Helping every step of the way

A few weeks ago I told you all about my trip to Vancouver to the CAPO Conference. I also told you the Conference allowed me to meet with great people from everywhere all working towards the same ultimate goal: giving better cancer care to patients and families. Among the professionals I met, I had the chance to talk with Shelly Cory, the Executive Director of the Canadian Virtual Hospice. The Virtual Hospice is a bilingual website which provides support and personalized information about palliative and end-of-life care to patients, family members, health care providers, researchers and educators. The website is fairly new; it became available in 2004. Shelly approached me after attending a short presentation I did on YACC and the Forgotten Generation; she wanted to talk about how we could work together on making the Virtual Hospice more accessible and in concordance with the needs of young adults and their families and friends. This discussion got me thinking.

On April 16, 2009, the Canadian Cancer Society made their 2009 report public. It was titled: “More Teenagers and Young Adults with Cancer Surviving.” Their report focused on cancer in adolescents and young people 15 to 29 years of age. Reading this, I thought, “What about the 30- to 35-year-olds? Aren’t they young adults as well? But I digress, let’s stay focused here. That was wonderful news, but we know that steps still needs to be made in order to really get the survival rate to reach the level observed in children and elderly people. In the report, we could also read: As more young people with cancer survive, there is increasing need to do more to meet the distinct challenges of these young patients, according to Canadian Cancer Statistics 2009 released today by the Canadian Cancer Society. Totally agree with that, but through my discussion with Shelly, it was also clear that we also need to take care of those young adults that are fighting the disease until their last days. The survival rate is better, but it’s not what it should be, which means young adults don’t always make it and I believe this needs to be addressed.

The Canadian Virtual Hospice is a source of information and support exclusively on palliative care needs for people of all ages. Patients, family members, friends and professionals can go on the site and access articles, general information and also ask a question to a professional. For most people, palliative care is associated with “there is nothing left to do” when in fact it is still a form of very “active” medicine, the interventions are different, but so much is done in palliative care. Also, palliative care is not necessarily limited to the last few weeks of life. It can last longer, so having proper and sufficient support and information is crucial.

Living with cancer as a young adult is a different experience, we’ve said it many times. We can then imagine that dying as a young adult is also different in the sense that the issues the young adult, the family, the friends, the siblings are dealing with are different. I believe The Virtual Hospice to be a wonderful resource to get support and information through various channels. You can have access to pertinent and accurate information from home. When you are a patient or someone helping a loved one through the palliative care stage, this can make a big difference.

In the YACC family, we have lost wonderful and inspiring young adults and I truly hope they had all the support and the information they needed in that difficult time. Connecting with Shelly and making sure young adults know about resources like the Virtual Hospice is a way to honor and remember those we miss.

If you have a chance to go on the site and have a look it would be great. If you feel some things could be done to improve it and reach the young adults needs better, please let me know (karine@youngadultcancer.ca) and I will make sure I give the information to Shelly.

I know it’s not happy talk, but unfortunately, end-of-life sometimes become part of dealing with cancer and I hope for the care and support to be available at all stages of life. If you want more information on the Virtual Hospice, don’t hesitate to contact me.

Live, Laugh, and Love,

Karine

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