The amazing professor that offered me a life line on the end of the conveyor belt of cancer basically let go of my hand (see previous blog post). He watched as I fell into the dark empty bin my arm reaching out to him grabbing air as I went. He just watched, like a small child watching a tv show, uneffected, lying on his stomach hands cupping his head gazing down at my descent, probably got up afterwards, brushed down his trousers and made a cup of tea......
Having been very helpful and supportive and positive offering to cut bits of me out and analyse them he then refused (or rather ignored) my request for a biopsy on my liver to sequence the cancer which he had previously agreed to, I just never heard from him again......and for him....that was ok.
I get this increasing feeling that I am just one of many many many many cancer numbers.
I went for a private second opinion in Harley Street, they were great and advised the next chemo up for offer by my NHS team. Eribulin, was a good one and that she agreed it was a good option. She also put me in touch with a Private Research Institute that were trialling a new targetted therapy for a specific tumour receptor. She also reccommended I be tested for the BRACA gene (which should have been done at the start of my treatment before commencing chemo back in 2016 as any positive results could impact on treatment options) I am still not sure why this test was not carried out as my cancer 'team' were aware of my families history of breast cancer on both sides of the family. Anyway, I think it is safe to say that should the biopsy I am having done next week in London come back positive for the BRACA gene, I will most definitely be seeking legal advice being as I am now on my 3rd line of treatment and have had constant progression.
The lack of respite in treatment now is really getting me down, I hardly have a life outside of the hospital these days, blood tests every week chemo for two weeks then one week off but still have to go in for a blood test on my week off.....I try to be positive but some days, like today for instance, I am still in my dressing gown having managed to do the basic of house duties, I feel my energy depleting and I can't be bothered to resist it anymore. But I have managed to carry out some much needed Cancer admin today which will hopefully be of benefit to myself anyway.
Also the hospital refuses to scan me using an MRI. As I have mentioned before I had a bone marrow transplant as a child which resulted in me having my lifes dose of radiation over two weeks in 1988. MY LIFES DOSE!!!!! 1400 msv thats alot of radiation.....Everytime I have a CT Scan that is 7 years of natural radiation in one hit to my abdomen!!! I have had loads and always on my abdomen and guess where all the progression is? I have requested MRI's each time but to no avail and now I am having to consider paying for an MRI to avoid unneccesary exposure to radiation my body just simply should not have when there are other options available. The hospital refuses to write down in an email the reasons why they will not use an MRI, they know that what they have been telling me is essentially, just aload of 'bbbbb......'brush off'. The reason is the NHS can't afford the extra time it takes to use an MRI! are my best interests at heart? are my daughters? NO. They are meeting targets and deadlines and saving money so that someone with an over inflated ego can get some kind of prize for being efficient and get their face put up on some staff recognition wall. They put me at risk of further cancer KNOWING that an MRI is less harmful. Does it matter if I die because I have been exposed to too much radiation? Well there is no evidence is there that, that is what caused the progression, that's their get out clause but when you look at the physical amounts I have had to my body and where the progression has occurred you don't need to have a PHD to realise that it is not good I had fractioned doses of 1400 MSV over 2 weeks in 1988 and have just found this info online A cumulative 1,000 mSv (1 sievert) would probably cause a fatal cancer many years later in five out of every 100 persons exposed to it. * There is documented evidence associating an accumulated dose of 90 mSv from two or three CT scans with an increased risk of cancer.14 Mar 2011.. so 2 or 3 CT Scans are a documented risk to anybody even if they have not had their lifes dose!!!! so I die. and that's ok because the theory is I was going to die anyway so they don't need to be cautious.. it just happened abit quicker perhaps...and that cancer conveyor belt just moves along and someone on a breast cancer forum recognises that I have popped my clogs and fallen in the dark cavernous cancerous bin and I have now gained my breast cancer 'wings' and I become an 'emoji' and get more facebook ' sad face/ heart likes' and comments than I have got my whole life.....and that is it and off I trot in my wicker basket forever in a field somewhere, probably glowing at night and perhaps a farmer will wonder why nothing ever grows in that particular patch.....
I am trying to focus on what little hope I have got left....... honestly I am, which is of course the trial I am being assessed for, they are looking into the MRI assessment procedure for me as oppose to CT During a trial it is usual to have 15 CT scans...I think we can safely say that would finish me off.... They have informed me I should have had further biopsies on the NHS to check the receptor status of my cancer, it is standard practice in most hospitals, the Dr I saw swore about the fact I hadn't had this basic protocol. So I just fold my arms on the table and feel like just putting my head in my folded arms saying 'What is the point?' While he stomps down stairs assuring me he will be writing to the hospital......................................... I focus now on London, the names I have been given the emails I have where I can ask questions and am not made to feel like an insolent 5 year old for asking them as I am not 'Towing' the line. I continue to take my metabolic protocol (metformin, statins, antiparasitic and antibiotic) to try and starve the cancer. I hope it is doing something, I have had no ascites for over a month now so something is doing something.........Someone the other day told me that a positive mind can really make all the difference and that I should be positive, perhaps they are fed up of looking at my glum face.........I have also been told to be 'brave' and to stop getting upset..I have learnt it is not convenient to others to be upset and is apparently a sign of weakness........I will try when I can be bothered and perhaps I can do some kind of cabaret when I am feeling abit better, or maybe I should just shovel my bodyweight of anti depressants in my face. I forget that I should only talk about nice things, unicorns, rainbows, that kind of stuff, I should be cracking jokes all of the time to keep everyones morale up, or perhaps I should post pictures of my smiling bald head and skinny body giving out thank you cards to all of my cancer team for all of their hard work and compassion and for caring so much about my daughter and I .................
