By PAULINE SHILKIN and YVONNE HUGHES
If I tell you that this is a story about cancer, my guess is that you’ll think it’s going to be heartbreaking or inspirational. You know what, it’s not going to be either. No unhappy endings and no heroics. It’s about the everydayness of cancer, and what comes next.
We’ve all heard that outcomes are improved if cancer’s found early, and we often hear about medical breakthroughs. It’s true – with early detection and improved treatment more and more people are surviving cancer. But what happens next?
If you haven’t experienced cancer, then you’re likely to think that the mountain climb comes next. Or the book deal. Or attempting to get 1,000,000 facebook ‘likes’ for kicking cancer’s butt. At the very least, you can expect a damn good party, right?
Wrong. It’s actually after the end of treatment that many cancer survivors find that they struggle. They’ve had a lot of support during treatment – hard to refuse a request from a bald person – but when that’s all done and dusted, there’s a lot of pressure to pick yourself back up and move on.
But life has changed.
Young adults (that’s usually under 45) who have finished treatment may find themselves facing some issues that affect them differently because of their age and diagnosis. They can struggle to adjust back to some kind of “normality”. This is further impacted by lack of understanding. There are few support services for young cancer survivors, and the support that’s in place is often not what they are looking for.
Many cancers common in young adults are treatable but with treatment comes a price tag. If chemotherapy is part of the regime, it may come at the cost of their fertility. This isn’t going to be an issue if you’ve already had your family or if you’re past your childbearing days. But for many young adults it’s come smack bang in the middle of this time, leaving a huge C shaped hole.
The treatment might involve surgery which results in scars and big changes to their bodies. There’s a world of difference between a 75 year old woman who’s been married for 50 years and has had a mastectomy and a 32 year old single woman who has had the same. (And anyone who’s seen a mastectomy bra could be forgiven for thinking that it only happened to older women.)
Or imagine trying to be ‘just one of the guys’ when you’re 28 years old and the only one of your mates with a colostomy bag, a result of bowel cancer treatment. There are the guys in your support group who understand, of course. They’re your dad’s age.
Cancer Council NSW recognises the needs of people who have successfully finished their cancer treatment (and their carers or mates) and established the Cancer Survivorship Unit in 2012. Part of this is the Young Adult Support Project, which looks at issues unique to young adults, like fertility, relationships, careers and finances at this particular time of life.
These issues and more will be covered at a free workshop, in Central Sydney, run by the Cancer Council. It’s for all cancer survivors aged between 18 and 45 who have finished their treatment (including childhood cancer survivors). Run over two Saturday mornings, it’s a great opportunity to learn more about how to deal with survivorship issues and to meet other people facing the same challenges. Childcare can be arranged if needed.
More and more people are surviving cancer. It’s not just an older person’s disease, it’s one that will affect people you know, and some of them will be people your age.
So write this down, forward it on, facebook it, tweet it. Register for the workshop by texting Sh!t cancer dumps to 0400 888 033 (cost of a standard call) or emailing paulines@nswcc.org.au
Pauline Shilkin is the Coordinator of the Young Adult Support Project. She started work at Cancer Council NSW before her own cancer experience and returned after, so she totally gets survivorship issues. Yvonne Hughes has recently published a book called One Piece of Advice: Words to guide you through early breast cancer, which came about following her breast cancer journey. Yvonne and Pauline bonded over boobs but can now talk about other things. Neither need their hats anymore.
Top Comments
I wish we could end this myth about beating cancer. The only way to "beat" cancer is to die of something else first. For most forms of cancer, a "cure" simply means the cancer is not expected to return within five years, or has not returned in five years. Truth is cancer cannot be cured, but treatment may result all signs of cancer being gone long enough to die of something else.
I had radiation treatment to "cure" my lymphomia. Most of my friends, and even family members that don't live with me wonder why twice a year when I go for my Oncology appointment I am so worried, or are even surprised after nearly six I still go for a twice a year appointment. The things they don't realize are first off, I am now infertile from the radiation treatment. I now have the scare tissue from the initial biopsy and the tattoos they use for marking as permanent reminders. On average people that are "cured" by this treatment have either the original cancer type of a secondary cancer caused by the treatment after about ten years. It was amazing luck that my cancer was treatable by radiation in the first place. There is less than a 10% I will be so lucky the second time. On the average chemotherapy gets rid of this type of cancer for 5 years. Each time it needs to be a different chemotherapy treatment and there is a lower chance of success. On average I can expect to survive until my mid-70's before the cancer kills me. There is of course a chance it will kill me sooner, and a chance I will survive longer. But in the end I know if I live long enough without dieing from something else first, it will be cancer that kills me. I also know as sick as the radiation therapy made me feel, that chemotherapy will be far worse.
This program will be fantastic - as are all Cancer Council programs. As a cancer survivor and past Cancer Council program facilitator, I can’t recommend this workshop highly enough.
The issues around survivorship are being increasingly highlighted for a very good reason - more people are surviving cancer. Unfortunately, more people are also being diagnosed - one in two. I know from personal experience that once they say the cancer is gone, that can be when the real problems set in.
As Pauline and Yvonne say, there are very few cancer heroes and cancer victims in the real world of cancer - just a whole lot of very normal, average people facing a rotten lot with whatever it is they have to work with. Sometimes it’s courage - sometimes it’s not - and we need to acknowledge not everyone who has cancer wants to be “brave” or “think positive” all the time.
I now coach folks with cancer and cancer survivors to navigate their cancer experiences, as someone who has been there myself, and who has worked in cancer support for the Cancer Council as well.
I wrote two books about the issues people face in the face of a cancer diagnosis - Things Not To Say To Someone Who Has Cancer, and Soul Letters for the Cancer Sojourner are available on my website, and have been endorsed by the Cancer Council NSW and Quest For Life.
You can find me, my books and my blog at www.johilder.com
Well done Pauline and Yvonne! :)