In May 2006 I came home on 6 weeks leave – I was a Ship’s Captain – but I had a bit of a stomach ache and this was diagnosed as cancer of the colon. I had the usual surgery to remove part of the large intestine, but a scan just before the operation showed the cancer had spread to my liver. The surgery was a success and I went onto palliative chemotherapy – 4 different chemotherapies one after the other as each one stopped working – by this time the cancer had also spread to my lungs.
Throughout I was being told that I probably had about 6 months but I had wonderful support from nurses and oncologists and I felt that I knew what was happening, there was always a bustle of people asking me how I was and taking bloods and other tests. Then in May last year – 2009 - it all stopped – I had run out of chemotherapies and I was returned to my GP for best possible palliative care – now the medical support changed - it was very much call me when you’re ill and to see my GP means making an appointment 2 to 3 weeks in advance.
I do have support from my family and friends but all this has been going on for a long time and in many ways I feel it is me supporting them rather than being supported by them. I get very tired and I cough a lot but generally I am in good health.
I have been introduced to the local Macmillan palliative support team but there is only two of them and one of them won’t talk to me. The other one I have met once and spoken to once on the phone and that is the sum total of out interaction.
I feel very let down – as if on the completion of the chemotherapies in May 2009 I was just dropped through a hole and became invisible. And so today I rang the Macmillan help line and talked for an hour – towards the end the nurse asked me what would help and I didn’t really know but I have thought about it and I know now what would help.
I have terminal cancer and I want someone to notice me!
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