecting a job at the end.  It was more I thought it would help me be better with the support group stuff and it was something to distract me for the year.  But I do like doing it and id love to pursue it... terrifying as the thought is!  At the start it was to help with supporting the guys I speak to with prostate cancer, but the more I've gotten into the course, the more I think id much rather work with adoptees and other people with strong attachment issues.  It's the dream, but like I said, no expectations.

Thanks for the kind words about how I'm going with it all.  It really does help to hear it every now and then.  It was my partners birthday a couple of days after I got the email saying I had been selected as a finalist for the lived experience award.  Her parents took us out for dinner and she told them I was up for an award.  The reply was just a "that's nice" and back to talking about themselves.  I was feeling really excited about it, and even a bit proud of myself.  But with those two simple words it was like popping my little bubble.  My family weren't interested in anything I've done, it even my cancer and so it was just instantly like "oh yeah, this isn't important.  Nothing you do is worthwhile".. I sort of get angry with myself that I let experiences like this make me dismiss myself so quickly and easily.  I know why I think this way, and I've tried so much to change it, so it's so frustrating when it still happens.  But I am proud id what I've done and excited about being chosen as a finalist, it would just be nice to be able to share it with family and get just a little bit of recognition from them.  Maybe it's always the things we can't have that we crave the most.

The long run is supposed to be 72km in the month.  72 representing the number of men diagnosed with prostate cancer each day in Australia.  I tripled it this year so I was really proud of myself.  The gym where I did it using the bike gave me 'member of the month' for some reason so that was nice.  The team just combines everyone's distances and funds raised to give a team total.  But you also get a team page so people can donate directly to that.  So I raised around $4200 and the team almost made $10k.  So we did really well.

Good luck with your seven bridges event.  What a nice way to honour your friends sister.  It must have been so devastating for everyone involved, especially the kids.  It's so important to do what we can to try and prevent stories like that happening in the future, or at least reduce them as much as possible.  When you think about all the people that die from cancer each year, then add the amount of people affected by each one, it's a huge amount of people who suffer.  So I'm always so impressed by people who give time and effort to trying to make a difference.

I remrmber you saying now how this position you started was advising the health district rather than talking to survivors directly.  I know talking to clinical people through my own experiences that so many of them do appreciate hearing from someone who been through it and feel that can learn a lot about how to better support the people they work with.  So it will be great if you can eventually start talking to the people on the "front line" as well.  I've don't quite a few studies and workshops about developing it improving care models, and finding gaps and unmet needs people feel they experienced themselves.  So it does seem to be something taken very seriously so I see it was a way to help a lot of people by improving the care given, but I also feel that it's important going directly to the people who support the people who need it.  I've also spoken to some researchers who say they spend all their time in a lab and don't get the chance very often to hear from the people their work benefits the most.  Not just through clinical trials for example, but just to hear how appreciate people are for the work they do.

Without knowing much more about your role, I feel like it would be something I would love doing.  How are you finding it!  Any word yet about taking to the health workers?  I know, as you say, these things can move very slowly.

I find a similar thing with my MH.  When I'm busy doing things in my life it is generally better.  I think it keeps me distracted and so I tend not to dwell on things.  The worst times for me mentally is when I'm home alone and don't have much to do.  It if something upsets me, then I get demotivated and I struggle to want to do anything... so them I'm sitting home alone with nothing to do and it can just go downhill fast!  Itssuch a fine, and very tricky, balance to maintain.

I know what you mean about feeling like you're failing.  It was only about a month, maybe a bit longer... I'm not sure as time seems hard to gauge these days... But I decided that I am doing a lot with my life that is positive and not just letting my mental health completely get in the way of life.  I think I'm doing okay all thing considered.  But I also think it's normal to have bad days... even a few in a row.  It's hard, especially when you have to deal with so much on your own.  So I allow myself now to not feel like I'm failing when I'm struggling a bit mentally.  I even just allow myself to feel whatever I'm feeling at the time.  Not see it as something I need to stop happening.  I've found it makes me more resilient now and be kinder to myself.  I feel like you're in a similar spot in that you've have had a LOT to have to deal with.  It's okay to have those time when it feels to hard, because it is hard... real hard!  So it's not a failure to feel it, just a normal part of living with trauma.  We have enough to deal with without putting a bit more on ourselves.  And sometimes we just need reminders that, yes, we're dealing with a lot, but on the whole we're doing as okay as we can.  I see failure as giving up completely and letting it consume us... not having times when we feeling like it's getting a bit on top of us.  I decided to accept that is a part of the process and I'm doing pretty well at it.  I think you're doing amazingly well.

Sorry to hear you've been unwell, hopefully you're feeling better now.  It sucks about being discharged.  I've had to deal with that with a psychologist and it really got me down for quite a while.  It doesn't help with over mental health for sure.

As for me, another PET scan this month.  And nothing can be done until there is evidence of clinical prgression, so that's fun.  I just have to keep waiting.

[Till23]

Hi @MJG017 - no need to apologise for delay in posting. Neither of us are on forums much these days I think.

Wow I'm surprised to hear about MS society going into administration. So your partner needs to find another job?

With peer work it's more usually one-on-one situation isn't it rather than in front of a group etc, so that sounds a bit easier. Not that it's easy but maybe better than speaking in front of a group

Interesting that you are pivoting to adoption issues. Will you continue your cancer support groups?

I think you should feel proud of yourself, I feel proud of you.

Never say never.

Many or actually probably most people who don't have experience with things have no idea.

I often find people like talking about themselves. I spoke to a friend on the phone last night and I could hardly get a word in.

It is such a blow though when these things happen. If you already have self-esteem issues it can really put a dent in you.

Oh wow, that's fantastic fundraising @MJG017 - you should be proud of that as well. Do they ahve an overall leaderboard for fundraisers. You must be right up there.

For the 7 Bridges, I am walking for my Dad who as you know passed away from prostate cancer last year. The other team member is walking for her sister.

I ahve a stupid cold so haven't been able to do any training, which is not good.

We also have a breast cancer celebration at my sport club in two weeks, so that is consuming my time.

1 in 2 people in Australia will be affected by Cancer. Just for breast cancer it's 1 in 7 women. So yes it's a lot of people. Trouble is of course, as you know, there are a lot of other medical conditions that people die too early from. At least cancer gets air time unlike some other diseases.

Yes, my Lived Experience stuff, I think they were directed by NSW Health to have LE people. I really feel they listen to what I say. They say they learn heaps from me. The people I am talking to are leading education programs so it will be disseminated to a range of health care workers. It's a bit different for CSA becuase there are no clinical trials.

We are very much at the beginning of the engagement, so it will take quite a lot of time. It's a very different situation to cancer. There is so much stigma and shame around CSA and MH that it's a different kettle of fish.

I am finding it difficult without work, because there are more opportunities to ruminate and there is less structure to my week. I fill up my week, but it's different to working. I have something on almost every day of the week, so I leave the house 5-6 days a week, but it might just be a few hours, rather than the whole day.

Yes, I try to get out and have social connection and even try new things, so I haven't given up. I've always kept going with things. Throughout all my treatments and even after suicide attempts, I've kept trying to go forward. I feel now that I might be a bit worse MH wise because of the years of working full-time with pretty major MH issues and trying to look 'normal" so heaps of mask wearing. Now I have 'time" to work on MH. I am grateful that I used working as a coping mechanism, because I could have use more problematic coping strategies.

I currently have a pretty bad cold which is not helping, but that's just temporary.

The discharge is quite hard because when this psychologist took me on she knew the situation, so I actually don't understand it, but nothing I can do.

At least there is no evidence of clinical progression, so that's actually the best outcome.

I've got to go now as clocks going forward for daylight savings and I have to get up early for training.

[MJG017]

Hi @Till23 

The MS Society thing was a bit of a shock, but hardly a surprise.  It's been running itself into the ground for quite awhile.  They almost folded once before and MS WA helped them out, but they gave up when they weren't listened to and not much changed.  So it was ultimately inevitable.  My partbwr has already had one I tervire and another this week, both from being contacted from recruiters, so she'll be fine.  It will probably mean a slight pay cut as she was paid more than her postion would usually pay so it was nice while it lasted.

Peer work can be one on one with a client working with a peer worker, but it can also be facilitating a group.  I thing paid roles would be more one on one.  I'm not sure id ever get a paid role, but that's not what I really went into this looking for.  Funnily enough, it was to help me with running the PC support group, but if I had a choice now, it would be with adoptees or other people with attachment issues.

I think it's just after 2 and a bit years supporting other men with PC, I'm just exhausted from congratulating people who had surgery and then get the all clear.  Don't get me wrong, I am happy for them, but it takes a toll when that's what so many of your conversations are.  I'm not sure if it's a 'guy thing'... I suspect it has a bit to do with it, but the support groups, and guys who want to engage mostly seem to be ones getting good news.  The ones who are stressed seem to be the newly diagnosed ones.  If yhers bad news after that they seems to disengage.  If it progresses, they seem to disengage.  Until most you talk to are the ones that have been told they appear to be cancer free.  I didn't mind it to start with, because I could also help the ones who weren't doing so well.  But as I xo tinued I found the numbers of the ones with advanced cancers were vastly outnumbered by guy who were doing well.  It's hard enough having so much cancer related stuff going on in my life.  It takes a toll after a while, and using that energy just congratulating people, or telling people there's good reason to be hopeful when they say they've just been diagnosed with low grade or no spread outside the prostate just gets so difficult!  If there was some of that support coming back my way, or at least some recognition that some people have it so much harder.  Even in our group, most of the guys who have had bad news disappear.  The group is mainly guys with undetectable PSA levels now.  It's just hard to be around, especially without much support for myself.  I have my partner, and I'm lucky enough to have a good friend... and my current psych for support.  Even though I can only get in to see her about every 6 weeks.  No family support.  It's just hard.

The adoption trauma and the attachment stuff though, I've deal with for 55 years, starting from before I was even born.  So it's ingrained in me.  I've kearnt so much the last couple of years because I've started to open up more and talk about these things, and get help.  It's all helped so much and I think I can help other people who are where I was couple of years ago.  I also want to help other guys with advanced PC, but finding ones who want to reach out isn't easy.  I see it as a personal failure that hardly any of them have stuck around from my own group.  So I really hope I can work out how to change that.

So I think I'm at a bit of a crossroad. I finish my course this year, and then I'm going over to WA in January to visit that friend I mentioned... which I'm really looking forward to.  But after that, I really don't know what is left for me to do.  The last time I spoke to my psych, and my adoption counselor, I talked about this.  After talking about it from different pla rs with both of them I came to the conclusion that so much stuff Ive been doing... It's all to get recognition from family.  Do something to make them proud of me... even notice me.  Even just a simple "well done".  But there's nothing but disinterest... I'n my health and all the things I've achieved the last year or so.  We had dinner with my partners parents last week and she told them I had been chosen as a finalist for an award.  The reply... "That's nice." No "what was it for? or "when do you find out if you win?"  Nothing.  Just the two words then continued talking about themselves.  I think it probably explains why I never feel like what I do is good enough.  I keep looking for that recognition from family who will never give it to me.  So there's that 7 or 8 year old MJG017 inside me who just keeps doing more and more trying to find that one achievement that gets noticed by them.  Or it could just be me being grumpy and feeling sorry for myself... who knows.  Anyway, so when I say it means a lot to hear someone say they are proud of me, I hope this helps to explain why it does mean so much to me.

Therewasa leaderboard for the fundraiser.  I finished inside the top 30 and put team inside the top 12, so I'm really proud of the team and what we achieved.

Yeah there is a lot of diseases out there killing people that don't get the attention they deserve.  Even inside the cancer world, there is no national screening program for prostate cancer.   Which is just baffling!  I can only imagine how people with more "less visible" or "ignored" conditions feel.  It seems if you get some life threatening illness, the time you can get can come down to what is available for your condition.  The more funding certain condition get, the more options you will probably have available.  PC for example (only because it's my expert subject 😁) doesn't yet have any immunotherapy available here unless you have a LOT of money or find a clinical trial.  Anyone would like to think they'd throw everything including the kitchen sink at them to save their lives or buy more time, but that just isn't the reality.  I feel like even with trials, you have to go and do a lot of the research for yourself.  People (including researchers) have told me "your oncologist will know what's available.". I'm not so sure.  I was told there was nothing, but I've found one that seems like I'd be perfect for.  As long as my next PET scan still shows nothing.  The trial.is for people on the receptor inhibitor hormone therapy drug I'm on, with 3 consecutive rising PSA tests and no clinical display of progression.  So as long as the next test in a couple of weeks shows nothing again, then I will ask him about it.  The trial is about bi-polar ADT.  Basically they give you a jab of testosterone every month and the belief is that it can resensitive the cancer cells to it, increasing the time the hormone therapy drug I'm on will be effective.  I only lasted 6 months before my PSA started going up again.  So if I can get some more time out of it, then YAY!

I wish I could help out with your fundraiser.  Maybe I can just make a donation to the event itself... Or give something to a random participant.  I know it all goes to the same place ultimately, but I'd love to donate directly to yours for not only everything you do, but also as a thanks for all our chats which I get so much out of... even if a lot of it is me complaining 😁 

I know too well the stigma and shame surrounding MH, I can only try to imagine what it's like for CSA.  I don't imagine there's that many people who will use their lived experience to try and help others like you try to.  People tell me how amazed they are that I'm so open and honest about talking about my own cancer experience and how difficult it has been, but it feels like a piece of cake compared to what other people have had to live through.  I can see why these people you are talking to listen to you.  I'm not sure they would get the chance to hear those sorts of insights very often.  So it's my turn to say how proud I am of you doing what you do.  I can't be easy!  I get how it can be a way of healing for you as well, but it still doesn't make it easy.  I'm sure I don't need to tell you, but look after yourself as well and make sure it doesn't start to feel overwhelming as you continue.

I know what you mean about having time to ruminate without full time work.  My timetable probably isn't as full as yours but I have things most days that don't fill those days so it leaves lots of time in-between to just think.  And that's when things can get a bit on top of me.  The busier I am, the less I think about cancer, then better I feel mentally.  Obviously doing so many cancer related things may not have been the smartest decision, but there's the adoption stuff and if course my peer work studies which give me a bit of balance.  You seem to have a bit of a variety as well.  Especially with the sport.  I miss those days when I played a lot of sport and just the social aspect of it.  I found when the game was on, I seemed to forget about my usual stresses and anxieties, especially the social ones.  Do you find that as well?  Maybe my competitiveness just over-ruled them 😁

I feel like one of the biggest turning points for me during the past couple of years has been to decide that the masking had to stop.  Id done it my whole life and then I got cancer and all those people I had tried to please or be 'happy" around or just tried to be what I thought they wanted was all for nothing.  The first time in my life I needed them, they were nowhere.  So I gave myself permission to stop.  It was like removing a massive ball and chain I had been dragging behind me my who life.  I still do it if course, it's had not to use a skill that has been honed and perfected over decades of constant practice, but if I do it now it's because I choose to.  And sometimes I chose to be open and honest about how I am feeling.  I have to trust that person of course.  But stopping the masking has allowed me to find people I trust.  It's not a huge list.  But even 2 people is more than I ever had before.  So my advice is keep avoiding the masking as much as you can.  I know all to well how it feels like it helps, but we both know it doesn't.  We both deserve better than that.

I can't really understand you being discharged by yout psychologist either... anyone would be.  I think some of them just don't have them understanding they really should.  You can learn all the theory you want, but some things you just can teach!  Like empathy and understanding situations from other people's perspectives.  I'm sorry that it's something you have to deal with, and I know how difficult and confusing it can feel.  As much as I hate the saying about one door closing opens another, it can apply here.  I had given up on psychogists but after a few months I tried again with someone who I thought might understand and not tell me to "go away" and I'm so glad I did.  So hopefully this just means you can find someone who will show you the respect and understanding you deserve and can do a better job.

Apologies for any typos, big and small.... It's late and I'm doing this on my phone and that never goes well.  I hope your feeling better, with your flu and mentally.  Now it's taken my so long to get this far, that it keeps giving me authentication timeout errors!!!!! So I better post now before I lose everything. 

Edit: Luckily I just copied and pasted everything before I clicked POST because I did lose it all.  Thank God for copy and paste!

Take care and chat soon hopefully