Be kind, be grateful, be happy.

So this week I’ve been working with these brilliant dudes  Fabian Seymour and Jo Lidster teaching research and innovation to keen minds, eager to learn about the innovation pathway so they can be agents of change when they leave the University and take up employment; being a researcher and an educator is awesome sometimes. This week I have also been working with some great people at the College of Radiographers on patient and public partnership – it’s been an  amazing week and it’s been non stop. I finished the week on a high watching our final year undergraduate students at the end of their week on the Research and Innovation in Health course delivering their innovation pitches to the Dragon’s Den-they blew me away they were so good.

After such a great week I left work on Friday on a high. Flicking through my twitter feed on the train on the way home I read a tweet from a beautiful woman with secondary breast cancer who has just received the devastating news that she only has weeks to live. The photo attached to her tweet was a holiday snap of her with her daughter, it was a beautiful picture of a relationship that will be cut short too soon, and in a carriage full of strangers I cried. Tears streaming down my face because I could think of no words to offer this lovely woman. It was an abrupt reminder that it was time for me to switch off from work and focus on what’s happening in my personal life,
It’s funny how some moments in life stick in your mind.  I remember asking one of my daughter’s friends at school (the lovely Chloe) what she had in her packed lunch one day. She replied “I’m hoping for crisps”. It made me laugh then and it still makes me chuckle now. I don’t think she got crisps that day, but then in adulthood we often don’t get what we hope for.

When I underwent a mammogram and then ultrasound for a suspicious breast lump in March this year, I knew almost instantly from the measured words of the lovely radiologist that it was going to be cancer; when he moved on to biopsy the lymph nodes under my arm it kind of sealed it for me. So when I went back to clinic a week later with my husband for the biopsy and imaging results I knew what was coming, and we (my husband and I) were prepared. Like the the lovely Chloe I had in my mind something I was hoping for. A nice small (less than 1cm) low grade tumour and no lymph node involvement would be lovely thank you; I didn’t get what I’d hoped for either.

I had drawn this imaginary line in the sand of tumour size and spread, that I felt I could cope with. So it wasn’t the small, low grade tumour I’d hoped for, but at least there wasn’t any positive lymph nodes-I could cope with that, my line in the sand had shifted a little, but it was ok, bring on the treatment.

Surgery day came and a small hard blemish had appeared on my breast that caused concern, the surgeon wanted to see it on ultrasound before theatre, so off we went. The small hard blemish as it turns out was nothing. Although the radiologist’s measured words hinted at something more worrying, a second tumour previously not identified and distinct from the first lesion. A devastating blow delivered moments before heading down for surgery. Our heads were in a spin, this news had implications for the surgery I was about to undergo and we had no time to process it, or understand the implications. But it was fine, the surgeon had altered his plan, admittedly on the fly (not ideal), and we were off, treatment had begun.

Fast forward two months and ok, it hasn’t really gone according to plan. A further two operations and a positive lymph node later (yes a damn positive lymph node) and I’m back on Monday for operation number 4. My line in the sand has shifted not once but several times now. The most recent at a pre-surgery clinic appointment when I realised the one thing I’d always imagined would be my breaking point, the one thing that I felt I would not be able to cope with, was now staring me in the face. My coping strategy was pushed to its limit, what was I going to do now?

Like so many others have done I’m sure before me, I held back the tears in the clinic room, through the hospital corridors and made it back to my car before the avalanche of tears came. I’d gone alone to this appointment not expecting bad news, my oncologist husband had a clinic with patients that needed to be seen, so I’d faced this news alone.

So what do you do when the line of acceptability you’ve drawn in the sand is breached so badly it’s literally in the sea? Well, I did what any self respecting modern woman would do, I turned to Google. Searching the internet I quickly realised two things.  One, I’m actually very lucky, there are far more women out there going through far worse things than I am (had a word with myself instantly), and two, I can make a plan, I can take control of somethings, and I can turn a negative life event into something truly positive. The best part was I shared my plan with my closest friends and family and they all endorsed it, helping me to shape and refine it, I know I am truly blessed.

So I’m here now facing operation number 4, it’s not where I wanted to be. I’ve already been through the slow painful process of rehabilitation following surgery. Hours of persistence with arm exercises and a lovely, amazing Pilates teacher who showed me such kindness it made me cry, and I have regained full range of motion in my shoulder joint.

 

This photo of me doing a handstand was taken just this week, I was so chuffed to be able to do this again. But on the snakes and ladders cancer board, by tomorrow evening I will have slid down that big giant snake no one wants to land on, right back to the beginning of the board. I will have to work hard one painstaking square at a time hoping to avoid further snakes (infection and lymphoedema) back up the board to recovery.

I mentioned in my last blog my love of Shakespeare, Hamlet is one of my favourites, one of the great tragedies. Even better than Hamlet though is Tom Stoppard’s Rozencrantz and Guildenstern are Dead. I have been thinking about this play a lot this week. I love this play. If you are not familiar with it, the two main characters of Stoppard’s play (Rosencrantz and Guildenstern) are minor players in Hamlet, two of his old school friends and courtiers. Stoppard’s play is about existentialism, it is brilliantly conceived and beautifully written. Off stage in Hamlet is on stage in Rozencrantz and Guildenstern are Dead, and vice versa. The two characters struggle with the meaning of life and their purpose within it. This lovely quote below from Act 2 could easily have been written about the cancer journey.

“we cross our bridges when we come to them and burn them behind us with nothing to show for our progress except a memory of the smell of smoke, and a presumption that once our eyes watered.”

Burning the bridge behind us is a reference that goes back to Roman times when army commanders would order the burning of a bridge to avoid the army retreating, soldiers had to fight to stay alive.

This eloquent description of the situation Rosencrantz and Guildenstern find themselves in resonates with my cancer journey to date. I have faced each operation at the point it has occurred, no point in worrying before then, but with each operation there is also no option for return to a pre cancer self. There is only the option to move forwards to a new version of oneself, and there is little to show for each struggle experienced except the memories of pain and discomfort, sickness and fatigue that linger once the physical manifestations are gone.

So what exactly is the point of this blog? I hear you ask.

The purpose is two fold;

The first is to highlight that however desperate things can seem, we can attempt to seize control of something, even if the only thing we can control is how we react to the events that are thrust upon us. This in itself can bring some internal peace.

Secondly, despite the moments of sadness and trauma in my cancer journey so far, I am incredibly happy. In part, this is because I have experienced unbelievable kindness, the best of humanity, and I am so very grateful. This doodle above in the header of this blog that my daughter drew the other day while she was eating her breakfast before school kind of says it all.

Be kind, be grateful and I would add a third, be happy,

“Be happy- if you’re not even happy, what’s so good about surviving?”

Rosencrantz and Guildenstern are Dead (Tom Stoppard 1966)