Ruck/Inanaco26 Jul 2019 21:31
Re your earlier post about ovarian cancer and the newly approved drug. It is being funded by the Cancer National Fund, never heard of them, and will be available to patients who have had three rounds of chemo already and can extend progression of the disease for up to three years. They estimate from 12k new cases a year, it will help 600 a year. Also available now to first diagnosid patients with a certain gene mutation.
It has just been on Sky News, again talking to a surviving patient, and it just always amazes me with cancer patients the dignity, gratitude they shown and however horrifying the disease can be from diagnosis we always hear how much the disease changes a persons life, by way of perspective of all matters in your life and often a feeling of the flip side of cancer is the biggest character building exercise you can experience.
It was in complete contrast to the earlier reports and interview a lady with Head and Neck Cancer, where the issue is how poorly we are advised about the condition and the trauma felt by patients learning as they go the consequences of their illness.
Yes both are conditions being trialled by Scancell and interesting as always to hear what treatments are on the market. I am very surprised by the comments regarding lack of pre care, we should not overlook the awesome work being done by Hospices, McMillens, C.R.U.K and various other organisatons which will only get better, there is just one area of care that I saw a weakness in, that was mental care. Treatments are harsh, physically exhausting and the fear expended from one appointment to another is hard to explain, but maybe better understood. Psychologically being told the treatment is going well, or given an all clear and then rediagnosed with even worse news leaves you numb. The psycholigical helter skelter is something many do not consider. I do think public awareness has room for vast improvent, unfortunately there are financial restrictions restricting human resources, The vast majority need that help through the orginasitations, for too many numerous reasons families and friends find it harder to cope than the patient, and they are not trained, and too emotional to be of real help. I was blessed to have considerable help from the Hospice, McMillens, my oncology team and nurses and as I have said so many times the support i was given, when i reached out for it, is something I will never forget.
I have to end with the truth that after six years I am really struggling to remember who I was, living with cancer is a constant drain and coupled with being housebound, it is nearly impossible to fend agoraphobia and anxiety as you feel very cut off from reality. .I need to break silence, Imagine my horror days after being the all clear to have received numerous posts fromone poster,accusing me of attention seeking and going off topic!!! I haven"t yet even began to deal with that. I needed to reach out and feel i wasn"t alone, is that so hard to get??
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