None of us expects to get cancer. Cancer is what happens to someone else.
I certainly didn’t expect to be diagnosed with breast cancer at the age of
42 while I was in, what I thought to be, the prime of my life. Happily married with two children, a career and just a normal, regular, life. I ate healthily, I didn’t smoke, I exercised, I didn’t overindulge on alcohol, I wasn’t overweight and, all in all, I ticked the boxes for minimising any risk of cancer. But then, one Wednesday evening in October 2016 life, as I knew it, ended as I was diagnosed with breast cancer.
First off, I had surgery and soon thereafter I started chemotherapy which continued until the end of May 2017.
Yes, I lost all my hair, my eyebrows and my eyelashes. I was also quite poorly from the chemo side effects. After chemo, I moved onto radiotherapy and, all the while, I was having three-weekly Herceptin injections. It was not a great period of my life.
A friend asked me to talk to someone else with breast cancer.
Around May, just as I was coming to the end of chemo but before radiotherapy started, a good friend of mine told me that her friend had just been diagnosed with breast cancer: she lived nearby, and could I possibly have a chat with her? Of course, I would. I would be delighted to. If nothing else, breast cancer has a way of bringing you close to others in the same situation enabling you to support one another.
So, what could I say that might help her whilst she was waiting to embark upon her breast cancer treatment?
What should I not say to her, so as to avoid causing any unnecessary fear or worry? How did I feel when I was waiting for my treatment to start? Had I known someone in my current position, when I was first diagnosed, what would I have wanted to know from them?
I knew exactly what I would have wanted. I would have wanted practical tips.
Advice about how to prepare for surgery, how to prepare for chemo, what to expect from chemo, what to take to chemo, information on the cold cap (I didn’t even know about such a thing until just before I started), how to prepare home-life for duration of the treatment, what I should be eating, how I could alleviate the side effects and a gentle heads up of what to expect from the aftermath of surgery and chemo. Breast cancer may have thrown me completely out of my comfort zone and turned my world upside down, but I had been determined to maintain some sort of control over life during my breast cancer treatment. I would have wanted a hand to hold mine and for someone to say, “it’s going to be tough but you’ve got this and to help you, here is what you can do to prepare………”
So, I dug out the Cancer-Notebook (the one containing my notes, shopping lists and to-do lists from treatment)
…and I started to type up a few notes about practical things I thought might be helpful for her. And the notes got longer and longer. I realised that over the previous 6 months I had learnt a lot about getting through breast cancer treatment from the chemo nurses, my oncologist, my breast care nurse and the little bit of research that I had allowed myself to do on the internet. Only a little bit of research because, you see, when I was diagnosed I became almost paralysed with fear. I could not bring myself to read anything about how breast cancer manifested itself, survival statistics, survival rates, treatment success rates, metastasis of breast cancer, secondary cancer, invasive cancer, aggressive cancer or the correlation between grades and stages and recurrence and survival.
I wanted to bury my head in the sand and just get on with the treatment
Putting all my trust in my medical team knowing that when the time was right and I was feeling emotionally stronger, I would allow myself to read up on these subjects. But, given my determination to maintain control over life during treatment, I had tentatively researched practical advice for getting through breast cancer treatment whilst trying to minimise the risk of coming across anything that might scare me.
And as I was typing up all my notes, I began to wonder whether maybe these notes could be of help to others
…and not just the lady who was coming over for a cuppa and a chat. After all, I had found the cancer websites incredibly overwhelming when I was first diagnosed. There is so much excellent advice out there on a number of different websites but I hadn’t known where to start, which sites to trust, where to find the best advice about each aspect of treatment and how to navigate the vast sites. I had wanted a website which gave me practical advice in one easily accessible place where I didn’t have to go through link after link trying to work out if the information was relevant or not, whilst trying to avoid the “scary stuff”. One which directed me straight to the information that I needed.
I wondered whether I could start a little website of my own: one that people, who were going through breast cancer treatment, could use as their starting point when searching for advice about getting through the treatment. Yes, it might be a cancer-cliché, but maybe this was what I had been looking for during all those months of treatment. Some sort of purpose. And a way to pay forward all the care and kindness that I had received from so many people throughout my treatment.
So that is what I did.
I carried out more and more research and I found such wonderful resources that I wish I had known about during my treatment: for example, websites which sell cancer specific items such as drain bags, PICC line covers and post-surgery clothing; websites which provided gifts and trips for those going through cancer treatment; websites with excellent advice for getting through treatment; websites which give employment advice; websites which give nutrition advice; and websites which give menopausal advice. I typed up all my notes into readable pages and I added links to all these fantastic resources. Then, in November last year, www.tickingoffbreastcancer.com was born: its aim, to help people going through breast cancer treatment who do not know where to turn for help. It is my way of holding someone’s hand and telling them, “it’s going to be tough but you’ve got this and to help you, here is what you can do to prepare………”
Sara is the founder of www.tickingoffbreastcancer.com, a website dedicated to helping people through their breast cancer treatment from diagnosis to living life to the full once treatment ends. Aged 42 when she was diagnosed with breast cancer, Sara decided to set up the website to help support those who do not know which way to turn for help after receiving a breast cancer diagnosis; those who are overwhelmed by the online support for breast cancer; and those who may be scared to go online for fear of what they might find. The website provides practical advice for each step of the way, together with many links and signposts to other online resources.