Thank you to Anne for again letting me take up space in her blog.
My name is Liz Clough; you may recall a previous blog from me as a guest in Anne’s site in Aug 2016 called ‘Wondering if we have got it all wrong’ where I blogged about my experiences in the health system when I was diagnosed with breast cancer.
In the cancer world there has been quite a bit of publicity recently about a lady called Sophie Sabbage. Sophie got me reflecting again about my experiences and how cancer affects things.
Cancer permeates every aspect of your life but for me the fear was driven by my NHS care process; from the NHS letters dropping on the mat, to the text reminders. From saving the change from my everyday shopping in a tub for the pay and display carpark at the hospital, to writing a social engagement in my diary and noticing again a forthcoming appointment, scheduled in. From the overwhelming, trembling shakes and immediate urge to throw up in the waiting room, to staring lovingly into my families eyes and seeing the fear reflected back at me. From the doe-eyed look of sympathy and sorrow as results are shared with us, to the absence of any potential hope.
Searching for glimmers of hope that are, if you can find them presented as a by-product of the real reason we are here. I remember being told following the surgery to one breast that they could do the same to the other to re-balance the size. It didn’t have any impact at the time, I was too consumed, reeling from my (and my family’s) shock of the situation but, reflecting much later on my journals, I read into this that they must think I might live long enough to have that done.
Based on my experience and my individualised needs what would have served me better was some element of hope and a future.
Conversely I found hope and a focus on future in abundance across the range of my non NHS support. The significance and impact of living with fear is highly underestimated in our NHS system with little or nothing done to address it.
For me I believe receiving my results by post and then having a follow on Skype consultation in the comfort of my own home (clearly only possible where no physical examination required) would help to address much of the fear associated with attending clinics, sitting waiting in nervous anticipation as the clock ticks endlessly round, often past your allocated time – so much negative energy used up. Energy needs to be preserved for keeping well and enjoying life, for living well with cancer, not drained from us as part of the process.
Sophie Sabbage is so right (for me anyway) about getting sorted on the fear front. For anyone who has not read THE CANCER WHISPERER (either in the capacity of a health worker, patient or carer) I whole heartedly commend this book to you.
Thank you Sophie, I continue to work on it, for my family and I. With love Liz xxx
The Cancer Whisperer: Finding courage, direction and the unlikely gifts of cancer
A little update. I have been back in the system a second time. My histology results this time were shared with me by my breast care nurse over the phone in advance of the clinic appointment. This is a great step forward for me (and the NHS in my experience) it limits the amount of time i am in worrying limbo and the impact of that situation on my physical health. i can now prepare myself for the appointment do my reasearch, create my questions and be ready for the conversation. This will not only help me emotionally but will mean we can have a more meaningful discussion with more liklihood of decisions and outcomes at that appointment, speeding up my care pathway and potentially avoiding another appointment, saving everyone time and resources. So thank you to my breast care nurse for listening and responding to my request for information as soon as it is available. Feeling grateful x