In our latest blog, one of our founding Directors, Ceinwen, writes about what she’s learned in the ten years since she was diagnosed with cancer.
On 4 February it will be exactly ten years since I was diagnosed with Stage 4 non-Hodgkin lymphoma. It’s also World Cancer Day, though I probably can’t claim that’s all my doing.
Cancerversaries can be a weird time. For me, I’m usually mentally taken back to being told that I had an aggressive blood cancer that had spread throughout my body. I had a six-week-old premature baby – and was then told I had a 40% chance of living two years. One of the most awful things I’ve ever faced was looking at my tiny child and wondering if I’d get to see her grow up.
In any case, I’m still here! It turns out that my haematologist was right – spending six months in the hospital on a high dose chemotherapy regimen offered the best chance for my survival and got me into long-term remission. It was, as one doctor told me, a question of short-term pain for long-term gain, and I’m incredibly lucky the gamble worked. The thing that no one warned me about was that there would be some longer-term pains too; pains that aren’t easily ignored or put to rest because you have to learn to live with it in some way. So with that in mind, here are ten things I’ve learned over the last ten years…
1. It really is the simple things that matter
Spending six months in the hospital, largely in isolation, gives you a lot of time to think. When I wasn’t feeling awful, I did manage to squeeze in some guided meditation between Homes Under the Hammer and the relentless taking of my ‘obs’.
The guided meditation that I followed had this section at the end where you were supposed to focus on something you wanted to realise in the future. The only thing I ever focused on was walking hand-in-hand with my daughter on her way back from school. My daughter is 10 now (and almost at an age where she doesn’t want to hold my hand!) but every time I pick her up from school, a little part of me smiles because there is so much joy in feeling her little fingers in mine.
We often think it’s the biggest things that matter the most, and that we have to ‘make memories’, but one thing I’ve learned is that the very best memories can also be the simplest.
2. You can’t come out the same way you went in
In his book the Emperor of all Maladies, Dr. Siddhartha Mukherjee recounts the story of Carla, a patient with acute lymphoblastic leukaemia who, like me, spent months in the hospital while receiving treatment.
“What went into that room and what came out were two different people”, Carla says – a thought that resonated profoundly with me when I first read it.
Through Shine, I’ve spent years working with other younger adults with cancer and I can think of very few who were the same people afterwards as they were before. This isn’t always a bad thing and in no way means that they’re ‘defined’ by their illness, but it’s hard to have a life-threatening disease and stay the same. I think it would probably be weird if you did.
There’s a lot of grief that goes with a cancer diagnosis and treatment, not least because you lose the sense of invincibility that you didn’t even know you had. For a lot of people I know, this can be a useful realisation: once you realise that time is limited, life can simplify. Why waste time on people you don’t like or a job you hate when you’re staring death hard in the eye?
3. Find your peace of mind
I don’t really like yoga or pilates (and believe me, I have tried). Once you’ve got cancer though, everyone seems to think you need to do them to relax. One thing I’ve learned is that finding a way to quiet your mind is important – whether that’s through yoga or something else. For me, that something else is running.
Part of my treatment involved having chemotherapy injected directly into my spine – a specific type of horror that I wouldn’t wish on my worst enemy. I survived each injection by mentally picturing myself running up Parliament Hill on Hampstead Heath. If I could just get to the top, the chemo would be done and the needle would be out of my spine.
Once I was out of the hospital, I found running was one of the only ways I could calm my mind and rid myself of the constant worries about dying. Writing in Wired magazine last year after the death of US runner Gabriel Grunewald, editor Nicholas Thompson noted that running had helped him too: “I still run and train in no small part because it’s a reminder that I’m alive. At times, I’ll snap back to the months after my treatments, and times when I felt like I could barely walk, and remember how beautiful it is to be able to run.”
I couldn’t have said it better myself and to mark my ten years I’ll be running 10km in May with (at least) ten friends – and hoping to raise £10,000. If you’d like to donate to help me reach my goal, please click here! And if you’d like to join us on the run, let me know!
4. There is no magic cure
I really wish there was a magic cure for cancer or that Big Pharma was hiding ‘The Truth’ but as far as I can tell, neither is true. Through Shine I’ve met some of the world’s leading cancer researchers who themselves are disappointed that there isn’t a magic bullet out there (or a conspiracy that they can be part of!). As our knowledge of cancer evolves, we’re increasingly learning that cancer isn’t one disease but many, meaning the chance that one thing is going to cure all cancers becomes less likely. That kale and wheatgrass shake your mother’s next-door neighbour has made you? Also unlikely to cure you.
And if anyone tells you to forgo chemotherapy while following their specific diet or plan, ask yourself ‘who is making money from this?’. Yes, Big Pharma makes money from their drugs but that guy selling you a raw juice diet is making money too – and only one of them has been proven to work.
5. You don’t always need to be positive
If you’ve been diagnosed with cancer, chances are that more than one person has told you that you just ‘need to be positive’. But do you, really?
Being diagnosed with cancer isn’t a positive experience. It sucks and, even ten years later, I’d give it all back in a heartbeat if I could. Very early on in my treatment, my haematologist told me that while being positive might have an impact on my quality of life, it wouldn’t have any impact on the success of the treatment. At the time, I’m not sure I believed him. Months later, as the sadness of my situation fully hit me, those were words I often clung to. Feeling sad wasn’t going to make me any physically worse and there was a relief in knowing that. That’s not to say I was never positive, but I didn’t force myself to feel good about something that was pretty crap just because someone else thought I should. What I focused on instead was having a good time when I could, hanging out with my husband, laughing with friends, and reading celebrity magazines to relax.
6. Cancer patients get the flu too
My cancer treatment gave me a chronic immune deficiency which requires an infusion at the hospital every four weeks, and every time something physically goes wrong, I tend to blame cancer. It turns out, though, that I’m still able to experience what I think of as ‘Muggle Problems’.
A few months ago, I chipped a tooth eating some Halloween candy and became convinced that my teeth were crumbling due to my cancer/cancer treatment/immune deficiency. It was actually, as my dentist said, ‘wear and tear’ which was not helped by eating copious amounts of Cadbury’s Crunchie bars. I mentally take any physical illnesses a lot harder now because I’m so aware of how drastically and quickly things can go wrong. I also try a lot harder to push myself when I’m not well, just to prove that I’m not really ill. Unfortunately it turns out that even regular people need sick days – and there isn’t much benefit in trying to push through them.
7. Animals are amazing
If you’ve been to a Shine conference or Great Escape lately, you’ll know that we’re big fans of therapy animals – from dogs to alpacas. I always liked animals but post-diagnosis I’ve become a much bigger fan. Why? Probably because animals can offer unconditional attention while asking for little in return… selfish, I know, but also very joyful. If you can’t have a dog, I’d highly recommend giving Borrow My Doggy a look (I met a great canine friend this way!).
I have also just got a cat and I’m loving having another creature in my house. Given his feline manner, his is a more conditional ‘feed-me-and-I’ll-love-you’ type of attention, but it’s still very therapeutic**!
8. Cancer isn’t an immediate death sentence
Before I entered Cancerland, I thought a cancer diagnosis was pretty much a live-or-die situation. Perhaps the biggest and best change I’ve seen in the last ten years is that more and more people are living longer with cancer. I know many people with Stage 4 bowel cancer who have defied the odds and now have ‘no evidence of disease’, while many other friends have been treated with immunotherapies and are living far longer than they would have ten years ago. That’s not to say that living with cancer is easy: it’s not, and it presents us with new emotional and physical challenges. That said, if you know someone who is diagnosed with cancer then remember that treatments are changing all the time, and that there is an ever-widening gap between a diagnosis and the end of the line.
9. Pace yourself
I’m going to be honest here and say that while this is something I’ve learned, it’s not necessarily something I practice.
Fatigue is a huge post-diagnosis issue and, thankfully, one that is getting more recognition by doctors and researchers. Yet that doesn’t make it easier to deal with. If I overdo it, I’ll wake up feeling like I’ve been hit by a truck, and cancer-related fatigue doesn’t go away after a good nap. While I have always used a more of a ‘crash-and-burn’ type of approach, I have learned that pacing can be valuable, if annoying (why do I need to pace myself when no one else has to?). I’ve learned that exercise can help to manage fatigue – and also to acknowledge that if I have overdone it, there’s nothing wrong with taking some time out.
10. Find your people
Some of the first people I met back when we started Shine also had babies and cancer. Others I met had had their careers dramatically interrupted. They were exhausted, and they were suffering from anxiety. That may not sound like a fun bunch, but I probably laughed longer and harder with my Shine friends than with anyone else, partly because we had the kind of shared experiences that bond you together in a powerful way. Many of those people remain my close friends and there is something amazingly comforting about being surrounded by people who just ‘get it’. I have a great husband and wonderful friends and family, but having friends who truly understand what living with cancer and its aftermath is like has given me the strength to keep going in my darkest times. If you haven’t found your people yet, give Shine (or another group) a try. You’ve got nothing to lose and very possibly an awful lot to gain!
**As I was writing this, my cat left a dead mouse on the doormat, which my daughter then stepped on with her socked foot. Perhaps not the therapeutic experience I was looking for.