Cancer and the Young Adult Generation
Recently, on a morning that I had to go for chemotherapy, my five year old son drew me a picture. It depicts him and me, walking in the sunshine and holding hands. We have big smiles on our faces.
He made me promise that I would take it with me to chemo and post it where everyone could see it. "It will make you feel better," he said.
And it really did.
When I settled into the hospital bed to get ready for the infusion, I pulled the drawing out of my bag and put it on my tray table. Right away, a nurse came to admire it. She gave me a bit of surgical tape so I could affix it where I could see it. For the rest of the four hours I spent in the chemo room, nurses and other staff kept stopping what they were doing to ask me about the drawing.
I think it served as reminder that the patients they work with are people with lives and loved ones. I think it made them look at me more closely. I think it also brought them up short to see such a concrete reminder that this particular patient is the mother to really little kids.
While our numbers are growing, there just aren't that many people my age being treated at my cancer centre.
On July 7, the Globe and Mail (a national Canadian newspaper) ran an article, "Cancer's Forgotten Generation,'' on the particular hardships faced by those of us who are between 18 and 39 and living with cancer (I was 38 when I was first diagnosed. I am now 40):
"Too old to garner the widespread sympathy and support attached to pediatric cancers, and too disparate and disorganized to have their own ribbon campaign, the group is under-researched, experts say - vastly underrepresented in clinical trials, and in some case misdiagnosed because they are thought to be too young to have cancer."
For those of us in this "forgotten" demographic, the fear and shock of a cancer diagnosis are often compounded by a sense of isolation. Our cancer sets us apart from our peers and our youth can make us feel alienated from other cancer patients.
I also find myself feeling frustrated by the lack of resources available to women my age living with cancer on a long term basis. Most studies on exercise and nutrition involve older women. And almost all have excluded women who are her2 positive (younger women are more often, but by no means always, estrogen negative and her2 positive). There is next to no literature available on preserving fertility, or mourning its loss. And little is known about the toll on the body of going through menopause at 38.
There is a greater availability of resources for women with cancer who also have kids, but these tend to be limited to written materials. Support services are more widely available in larger urban centres.
And I know that, as a mom to young kids living with metastasis, I am still an oddity at my cancer centre, which serves a medium-sized city.
In the last two years, I have found most of my peer support on line. I have found commonality that reaches across geography, socio-economic status, culture and religious beliefs. My internet community has given me places to ask questions, vent my frustrations and fears. I have even learned that I can be a support to others.
As more young adults are diagnosed with cancer it will be easier to make our voices heard. And there certainly are more of us. According to the Globe article:
"Rates of certain cancers in adults aged 20 to 44 mysteriously spiked in the two decades prior to 2006, including a 54-per-cent rise in testicular cancer and 156-per-cent increase in thyroid cancers in women, according to a comprehensive report from Cancer Care Ontario and the federal Public Health Agency of Canada."
The good news is that more of us are living longer and well. And we are beginning to get organized. It always seems to me that younger cancer patients are over-represented on the internet. I think it's more that my generation is not only hungry for information and connection but at home in the virtual world.
I for one have been very glad for the community I have found online.