Well 2015 came in quietly for me. I did manage to see the fireworks in Dubai and I did raise a small glass of bubbly and kiss the hell out of my lovely husband. There were tears also, tears of relief, hope and also trepidation of what the future holds for me.
I decided that I really needed to voice myself and tell the hospital how unhappy I was in their treatment of me. After all they had my care in their hands and they tried to kill me and fob me off saying it was my fault…….I was brought up never to question professionals but I needed an explain action and an apology. I wrote to the hospital to ask for a release of my notes. To my surprise reports were sent to me and there was no mention of the chemo leak I had experienced….WHAT! How dare they just ‘skim’ over that significant event? I demanded a meeting with the director of the hospital. Paul and I met with her and she listened and after, she suggested to me that I had had a personality clash with my oncologist………oh that’s ok then, is that why he tried to kill me!! I was flame throwing, volcanic explodingly angry and and told her what I thought of that! She agreed to go away have a incident meeting and get back to me.
A week later Paul and I went again to a meeting this time with the head nurse in attendance who’s ‘death stare’ was the best I have ever seen! They handed me a bad grammatical, wrong dated letter as an apology and then attempted again to insinuate that it was my fault! Apparently I have ‘funny’ blood that clots too quickly that caused the thrombosis in my port line and thus caused the leak! Paul said if that was the case why didn’t all the chemo leak? Ha my clever hubby! Answer…because the clot suddenly moved allowing the chemo to go in! I mean really do they think we are bloody stupid! The other reason they gave is that the needle may have moved because I did and it popped out, leaked, then popped back in! What they really meant is that the needle was not in properly to start with and then because I moved I myself popped it back in and this prevented further leaks! Will they admit that….absolutely not because this is negligence. Talk about going around in circles and banging your head against a wall. The only positive thing that came out of that meeting, is that they have now changed policy to include an investigation when no blood draw presents itself. This may stop other women going through this pain and for that I am very proud of myself!
I’ve now found myself a lovely new oncologist who talks and discusses my treatment with me as a human being. He has specially trained staff who don’t do all the jobs in the hospital, but are dedicated oncology specialists. He and they were shocked at the treatment I had received and they apologised to me on behalf of their profession. They also said the leak was due to wrong needle placement….100%
I’m now on hormone monthly shots and tablets for the next 5 years. My body is still swollen and in pain but each day gets better and more tolerable and I wake up each morning thankful that I am now being listened to and I’m in safe hands!
The hardest thing to deal with now is people’s misconception that I’m well because I’m not doing chemo. I’M NOT! I’m bloody exhausted most days and am using all my adrenaline to get through the day, so please give me a break. Sometimes I will walk a little slower, I need to have a nap, my brain is not as quick as it was and I do forget things. My husband says I don’t give myself a break, but that is because I try my best to not let people down. I’m the Duracell bunny who just goes and goes until I break! So I’m begging you I won’t give myself a break so I need you to say stop, slow down it doesn’t matter, take a rest!
My lovely friend and fellow breast cancer warrior Ellie sent me this link and boy oh boy it sums up especially 1 and 3!
On the plus side my hair is growing back and I now have a baby soft fuzz, lovely long eyelashes (thank you revitalash) but my eyebrows are still sparse and weird looking, but hey ho, you can’t be lucky in everything hair.
Peace love and hugs xxxx