May 282008

This article probably won’t be much of a surprise to anyone who has lived it, but…

Thursday, 29 May 2008 01:13 UK

Cancer survivors ‘left in limbo’

Many long-term survivors of cancer are not getting the help they need to cope with the after-effects of the disease, experts warn.

More than 60% of adults with cancer can expect to live five years or more, according to an article in the European Journal of Cancer.

Yet they are left “in limbo” to deal with ongoing symptoms from their disease or harsh cancer treatments.

The government said it was working to improve services for cancer survivors.

Professor Marie Fallon, an expert in palliative medicine at the University of Edinburgh, said the number of people living with the effects of cancer was rising as more and more people were surviving the condition.

There is an enormous population of long-term survivors of cancer, many of whom are living with a range of symptoms
Professor Marie Fallon

She added that cancer survivors would suffer ongoing symptoms but often be confused about whether they were treatment-related or whether they were a sign the cancer had come back.

“Traditionally, palliative care has been aimed at one end of the spectrum where it is used to help patients near the end of their lives,” she said.

“However, there is an enormous population of long-term survivors of cancer, many of whom are living with a range of symptoms.”

“These patients exist in a limbo.

“They fall between two stools – they have finished being treated by oncologists, but are not receiving the care and support from palliative care teams that patients at the end of life receive.”

She added the ongoing problems, which included pain, swelling and depression could result in poor quality of life.

Better provision

Better integration was needed between oncology services and palliative care to prevent people falling through the gap, she said.

And there needs to be a clear agreement of where patients can access help and who should be responsible, she added.

Professor Alexander Eggermont, president of the European Cancer Organisation, said: “To be cured from cancer, but living with symptoms that are related to often complex multi-disciplinary treatments involving surgery, radiation therapy and chemotherapy is already difficult enough.

“To reintegrate into society, resuming work full or part-time adds to the complexities and socio-psychological pressure that an ever-increasing number of former-patients have to deal with.

“We better start tackling these issues now as they will only increase in number and magnitude.”

A Department of Health spokesperson said deaths from cancer in people under 75 fell by 17% between 1995 and 2006.

“The Cancer Reform Strategy published in December 2007, recognised that the services and support available to those living with and beyond cancer needs to be improved and announced the establishment of a new National Cancer Survivorship Initiative to deliver this.”

 Posted by at 6:47 pm
May 092008

Today is that weird anniversary of the day I got told I had ovarian cancer. That seems like a blog-worthy bit of news, since this space is supposed to be about me and the old OVCA. And it is a big deal. Overwhelming, in fact.
Like, when I sit and think about it, there is a small tsunami that erupts around the memory of the things that happened four years ago.
And next year, the five year mark, is technically when they shower you with streamers and silly hats and cake, assuming the news stays on the good side of the ledger for the next 12 months. But me, they will keep following me for 7 years. So I don’t think I get to have that party next year, assuming all the ducks stay in their current rows.

I can’t really capture very much from the inside of my head about this issue, but a couple of things do come to mind.

Firstly, I guess most everyone can look back to four years ago and say, “whoa, things sure are different now.” The last four years, for me, have been a bit like being caught under a truck and dragged along gravel. It really has been a spectacularly awful chunk of my life. And I also know that, in terms of cancer crap, it could have, and technically should have, been *so* *much* *worse*.
I find that notion hard to balance out inside my head. Like, I am actually grateful for my own good fortune and feel a deep grief for the women I know who have died from ovarian cancer over the last couple of years. But sometimes I get all spun around, thinking I ought to be more Lance Armstrong-like.
That stuff is weird. Because when I was doing chemo, I believed that all I had to do was survive the chemo and get the good test results and everything would be good again. Apparently the powers that be didn’t get that memo.
But whatever. We trudge along. And it will get better. I do believe that.
And I am lucky that my body took the chemo and responded the way the doctors had hoped.

So, I got told I had cancer on the Friday before Mother’s Day, four years ago.
Mother’s Day seems to hold enormous significance in this whole OVCA experience.
When I first started blogging about this, I connected up with some other women with OVCA. Many of them were extremely sad that this disease had prevented them from bearing their own children. One of those people was a woman named Cancerbaby.

Cancerbaby was brilliant. Like, stunningly brilliant. I have no idea what she did for a living, but she had amazing writing skills and a scathing wit.
And she really really really wanted to have kids.
She did a round of chemo, things looked good, then things stopped looking good.
Eventually, she died on Mother’s Day, three years ago.
I remember walking to my truck after hearing the news and just crying about the whole thing.

It’s a bit freaky to me that in the links section of this page, more than a couple of the links lead to pages that aren’t there anymore.
I guess I should take down the link, but I don’t really want to.

My friend Marianna died from ovarian cancer last fall. Now I’d like to tell you how completely insane it is to have someone in your circle of friends end up with the same toxic disease as you, when the odds of that happening are, what… 1 in 70?
I guess I know more than 70 women.
Anyway, that sucked.
I know it doesn’t work this way, but I sort of felt like couldn’t I just go through this and then no one else I knew would have to? Or perhaps my experience would make everyone else hyper-vigilant to the symptoms. Except the symptoms for OVCA are so vague, how could anyone be better equipped because of what I went through?
Anyway, it would be Marianna’s birthday this weekend, this mother’s day weekend.
I am going to go work in her garden, with her partner and her friends. We’ll go have her birthday for her.

And then there is the mother’s day without a mother, for the first time, for me.
My mom was so sick for so long, I sort of thought I had gone through 98% of the letting go before she even died. And that may be somewhat true. But the world is a stranger place now that I don’t have a mother.

So, that’s the inside of my head. And I don’t mean to be a big downer.
I do hope that other people go out and have some really good time with the people they care about. I think that’s what you should do. If I am trying to say anything at all, it’s that everything changes and people in our lives aren’t always where we would like them to be so we should enjoy what we have with them.
So, do that.

 Posted by at 10:35 am