Didn’t sleep great last night. My mind is so full.
The biggest worry I have is that my body might not being strong enough physically, to get through the surgery.
Having lost my Dad, Granda, Nana, Cousin and friends to this cruel disease, I am not frightened of possibly dying….I am terrified of how I go about preparing my husband, my children, my mother & brothers to accept the harsh reality that I might not make it through! Is this normal? How in the heck do people prepare for these life threatening scenarios.
I think back to my Dad & I having a conversation about what he wanted played at his funeral. He couldn’t talk to Mam about these things without her getting upset so I had to be the strong one. Then he would break down and say “I don’t know how Mam is going to cope without me, I don’t want to leave you all”
(Dad had been back & fore to his GP to talk about feeling unwell for a long time. He had cancer before and beat it but there was no reference made to his earlier cancer when visiting his Dr. on this occasion. Blood tests were normal, fit test was normal….there were no need for scans apparently…then the pandemic hit.
Fathers Day fell on my Birthday in 2020, we were in lockdown. I was so worried about Dad and needed to see him. I am an autistic female and felt the lack of contact with my unwell Dad was impacting on my mental health and his, so I put on my sunflower lanyard and proceeded to make the 50 minute trip. I did not go into my parents home. I remained outside in the garden for the short time I was there. Dad looked awful.
He had a heart attack that night and was taken to hospital by blue light to the local hospital. We were not allowed to be with him. Three days later he was given the news “alone” that primary cancer within the bowel had caused secondary disease in the liver, lungs, kidney and the heart was the next organ to suffer weakness.
Six weeks later my hero died at home because there were no beds in the hospice. My darling Dad did not deserve any of this. We were allowed up to 20 people at his funeral, at that we were lucky when others were allowed much less while Boris partied and danced with colleagues down in London)
Yet here we are again….THREE YEARS I spoke about my rectal bleeding to various medical professionals. My own fit test normal at first just like my Dad’s and then 400+ and my GP chose to ignore a note from the lab regarding my bloods when the CRP was normal “just like Dads”. That note could have potentially helped them diagnose my cancer sooner. A 4cm mass didn’t just grow overnight within my anal canal but yet a sigmoidoscopy and two colonoscopies didnt detect it either but it should have been seen on the first sigmoidoscopy in Sep 2019 because I cried out in pain during the retroflection as I felt the scope was pushing or dragging on something but they simply stopped & didn’t continue. Simply told me the result was normal although they hadn’t completed the procedure. In my case it was the final viewing that would have been important. Why? because the cancer is in exactly that place where I made the discomfort clear in 2019. I had coped extremely well throughout the whole procedure till that pain hit me like a bolt from the blue.
The hospital have no wish to take any responsibility for the neglect in my own case or that of my Father. It’s a complete disgrace, yet here I am trying to figure out how I prepare my neurodivergent family for the reality that I might not make it out of surgery alive!
I couldn’t make this bollocks up!
I feel so drained and wish the universe would just give me a break. Tearful today but going about my business while my husband knocks the hours in during harvest.
Prepared an email for my solicitor to have my Will updated and some advice about my husband adopting my son (preparing for the worst) Anything better than this will be amazing but for now I have no guarantees so need to be focused & practical.
