Sometimes Being Unique Is Annoying

Yesterday, I went to my "Life After Cancer" class.  Overall, it was informative, though little of the information presented was new to me.  Except for the fact that the recent numbness in my toes is likely a side effect of the Cisplatin I was given in chemotherapy, which I believe the nurse referred to as "coasting neuropathy."  Supposedly, this little bit of annoyance can begin around a month after treatment ends and last up to a year.  Joy!  Aside from that, though, there was just a lot of talk about "the new normal", coping with fatigue, changing diet and exercise habits, et cetera.

While most of what was discussed was useful in a broad sense, I could not help but feel like I was not REALLY a part of this group.  There were 5 other cancer survivors in the class with me.  Four of them - breast cancer survivors (not sure about the fifth - it never came up).  SO, right off the bat, not only were their treatments different (and less invasive) than mine, but add to that the fact that they were all probably between 50 and 70 years old.  Now, don't get me wrong - it was nice to hear them talking - there definitely is that "something" about cancer patients and the way they, er, WE look at life as we move through and away from our treatments.  Something peaceful and inspiring.  But I did not feel like one of them AT ALL.  I am only THIRTY SIX!  I was just slammed into menopause with ZERO preparation.  I NEEDED to hear about the long term sexual and emotional side effects of MY treatment.  And while I really liked the nurse who did half of the presentation, I could not help but feel slighted when she said she could not talk about the sexuality stuff related to recovery because she was a Catholic and it would make her blush.  She wasn't being a dick about it - it was actually sort of cute, but it definitely WAS one of the few things I could have used some further insight into.

I don't know.  I just feel like maybe I would have felt like I got more out of it if I was there with other gynecological cancer survivors.  Or ones closer to my age.  At one point I think one of the social workers told my mother that, while there IS a support group at Moll Pavilion for gynecological cancers - I probably wouldn't really fit in because I am so much younger.  But then, if there was a younger people with cancer group (I think there is one at the east side Gathering Place location), I still don't quite know how I would feel if none of THOSE people had a similar experience to mine - like, what if THEY all had breast cancer or blood cancers or something else.  I don't know...

My mum said that maybe this is what I need to do.  To create some sort of group for people my age.  Not children.  Not the middle-aged or elderly.  But people like me.  There have to be others out there who feel alone, disconnected, confused about where they fit into all this.  But how do you even start such a thing?  What would or should it be?

Comments

Steve Brown said…
I don't have any useful information or experience here, but I'll happily get loaded and make up a bunch of official-sounding sex facts for you.

For example, did you know that both cervical cancer and cholera can cause long-term modifications to the taste buds that result in semen tasting like taco seasoning? Totally true.
Missy said…
Where would YOU look to find a support group like that? The internet? Doctor's office?
Think of where you would find that info. and go from there. Meet in the back room of a restaurant if you need a place to start, even if it is for 2 people...it is a start.
I have learned, whenever we feel alone, we aren't. We need people like you to find us!
Good Luck.
Aunt Nancy said…
When I was younger and was having trouble deciding how to handle something, my Mom - Grandma Nelson -used to say " Just do something...even if it's wrong". Obviously her point was to just try something... take a step. Don't wait till you have the perfect solution. I think there is a lot of wisdom in that simple remark. You may not know the "best" way to start a gyn cancer survivor group for younger women, but you sure as hell can give it a shot! Maybe contact a social worker at Cleveland clinic. Or the local chapter of American Cancer Society. Contact people on other cancer blogs.
You'll figure it out. Good luck!
Aunt Nancy
Anonymous said…
I not only see you as being able to create a support group that meets your needs (which will be ever-changing), but I also see you as the leader of such a support group someday ... able to make a huge contribution to other young ladies going through the same experiences you have already been through.
Mum
Rocko said…
GREAT idea. do it yourself. awesome. a very unselfish and generous thing to do and there no doubt are people that could also use the same information.

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