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Saturday 2 November 2013

Making butter in my head..

So I had a phone call from the lovely Diane yesterday afternoon.  She is the secretary to the third Consultant who is now being involved in this major operation on my shoulder.  It seems like he has agreed to have a go.  So I now have a team - a breast surgeon, a plastic surgeon and a cardiothoracic surgeon.

Who but the NHS could assemble a team of such experts in three different but related areas in such a short time to do such a major operation on a dying patient for "Quality of Life" purposes?

The operation will take place on a Wednesday, sometime in the next three weeks and I am due to go down to Basildon on Tuesday night for "investigation".  Personally, I want it done as soon as possible to relieve the pain and save the arm.  We shall see.

Having lost the sensation to the balls of my feet and having them feeling as if I have been walking on tip toes in snow all the time, I laid down the law to Dr W - I wasn't prepared to lose my right arm as well.  She responded amazingly, along with the Breast Care Team of surgeons and, between them, they must have called in every favour possible to get me this treatment so quickly.

But I do have to face the prospect that it might not work.  It is a long and complicated operation.  It involves a lot of different specialities and am I being selfish, when I am dying anyway, to tie up all these resources, so I can keep typing?  Should I settle for the less traumatic (physically) and shorter amputation option?

So this is why I am awake at 4.20 am, churning stuff round in my head, wondering what would impact less on the family, on me physically, on me me me me me.

And I am trying to be less cross about some well-meaning but totally misguided friends, whose offer of a "second opinion" at the Marsden, with a doctor they like and trust, I have politely turned down more than once.  They are now trying to get family and friends involved in their "campaign" to drag me up to London to see someone whom I have been in contact with via email but who cannot help me.  I am an outlier.  I don't respond to conventional treatment.  I have weird drug reactions.  I am "out of the box" on treatment protocols.  I don't have the same type of breast cancer as this particular friend.  I am not well enough to go to London for something I really want to go for, let alone a medical consultation.

How do I stop them pestering and upsetting me, my family and my closest friends? Whilst I get that they want to "do something", this seems to me more like trying to make me do what they want, rather than realising that this would not be in my best interests just now?  Apparently, a ranty "fuck off and mind your own business" email is not what the family would like me to do - must cut down on the steroids....

In the meantime, I shall retire back to bed with tea and the delicious M&S biccies that G's friends bought me yesterday.  I have been listening to a rather heartening programme on the World Service about refugees, who make it across from Africa, settling in Italy.  The kindness, humanity and sheer friendliness of the mayor of a small town made me smile and gave me hope for the future of mankind.

And made me feel guilty for thinking about me....

1 comment:

  1. Tremendous post, Charlotte. We know so little about life and death because people don't share their experiences. You are so honest about the complicated choices and decisions that one must make. As I also have complicated breast cancer, I see my future in your posts and I appreciate being able to think about these things through your experience. Ultimately, we are all terminal. Some of us seem to get sick prematurely, but ultimately there is no proper time. It is what it is, and I wish you easy decisions and reduced pain and discomfort. I'm so happy that you are surrounded by people who love you! Good luck with your surgery.