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Dave R.

HIV, Neuropathy and More: Avoiding Becoming a Nervous Wreck


The Loneliness of the Long-Distance HIVer
December 1, 2013

Sometimes the weather is so bad you're forced to stay in and watch people hurrying by, heads down, or shielded by umbrellas, as if they deliberately don't want to catch your eye. The rain spits relentlessly onto the windowpane and although you're warm and dry, you long to be wet to the skin and hurrying with them, as companions to wherever their destination may be. Those are the times when loneliness cuts you off from the world and exaggerates your belief that every man is an island after all.

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Anal Cancer: The Point of No Return
November 8, 2013

After almost six weeks of waiting and endless tests and appointments, John was finally admitted to the cancer hospital on 9th May, 2013. The following day he was operated on and his body changed forever. The anal tumour was successfully removed and his intestine and colon were re-routed to an opening on the front of his abdomen. There a colostomy bag could be fitted to take over waste removal functions. The anus was temporarily closed off and would play no further part in his daily bodily functions.

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Anal Cancer: How Much Can One Man Take?
November 4, 2013

On the 10th July, John sent me a mail:

"I had to sleep for a few hours; I was so tired. I'm going to have to have between 28 and 31 radiotherapy sessions and during the same period, chemotherapy in tablet form. The oncologist is hopeful of a complete remission because the cancer hasn't spread to the lymph glands. ... One thing is sure, it's not the same cancer as the last time and isn't a spreading of the bladder cancer. He thinks I should be done with the treatment at the end of September. ... This coming Friday at 10:00, an explanation meeting; 10:30 blood tests; 11:00 they'll draw the tattoos of where they're going to radiate me; 12:00 a CT-scan. Monday, 09:00 an infusion of chemotherapy; 11:00 radiotherapy. The party's about to really begin!"

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Anal Cancer: One Blow After Another
November 1, 2013

It had taken the best part of 2010 to finally ascertain what sort of cancer John had. There were reasons for that: they'd called it bladder cancer but in fact it turned out to be a cancer found somewhere between the bladder and the prostate. The communication ran along the lines of, "Hey, if we tell the patient he's got bladder cancer, he knows roughly which area of the body we're talking about"; a condescending approach to say the least. Its treatment had been an unnecessarily long process, with misdiagnoses, delays, cancelled or forgotten appointments and the careless attitude of an HIV specialist who brushed him off with platitudes, and after all that ... the treatment began!

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Anal Cancer: The Lead-Up
October 29, 2013

I know you're anal retentive and this is really shitty news but the bottom line is really a pain in the ass I'm afraid ... you have anal cancer but after the treatment all your problems will be behind you. (Collated from a cancer jokes site)

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Look At Us Dammit! We're Not One Color, We're a Flaming HIV Rainbow!
October 16, 2013

Sometimes I look at the gay lemmings springing joyfully off the social acceptance cliff, clutching their wedding bouquets in one hand and new spouses (hate that word!) in the other and I can't help but think ... well I'm speechless actually. Why are we doing it? Why do we want equal billing on everything from prime time TV shows, to Olympic podiums? Why do we feel the need to prove that we're as good as the straights in reality TV dog-eat-dog competitions and why do we desperately need the affection and respect of our neighbours when we set up our Martha Stewart shrines in suburbia?

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Your Sixth Sense: Can You Trust It?
September 23, 2013

"How do I know you're not an axe murderer planning to store my limbs in the freezer?"

"Do I look like an axe murderer?"

Well now there's the question.

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"Undetectable": Safe or Not?
August 28, 2013

Positive people, on effective treatment, with an undetectable viral load and healthy immune system, still don't know if they can or can't pass on the virus to their partners. New UK developments suggest that official conclusions may already have been reached.

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What If HIV Had Never Happened?
August 14, 2013

'What ifs ...' are a glass half empty, late night go-to for many a positive person, but of course each 'what if' is really only a salve for the soul; it doesn't provide answers. They're essentially self-pity mechanisms but end up only reminding you of wrong turnings and mistakes made. We've all been there though and many people will have asked themselves at least once. What if HIV never existed? How would my life look now? Irrespective of its relevance to your personal situation, it's an interesting conundrum and one which can certainly make you think.

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HIV: What's God Got to Do With It?
July 15, 2013

My mother always said: "Never, ever talk about politics, sex and religion with friends; it will only get you into trouble!" Well, I guess the sex boat has long-sailed and we can't talk about HIV without talking politics, so that just leaves religion. Dangerous waters maybe and some people may never read anything I write again after reading this but I've grown to believe that sex and politics are at the heart of religious attitudes when it comes to HIV and LGBT people and always have been, so how can we avoid discussing it?

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See Also
Neurological Complications of AIDS Fact Sheet
More on Neuropathy
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HIV, Neuropathy and More: Avoiding Becoming a Nervous Wreck


Dave R.

Dave R.

English but living since 1986 in Amsterdam, the Netherlands. HIV+ since 2004 and a neuropathy patient since 2007. I've seen quite a bit, done quite a bit and bought quite a few t-shirts if you know what I mean; but all that baggage makes me what I am today: a better person I believe, despite it all.

Arriving on TheBody.com, originally, was the end result of getting neuropathy as a side effect of the medication, or the virus, or both. I found it such a vague disease and discovered very little information that wasn't commercially tinged, or scientifically impenetrable, so I decided to create a daily Blog and a website where practical information, hints, tips and experiences for patients could be gathered together in one place.

However, I was also given the chance to write about other aspects of living with HIV and have now contributed more articles about those than about neuropathy. That said, neuropathy remains my 'core subject' although one which unfortunately dominates both my life and that of many other HIV-positive people.

I'm not a doctor or qualified medical expert, just someone with neuropathy and HIV who has spent the last few years researching the illness and trying to create information sources for people who want to know more.

I also have my own personal website and write for PositiveLite.com.


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