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I have between three and five years to live.

Before you start sending flowers, gin and chocolate or planning elaborate celebrations culminating in the burning of some form of effigy I should explain that this is not actually true.

What I am describing is an alternative reality without the medications which, over the last five years, have become a regular and reliable part of my life.

Generally speaking I don’t give my meds much consideration, I take two in the morning and one at night, they get delivered regularly and I take it for granted that they will do the job.

Recently though things are starting to change and I have to be honest, I’m scared.

My experiences with medication have not always been glittering success stories, my first treatment regime back in 2009 was a mix of Tenofovir and Efavirenz before moving to ATRIPLA, a one-a-day combination of Tenofovir, Efavirenze and Emitricitabine which nearly killed me, though I must admit this was largely down to my own stubbornness as much as anything else.

The combination I started on was harsh, as soon as the tablets went in I felt as though I necked the best part of a bottle of gin.

Within half an hour of taking the tablets I was throwing up everything but my self respect.

This lasted for about eight weeks, after which I was able to keep the tablets down, but still needed to go straight to bed after taking them, lest I fall over.

I had known that in some people Efavirenz could kick off a major depressive episode and having a history of depression I was understandably nervous.

It started slowly and at first, the creeping shadow was indistinguishable from the general feeling of morose that came with knowing that as soon as the tablets went in they’d been coming back up in a beautiful display of digestive pyrotechnics.

From there though it built up and up, combining with my already fractured mental health around being positive and needing treatment in the first place.

After about six months I started on the ATRIPLA, and the monster continued to grow in my mind, I started to think about ending it all.  Somewhere deep inside I knew I was not well, but one tablet once a day was all I wanted. One tablet, once a day made it seem more… “normal”.

Whenever I would go to the clinic for my check up, the staff would ask how I was feeling, and because I didn’t have the first clue about how to explain that I had wanted to steer my car in front of a lorry while driving there to stop it all from hurting, I would say that I was ‘fine’.

In reality I lost four stone, my mind, and my will to live in the space of about six months. I was only rescued when my ex-husband marched me to the clinic and explained to the medical team that I was not in fact ‘fine’ at all.

Whatever else passed between us I will always be grateful to him for that.

I was changed onto a mix of Truvada and Raltegravir and have been successfully undetectable ever since, though it is not without costs.

Truvada’s selling point is that, whereas other meds leave the body through the liver, it is filtered out through the kidneys. Though in some people with long-term use kidney function can start to decline over time. I am some people.

At a recent check-up my kidneys were shown as operating at roughly 60% of what they used to, as such there has been talk of changing my meds.

The initial idea was to try me on Abacavir, though I needed to get checked first for hypersensitivity. – In a similar way to recent research showing that women with a certain genetic code are more likely to get breast cancer, people with another genetic code, if given Abacavir, are more likely to have a massive anaphylactic shock and die.

I’ll leave you to guess what my check showed.

The alternative options were protease inhibitors, a group of meds whose side effects were described by the nurse specialist as ‘nasty’.

So I must admit, recently I have been considering stopping treatment.

My Nan, towards the end of her life, was given the option of chemotherapy to try and slow down the growth of the tumours in her lung, it was thought it might buy a bit more time. She decided to give it a go but suffered. She developed blisters down the oesophageal tract, lost hair and felt altogether much worse before deciding she had been better without the chemotherapy than with it.

She died a few months later having decided against further chemo and was more comfortable at the end.

I do not fear the end. All things die, even mountains in their time are worn away by wind and water and years ago I developed what has become known as ‘The Edinburgh Plan’.

If ever the prognosis were to take a significant turn for the worse I would stop treatment completely, sell my possessions, quit my job and move in to a backpackers hostel in Edinburgh, a place I visited years ago and where I felt happiest and most free.

I would live off my savings, walk the Salisbury crags and volunteer in a shop somewhere. I would live quietly, peacefully, and slowly drift away.

After long discussions with the nurses it was decided to stay as we are for as long as possible, – to stay on my current treatment in the hope that, in a year or so, some new drugs might have come on the market. We are effectively playing ‘chicken’ with my kidneys and the HIV drugs industry, waiting to see who blinks first.

I’m not sure if I would ever make the choice to stop taking the meds, I like to think that I would keep going for as long as I’m able and until something else takes me, but perhaps something like HIV makes us more aware of our mortality and more likely to live each day, because you never know when life will just… stop.

Steve (@SteveoftheMarch on twitter)

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2 COMMENTS

  1. I was started on tenofovir and efavienz in 2010 and moved to atripla in 2012 and though I recognise some of your side effects, thankfully, my experience has not been so dramatic. However, in May 2014 I was diagnosed with colorectal cancer and accepted the treatment of 35 painful radiotherapy sessions and 2 blocks of 24 hours a day for 5 day’s of chemotherapy, followed by three weeks in hospital undergoing palliative care for pain management due to the exceptional pain.
    Now, it appears my cancer is likely to have spread into my pancreas after a tumour was found following a gastroscopy to investigate a suspicious CT scan image and I am awaiting MRI scans to determine the spread, if any.
    Like you, I now feel that if those results necessitate more invasive treatments, I will opt to stop and accept only pain relief until I can slip away, free of pain.
    But who knows how we will feel and react when faced with the ultimate reality.
    I wish you well in your continued treatments and hope both you and I do not have to make the ultimate, most difficult of decisions.

  2. One treatment option that may be back on the cards its Truvada. Tenofovir 2.0 is going through the approvals process now, and because of the new delivery mechanism the recommended dose is one tenth of the old formulation. I find that the old Truvada with a PI (Atazanavir boosted with Ritonavir) is quite tolerable, so the newer formulation may improve things

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