No, it’s not ok. Everything’s rosy. No, I’m not ok. I’m so very thankful.
I’m broken and I’m mended. I am stuck between a rock and a beautiful beach.
I feel like my life is picture perfect yet my mind is in tatters.
Cognitive dissonance is a term that keeps recurring from my academic past. It is used to describe the uncomfortable feeling that arises from holding conflicting views/beliefs.
So, this blog is written from both sides of the fence. Some of its angry and sad and has some swearing in it. But that’s my life. So, if you don’t like then you can choose not to read. If you read, you can choose to be offended or not – it’s up to you. The grammar will be shot (I don’t care – I’m crying as I write this but I feel if I don’t actually get this out then it will continue to fester and hurt me further) so if your part of the Grammar Police – send violation notices to the email. I shan’t read them, and that incorrect ‘your’ was purely for you.
My darling youngest daughter had cancer. Its nearly 18 months ago … and yet when I recall that day it feels like yesterday. It hurts. I feel physically sick. I’m sad, but mostly I’m fucking angry. I’m fearful for the future.
For as if the
· fear of dying young,
· operations for inserting a Hickman Line and taking a bone biopsy,
· the concern over X-rays, MRI’s and radioactive bone scans,
· gruelling sickness from chemotherapy,
· horrendous mucositis from chemotherapy so bad that morphine is required,
· gastrointestinal infections (antibiotics pumped into her system during febrile neutropenia wipes out ALL gut bacteria, so the body starts working against you and you can get infection like C-Diff which is funnily enough treated with MORE antibiotics),
· isolation from friends and family for nearly a year,
· absence from school for an entire academic year,
· hair loss and impact on teenage self-image and esteem,
· seemingly endless amounts of individuals who insist on bloody assuming that as her hair is short her gender is OBVIOUSLY male – and feeling the need to comment on ‘him’ and believe me not even earrings and dresses can reduce this one,
· weight loss that means constant badgering to eat and drink when its the last thing on your mind or you cant actually open your mouth due to ulcers or nasogastric tubes which feel like a fish bones permanently caught in your throat,
· hearing loss that results from the chemotherapy (non-recoverable) and the impact that this has on everyday life – and getting used to hearing aids. Again, more visual reminders of frailty,
wasn’t enough for her to have to cope with, she had to have her leg amputated above the knee. A permanent, no hiding from this one, no masking it … reminder of how cancer has attacked her.
My beautiful, perfect child had to and still struggles with much of the above list as well as deal with losing her leg, learning to walk, learning to wear a prosthetic leg (ask any amputee – even if you get an amazing prosthetic, it ends up being hot, heavy, sweaty and sodding uncomfortable). Its not fair. It shouldn’t of happened. I don’t want it to have occurred. I don’t want this version of reality for any of us. I’m angry at cancer. I’m angry not enough attention is being spent on rare paediatric cancers – the cancer my daughter had hasn’t seen any survival rate increase in 25yrs. It’s not fucking on!
I didn’t do anything wrong, we couldn’t have prevented this cancer occurring. Yet I feel like I have failed her in some way. As a parent, it’s your job to protect your child from harm. And I couldn’t. I still can’t either. She has x-ray’s every two months to check to see if its recurred. So, we have ‘scanxiety’ at each appointment waiting to see if its reared its ugly head again and we return to the nightmare. I live on tenterhooks, trying not to plan anything and feeling trapped in a world where monsters do live and attack.
And now treatment is over, most people assume that everything must be “tickety-boo and ever so pucker” and we are just getting on with life – well I’ll let you know something … cancer is more invasive than the bloody tumour. Even after the cells are removed it haunts you and your loved ones. The mental, emotional and financial burden is subsuming. So often, I’m so far from bloody ‘fine’ its scary … I’m holding it together by the skin of my teeth …
The other side of my life is a pure joy. I have the most wonderful partner and husband who is the love of my life. My compass and confidante. He keeps me going, motivates and inspires me. He loves me. He supports and encourages and provides so much for us all.
I have 3 children who are beautiful, perfect, inspiring young individuals who have the qualities of strength and courage tattooed through their hearts (they don’t see this yet but they will). They have been through so very much, they have had their faith in stability and constancy brutally shaken but ‘still they rise’ and I couldn’t be any prouder of their determination, love and pure grit. They have far to go on their own journey’s and I am excited for them.
I have family and friends who have supported and continue to support us. Some who have been there from the very beginning and some whom we have met and connected with during the last 2 years. I don’t know how I would have coped without the emotional support. My oncology friends have kept me going in some very dark times and encouraged and supported me.
I have much to be thankful for in terms of having a lovely home and means of travel.
My experience of the NHS in general has been wonderful, I am lucky enough to call some nurses and support workers life friends and am very grateful for the care and support and love we have been shown by professionals.
Yes, my daughter has lost her leg but if that means that I get to keep my daughter I will learn to accept this. She is greater than the number of her limbs. The world needs more individuals like her. Her tenacity and stubbornness, her humour and her kindness, her determination and her guts. I am in awe of how she copes.
So, yes I know I am lucky. To be a wife and mother, friend and family member. To love and be loved. Yet … the duality of perspectives imprisons and restricts me. I know the reality of each side of my life – I just currently don’t know how to cope with the dissonance between the two and up until this point many who know me have no bloody idea what I go through on a daily basis. I currently feel that I need time and space to try and heal.