04/25/15 - So, I decided to take advantage of the FREE counselling service available to cancer patients in my province. Ideally, I'd hoped for group counselling to further share experiences with others who've gone through this same journey. But, of course, as my tattoo declares, I am "one of a kind" or at least one of very few. Myxoid liposarcomas are so rare there are no in-person support groups available, only individual sessions. My stress levels decreased slightly since learning it appears NOT to have spread, so I nearly didn't go to the individual counselling...BUT...a conversation I had with a manager at the Canadian Cancer Society changed my perspective.
She mentioned that although I'm doing relatively okay right now (and I do mean relatively, every day is still a constant uphill battle), there will likely come a time where I feel the need for extra support beyond friends, family & online support groups. So, heeding her advice, I went to my appointment, and I'm glad I did. She gave me practical advice on dealing with work & insurance concerns I had, and she gave me a few brochures re: support services available in addition to counselling. For instance, there are courses cancer patients can take re: managing stress & relaxation, yoga, meditation, etc. She also mentioned that her door is always open, as the free counselling for cancer patients is available for eight years if needed. Be sure to check in your area to see if similar benefits are available. I am so glad I live in Canada!
To my delight, the first pamphlet is available online, so I'll post the link below. If I find any of the others online, I'll be sure to add to this list.
The Emotional Facts of Life with Cancer: A Guide to Counselling & Support for Patients, Family & Friends: http://capo.ca/docs/bookletREVISED.pdf.
As for the lack of group support specific to myxoid liposarcoma, I was eager to take advantage of Cancer Connection's detailed peer support matching program. Wanting to make the best of an extremely challenging situation, I figured it'd be the next best offline alternative outside the Facebook group I found, and I was right. What they do is get a few details about your type of cancer, the journey you've been on so far & your current situation, and then they do their best to match you with someone whose experience has been similar to yours in as many ways possible.
Ever the realist, I suspected they'd have a hell of a time finding even someone with ANY type of liposarcoma never mind the *myxoid* variant, and indeed this was the case. However, do not let this discourage you if you're suffering from one of these rare cancers no one's ever heard of. What they did instead, was find three volunteers for me to choose from, of which I chose two. The first one had sarcoma in their leg removed via surgery but no other treatment, while the second person had a sarcoma in their foot, surgery & radiation. Both sarcomas they had were also very rare. So, between the two of them, I was able to get a lot of questions answered & find commonalities despite having different types of sarcomas. And it wasn't just a quick chat either. Combined, I spent a good 2.5 hours of my Saturday afternoon chatting with them. Words cannot express how grateful I am to both of them for not only taking time to talk to me but for sharing a very difficult period in their lives. Once I've come out the other side of my sarcoma, I will seriously consider giving back by signing up to be a peer support volunteer myself.
*[NOTE: The title of this post was inspired by the Placebo track "Without You I'm Nothing" from their album of the same name.]
No comments:
Post a Comment