This time, three years ago, I was alone in a hospital room, watching the night slip away and the transformational, slow-creeping dawn of a new day. 
I was not scared that day. I lived in the moment knowing this would pass. I understood I needed to let go; to trust in the skills of others; to rely on the love that surrounded me; to be free of any pre-conceived thinking. It was a unique time, a special and privileged space to walk into and hold. Eyes wide open, this day was the beginning of the most profound, personal change and learning programme which I’m lucky enough to continue.
On this anniversary, I’m sharing some of these learnings. Some of these are deep and meaningful. Others are not.
1. We are the product of our thoughts. What we think will be. But as our thoughts constantly change, we have the opportunity to change what will be.
Nothing is set in stone. Changing our thinking, changes our outcomes.
2.Our feelings are attached to our thoughts and our thoughts are attached to our feelings.
If I think my recovery will be painful then guess what? My recovery is going to be painful. However, if I think my recovery will be bearable, then I stand a better chance of dealing with all the little niggles and set-backs that occur (like them taking my morphine button away a day early). Conversely this can work the other way too. For example, ripping out my feeding tube “accidentally” in the shower (I hated that feeding tube and they kept saying, “One more day”). It hurt beyond blazes, I still remember the searing agony. But I told myself before I did it, it was going to be painless. I was wrong.
3.People love to help. Help them by asking for specific help.
For example, “I can’t drive for a few weeks and Craig needs to go away for work, can you come and be my driver on these dates”? My lovely friend Karen, did not hesitate, despite living a busy life 200 miles away. It took mouth cancer surgery to not comment on her driving my car; if I’d had a tongue to bite, it would have been an even bigger mess than my new, surgically created, tongue.
4.After big, life-changing, surgery, emotions are heightened.
This is normal and it continues for many weeks; maybe months and sometimes years. The ability to ‘feel more’ intensifies; the air you breathe is sweeter, more rarefied, more precious. I cry far more easily now; my friends know I love and cherish them because I tell them; I won’t waste time doing meaningless, unproductive work for organisations with no purpose and no soul; I choose carefully the people I want to spend time with. The consequence of this hubris is that I am blessed with some incredibly strong friendships while being much less financially robust. However, I now live with ethics, principles and morals and luckily a husband who still works.
5.Your scars will not be as bad as you think they will be.
Three years on, mine are visible but are now an essential part of who I am and frankly I don’t give an XXX what others may think. Three years ago, I never would have believed that I would be so comfortable in my own skin. My wise girlfriend Haydee, shared ” scars are tattoos with better stories”. These days I am an avid storyteller.
6.It’s tougher on your support team than it is on you.
You have to get on with the business of living, surviving or dying. You’re the lucky one, it’s happening to you and you alone choose how you deal with your diagnosis. The loved ones around you are plunged into seas of uncertainty, fear, stress and worry. They can only look on knowing that community and society judges their reactions and behaviours to your diagnosis. Be kind to them. Worst case scenario, they could choose not to see you. In my experience, they only get away with this, if they live far away and their local community has no idea that they have not seen you since prior to your diagnosis. The ones who live close by, are the ones who will be judged. Be nice.
7.It’s BS when they say children are resilient.
Roscoe has had his moments of resilience just as he’s had his moments of sheer fright and panic. They are humans, they process emotions slightly differently to adults but they still feel. 
And never lie to a child about your diagnosis. I thought I was protecting him when I lied that people get better from this cancer and it was nothing to worry about. 15 months later I had to tell him that Charlie had died, leaving his mate, Tyler, without a Mummy. I will always remember his reaction and his face on hearing this news. Now he’s a teenager, I know I disappoint him on a more regular basis but unlike other parents, I know when disappointing my child began.
8. It takes two years minimum for you to come back into yourself.
I went back to work, way, way, too early with a brain like a jellied eel and a memory bank of mush. I turned up to a meeting with my new Exec Director and found myself stuck in one of Dr Who’s time loops, repeating what I’d just said over and over again. I kept waiting for my synapses to fire up but they were away on extended holiday. This was neither good for my confidence, nor my soul. Give yourself time to heal; mentally, physically and emotionally. Otherwise you could end up back in another operating theatre 6 months later, like I did.
9.You will be skinny but it doesn’t last.
I walked out of hospital, the same weight I was in my twenties. Apart from the arm cast, the scars and the hollowed cheeks, I thought I looked great – I could fit into all those skirts and trousers I had held onto in the vain hope I’d be a size 6/8 again. But the joy of being able to eat roars loud and unfortunately I’m now heavier than I was prior to my diagnosis. Determined to not be ‘fat with scars’, I’m pushing myself through a fitness regime with menopausal zeal. I look back on those early days of recovery with a fondness beyond the obvious gratitude that I’m robust and well enough to attend my fitness classes today.
10.The desire to be a cancer missionary, raise money and awareness will burn bright.
I’ve given speeches, talks, opening addresses at conferences, appeared on TV and radio, been interviewed and started this blog. I wanted people to be aware, to know it could happen to them, even if, like me, they never lived with any of the so-called causal factors. “It could be you” became a mantra. I don’t know if any of this has made a difference to others but it’s made a massive difference to me.
To be able to make people listen, to have them laugh and cry and feel and most importantly check their mouths, is an immense privilege. I have honed my speaking ability, my presentation skills, my writing platform and my ability to laugh at myself.
11.Why stop at 10?
That would be predictable and you know in your very soul that life can change on a dime. So embrace the learning, the ongoing curiosity about what’s happening to your heart, mind and body; stand up on the surfboard of change and love your life.
12.Attend all of your check up appointments. Don’t miss one.
Listen if I can get on a plane, fly 8 hours and drive 100 miles for a 10 minute check up appointment every 2 months, then you can make sure you show up too. Turning up to my first checkup without Craig was tough; we had seen Mr Bater together for every appointment; we were the practised double act, always trying to raise a smile or a reaction from this taciturn cancer consultant. 
On my own was a much scarier, lonelier proposition, particularly the time when I had developed potentially serious symptoms many hundreds of miles away. The sense of distance and vulnerability created by leaving my support network in the UK has diminished over time, after all, I know what it takes to get back to Mr B if I need to.
13.Frame yourself as a cancer adventurer.
It takes five years to gain an ‘all clear’ diagnosis, in the meantime I’m not fighting cancer or surviving cancer, I’m on a life adventure with regular cancer-free checkups. And long may this continue. When I outsourced my cancer removal to Mr B and his medical colleagues, I kept my cancer recovery responsibilities. I’m not a victim of cancer, I’m not battling it. I’m getting on with stomping, stumbling and exhibition-dancing my way through life.
Our time here is fleeting; I’m a tiny atom of matter in multiple universes of atoms and matter. I’m connected and separate and time-bound and slowly disintegrating and dying (hopefully of old age).
After all, we’re all destined to not make it one day.
So let’s make this day, and each day, count.
I’ve been stuck in my bubble, wallowing in its silence and peace. A less stressful, slower life beat. An opportunity to pause, to breathe, to observe. I focus on family, I make good on my promises. I am grateful and fortunate yet at the same time still unfulfilled.
Frankly, a few weeks ago I could not answer these questions myself. But one of the many things I am learning throughout this process is the importance of the mouth in the enjoyment of food.
I feel each one, taking note of the rich red of the tomatoes, the different greens of the apple, celery, cucumber, then there is the orange of the carrot, the yellow of the pepper. I look at the pots of yogurt and humus, I smell everything before putting it back down. I shut my eyes. This is a visualisation game. On my own. No Kim Basinger or Christian Grey involved. The purpose is to kick-start my recall. How to eat different foods with different textures, smells and tastes when half my tongue is gone. And I practice. Through touch and smell I can accurately guess what I have to eat before it goes in my mouth. But, when it gets in there, habit takes over and I chew and swallow quickly, anticipating the next mouthful. I have to stop. To remind myself of the purpose of this exercise.
The answers vary and some are hilarious. Many are similar to me. In a resting state their tongue sits at the roof of the mouth. Others find their tongue rests on the floor of the mouth. Some talk of pooling their food, rolling it around, others discuss the importance of saliva, one talks about the tongue working like a wave rolling the food onto the teeth to chew before pooling it back together and sending it back to the back of the throat for the swallow reflex to take over.
No burning question had been left unanswered. Many responses left me scared and uncertain. There were still unknowns ahead and they could not give me definitive and accurate responses. I signed the waiver sheets, refused the sleeping pills they had prescribed and sat down to explore.
And to prove that you can never be too clever, outside my door is a poster on how to put on the hospital gown. I had studied it the night before and managed to follow all instructions completely. So, after struggling with the compression socks and eventually managing to get them on, the theatre staff are more than amused to find me keen as mustard and as pleased as punch, all dressed up but wearing my hospital gown backwards. Apparently the poster is for visitors who are visiting infected patients. Only it doesn’t say this. So I get ribbed mercilessly all the way down to theatre and have to endure the anaesthetist insisting I put the thing on the right way before he knocks me out. And, they take off my knickers. There is no dignity left.
Purchased two button through night-shirts (‘arse oot hospital goons’ are to be removed as quickly as possible)
