Life – but not as you knew it: Juking the Stats

Anyone diagnosed with cancer finds themselves plunged into a new world. Doctors and nurses speak a language you have to learn, and all of a sudden your chances of living into old(er) age are measured in percentages rather than decades.  In our latest blog, one of our Trustees, Ceinwen Giles, writes about living under the shadow of statistics and how it feels to live when dying feels much closer than it should be as a young adult.  Take a read – we think many of you will be able to relate to what she says.

Juking the Stats!

Guest blogger: Ceinwen Giles

One of the many things that I learned from binge-watching five seasons of The Wire was the concept of ‘juking the stats’. In the show, the police ‘juke’ statistics to show a reduction in crime. Rename “battery” as “assault” and, voila, crime goes down. In the four years since I was diagnosed with Stage 4 non-Hodgkin lymphoma, I have often revisited this concept.  Is it possible to juke the stats I’ve been given and make them better?

The first question I asked my haematologist after he gave me my diagnosis was what my chances were. In a scene that is seared into my brain, he looked at me and said ‘In most cases of this type it’s about 50% at five years. In your case, the disease has spread so much, it’s closer to 40”. I remember asking if he’d ever seen anyone in my position recover. He said yes, but then added the classic cancer doctor refrain: ‘But everyone is different’.

When I was sequestered in the hospital receiving treatment, I would often call my husband late at night and ask him to list all of the reasons that the statistics didn’t apply to me. I was younger than average – one point. The stats are always ten years behind advances in medicine – another point. I was fit and healthy (you know, before I had cancer) – one more point.

Unfortunately, the International Prognostic Index for non-Hodgkin lymphoma, designed to help doctors treat my disease, thwarted my efforts to make the numbers work in my favour.  I was young, yes.  But I had also spent most of my time ill in bed before the diagnosis was confirmed. The disease was present both above and below my sternum.  The tumour markers in my blood were through the roof.  Deduct one point for each of those, and I was right back where I’d started.

Having discovered that the stats did apply to me, I then spent evenings scouring the Internet for an indication that they were better than I’d been told. One of the only times that I truly freaked out post-diagnosis was after an exhausting online search confirmed that they weren’t.  No matter how I Googled it, 40% was as good as it got.  In fact, 40% over five years is good for Stage 4 cancer.

The stats played tricks on my mind, taking me to dark places.  In the waiting room of the haematology clinic one Friday, I spent time counting 10 people and think “six of you have to die, so that I can be one of the four that live”.  It’s not that I wished death on anyone in particular, you understand, but if only four of us were going to live, I desperately wanted to be one of them.

Even with remission confirmed, I remained paralysed by the numbers. Did I want to go out for dinner in three weeks’ time? I didn’t know – I might be dead.  Planning holidays fostered an inner turmoil; I wanted to get away but I was scared that advance planning would mean I was tempting fate. My husband and I bought a flat but I couldn’t work up the energy to decorate. I was happy that he and my baby daughter had a nice place to live, but, if I was going to die, I didn’t care what the sofa cushions looked like.

Anyone with cancer will have heard a million and one clichés about death. Life has a 100 percent mortality rate! You might get hit by a bus tomorrow!  The difference, as one of my friends recently remarked, is that when you get hit by the cancer bus, you’re left lying in the middle of the road, wondering when the next bus is due to arrive.  Getting up and dusting yourself off is not easily done, nor is “living as if you’ll die tomorrow”.  If I knew I was going to die tomorrow, I’d be out drinking heavily, smoking and blowing all my money.  With only a stronger than average possibility that I might die, are any of those things really a good idea?

Four years and four months on from the original 40% conversation, I’m still here and still in remission.  Although I have yet to make peace with the stats, living with them has made me prioritise things differently.  Pre-cancer, I thought part-time work was for slackers and often worked too hard.  Post-cancer, I try much harder to balance my work and the rest of my life. I still have ambitions, but they’re measured more against personal satisfaction than external reward.

I had always assumed I would live into my 80s.  Having so little clue about the future creates a strange tension and makes every day leaps of faith even bigger.  If I make it to five years cancer-free, every ache and pain will still make me worry that the lymphoma has come back.  If I’m one of the four in ten who survive, I will wonder what has happened to the other six. In many ways, my doctor was right; everyone is different and no one can tell you exactly what the stats mean for you.  I may not be able to juke the statistics in my favour but I do know one thing the numbers don’t show: hoping for the best doesn’t hurt.

Ceinwen is a proud Trustee of Shine Cancer Support and the Point of Care Foundation.  She tweets from @ceineken and currently freelances in the fields of patient experience, cancer, and whatever else she can get paid for.  And she thinks that this cartoon (from Xkcd) pretty much sums things up:

All about Vicky (and Shine Birmingham)!

In this week’s blog, Vicky Stock, who co-organises our Shine Birmingham Network introduces herself and talks about why Shine is important to her. Have a read – and join her on 6th June if you’re free!

Hi all, I’m Vicky, one of the organisers of Shine Birmingham and I thought I’d write a bit about how I become involved with Shine. Our next meeting is June 6^th from 6 to 8pm at Cherry Reds in Birmingham centre. I hope you’ll join us!

Although I’m only 35, I’ve had breast cancer twice. Five years ago, I found a lump in my left breast. I went straight to the GP, just thinking it’d be a cyst or something – I’d not had anything like it before. The GP wanted to wait a week to see if it went down and I remember spending the week, occasionally prodding it, willing it to shrink. When it didn’t go away, the GP referred me directly to my local hospital. I got called for a mammogram within two days, and a month or so after finding the lump, following scans and biopsies, I was diagnosed with invasive ductal breast cancer and my rollercoaster ride began. Since then I have also been diagnosed with cancer in my right breast (in 2011), had about 5 surgeries (including reconstruction), chemo and radiotherapy, targeted drug therapies, hormone therapies/injections, and experienced the added horrors of suspected metastatic cancer (thankfully now presumed benign).

So, how did I cope with all this? My emotions were all over the place. I was determined to stay as normal as possible – I worked all the way through my treatment (this was helped by the type of job I do and supportive bosses) and I carried on with my normal activities as much as I could. I was also determined from the start that I wanted to use my experiences to help others. I really felt that such a horrible experience had to be turned around, if at all possible.

Quite early on I’d noticed that people in their 20s and 30s were in a minority in the waiting rooms. I’d asked about support groups and been told there was one, but that the average age was quite high, and that the members had had their treatment some time ago. I often saw signs for an 18-25 group, but nothing for younger people over 25. I started to feel that there was a gap – and not just for breast cancer, but for all cancers.

Months later, I found out about Shine Cancer Support. It all clicked in my head – this charity summed up everything I wanted to do, and had tried to do earlier by setting up some meetings in Birmingham with another friend. I got in touch with Emma, and I’m now co-organiser of the Birmingham branch. It has been a slow burner – our numbers are small but I recently followed the wonderful example set by Soraya and Lesley in the North East and sent information about us to all of the local clinical nurse specialists and cancer managers asking for their support. I have had a fantastic response, which is really thrilling!

I am excited by this opportunity as it has been an idea milling around in my head since my diagnosis almost 5 years ago, and I really feel that it could make a difference to others going through cancer at a young age. Friendship and support from others who have been through a similar experience means that you have a connection, and that you can say stuff you might otherwise not feel able to share with partners, family or other friends.

I think I am the sort of person who needs to be doing something and feel that this rubbish will be turned around into something better. That is why I volunteer as much as I can, why I organise various fundraising events, why I constantly push new campaigns or fundraising initiatives. My recent newer activities include speaking at events, including a health and wellbeing day at a local hospital where they wanted someone to talk about their cancer and their volunteering experience. Doing these activities, raising awareness, funds, and helping support others is a passion for me; it’s interesting how I, who used to actively avoid public speaking, have now become a passionate advocate for Shine. In a funny way, if it hadn’t been for cancer, this new way of life and giving to others may not have happened. Who knows? It’s funny how life works out.