Quantity or quality?
This time last year I was recovering from my mastectomy and reconstruction, and I still can't believe how much my life has changed in the year that followed. I have made so many amazing friends - and sadly lost a few. And my jar of joy is almost completely full.
This blog has been a lifeline for me - it's helped make my breast cancer diagnosis a reality, and from the comments that have been posted, it's been wonderful to know that I'm not alone when I talk about how I'm feeling. In fact, my blog has been nominated for a UK Blog Award. However, the only way to win is for each nominee to persuade / hassle / flood their followers' timelines with pleas to vote for them. So I'm only going to ask you once - if you'd like to vote for my blog, the link is HERE. My blog is in the Health and Social category, which is the only option you'll see in the dropdown category. I never did this to get publicity or to win things, and it's more than enough that someone thought to nominate me.
Right, back to business.
Do you have a good quality of life?
That may seem like an odd question to ask, but I've given it a lot of thought over the last 10 months since I started taking Tamoxifen and Zoladex and joined the millions of women with a chemical menopause.
I'm hoping that everyone reading this has access to the basics - shelter, warmth, food, clean running water, unlike those 'living' in war-torn countries, for example. And it's very hard to complain about my quality of life as I write this on my MacBook with a dog on my lap whilst the TV shows pictures of Syria. But I have to deal with the life I have at the moment, for my own sanity.
Once you finish your hospital-based cancer treatment most of us are now discharged and told to go and live our lives. Which can be scary, and often just bloody miserable. The side effects of the hormonal manipulation that so many breast cancer patients take can be devastating, although not everyone suffers to the same degree. You feel that you shouldn't complain, and you are just meant to accept all of these symptoms, and should be lucky / grateful to be alive.
But here's the thing - I selfishly want my old life back. I don't want to spend the next ten years in a fake menopause, before I go through my own natural menopause. For me, with the Zoladex and the Tamoxifen, I'm finding it incredibly hard to cope. The night sweats that have permanently stained my mattress, the hot flushes that make me strip off every hour (hoping I don't flash anyone next to me), the aching joints… To add to that, the gynaecological stuff isn't a walk in the park either. I feel like a shrivelled-up 80-year old, and that takes its toll on relationships.
And so I've made the bold decision (after talking to my surgeon) to stop the Zoladex for a few months and see if it makes a difference to the side effects and more importantly, my quality of life. Zoladex is added to Tamoxifen in young women - it makes us post-menopausal and drastically reduces the amount of oestrogen we produce.
However, breast cancer can come back despite all the chemotherapy, surgery, radiotherapy and hormonal manipulation we throw at it. And at the moment there is no way of predicting who will be unlucky. I had to ask myself the following question - Do I want to take all the drugs and injections, with double the side effects, knowing there's still a 20-30% chance it could come back…? Or, do I stop the Zoladex and stick with Tamoxifen, hopefully be happier and not blame myself if it does come back?
You might think I'm mad to stop the Zoladex, but it only increases my 10-year survival by a couple of percent - much, much less than the benefit of chemotherapy. I don't have children to influence my decision, and I'm not like my friends with metastatic disease, where quantity of life can become far more important than quality.
I guess what I'm saying is that it's OK to question your doctor, and ask them, in frank terms, what the real benefits of all the treatments are. As a doctor I routinely prescribe what the evidence tells me to, and I have the statistics to show that for the majority of women these treatments work. But doctors aren't the ones who have to take the tablets, and doctors don't have to live with the side effects of those tablets.
Cancer really has made me think about what is important in my life. I don't want to be grateful to be alive. I want to be able to forget I ever had breast cancer, and to put it all behind me. And sadly the tablets that a lot of us are on for 10 years now make it very hard to do that. I think we, as doctors, can do better. And we, as patients, deserve better.