When you recover from the flu there’s that glorious moment when you realise you’re well again. The bins are emptied of used tissues, the chest rub goes back into the medicine cabinet and the sun comes out.
Cancer isn’t like that.
When I reached the end of treatment I think some part of me expected to wake up feeling well. I would jump out of bed and head back into my huge garden to spend the day happily carting mulch and pulling weeds. The fact that chemotherapy finished in December of 2013 and here it is almost May of 2014 and I’m still dealing with the after effects should have been a hint. It’s a long journey back to being as well as I can be.
My difficulties are compounded by everyone’s expectation that I’ve recovered. My hair and eyebrows are back and I look pretty much the same as I did when I was diagnosed. Treatment is over and my friends and family are glad to be free of the worry that my cancer imposed. Everyone tells me how well I look. It seems selfish to respond with the truth. I feel like a ran a marathon and got beaten up at the finish line.
It almost seems ungrateful to complain about side effects. No doubt about it, the chemotherapy, the surgery and the radiation saved my life. Most of the serious side effects associated with each of these have passed. I’ve even gained some unexpected bonuses. My hair, always baby fine and fly away, seems to have found my father’s genetic heritage and is growing back thick and wavy. The genetic propensity for cancer comes from his side of the family so this seems only fair. I’m also now the proud owner of matched breasts and the scar on one of them sits neatly below my swimmers. My previously fragile finger nails are now strong and my skin looks so great even the doctor at the skin clinic couldn’t believe it.
Then there’s the down side. The most noticeable problem is persistent pain in my pelvis and lower back. Massage and three trips to the physio haven’t helped. I think it’s either the notorious bone pain that comes with chemotherapy or a consequence of walking strangely on my nerve-damaged feet for several months. My feet are much better than they were but the back pain is bad enough to make standing or walking for longer than about an hour reasonably painful.
My hands are also sore, particularly first thing in the morning when I can’t make a fist. They improve throughout the day but never lose that pins-and-needles sensation or the feeling that I’ve forgotten to remove a pair of latex gloves. While they’ve been numb I’ve managed to wrench the left thumb and overwork my right elbow. My grip is unreliable. I drop things. I need to be very deliberate with anything hot.
My taste buds are still registering most savoury foods as metallic. If I could live on ice-cream and apples this wouldn’t be a problem. Of course the reduction in appetite does mean that the weight gain caused by the steroids is a thing of the past but I miss sitting down to a favourite meal and knowing what it will taste like. I’m finding that very bland foods are best, like steamed corn cobs and pumpkin. Most things don’t taste the way my brain thinks they should taste and with very few exceptions this is not a good thing.
The fatigue is pervasive. Enervating. I haven’t been this tired since my daughter was a baby. I need to be flexible about the gap between what I plan to do and what I can reasonably achieve. The trick is to push just a little bit beyond the fatigue, but not so much that it’s counterproductive.
I don’t mean to complain. I mean, I know I am complaining but it seems mean spirited. I’m alive, after all. Lots of people come through treatment with a much longer list of far more serious side effects, including the impact of a mastectomy which I’ve managed to avoid by the skin of my teeth and the skill of my doctors. I don’t feel entitled to complain.
I’m not fatalistic. I’m aware that at this point a lot of people throw up their hands and just accept that their health has been permanently compromised. Here’s my mantra:
THERE IS NO UPPER LIMIT TO HOW WELL I CAN BE
I wasn’t expecting recovery to be such hard work. Most of the information on breast cancer focuses on getting through treatment. There’s a bit of discussion about ‘your new normal’ and some advice about how you’ll be different emotionally, but not a lot of practical information on how to recover from the side effects of treatment. I’ve had to develop my own recovery plan. Here’s a summary:
It worries me how obsessed we all seem to have become about food. Every week there’s a new warning on something we used to enjoy and a new ‘super food’ that we’re all supposed to rush out and buy. This week it’s fermented vegetables and the paleo diet (although I’m pretty sure paleolithic man did not eat lamb skewers with chimichurri sauce). Last week it was goji berries and gluten free. My diet is based on the wise advice of my good friend, Cat; cook most of your food from scratch, avoid processed stuff, buy organic where you can, and, most importantly, figure out what works for your body. For me that includes A2 milk and yoghurt, grass fed organic meat and loads of vegetables and fruit. I might do a more detailed blog on my diet one day but it will still carry this caveat; what works for me may not work for you.
Water, water and more water. I still need to work at drinking enough of it. I know I feel much better when I do. I also have two cups of coffee in the morning (no more and none later or I’m staring at the ceiling when I should be sleeping) and sometimes a herbal tea in the afternoon. I don’t drink alcohol any more. I have allowed myself the option of having one drink every month to cover big events where there’s a toast or the occasional dinner out when I may have a single glass with dinner. Mostly this is a way of giving up without feeling deprived. I might not actually have that glass of wine.
I practice yoga every morning or later in the day if life means I have to skip my regular time on the mat. Yoga has played a big part in my ability to cope with treatment. In the depths of chemotherapy when I didn’t feel like I had the energy to even get down on all fours, let alone move through a sun salute, I would remember my husband’s advice; The days you least feel like yoga are the days you most need yoga. Half a dozen cat stretches later and I would feel my energy start to rise. My beautiful yoga teacher, Emma, encouraged me to start practicing at home, every day, in addition to my weekly class. What a gift her advice has been. She told me that even five minutes a day would make a difference. Some days it really has been only five minutes but most days I start with the intention of doing five minutes and half an hour or an hour later I’m enjoying that glowing, peaceful relaxation that I can only achieve with yoga. I’m also walking. It’s too soon for anything more strenuous but I am interested in high intensity training and it’s potentially cancer combating properties.
The greatest thing you’ll ever learn is to love and be loved in return. Cancer makes you acutely aware of the finite and fragile nature of life. Spending time with the people I love is an important part of my recovery. So is being grateful and thankful. I am kinder and happier because of this illness. It’s probably cancer’s greatest gift.
Not the fad kind of detox where you drink lemon juice for a week or fast until your gut aches but a whole-of-life detox that involves shedding everything potentially toxic or even just no longer useful. To give you an idea of the scope of this endeavour, it includes the cupboard under the sink, my makeup collection, the pantry, my bookshelves, the DVD collection, my TV viewing choices, my wardrobe and my Facebook ‘friends’. This is a slow process and I’ll probably do an out of season spring clean as I feel up to it. This part of my recovery is about removing chemicals and foods that are potentially toxic and it’s also about simplifying my life, reducing what I own to what I really need and love and enjoying the sense of accomplishment that comes with doing that. I find this kind of housework very therapeutic. It’s also going to involve an emotional detox as I jettison unhealthy thinking, clarify my values and decide what’s going to matter to me from now on.
6. Giving back
Part of my recovery will include giving something back. I’d like to volunteer at Breastscreen or with some other charity that supports people with cancer. I know I’m not quite strong enough yet, but I’m getting there. I like helping people.
It boosts the immune function, calms the mind and generally makes anyone with a regular mediation habit a happier person. Just ten minutes a day so why is it so hard to find the time? I think if I add it in at the end of yoga that will work.
I’m not sure if this blog will continue to be part of my recovery. In some ways, I feel like it’s reached a natural conclusion. I certainly hope that I never have reason to write about a relapse and I’m not sure recovery is interesting enough or compelling enough to be the subject of a blog. I’ll see how I feel. Perhaps there’s still some things to write about being happy and staying positive even when you don’t have cancer.
Meanwhile I’m going to focus on my recovery. Way back at the beginning of all this, a good friend likened cancer to climbing a mountain. I forgot that once I’d climbed it I’d need to find my way back down again. Let the long journey home begin.