Gratitude

@Mustang67

Great to hear from you again. That's awesome news! It's such a relief to not to have to jump through their endless hoops anymore.

Health-wise still a struggle but feeling okay for now. I got an email this morning saying that I've been chosen as a finalist in the lived experience workplace awards in the 'peer work student's category. A complete shock when I read the email. Apparently my lecturer had nominated me and that resulted in me being accepted as a finalist. There's a dinner next month to announce the winners.

Other than the relief of finally getting on the DSP, how have you been going?

@MJG017 congratulations on being nominated for the lived experience workplace award. That must be a great honour.

I have been struggling with my medication still, try different generic brands [edited by moderator]. The one I am currently on isn't too bad, but it is not as good as the original. I have pretty much spent most of the last 4 months in bed, without the motivation to do anything. I am also trying to find a different antipsychotic tablets, as I have stacked on so much weight and it is now affecting my quality of life.

I saw my surgeon last week and he will be taking my gallbladder out within the next 3 months. And while he is there, he is going to have another go at expanding my oesophagus where the scar tissue is from having a lap band. He said he might have to cut into the scar tissue to help release the constriction. I hope it works this time, as it will be so nice to eat without my food getting stuck. And I have a hiatus hernia which has push some of my stomach into the oesophagus, so that doesn't help either.

My doctor did a referral to a bulk billing psychiatrist near by for a medication review.

Are you on NDIS at all?

@Mustang67

That must be so incredibly frustrating that the medication still isn't working as well as the original one. Such a long time to be feeling that way just because you were forced to change brands! I hope you're at least getting some support through this. It must be very difficult, especially with the oesophagus issues as well. And a gall bladder removal! That all seems more than enough for anyone. I hope this surgery can give you some relief soon.

No, I've never seen anyone to be diagnosed with anything. So I'm not on the NDIS. God only knows what they'd find if I ever got assessed! I'm just in the DSP after I was advised after 3 3-month exemptions after I was diagnosed 3 years ago. Strangely, it wasn't cancer that made them get me to apply (and accepted) for the DSP, but the ongoing co tinence issues from the original surgery having the prostate removed. Go figure! A cancer that's going to eventually end me... Nope. Forced to wear pads? Yep. Crazy!

I have been seeing a clinical psychologist at a cancer care centre and an adoption counsellor this year, and they've both been great! So, yeah, there are bad days, and bad parts of days, but I get through. I've learnt to not get too down on myself during these periods as I see it now as normal and to be expected for anyone in a similar position. So I just go with it, feel it, and try my best to get back into things as quick as I can. My studies, and a lot of consumer rep and advocacy/awareness work keeps me busy... and distracted which is always helpful. I even got my first match with my volunteer work at the Cancer Council for their cancer connect service yesterday. So I finally got to call a match and talk to them as someone who had, or is, going through what they are. We talked for about an hour and he seemed really grateful for it and so I think my first call went really well. Which is obviously a big relief.

Good evening @MJG017

Yes I have been getting support while my medication has not been working like the original one did. And yes it is very frustrating. As now I have been shown how great I could feel on the right medication, only to have it taken away from me. But it gives me hope that there might be another brand that could make me feel as good.

It is coming up to the anniversary of my partner's death next week and the emotions and tears started last week. But I have realised that not only am I grieving over his death, I am grieving the loss of the fun & bubbly person that I used to be.

I am really hoping the my swallowing problem gets fixed, as I am so sick of throwing up. And it is not good for my teeth, as some of my back teeth have started to come apart. It all these additional things that add to the depression.

I have decided that I am not going to bother to apply for the NDIS, I don't want to stress myself out again by trying to find the reports they want, especially since I have nothing current.

Have you applied for the incontinence payment from CentreLink. My mum gets it.

I am glad that you are getting the help you need and it sounds like it is really working for you.

• Congratulations for your first match with the Cancer Council. It is awesome that you are using your time to help others in a similar situation. I remember when a lady I worked with was diagnosed with a brain tumour and needed to have surgery, she seemed so uncertain. I just happened to have a friend that just had her brain tumour operated on, so with permission I gave her my friends phone number. The next day she was so grateful that she was able to speak with my friend as it put her mind at ease. So it is very important work that you do, and I am so proud of you. 😊

@Mustang67

Well fingers crossed you find something soon that will be as effective as the old brand was. What a horrible thing to have to deal with all of this because of having to go to a different brand!

Remember to take care of yourself this with the anniversary coming up. People seem to think grieving just means the loss of someone. But it can be different things as well, like grieving for a life you used to have. It can be really complicated which is why it can be so hard to deal with. Especially with other issues causing even more depression. Hopefully they can sort out your swallowing problem and it can at least be one less thing to have to worry about. God knows the universe can through enough at us! Every little bit we can take off the load we have to carry, make it slightly lighter to bare.

My partner works with clients trying to get NDIS. I've heard stories and I absolutely don't envy anyone trying to get on it! It can be so tough... intentionally in a lot of cases. She told me something like 75% of cases that go to some appeal place (for NDIS decisions) get reversed. It seems pretty strong proof that a lot of these rejections are just intentionally making things difficult in the hope that most people will just give up. And people in these positions generally aren't in much of a mental position to keep fighting. They know that and abuse it. I wish if was easier and fairer for people that need and deserve it. So much money wasted in so many places, except for the people that really need it.

Yes, I do get that CAPS subsidy. Fortunately, someone at a support group quote a while back told me about it. I've passed it on to a few guys who also knew nothing about it. It's not exactly something they go out of their way to advertise. It was about a year after I started getting it, that some medical professional told me about it. Better late than never I guess.

Thanks. It means a lot to me that people appreciate these things. The guy I spoke to for my cancer connect call was so grateful just to be able to talk to someone who understood. It's a powerful thing to give someone, and the reason why i started my peer work course this year. You can offer something that most medical professionals cant. That understanding of exactly what it feels like and the associated struggles. It was a very nice thing you did putting your friend in contact. It helps me so much when I first started trying to reach out for help a couple of years ago. It feels so good to be able to give some back and see other people feel the same relief and happiness that I felt when people did it for me.

@MJG017 thanks for your message. You are correct about the different levels of grieving. I only just realised not long ago, that I have also been grieving the person that I used to be. Upon his death everything changed and I have never been the same bubbly carefree person again. And yes I also grieve the what could have been. We had a beautiful house and we were both working reasonably well paid jobs, and we entertained often.

And I think it is an awesome service that you are providing for other sufferer's. Talking to someone who has been through the same experience, gives you that feeling of connection and it also helps knowing if they have other questions or concerns they can talk to you.