Community Connection: Ovarian Cancer Canada is looking for volunteers! Could you help?
OVdialogue – consider joining our team in the role of Peer Support Volunteer. Over a few hours each week, you would be part of a team that helps connect people, support conversations and are thought leaders for OVdialogue. This is your opportunity to give back to those who have/continue to support you through the tough times, share your unique experiences, and help celebrate successes. For more details of what this entails, please reach out to @Mfallis (mfallis@ovariancanada.org).
OVdialogue – consider joining our team in the role of Peer Support Volunteer. Over a few hours each week, you would be part of a team that helps connect people, support conversations and are thought leaders for OVdialogue. This is your opportunity to give back to those who have/continue to support you through the tough times, share your unique experiences, and help celebrate successes. For more details of what this entails, please reach out to @Mfallis (mfallis@ovariancanada.org).
Support group for caregivers
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Does anyone know of any support groups for family and caregivers of Ovarian Cancer? I recently learned that I am going to have to restart chemo in the new year as my CA125 numbers have started to climb again. My last scan in October was clear so we are not rushing to restart chemo as I am currently still feeling quite well. My mom told me today that she sometimes has a difficult time coping with my disease and knows I joined the support group for patients and wondered if there are any groups for caregivers or loved ones. Is anyone aware of any groups?
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Comments
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@carebear
I am sorry to hear your news. How are you doing with it all?
I am not sure but perhaps connecting with your local Hospice to see if they have any programs for Caregivers may be an option.
If not, Wellspring has some programs. Here is the link so you or your Mom can further investigate it.
https://wellspring.ca/online-programs/programs/all-programs/
I do sincerely wish your Mom finds some assistance to cope with her feelings. It must be tough for her.
My thoughts are with you both.0 -
@Strongwoman Thank you for your message. I have some days where I am angry because my treatment seemed so successful but I knew that recurrence was going to happen. I was just hoping it would be longer than 8 months from my last chemo treatment. But most of the time, I am okay. I say this is like a prize fight and when it is time to return to the ring, I will kick cancer's ass again. I actually think I'm having an easier time with it this time because I know what to expect with chemo and that doesn't scare me. I do my best to not let myself dwell on the what ifs and take each day as it comes dealing with the what is. And right now, I am fine.
Thanks for the links. I may have her contact Wellspring and talk to someone there about what she feels would help and see what the recommend. I also wonder if the social worker at the cancer centre in might have some resources. My next appointment is this week so I will ask then.
Thanks as always for the support you and this group give us. You are an angel.0 -
@carebear
Your welcome. I so enjoy being able to help where I can and support in other places. I do hope you and/or your Mom were able to find the "right" program for her and that she can process the information better. It is very difficult indeed.
I found this quote from Jodi Picoult's book entitled The Book of Two Ways and in it she is both an Egyptologist and a Death Doula to put some context to it. Please forgive the lack of pronouns as this is directly from the book.
"Don't think you have to discuss the illness. Sometimes, a sick person needs a break. And if you ask up front if he want to talk about how he feels--or doesn't--you're giving him control at a time when he doesn't have a lot of choices."
I feel this is true for so many of us. If you feel like sharing it with your Mom, go ahead. It may help her understand how or where you are at. I also found an awesome podcast that I listened to and I shared it with my Mom and it helped her understand me better. I found the way she posed questions or asked about something changed after that. I will gladly share the link to it if you would like.
Sounds like you are in a good place and I wish you the best this Holiday/Christmas season!0 -
@carebear
I'm so sorry to hear of your recurrence. Good that you're taking advantage of feeling well before getting back into treatment. Lots of our gals feel a rush to get at eradicating it but actually there little science to show that waiting until you show symptoms has any negative benefit. I expect that you are still considered platinum sensitive since recurrence was past the usual six month threshold. If that's the case do ask about trials when you discuss your treatment plan with your oncologist. There could be an option for you, like it was for me when I recurred the first time. My trial kept me treated but chemo free for two years.
As for your mother, caregivers are the group who receive the least attention yet have huge needs. It's only recently they've been getting some attention. One of the difficulties is that they tend to stay very anonymous; not liking to speak openly and honestly where their comments about their patient partner might get back to the family or the patient. And where groups are established they tend to be live face to face or online are on zoom. I know I just completed a research project on OVC at Queens U that was for survivors and caregivers and when it came to focus groups we had a good response from patients, but it was like pulling teeth to find any caregivers who were willing to participate.
In any event, your mother is very welcome to join OVdialogue if you think this will help her and you can maintain the confidentiality of your discussions and comments that you prefer she not see. If it means changing your screen name let me know in private message and I can do that for you. We don't advertise caregivers, as long as female, are welcome but I''ve been approving the few who have joined the past couple of years and it very helpful to them and to our patient members who get to hear about challenges they face that also may be faced by their own caregiver. So feel free to pass this message along if you wish.
Good luck with treating your recurrence. I've walked in your shoes 4 times now over six years and still kicking ass so if there is anything I can do to support you just let me know.
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