New here, how do you cope?

[LizJessie]

Hi everyone. My name is Liz and I'm 35. I have two beautiful kids and live in WA. 

Today, the 17th of January, my partner turns 28. For his 28th birthday, he was diagnosed with colon cancer. He went to the hospital on Friday morning with severe bleeding from his bottom and tests began the second he got in the ED. 

They found a growth on his colon on a CT scan and had blood tests galore. He's having a colonoscopy tomorrow (18th) to find out the stage he's at. My partner, at the age of 15 was diagnosed with Aspergers and so he's not handling this well at all. Worse than I thought. He's currently still in hospital awaiting the colonoscopy (I have a couple of days off of work to be there with him through it, and the ex husband - kids dad - has agreed to have them so I can concentrate on him) and he's talking about just  wanting to end it all now, but I've said to him to please speak to the nurses about how you're feeling. I've even said to him that my priority is him, I will take as much time off work as I need to, to be there for him. 

Enough of all that, I just want to know, besides just being the support foundation for him, what else can I do? I've been researching treatments, how to clean stoma bags, diet with a stoma bag, anything I can honestly think of that can help. Also, what else can I do for myself, in terms of self care? 

We've been together 4 years and my kids love him like he's their biological dad. My daughter even almost bought him a "Happy birthday dad" card. I am a mess, I've been crying non stop with them around. I just can't deal with anything right now and am honestly numb. 

Any suggestions will be taken on board, so I can make all of this easier.

[Patches]

Hi LizJessie, sorry to hear about your partner.  I live in VIC so don’t know what is in your local area up things you could investigate are

for you

- for some one to talk to, one option is palliative care counsellor

- some employers provide counsellors for their staff

- Carer Australia

- there may be local Carer support team through your local hospital

- keep in contact with your friends and go out with them on semi regular basis

- talk to your local dr

for your children

- family dr may be able to talk with them

- school counsellor can talk with them after school start

For practical things

- finds things that as a family you enjoy and start to do them when possible

- do things to give everyone lasting memories including photoss, something lots of people don’t do regardless their age or health.

hope you don’t mind me asking - what stopped your daughter giving your partner the birthday card?

hope to hear from you again

[LizJessie]

Hi Patches

Thank you so much for that information! I will be getting onto some of that for sure!
I work for Services Australia and we have a program called Benestar which is their own counselling services free of charge for us employees, and immediate family members so I will enquire to my boss when I call her tomorrow to update on the situation (she's given me until Tuesday off so I can be there for my partner)
As for carers, the surgeon said we'll have a social worker talk to us soon after the colonoscopy so I may ask them if there's any local carers support groups.
In terms of friends, I really only have one close friend (outside my workmates) and I've already told her. She's already ready to drop everything to be there for me, and I appreciate her so much right now.

As for family doctor for the kids, I love that idea. We have an amazing one, who's so gentle, so we'll book an appointment with him just for a chat.

And the us as a family, my partner hates photos, but has already agreed to include himself in more. Our favourite thing to do is visit this amazing bakery, which is something we were going to do for his birthday today, so we'll make sure to do more of those trips. He also converted from an NRL fan to an AFL fan, so I'm going to see about getting to as many AFL games as we can.

Thank you again, I've got so much research to do 😊

[Patches]

Most hospitals have social workers who I found are a great source of info plus some one to talk to.  Social worker we dealt with referred me to Carers support group linked to public health scheme in our town.  He run through various questions to get an idea of our situation and possible help as time went on.  Lots of hospitals also have a chaplain that can come and talk to your  partner if he wishes, I found nurses were the people that offered this to my husband. I am also employed by services Australia and have used EAP. You can phone them direct and only need to advise management if you need time off work for appointment.   Hoping you have supportive manager etc.

I mentioned doing things as a family as my husbands cancer stole almost all opportunity for us to do these things.  Is good he is happy to be in photos they will add to the memories your family has of him. My mum lived to be almost 80years and I cherish all the photos I have of my parents.

i apologise if reading the words palliative care caused you upset. So many people, myself included prior to 12mths ago, only have knowledge of palliative care helping as some ones health gets worse.  From discussion with 2 wonderful staff in emergency section of my local hospital 12mths ago I learnt that palliative care is intended to help and support cancer patient and their family members from as soon after diagnosis as possible.  My husband said to his oncologist about it and the oncologist did the referral.

just a thought about the AFL ..... ( if he doesn’t already have) would your partner like a jumper or football signed by the players?  This might be something the local team might be willing to do for yourselves due to the Aspergers and cancer.

take care

[Patches]

Thinking of you today and sending positive thoughts to you. ❤️❤️

[Patches]

Hi LizJessie, thinking of you and hoping you are ok.  How are you and your partner going?  Have doctors been able to provide you with information about your partners health?  Big hugs sent your way.  ❤️