I always have good intentions of updating this blog, but find myself concentrating on – and failing to copy the posts to this one. So – as it is now 30 years since my cancer began, for the moment at least, this will become a ‘Cancer Blog’.
In the meantime I’ll make every effort to update the artwork
Witchypoo
Being closely involved with the HIV support group, Thrivine, I am very much aware of the stigma still surrounding the virus and those carrying it. It was with this in mind that I searched Twitter for HIV and was pleasantly surprised that most of the comments (well, the ones in English at least) were helpful, supportive – or people commenting on their own status (unlike the stigma that many people with the virus receive in their day to day living). I then looked up ‘colostomy’ and was sickened with the multitude of nasty, vitriolic remarks.
Being able to laugh at oneself is a valuable lesson to have learned – and very necessary when having to undergo all sorts of otherwise humiliating examinations to your nether regions – and when a doctor doesn’t recognise your face – as this isn’t the part of your anatomy he’s familiar with!
Like all ostomates, I accept and can even laugh at some of the jokes – ‘shoes to match you bag’ and all that sort of light-hearted banter. My sons were teenagers when I had my surgery and I was quite happy for them to refer to me as the ‘bag lady’. When I went back to college I was quite bemused at how often the word colostomy was used in a flippant manner to poke fun at anything and everything, but it was harmless and my peers would have been mortified if they had realised one of their group had a colostomy. This, I suppose, is my point; would you knowingly insult or hurt people who have done you no harm? Well clearly, as my research has shown, some people would!
So back to Twitter and the colostomy tweets – nobody would wish to have an illness that necessitated such radical surgery. Generally speaking, it is ‘colostomy or die’ and when faced with such venomous remarks then some ostomates may wish they had chosen to die. As the diseases, accidents, disabilities or illnesses that lead to colostomies do not discriminate, I can’t help wondering how the foul-mouthed disparagers would cope if they were forced to make such a decision. It is coincidental that I notice how ignorant the majority of these people are, most of them not knowing there are major differences between a colostomy, ileostomy and urostomy. Nevertheless, none of them would like to undergo any of these life-changing surgical operations and the trauma attached. It also seems to escape them that young children and babies sometimes need this kind of radical surgery in order to survive. Contrary to popular belief, a stoma of any kind isn’t restricted to the older or demented person.
This is turning into a bit of a rant; perhaps that is on account of the pain I’m currently experiencing in my nether regions. I’m perched on one leg (as is my wont) trying to relieve the pressure on my bum, which many moons ago, was the recipient of 10 radium needles (‘needle’ is a bit of a misnomer, as they resembled very fat 2 in nails!). Needles that were sewn, with silk threads, into the area surrounding the back passage and remained in situ for nearly six days. Unsuccessfully curing my cancer, but successfully giving me severe burns to the entire region, exacerbated by the subsequent surgery excising the entire back passage. Then further damage caused by later radiation for secondary bone cancer, which additionally caused burn damage to my bladder, urethra and all the ‘woman’s bits’. Subsequent plastic surgery from a gynaecologist did not alleviate the problem and only caused further damage from scar tissue and basically a job badly done. (Mental note – don’t allow plastic surgery to be performed on you by someone who doesn’t specialise in that field).
Through the gaping hole that once was a perineum I can now see something bulging out (a very scary sight), no longer contained by the other bits that once held it in place. This constantly tugging away at my burn-damaged urethra leaves me in constant pain similar to that of cystitis. On a scale on 1 -10 the pain is never less than three and currently running around eight, just bearable to remain in, an albeit scrunched up, seated position. All this is in addition to problems that arise directly from the colostomy. Colonic irrigation suits me best and that gives way to another batch of bad taste jokes. But hey, I’m alive and if you research my numerous and various cancers, especially the secondaries in my bones, you will see that I am very lucky to be sitting here writing this blog. So I’ll just have to stop whinging and try to ignore the mindless prats who seem to derive their sadistic pleasure from other people’s afflictions.
In the midst of all the hard work of fitting the carpet and shifting furniture around, I got the very welcome and surprise news that I had won second prize in last months photo book competition. It really lifted my spirits. The book is a pictorial reference of my late partner’s exceptional work.
Bag Lady
Good news yesterday, my friend, Adrienne, is to ‘appear’ one again or Radio Lancashire. This time on a lunchtime chat show with Sally Naden the presenter and two other panellists. This is a big breakthrough, as she recently spoke about the virus on the Breakfast show and now this! For too long we had thought that the seriousness of the HIV/AIDS issue was being ignored, but now it seems someone is taking notice. With a 13% rise in known cases in our area (North West) this year it is about time. Notice I said ‘known cases’, this is because at least a third of people with the virus will not have been tested. A sobering thought.
Some people assume they are not in the ‘at risk’ group, as seven years ago, the same was assumed of Adrienne and when she was continually ill with one infection after another her GP just sent her away with antibiotics, creams for the sores on her skin and mouthwash for the ulcers. After nearly dying of pneumonia in Ibiza, she consulted a homoeopathic doctor, who at once recognised the symptoms and did an HIV test. To her horror, it was positive. As you can imagine, she was devastated – she had been in a long-term relationship with her partner, a ‘respectable’ businessman. When he had died quite suddenly of liver cancer a couple of years earlier, she never thought for one minute that it might be AIDS related. Of course, at that point she could recall all the other symptoms he had displayed – and even has photos of him covered in sores & bruises, like hers.
From that total devastation, she turned her life around – went back to university to do a degree, appeared and ‘came out’ on the Jeremy Vine Show, set up her own HIV support group, Hivine, has become Chair of the umbrella group, Thrivine and written her autobiography, soon to be published.
So – thought for the day – you may assume you aren’t at risk, but do you know your parter as well as you think you do? Where was he/she on that business weekend – what happened after you had a blazing row and broke up for a few days? You may think that we are talking about a gay illness, but not so – the virus has been advancing in the heterosexual community since 1999 and is now equal in both sexual orientations.
The implications of HIV/AIDS are monumental. The treatment is improving, but there is no cure. You will be stuck with the medication and all the side-effects forever and unless things change, you will also be stuck with the stigma and discrimination.
Every sexually active person and every needle user is at risk. Protect yourself. HIV does not discriminate. Do you?
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