Coping with life's difficulties

[MJG017]

Hi @Till23 

It's hard to answer how i'm doing.  I'm just not sure.  I just keep doing the things i have to do, like the group stuff and study, and let it all distract me.  So i seem to be able to do these things, and feel okay, not thinking of much beyond what i'm currently doing.  But the quieter moments when i don't have much to distract me it can all so easily get on top of me.  So its a bit all or nothing at the moment.  Either i function as normal while busy or it all just gets me down so quickly when im not doing anything.  There's that thing people say "Don't worry, it's not the end of the world!" but in these quiet moments I feel like, from my own perspective, that's exactly what it is!  I'm really struggling to see any other way to look at it. It makes it so hard to find motivation to do anything.  Most things feel pointless a lot of the time.  Which worries me.

The complete lack of support, or even interest in asking how i'm doing, from family just makes it harder. I have two people I can talk to when i'm feeling down.  But at the same time, being only two people it feels unfair to dump everything on them and I find myself holding things back... to protect them I guess.  Don't get me wrong though, I do fully appreciate having them both in my life and knowing that I can talk to them, and most important... I know they do worry about me and want to help and support me.  And they can get me out of those really low times when I need them.  Just by chatting to me and being there.

It certainly sounds frustrating not knowing why the ultrasonographer looks at those images for so long.  I know they really can't really say much.  But they must be aware that we definitely notice things like this and our minds will run with it.  Surely they could say something.  Even if it looks like something that needs further investigation, just tell me!  I get so frustrated when they just say nothing and leave me wondering.  I really do wonder at times like this if they have any understanding of how much stress and anxiety it can cause.

I had a similar thing after I had a test done.  I was told they would call if there was something to be concerned about.  I was so anxious hoping the phone wouldn't ring.  It did!  But it was just one of those scammy telemarketers asking me if I had solar panels!  I've never been so happy to hear from one of these people! 😀

Picking up the ashes must have been hard.  When our cat died a few years ago, the vet said for a few extra dollars they would take the ashes and spread them in some nice place they had for this.  We did this, because neither of us could face picking them up ourselves.  I still see her lying there on the floor where we find there and having to pick her up and take her to the vet.  It's been 4 years and it's still painful to remember.  But I do wish we had something of her here now though.  I think it would be a nice way to remember her.

[tyme]

Thinking of you @MJG017 .

Please know you have an entire community here for you.

Have you ducks been around at your place? 

[MJG017]

Thanks @tyme 

The main problem is, and I don't mean just here, that a lot of people find it uncomfortable to talk about, especially when the prognosis isn't looking overly positive.  So i've tried to be selective about who much I talk about it.  I've always been happy to share everything, but without assuming everyone wants to hear it.  It's a tricky balance.

The ducks have been staying around since the end of summer.  I'm not sure if their nesting somewhere nearby because they seem to be around a lot, and hide in some bushes near the pool.  That usually means they've moved in for the time being.  There's doesn't seem to be a set time that they have ducklings.  I'm not sure they know what season it is anymore.  We had ducklings in the middle of summer a couple of years ago.  If we get some, i'll post some photos.

[Till23]

Hi @MJG017 how are you? 

Sorry for the late response. I have been running around trying to get myself organised for my trip. So kind of resembling a headless chook 😂

I'm glad you are still managing to keep on with your studies and your group support work. I know what you mean about the quiet times. I kind of try not to have any!

I totally understand the feeling of pointlessness. I've felt like that at least since I stopped paid work. I am doing the volunteering and fundraising, but somehow it just seems like a drop in the bucket. Which is kind of why I'd like to do advocacy, despite not actually knowing how to do that!

I hold a lot of stuff back from my family, I'm kind of used to doing that. I have in the last few years said some stuff to friends but I feel guilty about making them share my negativity.

I am feeling ok about my ultrasound now because I haven't heard anything from anyone, so that means there's nothing urgent on it and might be nothing at all.

I still think about my dog multiple times a day, but I have accepted it now. I still feel sad at times though.

I hope you are able to let some light into your life. I know it's hard, but I think it has many positive benefits. Do you feel more down or more anxious do you think?

I just found out today Magda Szubanski has been diagnosed with Stage 4 mantle cell lymphoma.

My friend with ovarian cancer is just about to start another cycle of doxy (aka the red devil) so we'll have to see how she goes.

[MJG017]

Hi @Till23 

I'm... still going.  That feels like a win.  Apart from feeling like a headless chook I hope you're doing okay.

I don't really have to hold stuff back anything from family, they just never ask so it makes that easy i guess.  I do have 2 people in my (offline) life I can talk to and that is so incredibly helpful.  I do hold back stuff with the though.  I totally get when you feel with feeling guilty about sharing the negativity.  I feel like i have to ration it out rather than drag them down with me.  But i'm getting better at it... very slowly... and I'm so grateful having them to talk to when I'm really struggling.  I does have a habit of giving me that 'shot in the arm' to get me up and around again.

That is great that you've haven't heard anything about the ultrasound.  No news is good news.  I had my PET scan last Friday and have my oncology appointment on the 5th.  I talked to my psychologist about it on Tuesday and I said I just feel numb about it.  Either it's clear and there's no spread (but i'm back to just waiting for that inevitable spread) or it detects something, i'm at stage 4 and I can at least have some options again.  Either ways seems good news/bad news.  So i don't know what to feel or think about it.  With a week to go, i can't really say i've thought about the result much at all.  Usually i'd be a bit tense by now, but i just don't feel anything about it.

Which I guess brings me neatly to your question about if i feel more down or anxious.  I don't think i really feel anxious at all anymore.  It's just feels more resigned.  It's felt this way ever since they said there's no more option for the moment.  It just feels like they were trying to let me down easy.  I don't know.  It's just hard to stay positive at all, and any feelings are just sadness rather than worry now.  I'm still doing all the usual things i've been doing so i haven't given up anything, so i'm taking that as a positive.

That's sad news about Magda Szubanski.  When ever i hear about something like that now with a celebrity, my mind always goes to all the every day people out there that just found out they have cancer and how they must be feeling.  I know what they're feeling and I would never wish it on anyone.  Fingers crossed for your friend though.  I don't imagine she's exactly looking forward to it.  I don't know much about it, other than it well deserves it's nickname, and not just for the colour.

I would love to do some more advocacy as well, but i really have no idea how to go about it either.  The stuff I've done so far has always been a phone call or an email from someone asking me to do an interview.  Sometimes it becomes tricky though.  Especially when you get a letter from the PCFA with your photo in it saying look at this poor bloke here... please give us some money for research so no one has to end up like him!  So i just spent the money on myself and cut out the middle man. 😁

[Till23]

I'm glad you're still going @MJG017 and that's definitely a win.

Actually you're right I don't have to hold much back from my family because they don't really ask me. I actually hadn't really noticed that before! My mother actually forgot I had cancer the second time I got it! For me though, the cancer is not my major problem, it's MH. I am fairly anxious at the moment because even though I've been overseas before this seems harder and I don't feel as on top of things. But I can also suddenly go into a low. My psych said it;s because I'm still grieving, which is true but it's more than that.

In a way it's good that you haven't worried about PET result, but in the other is the numb feeling, which I personally do not like.

I can imagine it's hard to keep positive, but it's great you are continuing to do the other things, because it does bring normality to your life and therefore soem connection with other people.

It's funny when I got a text talking about Szubanski, I wrote back lots of people get cancer but you only hear about the famous people. I often have that opinion when something happens to a celebrity and it's all over the media, I think what about all the other people. A good thing that can come out of it of course is if the celebrity uses their position for advocacy.

I like you're startegy of leaving out the middle people and donating directly to yourself, at least you know exactly where your money went 😂

[MJG017]

Hi @Till23 

Yes, I definitely take it as a win at this point.  It does make me wonder though about the position i'm in, when i'm taking something so simple as a win!  When did life get so stripped back to such a simple thing to be grateful for?

Now i'm not saying you need to think this way with your own family at all.  I think the fact that i'm adopted and that i've never really felt that connected to them.  Attachment issues are never fun!  But in my worst moments last year, when i was struggling the most and the fact no one in my family every checked in or even took in interest in how my treatments were going... even if i was on any treatments or hat they were... i decided that they weren't family to me.  Something i still feel today.  I think it just helped to expect nothing from them and not suffer any more pain with their ongoing silence.

I honestly thought at the start of all this that it might turn into a positive thing.  It was cancer.  This was serious.  Surely my family would gather around me.  It might then bring that connection that i'd never felt before.  Well, no apparently.  It did the opposite.  I see and hear from them less now than I ever did.  It's disappointing, and it hurts.  But i've moved on.  I think the hurt is more about wishing i had family around me than being hurt by them.  Last year my mother had a bowel cancer scare.  My sister rang me right after mum had gotten the news that she might have bowel cancer (they seemed certain at the time), she told me it was important that we all worked together to support and help mum through this.

I mean what the hell am I supposed to say to that?!  I honestly don't know if I was more upset about ignoring the fact i'd been dealing with cancer for almost 2 years by this stage, or that I was more insulted by being told I needed to help out like it would have never occurred to me!  

I honestly don't like to think about them anymore.  Which is easy as i spend all day every day trying not to think of things, so adding one more thing to the list of banned thoughts is not huge imposition.

I try not to look to far ahead anymore.  None of that seems particularly happy.  But I also don't like looking back either, even to happy memories.  I think of myself as a child or when i was younger and all I see is some lonely kid or under 40 who thought things would eventually change... they had to!  Someone would see past the quiet, shy other shell and see the positives inside.  Now i just see someone who would never have thought that moment would take until his mid 40s and then it would all go a bit pear-shaped a few years later.  So somehow my mind doesn't think back and it doesn't think forward.  It feels like denial.  I continue to get on with things and occasionally remember what's coming, and i think "how am i ignoring this anywhere near as much as I am?!" I'm actually shocked that I can do it so easily.  I get the mind can do strange things when it has to.

Maybe it comes down to this numbness I feel about so many things now.  I talked about it with my psych on Tuesday.  Especially with feeling nothing about the PET scan results next week.  I don't know if she was concerned about it, but she offered to give me a call the following day to check in and see how I was feeling after that appointment.  Which was nice, she didn't have to do that.  Part of me still suspects a trap when someone is that supportive out of the blue like that.

I know what i am in one of those lows that most things make me anxious far more than normal... even things I thought that I had made decent progress on.  I wonder if it's just the same with you and your overseas trip.  That the anxiousness is just more about your current feelings than the actual trip.  The trip is just what it is finding to latch on to.  The MH side of things definitely takes a toll and can make any situation so much more difficult than it feels like it needs to be.  I remember saying to my psych (which started a longer conversation) that I'm not sure what is ultimately going to get me first... the cancer or the MH!  Some days it feels neck and neck.  I'm sure it just a combination of so many different things.  Like you said, your psych said you're still grieving but you felt it feels like more than that.  I get that.  It's hard to describe, you can pick out bits and pieces but there always feels like there's more to it.

I feel like i did the right thing by just giving the money straight to myself as well.  It mainly went to donuts, chips, and printer filament!  But these were all things than made me happy, so success! I think i may need to donate some more. 😂 

[Till23]

I reckon take every win you can get @MJG017 as you know there are a lot of non-win situations in life.

I don't know if this is helpful or not, but I suppose it is a kind of gratitude thing. However, I often see other people's situations and think, well I'm lucky that my house hasn't got swept away in a flood or burnt down or I wasn't in some terrible accident and lost a limb, or eyesight or hearing or whatever. 

I often think to myself, and more so as I get older, that I'm lucky I haven't had to deal with eczema all my life or other chronic things, especially chronic physical pain.

I often think to myself, well I'm lucky I got to my fifties before I got cancer, or this other immune/inflammatory chronic thing I have.

I can still see the natural beauty of the world, I can still hear the rain on the roof, the wind in the trees, the crashing of waves and the birds awakening me in the mornings. I don't have to wake to the sounds of peak hour traffic going past, or the smell of a refinery or steelworks. I have all 5 senses and I'm independently mobile. I can read and write and speak, so can communicate with people. My cognitive abilities are not bad, so I can make decisions for myself even if there small ones like buying and eating a donut or chips without assistance. I am not living in a war zone or on the streets.

Overall I think I have been lucky in life and I think feeling gratitude for that does help. Even though I did say to my psych that hands down I'd much rather have cancer again, even stage 4, than have these MH issues. I also said that I think I would much rather have been in a concentration camp, than be abused, because at least in a concentration camp, you knew you weren't the only one and there were other people to share the pain. So I haven't completely ignored my own issues, but even on typing out all the things I feel grateful for, I feel a bit uplifted.

The other thing I suppose is that every time I get in my car it cound be the last thing I do, especially with increasing accidents, so really no one knows what their future is going to be. I know that probably sounds a bit dismissive but it's another perspective at least.

People often say don't look back, and don't look forward, just live in the present. Apparently this is a helpful way to address anxiety and probably other things like depression.

I can easily think back to things about my dogs, that might be helpful for you to think about your pets.

Yes, definitely for me is my current MH status that is making this trip, so much harder than previously and that in needs to be. Part of that is definitely loss of confidence.

Yes I have decided instead of raising money for beyond blue or black dog this year I will donate the money to myself so I can go on my trip!