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Special Needs children
leia21
1 Posts
So I am a caregiver to my husband who has Stage 4 Prostate Cancer he was in remission but it has reared its ugly head again. I also have a 16 year old that is or has complex medical needs, autism, non verbal, G tube fed etc etc.
We moved to the Edmonton area ( Stony Plain) in June of 2018 and love being down here as our daughter is a Stollery kid. We lived in Northern Alberta before. Don’t miss the 10 hour drives love 20 min drives for sure and sleeping in our own beds.
So looking to connect with other families where there spouse has cancer and they may or may not have special needs kids.
4 Replies
Whitelilies
2745 Posts

@leia21 Hello Leia and welcome from AB! I am sorry, to hear of your husbands' diagnosis…..it truly is a challenge, on the entire family. Please know this community, is here, for you, and will support you.

I will include below a link for Care Givers….have a look/read through…..of others' experiences, giving care…..feel free to even post there too……soon others will chime in with greetings your way. To reach a member; just type “@”screen name, no space after @, select name, turns blue, they receive your message.

How is your husband doing at this point in time? Is he receiving treatment? (Bet you are glad you are closer to the hospital…)

How are you doing?

I hope other caregivers, will soon say hello here.

I totally get it, the challenges you have, with your Special Needs Daughter (ASD/ Non-Verbal, G-Tube)…..I have 2 sons with ASD a bit older than your daughter. I will assume she is at school/daily……you are able to support your husband, ie drives, care at home etc……but you must, try, to look after yourself….even in 15 minute breaks…..tiny breath of fresh air, outdoors…..sip tea on the porch (no matter how cold the temperature is)……now is the time to arrange support/respite for your daughter….a student nearby? respite worker website? A staff member at school (education assistant) may be looking for weekend work hours?…..Use this time, now, to get the help, in order.

You are caregiver x 2……I know it is hard……

Funny though…..I am the patient, and yes….I still HAD to care for my sons…..they NEEDED their routines in place…..dinner at the same time…..I even had to schedule my radiation sessions around the Camp Bus departure time. (Did it - check !!)

Please reach out…anytime…..with questions….share your feelings……we will support you….

Warmly

Whitelilies

#caregiving

Whitelilies
2745 Posts

@leia21 Hello

Please meet @kcbpcst Kindly, could you share info for the Support Group for Prostate Cancer, to connect with our new member @leia21 who is a caregiver, to her husband, with stage 4 prostate cancer….she is seeking to connect with other caregivers, thank you for your help here.

Regards

Whitelilies

#prostate cancer

kcbpcst
60 Posts

@Whitelilies Thanks for the intro

Hello @leia21

I am a member of Prostate Cancer Support Toronto. We have peer support group meetings on the 1st and 3rd Tuesday of every month on Zoom at 7PM Eastern Time. Our next support group meeting is on the 7th of February at 7PM Eastern Time. We welcome both, men and their partners/caregivers, to our support group meetings.

The link to this meeting will be posted a few days before on our website:

You can find a lot of Prostate Cancer related information on our website

https://pcstoronto.ca/

If you would like to connect with a Support Group outside Toronto, you can find contact details for your nearest group at this site:

https://prostatecancersupport.ca/support-groups/

Prostate Cancer Foundation BC has an online forum for partners/caregivers at:

https://www.partnersinprostate.ca/

They also have a monthly online meeting only for partners/caregivers on the last Wednesday of the month at 7PM Pacific Time.


We have “Awareness Night” presentations on the last Tuesday of January, March, May, July, September and November at 7PM where we have guest speakers talk to our members on various topics related to Prostate Cancer as well as other related issues. The link to register for the presentations is posted on our website (pcstoronto.ca) a few days before the event.

Our next Awareness Night is on the 31st of January at 7PM Toronto time. Here is the link to register.

You can view videos of past Awareness Night events at the link below.

https://pcstoronto.ca/pccn-toronto-videos/

If you would like to connect with a Prostate Cancer Spouse/Caregiver for ongoing one-on-one support, you can join the TrueNth program where you can be paired with a Caregiver Peer Navigator who is a spouse, partner, caregiver, family member or friend of a survivor to assist you along your journey. Your partner can join this program for support from a “Survivor” Peer Navigator. I am a Peer Navigator in this program. You can find more information and register for this program at this link:

https://tinyurl.com/2j2e2v92

I have personally undergone a Radical Prostatectomy (Robotic/laparoscopic) followed by Salvage External Beam Radiation and Androgen Deprivation Therapy (AKA “Hormone” therapy). If you and/or your partner would like to connect with me directly by phone, FaceTime or Zoom let me know. I am based in Toronto.

supersu
1580 Posts

@leia21
good morning and welcome to this community.

if you are looking for folks closer to home to connect with, can I suggest you contact WellSpring in Edmonton. they have a beautiful facility and now welcome folks there. lots of support for patients AND families.

have a great day, and again welcome here.

cheers
su

#welcomenewmembers #caregiverspouse #specialneedschildren

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