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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10 comments:
Short and to the point. I'm not at all surprised you want to scream; "Why me?"
I've added you to my Blog list Richard.
You might want to add a Feedjit gadget to see where readers are.
I found you via Chairman B's blog. I understand what you mean by the need to be noticed. I notice you and I am sure the blog will lead others to notice you too.
Thank you CB - I have added the Feedjit as you suggested and thank you Alan for your kind words.
Richard
I too arrived here through the Chairman.
I have heard a lot recently about cancer patients feeling let down once their treatment has stopped - is there no help as 'they' assume you are either dead or in remission and therefore so bloody pleased you couldn't possibly be depressed, weak, lost?
I must admit that when my father was dying of cancer the Macmillan team were absolutely fantastic both with looking after him and our shipwreck of a family sitting in the kitchen drinking endless cups of tea ... I don't know how we would have got through the last few months without them (yes I do, he would have had to go to hospital). See if you can see someone else - there was one nurse who my father hated for some reason and there was no problem replacing her.
Keep on fighting!
Hi again,
reading from top to bottom, wrong way around of course.
I've just read the other comments; isn't blogland a wonderful place full of kind people?
I too will be thinking of you and adding you to my bloglist to keep in touch with how you are (is that English?).
Be good ;-)
G Day Richard,
what can we say, other than all of us that know you through the Conway chat lines, PVB ( The chairman to some) and personally can only imagine the feeling of LOSS you suffer. My personal ups and down over the years had me go through a massive swing of personalities when the illnesses were here and then gone... of course your brusk and to the point comments dont always win you the favours that you desire but then hell, you wouldnt be true to yourself other wise and that would be the failing of all time.
I am sure i speak for many when I say your often in our thoughts, not but a cople of months ago after not hearing from you for a while the "nod " went out around the face book crew and I wrote to Gavin who told us you were still as obnoxious as ever and kicking.. so your not forgotton by us mate.. The brotherhood of the sea and all that old baloney !
"Quit ye like men, be strong "
Now that might put a fight back into you !
All of my friends ask about you before they ask about me.... and thats not just since you have been ill, YOU ARE NOTICED (or I have crap friends)
Sorry to be so damned un-English / un-Collinson but you are also very much loved.
Px
Linda (blog Virgin)from Lincolnshire
Interesting comments about the missing macmillan man, and most have expressed bewilderment at the bizarre beheaviour of "D" - the idiot! I thought Lovely and The lovely Poppy had it summed up beautifully.
Most importantly: this blogging stuff - is totally a first for me - is bringing your friends together and all are declaring massive love of Richard........... oh to be popular, stick that to the elusive "D" and KGB receptionists at the Doctor's surgery.
Linda from Lincoln
Wow, what a productive week! And all praise for the kindly and highly effectient dr "K"(with bonus friendly qualities, hurrah, Gavin xx). Although, Richard will NEVER be invisible being over-looked within the NHS system is all too easy. What a shame that one needs to be so pro-active to get support. Surely, when your cancer clock is ticking is EXACTLY when the Macmillan professionals should take on angel status and definitely leave the death scythe in the car!!
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