Monday, 6 June 2011

Positive vibes welcome. Please

Tomorrow, Tuesday,7th June,I find out whether I have Endometrial cancer.

I tell you this because earlier this week, I watched a documentary about Joseph Merrick, better known as Elephant Man, and how he lived for his short twenty seven years with the terrible affliction of Proteus Syndrome. Speculation still surrounds his death and whether it was accidental or deliberate on his part. And as I listened to the programme it struck me how his infirmity must have affected him, living with it day in, day out, and I found myself empathising, understanding if he did stage his own death why he might have done so.

Don’t get me wrong, I’ve never encountered anything like the physical difficulties or prejudices Merrick had – in fact, the outsider would never know from first glance anything was wrong with me. But living with Behcets,an auto-immune disease means there’s always some new health hurdle to contend with and I can totally understand how someone who lives with terminal illness, or chronic pain or illness might decide they’ve had enough.

Pain has been my lodger, my cross to bear (or ignore) for the last twenty five years. There's always something. Usually it's arthritis but I also experience colitis, ulcers (mouth and vaginal,) or some other aspect or by-product of the treatment for my condition. I've had septicaemia, avascular necrosis, miscarriages. The latest development is some sort of vascular problem with my hands, feet and head which I'm seeing my Rheumatologist about in a couple of weeks. Six months ago, I thought I’d tackled the biggest obstacle with the jaw replacements and hoped there might be a little respite for a couple of years. However, it seems Mother Nature has other ideas.

I’d ignored ‘women’s problems’ (constant, heavy bleeding and niggling stomach cramps) for months and put it down to the stress of the surgery, perhaps my system lashing out, or maybe being forty four years old I was simply a menopausal old bag! Eventually, I relented to hubby's badgering and went to see the GP. As a result, for the past few weeks I've had all sorts of investigations which have found an enlarged uterus, abnormal blood and smear tests, and in between, you may recall we had to cancel a trip to New York in March because two days before we were due to travel, I ended up in A & E with crippling stomach pains. As I lay in that A & E bed, I turned to my hubby and meant it when I said, ‘If it is cancer, I don’t want to have treatment. I’m weary. I’ve had enough.’

To be fair the hospital has moved quickly and after more delving, a couple of weeks ago I had a biopsy to test for Endometrial cancer, the most likely cause for my symptoms. In my heart, I don’t think it will be and even if it is the ‘C’ word, the prognosis is good if I have a full hysterectomy and chemo/and/or radiotherapy. But do you see what I mean? I thought I’d come through one big, bad lot of surgery; of life being on hold, cancelling holidays and experiencing pain so bad, I literally used to writhe in agony on the sofa. If it's not cancer, months of treatments may lay ahead and if none of them work there could be the same end result - a hysterectomy. And what really peeves me is whatever the outcome, as sure as night follows day, something else will come along. It's the nature of the beast that is 'auto-immune disease.'

Hubby and my boys have years ahead to enjoy their lives. Do they really want to carry this sickly, relentless burden around for the next thirty, maybe forty years? And am I not entitled to decide when I've had enough?

NO. As one of my best friends pointed out, I’m a mother and with that role, there is obligation and responsibility to my children. There isn't just me to think about. I have to carry on doing what I do best - fight - whether this is cancer or just another manifestation of the Behcets.

I’m in a perfectly lucid and rational mood - I promise - so please don’t think this is me being depressed or feeling sorry for myself. I don’t want tea and sympathy, although some positive vibes for Tuesday might help ;)

I suspect only those who live with chronic pain or illness will truly understand what I’m alluding to in the above. Perhaps if you read this and it means something you might leave a comment so that those close to me don't think I've gone completely bonkers, and that I know I'm not the only person who wishes in today's modern world we had the right to choose when and how we might turn the lights out.

We all deserve to be able to say, 'Enough is enough,' don't we?

Until another day

Bye for now