It’s been a rollercoaster of a week, another one! If I allow myself to think about it too long, it would be easy to dwell on the fact that now I would be a week post op and on my way to recovery. Instead, it been a week of long hard conversations with NHS organisations up and down the country trying to establish whether DCIS is treated under the cancer pathway or not and what the risks are in waiting for my treatment aside from the fact that I am not medically fit at the moment to proceed with the operation.
I spent Friday 6th and much of the following week making calls trying to expedite my surgery as the hospital initially advised me my surgery would be delayed until the end of August and possibly the beginning of September. Of course, no one is quite as concerned for your welfare as you are.
It takes me back to being pregnant with Ben, I was 13 weeks pregnant before I realised. I’d been breastfeeding Gracie at the time and was blissfully unaware, putting my tiredness down to running around after Gracie who was seven months old at the time and having returned from a driving holiday in France and Italy. I found out a few days before my mum was diagnosed with another cancer, this one would be terminal and resulted in the next six months of my pregnancy being spent every day bar none, in hospital visiting my mum is was very difficult for us all but looking back, it must have been most difficult for my mum. Her resolve and strength was astounding as was her resilience. Nonetheless, it was frightening for us all and all I wanted was for herto meet this growing baby who in spite of everything, was thriving inside of me.
My obstetrician wanted me to have a Caesarean section as I had a section with Gracie and so was deemed too high a risk. Having spent all this time in hospital caring for mum, the last thing I wanted was a clinical birth and instead I wanted a home birth. I was fortunate enough to meet a midwife who believed in me and the over medicalisation of the guidance I had been given. I remember as I was told in the morning that my mum may only have a week to live seeing the consultant obstetrician in the afternoon who talked to me as though I was reckless, she was insistent, I was putting my life at risk and the baby if I went ahead with anything other than a caesarean. There was some truth in what she said, if my uterus ruptured, it would be catastrophic but the likelihood of that happening, (and I’d spent several months researching this at the highest level), were very slim. Sometimes, you just have to speak out and in this case, to pardon the pun, push back a little. My mum didn’t get to meet Ben, she passed away three weeks before he was born. We always say they met in Heaven. I went on to successfully deliver Ben at home in what was a fabulous home birth looked after by Lesley Price and her team. Later I went on to advocate the woman’s right to choose and I’m sure mum was powering and steering some of those decisions from above.
I felt then as I do now that it’s so important to ensure that we all have a voice and that is why I felt so passionate about being a champion of sorts. I am fortunate, I know who to call, what to say how to press for a better service and even though I think I know, it has been emotionally draining and wearisome this week to be constantly passed from pillar to post. At the end on the day though, it’s not about me, it’s about us and in those moments of self pity, it helps to remember how we can make difference to other people by channeling our efforts to the wider good. There are so many others, the elderly, those alone or with mental health issues who simply take at face value all they are told and do not question it. We need to assert our rights as patients and ensure we gain access to the best treatment at all times for all people.