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.
It’s a warning and a blessing to still be here and to be able to hug, hold and communicate with friends and loved ones. Over the passage of time, memories smooth out some of the trauma and daily gratitude often slips from the conscious to the subconscious, only popping to the fore when reminders snake up. This is how it should be, it’s how the system helps repair the self.
The people in Manchester and London who turn out in their thousands, stand in brave defiance of any act of terrorism. They choose to not be cowed in the face of mad extremism. They turn up, young and old, girls and boys, men, women and gender neutral, gay, straight. Christian’s, Muslims, Buddhists, Hindus. Atheists – no matter how they define themselves – they stand together across our country. Remarkably so many enjoying the concert in Manchester tonight are the ones who got away two weeks ago.
Up to this point, I have been fairly quiet about my cancer. I haven’t been deliberately hiding it, I know I need to take the time to get physically better, learn from and work through the changes that it brings and to embrace my new sense of self and identity. I also know that I need to find a new job in the New Year and that finding a new role is likely to be more problematic with a recent cancer diagnosis and recovery story tagging along behind me.
In one morning, I blow the control and management of my personal experiences right out the water. I run starkers, out of the closet with a primal Tah Dah!!
But as I have also agreed to do a l
Surely after the mouth cancer and the removal of half my thyroid, I am done for the year. Surely it is my turn to be well after all the healthy living, breathing techniques, positive mind work, the alternative therapies, vitamins and new knowledge. I convince myself it is nothing, they are being extra careful with me because of my recent cancer adventure.
This is not a cancer to be taken lightly. Its effects are more visible and potentially more debilitating than many others. Removing oral cancer, if it’s caught in time, can leave long-lasting affects on the speech and swallow function, on the function of the jaw and voice box, on neck and shoulder movement and additionally – in my case at least – a significant psychological impact created by extensive scarring to the mouth, neck, arm and stomach and having to learn to speak differently. 
In many cases, mouth cancer survivors have to cope with developing a new self-identity.
We need to take responsibility for our own mouths. Pay attention to ulcers which have not healed within three weeks, red and white patches in the mouth or any unusual lumps or swellings in the mouth, head and neck area. Anything unusual in your mouth, anything that changes and stays changed for more than 3 weeks – go and see your dentist. Specifically tell them you want to discount mouth cancer. Put that thought in their head before they examine you so it’s in their conscious brain.
It doesn’t look serious does it? But it was already a stage 2/3 cancer (I didn’t know this at the time) as it had spread into a lymph node.
As during the past twelve months, with the exception of the inevitable work commitments, he has been at my side. And at the same time, he has changed his job to a much higher profile role, lost his Mother and has been caught in the middle of a protracted and messy long-term sibling disagreement. It’s no exaggeration to state his tenacity and commitment has been something of an inspiration for my recovery.
He has always told me daily that he loves me but now he says it with an intensity that I have no doubt of my responsibility for doing all I can to get better. He regularly reassures me that he still finds me attractive, particularly during those days when I find my scars to be hideous or my skin-heavy tongue to be troublesome. He encourages my forays into alternative and holistic healing, in-spite of any personal doubts. He listens hard to my misshapen sounds and tunes out to my now atrocious singing, game fully joining in when the screeching gets too loud. He laughs with me, and at me, when I’m being ridiculous. He plans surprises big and small to keep me looking forward, supports my need to write this blog, sometimes correcting my grammar but often just letting it go to free my voice. He has gone from sleeping the sleep of the dead to waking at every sound and now seems incapable of sleeping any longer than 6 hours a night. He juggles his work commitments to accompany me to every hospital appointment and consultant review and apart from my banning him from coming to the intensive care ward, has been by my side every hospital day while pasting on his brave face for Roscoe every evening. I don’t know how he managed to get through the day of my 12 hour surgery and emerge still sane. I do know from the increasing amount of grey hairs on his head and, worry lines on his face, that my diagnosis and on-going recovery has been incredibly tough on him.
I would restrict the alcohol levels and insist on far less meat and far more vegetables, not just as a side dish but as a main meal. I would encourage him to have more “me” time, re-join the golf club for example, and to spend more time with his mates, away from home stresses. I would shout louder for him, for help, support and care. I would have him go to facials and back massages so he would relax and enjoy more pampering. In short, unless he feels cared for, how can he give so much of himself without he himself becoming depleted and sick?
I’m the Mother always up for the 100metre dash at school sports days, who swims and skis, dances and laughs. I’m assertive. Goal orientated. Caring and supportive. I am lots of things. I am Not sick.
through the door barrier. To wear it requires a mindset of curiousity “how can I make this better today?” I am aware that my enthusiasm is not for all. In some ways I am lucky to have missed the steady slow demise of these past few months; lucky to have learned new coping techniques for dealing with change outside of my control; lucky to know what’s important, what’s transient and what’s downright trivial in comparison.
Whether its company takeovers, redundancies, ending relationships, reviewing education options or even the current interminable Brexit/Brexin debate in the UK, it all creates inevitable change. Our choice is how we choose to face this, how we move on, recognising that there are days when this is easier than others. Let’s face it, even the more perfect souls have down days too.
I avoid the phone. I don’t invite myself round for coffee or invite friends over for wine or gin and chat. I’m conscious of people having to ask me to repeat what I’ve said. The word ‘pardon’ or phrases like “excuse me”, “say again” or “I didn’t quite catch that” have taken on ridiculous proportions in my head. For someone who has much to say, it’s really frustrating that I can’t speak too long without jaw pain, tiredness and the inevitable slurring. On days where I’m being kind to myself and more mindful, I remember that I’m learning to improve my listening, to use my NLP to look at the structure of the conversation, not the content. But there are days where I beat myself hard, where I push to enunciate more, to exercise more, to say more, socialise more, be more ‘normal’. And the price is a lack of energy, increased levels of pain, a heightened sense of self-consciousness and greater irritability and tiredness.
My desire to take action, to get over this, to move on, burns fierce-bright. My good days tease my down days with possibilities that achingly remain just out of reach. I know I will get there, I just don’t know when.