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I have struggled with a sense of belonging since my endometrial cancer diagnosis at the end of October. I felt like I don't belong to the cancer community since I have decided to pursue a hormonal treatment, and not have surgery, etc. 

I recently reached out and was connected with the social worker at LHSC that sees gyne oncology patients, and today we had our second session/continuation from our intake appointment last week. At the end of it, she mentioned that she might only be able to provide her resources to me for a short term. 

1. I know I have issues/worries about continuation of care (mostly following my experiences earlier this year), and she was aware of this too.
2. I know I'm not the only person/I know she has other patients that she has to see or work with. 

It just bites, though, since it took me 6 months to learn about these resources, and she said so herself that I am one of the types of people that usually get overlooked in accessing these resources since I'm not actively undergoing treatment in the sense of chemo/radiation/surgery, etc. 

I guess I'm just upset or taking it personally, feeling like I'm not a typical enough cancer patient to belong or access resources. 

Sorry for the rant of sorts, I just needed somewhere I could express myself and feel heard (I will say, even though this forum is for Ovarian cancer, it was one of the first places where I truly felt welcomed, and continue to feel welcomed in 🩷). 

Side note, my gyne oncologist increased my Megestrol dosage a month ago, and I think that's been causing me to feel more moody and emotional the last few weeks (gotta love my medications that mess with my hormones lol). I see him on Tuesday next week to follow up, so we are almost there 😅

MissERP,

   I am glad that you shared your feelings of isolation in the medical system in this forum. That sense of belonging is a big deal. We are here to support you. It is difficult enough to navigate through a bewildering diagnosis and treatment, but to also feel disconnected and not well supported. That is awful and it doesn't seem right or fair. I am sorry that you are going through this. 

   I don't know if getting support is reliant on where we live, but I had to search online for cancer support, as there was nothing offered in my community. (I live in a small town on Vancouver Island). 

  Do you know about Wellspring and all their fantastic support programs? It might not be the same as what you are seeking via a social worker, but they offer a huge variety of helpful resources, both in-person or online. You may already know about this. 

   I hope your meeting with the gyne-oncologist goes well and he is helpful. 

@MissERP rant away, your feelings are valid.  Have you joined the online teal teas?  Maybe that's another outlet to check out?  🫂  oh yes, I always forget about wellspring as I have not used there services as most are east coast based, but there is lots of online supports too.

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Thanks @LeslieA And @Meinvan for the suggestions. I have heard of Wellspring and look through the programming calendar on their website every so often. It is tough to participate in a lot of their programs since most take place during the day/business hours when I am at work. Similar thing with the Teal Tea talks, the Thursday afternoon one doesn't work for me, but I did attend the evening one for the first time in April, and thats where I learned that there should be a social worker or other resources available through the cancer centre at LHSC. I did find an evening Zumba class online through the Gilda's Club of Toronto, but its focus is on movement and having fun (which is okay, it has helped lift my spirits the last few weeks). 

@MissERP I am certainly happy you found this group. It is an awful to feel isolated and regardless of your treatment path choices, you should have the same access to support for physical and mental health. 

I would ask the social worker to define what a 'short time' means. Is she limited for some reason as to the number of sessions she can have with you? If so then why? Is it time based? Number based e.g., she can only meet with you 6 times for an hour. If that's the case, then suggest she meet with you 12 times for 30 minutes. I'm just throwing possible options out there. I would also ask what you might need to extend your time with her. For instance a note from your oncologist? If she is not able to provide additional time beyond whatever she can provide, ask her to provide you with other suggestions/alternatives. It's within her scope to be able to suggest other resource that might be available to you.

I'm also not sure if you are working and if perhaps your company might have an Employee Assistance type program where there are possible resources. Again, just 'spit balling' options. I also hopped on the Canadian Cancer Society website. They have Information Specialists you can speak to who can help guide you towards resources including emotional support services. I've put the link below:

https://cancer.ca/en/living-with-cancer/how-we-can-help/talk-to-an-information-specialist

I hope some of the above, including the information @LeslieA and @Meinvan shared will be helpful. Please know that we are here for you and you can "rant" to us any day, any time!!!

#Supportandencouragement

@Alwayslearning for sure. 

I do have coverage through employer benefits for up to 10 visits with a social worker per year (I've already maxed that out and still pay put of pocket to see my current social worker). I was mostly a) hoping to lessen some financial burden, and b) bridge a gap that I feel like I have with my current social worker that I see for counselling. 

I do have one more appointment booked with this hospital social worker, and plan to express my concerns with her then and hopefully learn more like you suggest what short term means. 

I've also just been left confused by the whole ordeal, as she has mentioned a few times how I am the type of patient that they know gets overlooked and how great it was that I reached out. Then for her to say this is only a short term thing made me feel unworthy, dismissed, and once again like no one in the medical community cares about what I'm going through. I will see what she says on Friday (and to be honest, speaking with her weekly is overwhelming and not even what I wanted). I might try and mention it to my doctor on Tuesday as well, if he cares or has any influence in the situation.

I know I did reach out to the Canadian Cancer Society back in late fall after my diagnosis, all they sent me was some long like 50 page pdf document on handling emotions and cancer. 

I will check out that link though, maybe it will be more useful.

I just wish that some of these medical professionals I've dealt with over the last seven months would take a walk in my shoes...

@MissERP I'm so glad you've tapped into your employment benefits. I do find that sometimes people don't look in that direction. 

I'm glad you are preparing for the discussion with the hospital social worker. Make sure (if you haven't already), to write your questions/concerns down so you get everything covered. I tend to forget things when I'm in the midst of a discussion, so my 'lists' are always so helpful to me. I agree the commentary by the hospital social worker is very odd indeed. Not very "welcoming" or sympathetic to your situation. I only connect with my social worker every 3-4 months. If I need her sooner, I know she'd be available but I like to let some time lapse between speaking with her.  I'm hoping getting her to understand what meeting frequency would work best for you, will hopefully allow for an extension of the number of sessions. 

Definitely speak to your doctor. Be that strong advocate for yourself. 

If you follow up with the Canadian Cancer Society and speak to an information specialist, I'd certainly be curious as to what support they can provide or where/how they can direct you. Your learnings may be helpful to others.

I was also wondering if there are any Facebook groups you could join? I found one for Lynparza/Olaparib that has yielded some interesting information for me. I also did a quick google search and found the following groups: My Endometrial Cancer (https://www.myendometrialcancerteam.com) and Uterine Cancer Support (https://www.sharecancersupport.org). The latter is a U.S. group however I've found that many women in Canada have connected to U.S. based online forums. You may already be familiarized with these so forgive me if it's duplicate information.

Good luck on Friday and next Tuesday. Please keep us posted.

#Supportandencouragement