This summer I had an epiphany, at long last a turning point with a sign post that said ‘living’. My husband and I were going to a wedding, having our first night away without the children in over 2 years, how exciting!
But facing a room full of people is daunting for anybody when you don’t know most of them and those you do are acquaintances you haven’t seen for 30 years. Throw in a chemo inflicted patchy hair do, the realisation that your small talk answer to ‘What do you do?’ mainly involves hospitals, and knowing you can't even drink alcohol to smooth the edges, and things start to get very nerve racking. But I was determined to be there for my oldest friend. I spent ages shopping on line to choose a dress, my change of body shape needed a change of style, not to mention a bigger size! On the day of the wedding my wonderfully kind hairdresser squeezed me in early to style what there was of my hair trying to cover as much of my head as possible. I applied my make up, as learnt at a ‘Look Good Feel Better’session, discovering that a bit of concealer worked wonders covering up picc line scar, and off we went.
It was nigh on blowing a gale as we walked along Brighton sea front, but thanks to a lot of hairspray we arrived intact. In the ceremony room I got a seat by an open window to help prevent the chemo/hormone induced sweating from undoing my earlier hard work. We watched my friend of 38 years marry the most wonderful husband, and then we went for a ride on a carousel on Brighton beach. It was liberating.
I thoroughly recommend a carousel ride as excellent soup for the soul. Try it sometime, and for best effect, do it without the children!
Since I was diagnosed I’ve brushed aside comments that I’m ‘inspirational’ and ‘brave’, but it was the Groom’s words to me as we entered the reception that finally made me realise how far I’d come. He simply said how thrilled they were to have me dance at their wedding, and boy did we dance! For 3 hours my hubby and I danced and danced, I’m not saying we were stylish, but wow we had fun! We simply hadn’t danced together since before all this nightmare started. I felt alive. I felt hopeful. I felt, dare I say, normal.
Only a couple of weeks earlier I’d been thinking that I’d be really thankful to make it to Christmas, that to expect anything more than that was too optimistic. I felt quite washed out. I’d over done it at a stem cell donor registration event, I didn’t believe I could be ‘me’ again. The me that ran around juggling lots of balls, getting stuck in, doing things to the absolute max. When I shared my thoughts with my medical team they looked more worried that I’ve ever seen them. They huddled round me, scooped me up, told me there was no clinical reason to think that way, and then the wise Sister said ‘You may not be able to run a marathon Jo, but you can run lots of 5ks, and they will add up to a marathon.’
Those words set me on my way. When I told my psychologist about the wedding he suggested I wrote a letter to my poorly self from my well self, all about the amazing hope I was feeling. If and when I take a dip, I can look back at that letter to remind me that things will get better again.
I have learnt that ‘something’ is better than ‘nothing’. I have an alarm on my phone so every morning at 9.15 I am reminded that I don’t have to ‘do it properly’, I just need to do something - be that run my small lampshade business, cook the tea, or simply have a nap. Sitting in the garden with a coffee and a book is absolutely fine, in fact it's time to be relished.
I’ve relearnt to pace myself, to spread activities through the day and the week so I don’t tire myself out. I’ve learnt that being engaged with people is the most important thing.
I worked through my worries about the future by getting my house in order. So all the dull filing is done, I’ve made a list of passwords so my hubby can pay for the school dinners. I’ve sorted out my memory box so it will mean something to who ever finds it. I’ve waded through the dearth of the girls’ childhood paintings so they have a box each that also includes other precious memories like the clothes they wore as new borns coming home for the first time. I’m working my way through all our photos so that there are books for every year since the girls were born. That might sound morbid, but actually it’s just sensible, the sort of thing that we all should, but never get round to doing. Being organised has helped me release a worry about what mess I could one day leave behind, be that in 5 or 15 or 30 years. It’s helped me deal with my mortality so I can move on.
I’ve realised that when ‘stuff’ happens, like waiting 3 hours to get your car fixed after breaking down on the M20 in the pouring rain, or a child being too ill to go on a much anticipated theatre trip, it’s nothing to do with leukaemia, it’s just life. It’s just the hiccups that happen to us all. There's no point blaming everything on cancer, it's an evil thing but not everything is its fault!
A few days after the wedding we went on holiday, our first in 2 years. A summer holiday in Devon and Dorset that was actually warm and sunny, mostly. The pace of life down there is so different. I left my mobile turned off all day, and nothing bad happened. I dressed up as a pirate at a castle, and whilst the kids ran off in embarrassment, nothing bad happened, it just made a few people smile and the pirate volunteers feel useful. We enjoyed the simple pleasures of building sand castles, collecting shells and flying kites. Idyllic? Yes mainly, with the usual dose of family trials thrown in!
So I finally feel like I am able to live life life. My treatment still has 15 months to run, who knows what will happen in that time, let alone after, but I’m working and socialising and making what I hope are happy memories for our children.
For those of you suffering and battling through treatment this might seem like a pipe dream, it did to me 12 months ago, but hang in there. Things can get better, there’s always hope, small steps will take you to great places. Treat your body as a whole, the mental battle is often harder than the physical, so don’t be afraid to talk about it.
For every one else, just slow down a bit! Don’t be afraid to say no, to ask for help, to take a break, have fun, enjoy the moment before it passes you by. Don't feel the pressure to run a marathon. If we all just keep working at those 5km, just imagine how far we can go.
