One of my initial doctors on this daunting journey was the diagnostician who reviewed my first CT scan, sent me for a PET scan and conducted my bronchoscopy (not for the feint-hearted). He was the one who first told me I had cancer before handing me over to an oncologist to evaluate the full extent of my condition and determine my treatment plan.
I was too shell-shocked to respond with much coherence, but I did ask him if I was going to make it to Christmas (it was October at the time). He said he couldn’t make any kind of prediction because every person with cancer is different, but gave me a powerful parting gift as he shook my hand goodbye and wished me well:
“Don’t become a patient, Sophie. Live your life.”
It was a remarkable piece of advise to receive from a doctor and I took it deeply to heart. To me it meant don’t be a victim of your cancer, don’t hand yourself over to your physicians or the medical system or the stories about your disease. Be at cause, not effect. Take charge.
It is so easy to get swept away by the medical system that kicks in hard when you’re diagnosed with cancer. It moves like fast traffic on a motorway and before you know it you are caught in the headlights with no clear view of what’s really coming your way.
Your diary is filled with medical appointments, prescriptions are handed out with little explanation and decisions are made on your behalf before you’ve fully ascertained the details of your condition. How many tumours do I have? Where are they? Which shoulder? Which vertebrae? In the lining or the tissue of the brain? Or both? One lung or two?
Whenever I found myself spinning out of control my good friend Catherine (who was often with me because my husband was at home with our daughter) would remind me, “Sophie, you’re in charge. There is time to take your time. Choose what you’re going to do.” Moment by moment by moment.
This was easy to say, but extremely tricky to do when fear floods your body and all around are pressuring you to do everything yesterday because if you don’t then you’re going to die. Well, that’s the subtext.
However, I made some choices in those early weeks that I am deeply relieved I made – partly because they turned out to be wise decisions regarding my health (like delaying brain radiation until we had tried other treatments first), and partly because making them greatly empowered me during the most disempowering experience of my life.
Not being a patient isn’t a literal refusal to comply with doctors who know what they’re doing and want to keep you alive. It is a state of mind, an attitude towards cancer that strengthens your spirit and sharpens your resolve. I am in no doubt at all that it’s the attitude that got me through Christmas and made it possible for me to start living with cancer instead of trying to keep death at bay.
My top ten tips for staying in charge of your life when you have terminal cancer
1. Face the full facts. Get to grips with every detail of your condition. Don’t let your doctors fudge anything or try to protect you from reality.
It took me three weeks to ascertain exactly how many tumours I had, where they were and how each one might effect me. They didn’t want to ‘overwhelm’ me so held details back. This is very disempowering. You need to know the full reality of what you are dealing with. Then you can respond.
2. Ask questions about everything, especially treatments and prescriptions. What are they for? Why are they needed? What are the side effects?
I was prescribed morphine to manage the pain I was in from the tumour on my spine (C3 vertebra), but it made me feel sick and kind of stoned. So I discussed it with my doctor and we compromised with high, regular doses of paracetamol and ibuprofen. This was enough.
3. Plan your appointments around your life, not your life around your appointments.
The NHS hospital in my area have a system of informing you when to come as if you have nothing else to do. Whenever I am unavailable I call them and ask them to find me another time. They don’t like it and send me passive aggressive letters about how ’regretful’ it is to have to change the date, but it’s a matter of principle. I STILL HAVE A LIFE!
4. Research your options before agreeing to your treatment plan.
I was told I needed to have my whole brain radiated as a matter of some priority, which was understandable since it was riddled with tumours and my eyesight was going in one eye.
Naturally I found this terrifying and went to considerable lengths to explore alternatives – including negotiating with my own physician who agreed to delay treatment until I had been on the inhibitor drug for a while. I also found a doctor in Germany who has had success in getting rid of brain metastases so I followed her protocols too.
Within six weeks my tumours had radically diminished and were “barely visible” at my last scan. No radiation to my brain yet. Yay!
5. Do as you choose, not as you’re told (including choosing to do what you’re told)
I was told to take steroids to reduce the inflammation in my brain, but found out they increased my blood sugar, put weight on and would keep me awake at night. I am on a no sugar diet, didn’t want to add depression to terror by getting fat as well as ill and am aware that much of our healing happens during sleep (which I had none of those first three weeks). I was not having headaches so I chose not to take them, but promised to inform my doctor of any new symptoms. He agreed with this decision.
6. Listen to your intuition (even if it’s wrong).
Sometimes you will have a sixth sense about something, an inner knowing that a drug is not right for you or there is more to what you’re being told than meets the eye. Listen to this. Even if you end up discarding its advise you have honoured your own wisdom, which empowers you in the face of powerlessness.
7. Explore complementary treatments that can enhance your wellness and the efficacy of any drugs you are taking.
I believe in integrating conventional and alternative medicine. For example, there are things you can do to support your immune system when doing chemotherapy and reduce some of the side effects. There is a homeopathic remedy for the side effects of radiation and I have used acupuncture and Chinese herbs to alleviate the side effects of the drug I am taking. It has really made a difference.
8. If you can move your body, move your body
I find it relieving and reassuring to be able to stretch my legs and oxygenate my blood by going for regular walks. Sometimes, if I’m tired, I just go for ten minutes. I tell my body to move and am always glad I have. There have been days when this wasn’t possible, but walking reminds me I can still push my body around instead of being pushed around by it.
9. Get second, third and even fourth opinions.
I changed my oncologist in the early stages of treatment because I found one I warmed to more than the first one I met. And he was completely straight with me. No fudging, which matters to me a lot. But I also sought advise from other doctors, not just in the UK but in other countries, and now have more than one working on my behalf. They offer different perspectives and treatments, which help me know I am doing everything I can. This has involved fundraising, but you’ll be amazed who will help if you ask.
10. Don’t be a patient. Be you.