Friday, January 03, 2014
Well, I went to the rheumatologist and was tested for lupus. It seems I probably haven't got it - hooray! Unfortunately, they think I've probably got Sjögren's syndrome - that's ok because it can't be treated. There is one side-effect though - sufferers from Sjögren's are four times more likely than the general population to suffer from leukaemia. Great!
At least it's only four times as likely. And it probably won't happen.
Damn the rheumatologist - I need never have known...
Posted by Lesley at 20:46
Tuesday, October 08, 2013
Wednesday, July 10, 2013
Sunday, May 19, 2013
Monday, April 15, 2013
Macmillan has launched a campaign that states, 'No one should face cancer alone'.
Too right! And yet one in four people do. I couldn't even get information about Macmillan when I was recovering. I got the impression - I'm sure very wrongly - that Macmillan only supports the 'big' cancers. I was told that there was no support for me from anywhere and that I'd have to find my own support. Does Macmillan know that some of us aren't even made aware that they might be able to support us? Could some of the 'one in four' statistics be related to that or doesn't that figure take into account those who are told to 'get on with it'?
Whatever the reality, there is a lack of support for those in whatever stage of camcer, from diagnosis to recovery. I'm still astonished that I was discharged from hospital unable even to lift a kettle without some follow-up care being available. Nobody wanted to take responsibility. Maybe my self-reliance as an only child, comfortable in my own company, helped me. I can't imagine what it would have been like for someone with a less independent spirit; there were - and even now are - times when I would have appreciated some support from someone outwith my circle of friends, someone who could take a dispassionate look at the circumstances Friends can only do so much and there are things that you don't want your friends to do for you or discuss with you; that additional support needs to be put in place. But should it really be up to a charity alone to provide it? It's a fantastic organisation, but they can't do everything.
Nobody, nobody, nobody should be alone with cancer - and we don't all have family or friends to be there for us.
Posted by Lesley at 17:05
Sunday, March 10, 2013
It's strange that even though I say I don't want to be defined by my cancer, it seems to have become part of me that lurks in the shadows and leaps out when I'm not expecting to hear from it. Although fully recovered, there's a corner of my mind where irritation lurks; I find myself feeling resentful at unexpected moments about the fact my cancer wasn't caught sooner, even though I did all the 'right' things to bring it to the attention of medical personnel. It really is time to move on, but it's not easy to let go when the world won't let you forget;
- almost every time I have a medical appointment, the doctor says, 'Hmmm, I think I'll refer you to x' because I have, say, a twinge in my big toe!
- when I try to get travel insurance, the insurer tells me that I have to pay an enormous premium against having a recurrence of endometrial cancer (yes, I know I can't get that one again, you know it, but for some reason the insurance industry doesn't understand the implications of their policy and they get very iffy when I tell them I'll take my chances about that happening again, given I've had the responsible organs removed).
- if I apply for a job, more often than not I'm asked if I consider myself disabled and the notes for the application point out that anyone who's had cancer is disabled. Dilemma! Do I say yes, I'm disabled (I don't think I am) or do I say no and run the risk, should I be appointed, of being dismissed for not having told the truth as they see it (it's not the truth as I see it)?
- it seems now that every time I turn on the TV or listen to the radio or read a newspaper or magazine, I'm assailed by a cancer charity of some description asking me for money
- and then there are the plastic bags shoved through the letterbox - despite the 'No cold callers, addressed mail only' notices on the door - asking for clothing donations, or unaddressed envelopes asking for cash donations..
I've said it before: I don't want to be defined by my cancer, I don't want to feel angry and resentful each time a charity collection request is made. I want to move on and live.
But how can I do that when the world won't let me forget or at least set aside that part of my life for a while?
Posted by Lesley at 10:14
Friday, January 25, 2013
I saw this news story this morning on the BBC News website: Wilko Johnson: terminal cancer has made me feel alive.
What he describes about the elation of feeling the wind on your face is exactly what I felt when I received my much less devastating diagnosis. I remember driving into the hills just to look at the view and to celebrate being able to do that.
A cancer diagnosis really does make you think about what's important in life; how much more so if you know that it's terminal. Well worth reading. The human spirit is amazing.
Posted by Lesley at 12:24