Coping with life's difficulties

[Till23]

Hi @MJG017 

Yes even though Dad had an elevated PSA it did plateau for a long time like a year or so. For quite a while he had levels over 25 and in the last year was in the hundreds. Dad's did decrease after initial treatment and the again after another treatment.

I am not worrying about my scans and would be very surprised (but not shocked) if anything showed up. Well I expect to see hot spots in lungs because they were there before, but I don't think they will have increased because my respiratory symptoms have actually decreased. I increased my exercise to try an maintain as much lung function as possible (this is not cancer but that inflammatory condition I also have), especially since the disease can progress.

That's great feedback from your course, I felt from the way you write here and your understanding of things (from reading your posts) that you would have done a great job on any assignment.

Yeah, I think a lot of people who've had something bad happen in their lives want/need to have a positive aspect (and kind of outcome from it).

$1600 is an excellent effort - I did not raise much more than that I think the most I've ever raised it not quite $3000. I really don't like having to ask for money either. It's a bit easier with online, but I sold $300 worth of raffle tickets for my sport club two years ago and that was hard, it was by far the best effort fro raffle ticket selling in the club though.

I raised more money when I was working because I could tap into those networks and I worked in health care - so people probably knew about how little funding there was for some things.

On the Mother's Day Classic site they say the average raised is $500. I'm just short of that at the moment, so will have to re-post on Facebook and Instagram. I am doing less fundraising this year because I don't want to make my friends and acquaintances poor! I am very grateful for what people donate. Also now that I've got more time I want to "help out" differently, like by giving time or experience etc as fundraising is really difficult if you don't have large networks (and especially rich ones!!)

That's absolutely terrible how that teacher treated you for the school bus fundraiser. Of course that would be completey unacceptable now. Mainly I think because of awareness, no body talked about the different types of trauma back then and even if some people possibly thought that it could happen, everyone thought that kids got over those things. Now most people realise the complete opposite is true for both of those. I think we have somewhat swung too far with kids "graduating" from kindergarten and getting prizes for so many things, but at least there's the possibility that kids who don't fit some pre-determined role will have some sense of achievement.

I really need to look more into these volunteering roles. I do 5hrs on one day a week at a kind of drop in centre, where disadvantaged/homeless people get a meal, a coffee and/or a chat if they like, and can be linked in to other services. No surprise that many, if not overwhelmingly most of these people have MH issues.  I feel as though I'd like to do something else if possible, but my pschologist says I have to be careful about overdoing it, which I know is true as well. I'm also thinking of doing something different that has not impacted on me so much in the past, so it has less chance to impact my current functioning. I think it's hard to find the right line and especially if you don't have much in the way of your own supports.

[MJG017]

Hi@Till23 

Another reply that's take me a while to get around to.  This week mainly because my teleconference with the overseas rad onc didn't exactly fill me with hope and joy.  He basically said that with the aggressiveness my cancer has shown with becoming resistant to both hormone therapies within 6 months each, standard chemo is very unlikey to have much benefit.  On top of my slight anemia with lowish platelet count I probable wouldn't tolerate it well anyway, especially in the bones.

So he suggested l****, insanely expensive... especially after it was approved for inclusion on the PBS (only as a last resort treatment though).  Or getting a next generation sequencing / whole genome sequencing done to look for a mutation that may respond to immunotherapy.  He also suggested a FDG PET scan to see if there in cancer there that isn't PSMA avid.  Something I've asked for a few times but have just been dismissed. 

So it sounds like my only two chances are massive 'hail-marys!'  But hope is hope I guess. My GP, who organised this tele-consult has made all the noted in a letter and has sent it to my oncologist, who i see on Thursday.  So if he's not responsive to the recommendations and wants to continue with 'standard practice' then I think I will have to go and see someone privately and just have to pay whatever it costs.  But I'm just waiting for the appointment on Thursday before I start thinking any further ahead.

So that's been my week!  Oh, along with catching up with a member of my support group because after a 18months of battling prostate cancer, (undetectable PSA for 12 months now) he wife left him, telling him she wanted to do it before but he had just been diagnoses so she waited.  With everything, and the role-play assessments this week to finish of Unit 1 of my Cert IV it's a lot of stuff going on.  I've submitted all my assignments but I haven't had any graded yet, so who knows how ready I am for these role-plays!  They're on Tuesday and Wednesday.  I'm hoping we can do them in 2 days because there is a third on Thursday but I can't make that because of my oncology appointment.  I'm just not sure how mentally i'm prepared for it though.  My head's a bit all over the place.

I guess it would be easier to fund-raise when you're working and have that network to ask.  As long as we do the best we can I guess that is what matters.  I assume the people that raise 5 figures have some generous business contacts... or wealthy friends.  Or are just good at promoting these things to a wide audience.

I hve the same problem this year with the long-run.  While I was very pleased with the result I got from the few friends and family I have, I know I can't keep asking.  So it means I can't do much else and i'm not even sure how many will give again this year, assuming I'm in a position to do it again this September.  I can only ask them so many times.

I know we have a better understanding of my sort of trauma and it's effects these days, but i still think it's not know anywhere near as well as it should be by people where it probably matter the most.  I'm thinking by these unemployment consultants that pressure people like me to do things that only makes things worse, teachers, and even psychologists.  Especially when the trauma is based on being adopted! But that's a personal rant and i'll be here typing the rest of the day if i got started.

The other prostate cancer 'consumer' that I did the Cancer Council cancer connect training has volunteered with them for quite a while.  He is a concierge at Greenhill Lodge (accommodation for people needing treatment in the city).  He says he does the morning tes for them and hings like that and sits and talks with them.  I thought that I would mind doing that, or even the driving between there and the hospitals.  But i'm not sure it would just be taking too much on now.  At some point I have to start thinking about myself a little bit.  But the short the time I feel like I have, the more important it feels to do as much as I can to help other people.  Maybe I just want to feel like I did something important at the end, maybe I need to feel like I wont be forgotten.  I'm not sure.  I've booked in to see a clinical psychologist at a cancer specific care organization.  They gave a talk at our group last year when I was having issues with the psych I was seeing and I thought it sounded a lot more understanding.  I just know I need to speak to someone and I have the 10 MHCP visits again so that's my plan at the moment.  I also have 6 free Cancer Council counseling sessions available to me.  I knew about them for quite a while but the way my situation was going, I thought I'd save them for when things got desperate.  Then I found out with that training that your 6 free visits reset if you're cancer progresses.  So probably a good idea to use them now while i'm still technically stage 3.  Becoming castration resistant is a reset i've already missed out on.

Well i've banged on about myself for far too long.  I think it's awesome that you volunteer at that drop in centre.  I've though about similar roles myself.  Because I think a lot of these people must just feel like no one see them at all.  My partner's brother works for a local council.  At a lunch we had the other week he was talking about trouble they have moving homeless people on from camping in the parks.  I don't say much at these family things but I couldn't help myself.  So I said "so you just move them on so they're someone else's problem?!"  He looked surprised, but nodded and said "yeah".  So I asked him "What are they supposed to do?" and was told "there's places that will help them."  When I asked about how many homeless people can even access this help the conversation magically changed.  I just don't think people understand how easy it is for people to find themselves in this situation.  It's not all just down to drug addiction.  I think it's more of a symptom than a cause.  Mental health I would thing is a big part of it.  Especially if you don't have much family/friend support around you, which seems to be more common that people think.

It is so easy to over do it once you start getting involved in trying to support people.  Then you get a better idea of the systemic and societal challenges they face and just want to help more.  It's a big hole that's so easy to fall into.  You forget about taking care of yourself and focus all that time and energy into others.  I tell myself it's because it helps me so much, but i'm starting to see that it has it's cost as well.  And that cost can start to become very high.  I'm beginning to wonder if it becomes and addiction... like it's own coping mechanism.  We know we need to take more care of ourselves but we find that we are always looking for the next thing to take on.  Saying I can handle helping one more person or service.  Maybe, like everything, i'm over-thinking it.

[Till23]

No problem @MJG017 I know you've had and still have a lot on.

I am sorry the news from your telehealth appointment was not positive. I imagine that would have been very disappointing, although I think you weren't that positive going into consult.
Don’t answer any of these questions if you don’t want to of course, just say I’d rather not say or something like that.
Has your case been to a multidisciplinary team meeting do you know? That’s where a team of specialists discuss your case. What hospital is your treating centre (RAH, Flinders etc)?
A FDG PET scan just shows metabolically active cells, so your brain and heart always “light up”. I didn’t know there was something you could use specifically for non-PSMA cancer cells, or do they do both and compare them? Have you had any of these PET scans before?
Immunotherapy has been successful in breast cancer, I’m not up to date on prostate cancer, but theoretically should be similar.
I noticed you hadn’t been on the forums much and I thought I’d leave it to you to decide what you wanted to do, but I was thinking of you and once the day had passed and I didn’t see you on I thought it may not have been positive news. I hope it was the right thing to give you space.
I’m always here for you and as you know I can chat on forever. You are a very interesting person as far as I’m concerned, and actually, I draw strength and inspiration from your strength and inspiring work and life. You probably don’t think you are (I feel similarly when people say things like that to me, so I suppose due to attachment traumas we have some similarities, but that may be overreaching) but you definitely are.
Do you know what subclass of Stage 3 you are currently? Do you know why you have anaemia and low platelets is that a side effect of medication? Those older types of non-specific chemotherapies are hard on everyone, I have a friend with Stage 4 ovarian cancer whose having one of the older types and it’s hard, hair fallen out etc. Pretty much if you look up bad luck in a dictionary she’d be the definition – teenage son (only child) died in an accident at a school excursion, husband cheated on her and left her, diagnosed with melanoma, survived that to be diagnosed with breast cancer - twice, survived that, to be diagnosed with ovarian cancer (stage 4 at diagnosis) last year and still going to a big regatta with us in September.
I’m crossing my fingers for you for Thursday. Don’t give up hope though, as you can see from above friend there is always hope. Also, you can get a second opinion through the public system unless you want to specify the person, and they don’t work in public system.

I have started my FDG-PET scan ketogenic diet tonight. I’ve got my scan on Monday morning. I’ll have my respiratory specialist after easter and then mammogram and ultrasound and then surgeon, who for some strange reason is actually my cancer case co-ordinator, and then medical oncologist. I have been discharged from radiation oncology.

It’s so good you are doing the Peer Support Cert IV, I told my psych about wanting to do it, she told me to wait for a year from retirement. I worked in healthcare, and she’s worried I’ll start looking after everyone else and not myself. I was pretty burnt out when I retired. Can you let your TAFE support people know you have an oncology appointment on Thursday and maybe get special consideration to delay the role plays, or at least be first up? I’m not sure how it works.
Absolutely nobody will be expecting you to function at your best just prior to a pretty significant oncology appointment.

People who work in education and healthcare are way more trauma informed than they were even a couple of years ago. I think the employment agencies sort of don’t care, they’ve been privatised haven’t they? So probably get some sort of payment based on how many people get jobs – I’m not sure how it works, but I wouldn’t be surprised if that’s what happens.

Yes, that Greenhill volunteer role does sound good, I’d be up for that. However, for you, yes you definitely need to look after yourself. Look what you are already doing (that I know about); Support group leader, student of Cert IV, fund-raiser, cancer advocate, dealing with physical and mental health issues, being a partner, assisting people on the forums. My psycho-oncology psychologist was very good, and I would recommend her to anyone although she works in public system. I think at this stage of uncertainty for you, an oncology specific person would be a good choice. It’s good if you find someone you really click with and can keep seeing for a while, so you get that continuity of care, and you don’t have to tell your story all over again. I get really annoyed at the 10 sessions a year for MH treatment. Imagine if people only got 10 sessions of oncology subsidised. Initial consults, couple of radio sessions then you’re on your own? Who would allow that to happen, but MH is somehow not as important. I know the physical illness situation is not perfect, such as drugs not being fully funded, but it’s still better than for MH.
MH is the most common cause of homelessness, and many other things people like to not notice. It’s a cause (not necessarily the commonest) of alcohol and other drug abuse, incarceration in prison, being a victim of crime. However, we don’t fund treatments, early interventions etc etc
Well, I better get to bed even though the clocks go back tonight, I still have to get up early for sport training which actually has been moved to 30mins earlier, because there is a special event on! So I only get 30mins of extra sleep. However, getting up at 6am on Sunday is still hard (even though I’ve retired now) at least there will be virtually no traffic.

[MJG017]

@Till23 

I'm just off to bed myself.  But i just read your post and wanted to thank you for it, it meant a lot to read it right now.  I'll reply in full hopefully tomorrow but I can quickly answer your questions now.

I know there are multidisciplinary team meetings between my medical oncologist and GP.  I have no idea what they talk about, i've certainly never been told.  I have been told that oncologists have meetings together to find get some extra information on their patients.  Again, not sure if my MO as ever discussed anything with anyone.  We certainly have quite a bit to discuss on Thursday though after he reads the letter from my GP.  Apart from nurses, I only see the GP and MO.

I'm being treated at Flinders through public.

Yes, the FDG shows metabolic activity in cells, but is useful to find cells that don't have PSMA.  It's not overly helpful because without the PSMA there's nothing for most treatments to target.  But it does show you that it's there and possibly okay for targetted radiation like stereotactic.  But i'm not real sure.  I think the do do both PETs and compare them.  The note in my letter going to my MO say that... "Double tracing scan (PSMA and FDG PET scan) as a small proportion of prostate cancer is likely to show up on FDG scan instead of PSMA PET scan. Mxxx is due to have repeat PSMA but has not had FDG scan performed in the past."

I had a PSMA PET before my biopsy at the start.   It showed nothing from what I was told.  My PSA was 18 on the initial blood test that got me referred to urology.  If it was rising like it was after I became resistant the the ADT (doubling once a month) then it could have been 30-40 by the time I had the first PET.  I had another one in March last year after being referred to the MO.  The first thing he did was send me off for the PET, CT, and full body bone scan.  PSA was 4.5 at the time, all came back negative.

I suppose my mindset at the moment is that i'm a candidate for immunotherapy.  I've heard that it has had a lot of success with breast cancer but that it's still very new with prostate cancer.  The same as a drug they've discovered that can target a K9(?) protein which seems able to disrupt cell growth in treatment resistant cancers.  It's been tested with therapy-resistant acute myeloid leukaemia but shows good signs with prostate and breast cancer i think.  I'll find a link...  https://www1.racgp.org.au/newsgp/clinical/promising-new-treatment-for-incurable-prostate-can

It may just be a bit early on to be much help for me, but you never know.

Thanks again, and i'll reply in full later.

[MJG017]

@Till23 

I'm not really sure of the details of my subclass of stage 3.  I've seen it written somewhere but I had a look and can't remember where I saw it.  The anemia was an issue a few years prior to diagnosis of the prostate cancer.  I had a few tests to see if i was losing blood from anywhere.  iron levels were fine, but the hemoglobin levels dropped just below the threshold about 5 or 6 years ago.  It stabilized just under so they never worries ant more about it.  From the conversation with the specialist my GP has got me to get some B12 injections to try and improve those counts.

I haven't been on a lot here recently.  I've just really been keeping to myself a lot.  You'd think i'd be used to the constant bad news and shrinking time frames, but i never gets easier.  It's just that with each one there's less and less options available.  Now a main one (chemo) is apparently off the table and if immunotherapy isn't an option then I'm not sure what else is left other that waiting for the inevitable.  It was a lot easier the past couple of years when I knew that if a treatment failed, there more more options.  Things just feel really desperate now.  Desperate enough to pay $650 for a 2nd opinion.  Obviously expensive but the money doesn't seem relevant at the moment.  Other than the fact there's not enough for something like Lutetium177 if I have to pay $100K.

I guess my go-to reaction when stressed is just to withdraw.  So i guess that's why I haven't been around much since the news.  I just find it difficult to build up the motivation to do much.  But I have all these responsibilities now, steering committees, study, support groups etc which make it very hard to stay distracted from the cancer side of things.

I'm no sure anyone has said they've drawn inspiration from me before.  It's such a strange concept to even thing about for me.  It's probably the attachment issues telling me it's impossible for that to happen.  Why is it still so hard to take a compliment?!  That internal 'programming' is so loud and difficult to ignore. 

But it means a lot to me to hear and I do enjoy our chats a lot as well.  While i have changed a lot over the past couple of years and opened up a more (it was never exactly a high bar to exceed), I'm finding it harder and harder to talk to people about this as it gets worse.  Just telling people you have cancer seems to make a lot of people disappear, or stop talking to you (or at least about the cancer).  The worse the situation gets, the more hesitant I feel to bring it up with anyone.  So it feels so much easier with someone who has been through it and is happy to talk about it... and very knowledgeable.  It's so helpful for me to have that, and i could say the same to you as well about drawing strength and inspiration from what you've dealt with and how you've turned them into strengths by trying to raise awareness and support people in all the ways that you do.  It's certainly helped a lot to keep me focused on those aspects of my life that past month or so.  I'm not really sure how long it's been... it feels like years with everything that's happened recently.

Well, again... I hope everything goes as expected with your appointments coming up.  I assume there's always some anxiety there.  A guy in our group who i've been chatting to has a PSA test next week.  He's been undetectable for over a year but is still very stressed, which is understandable.

My GP said the same thing about being concerned about me taking on the study.  I told him how much getting involved in supporting others has helped me through this and he agreed that it was probably okay... with the usual warnings about thinking about my own well-being as well.

I'm doing my course at Relationships Australia SA.  I went with them because they've been so helpful with my adoption counseling.  They've been really supportive so far.  I told them everything when I enrolled last year.  I talked to me lecturer about having an oncology appointment of the 10th, the final assessment day.  And she told me not to worry about it.  If we need the 3rd day, i can arrange a time to do the role play with her one on one at a later date, so there's not issues there.

I know the basic chemo drug of choice for prostate cancer is docetaxel.  A few guys in out group have had it and tolerate it quite well.  For me though, it's more how ineffective it's likely to be that concerns me the most.  I  may need to have one dose just to qualify for other treatments that require stage 4 and at least 1 does of chemo.  Lutetium is like that.  Although it's only subsidised as a last resort treatment.  Which tends to only buy people 4 or 5 months after chemo is not an option.  A lot of studies not indicate it can be very effective earlier on.  The PCFA used my story in a campaign a couple of months ago to raise funds to complete a study to show how effective it is as an early intervention treatment... and hopefully get it subsidized for that as well.  The irony isn't lost on me at the moment.

That friends of yours does sound like she's had more than her fair share of bad luck.  The fact that she's still doing the things she is is full credit to her.  I guess none of this would hold any fear for her anymore though.  It doesn't make it any easier though.

Yes, those employment places are all privatized now and have been for quite a number of years.  They generally only care about one thing.. making people do activities so they get paid bonuses for them.  Obviously getting them into a job pays well.  But the downside is they will try to force you into anything whether it's suitable or not and put massive amounts of pressure on people.  Which obviously is less than helpful for people with mental health issues, or even just self-esteem issues.  They often make arrangements with local employers (often outbound call centres) to get workers from these employment places for a short period of time.  They get cheap govt subsidized staff that magically are let go after the subsidized period expires and the employment place gets a nice bonus.  I think the govt did up the time you had to have someone employed to get the bonus and subsidy because of this rort a few years back.

Yeah... i think most of us her can attest to the challenges and failures of the mental health system.  It is fundamentally broken in so many ways.  The problem is people don't know how bad it is until they're involved in it.  Then you've magically become invisible to society... unless you put that 'happy face' on.

I hope you training when well.  I have no idea how you're up by 6am on any day, let alone on a Sunday!  You may be able to tell i'm not exactly a morning person.  I'm barely an afternoon person these days. 🙂

[Till23]

Hi @MJG017 I have been busy today and I was on for a little bit of the Sunday chat.

I have to go to bed now and I don't want to send a quick answer as I want to pay your post the respect it deserves.

After my PET scan tomorrow I will try and get on the forums

Cheers until then

[Till23]

Sorry @MJG017 I decided to have a bit of a break from daily forums.

The reason I asked about staging was a way to find out if you have spread outside capsule, and if so, is it local spread.

OK that's "good" about the anaemia, because I wasn't sure if you were having bone marrow suppression from bone metastases. Dad was having regular blood transfusion towards the end because of his bony metastases which were crowding out the bone marrow so there was less marrow to make blood cells.

I understand about the decreasing options, but remember new options keep coming up. Also are you actually up to needing a new option?

I don't think people get used to bad news continuously, many people would probably feel it more and you can get to that the straw that broke the camel's back stage as well, which you might be at or near at the moment.

Yes, withdrawing from others is a pretty common reaction when stressed. Even though, you probably realise at the back of your mind, it's actually not the best strategy. If it's a go to strategy it's hard to realise it's not the best when you're stressed.

Don't forget though, that you can take a break from anything. People will definitely understand. Because the things you are doing are related to a serious illness, it's more likely they'll understand, also you have to do what's best for you. Don't forget on the aeroplane they always say; put your own mask on before helping others. You can't help others when you are out of oxygen.

Yeah, I agree, it's really hard to take a compliment and especially if you've had a low opinion of yourself for a long time and especially if it's been since childhood.

Other people have said that they have had good results from Relationships Australia, but when it comes down to it it's probable the individual therapist that is most important.

It's great that you were able to broach the subject of your oncology appointment with the lecturer.

My friend who has ovarian cancer is at the end of all specific ovarian cancer treatments, mainly because there is hardly any, and is on a docetaxel regimen with good effect and she was stage 4 at diagnosis and as I say had tried one or two others, so don't write off some of these older treatments.

I think people don't want to talk about cancer because they're afraid they'll say something "wrong", they don't realise that often you don't need them to say anything, just to listen. Also, I think people are afraid of any cancer and think that cancer is certain death, which of course is not true and increasingly is becoming less true as treatments and genetics and technology move forward. So if you are or seem to be getting worse, people are even more hesitant to talk about it. Sometimes I would say to people there is nothing you can say that will change anything about the cancer or make me worse. Sometimes I had to actually comfort a few people that I told, because they got upset. Sometimes I would say things to them like, it's ok I am not going to die tomorrow unless I get hit by a bus. And that's just it, nobody ever knows when they are going to die, even those in palliative care. In a way knowing that you might die soonish can give you time to get affairs in order etc etc.

My grandfather was in WW2, served in New Guinea, came home and got hit by a truck and died. There's no way he would have thought he was more likley to die in Australia than in New Guinea.

Do you qualify for sickness benefits, or whatever that is called now, so you don't have to look for work or do courses or whatever you now need to do for unemployment benefits?

You'll be even more horrified to find out I got up at 5:15 am on tuesday morning to do a volunteer shift! I slept in on wednesday morning to make up for it. Then I had to get up at 7:30 today to do another volunteer shift and then I'll be up at 6am tomorrow for sport training! It isn't easy and a few weeks ago I really had to force myself and there's no way I would have taken on the really early volounteer shift. A few weeks ago I was also spending the mornings in bed and would really have to force myself to get up for sport. I am now getting better, but when I don't have anything on I do tend to lay in a bit.

I've had my PET scan, but don't know results yet, which will mean it's not bad because I haven't been contacted by anyone. When I had my brain MRI, I'd only just got home, and they rang me to come back to have a repeat scan with contrast, because they had found something. I still have the "something" but it's stable and not obviously concerning looking, so I just have to note any symptoms or changes in symptoms. I had sudden onset of bad vertigo and tinnitus, which is why I had the scan in first place. I still have vertigo and tinnitus, but vertigo isn't anywhere near as bad. I had a one year follow-up MRI, that's how I know it's stable.

Anyhow I'd better go to bed so I can get up in 7hrs to go to training.

I hope you are somewhat better since your last post and sorry I took so long to respond.

I'm definitely happy to hear anything you want to say and I'm here for you whenever you wish to chat. I logged in on my "forum free" days to see if you'd tagged me, so even if I have another break I'll still do that.

[Till23]

Hi @MJG017 I hope you are OK

Thinking of you

[MJG017]

Thanks @Till23 

I hope you're okay as well.  I'm just waiting at the airport ready to board the flight back to Adelaide after a week in Perth.

It's been so great to leave att the 'life' stuff back home for a week and just enjoy myself again.  It's been soo long since I've been able to do that without being constantly reminded of all the drama.  Being over here, hanging out with a very good friend and her family has been so great.  A bit sad to be going back, but they've probably had enough of me by now! 🤣

[Till23]

Hey @MJG017 good to hear from you

It's great you've been able to get away and have some friendly faces and different places to visit.

Leaving your life behind or sort of having a break from it sounds excellent. I'm a bit jealous.

Hope your transition back to real life is smooth