An injection for my pills

My will for the pills

When I think about it, I have what I might call a health-year, the biannual visits to see the consultant in charge of my HIV management which has been under control with antiretroviral drugs (ARVs) for just over 12 years with two changes of medication that I handle very well.

Until I fell seriously ill in 2009, one of my concerns about what to do was around the pill burden, too many experiences and stories had given me the idea that ARVs were difficult to store, you took many pills several times a day and the side effects could be unbearable.

I guess by the time I left the hospital with a medication trailer of pills to be taken 8-times, 6-times, 4-times, thrice, twice, and once daily, along with the chemotherapy every three weeks, I knew my life was totally changed and would change radically if I were to keep alive by adhering to that pill regime.

Adapting fine to routine

With time, I was left with ARVs of just 3-pills to be taken once a day, and an antiviral prophylactic drug to be taken twice daily. On later chemotherapy sessions, I needed an anti-emetic to help keep the food in. One large pill taken an hour before the session and the two smaller pills for one each of the next two days.

The ARVs affected the bowel movements that I was put on a single-pill medication that I have been on since May 2010 apart from the change in late 2018 that lasted 6 weeks that did not work for me, I returned to the medication I was having rather than try something new. My pills are a nightly elevenses, they work for me, I have had an undetectable viral load for over 12 years and my CD4 count has been increasing appreciably. Those are the markers for the state of my health.

Good, but not ready

Last week, it was announced that the taking of daily ARVs can be replaced with injections taken every two months, or 6-times a year. Two injections, apparently to help many who have problems with the daily pill taking and the disruption to their lives. I do appreciate the usefulness and need for this, though I seem to have adapted when to the daily pills, I do not think I am mentally predisposed to this possible change to bi-monthly injections. [BBC News: First long-acting injection for HIV approved]

I get my prescription every 6 months for a 6-month run, and my day is planned around ensuring I take my pills as required, my weekly pill box laid out every Sunday and kept track of as diligently as possible, I might just be averse to change after having perfected this routine. Altogether, I doubt I have missed my medication up to a dozen times since the 30^th of September 2009.

Now, I might well consider an HIV vaccine if that becomes available as a yearly jab taken like a flu jab that would have the efficacy of keeping the viral load undetectable and the virus completely at bay. Until then, whilst I do not have the numbers, I am happy with my pills.

Chemotherapy was taking death to gain life

There is a delay

Five days before, I was put on ARVs and today, the Monday, 12 years ago, I was preparing for my first session of chemotherapy which was to be administered in the morning. The hours of the morning past and no one had come to collect me, I was waiting for chemo.

It was three hours later that I was wheeled in my bed to the oncology ward, the drug was attached to the cannula and the war against cancer wherever it might be in my body had begun. One hour, it took for the bag of reddish fluid ensconced in aluminium foil to drain into my veins.

Death and life in Caelyx

In my condition, I did not have an immune system to fight infection, that had been crippled by HIV, then chemotherapy was literally going to trash it completely. Even if the option presented itself, I did not have the presence of mind to reserve my sperm as this episode was going to make me infertile. I guess when your life is under immediate threat, you can’t be thinking of procreation.

Then, I was told this particular drug, liposomal doxorubicin (Caelyx) does not have the side effect of the loss of hair, not that I had any to lose. The aftermath of the chemotherapy was I felt bloated, it was considerable discomfort and It did not feel like it was gaseous or maybe I was too constipated for it to pass through my system.

An untouchable, I became

I returned to the ward to find out that they have put up a cordoned, not hermetically sealed, but it was indicative of me presenting a chemical hazard to anyone who approached me. Cytotoxicity being the issue, the chemotherapy whilst it killed cancer cells, also killed living cells and so it was dangerous for anyone to come in contact with any of my bodily fluids for the next 5 days.

Blog - A life of cytostatic ostracism

Through the 7 sessions of chemotherapy that I had every third Monday with a blood test the Friday before to determine how I was tolerating the treatment, after that, it was the complete absence of strength in the second to the fourth day and the emesis that got the better of me. It got to a point, I just could not keep my food down. They had something for that too.

After cancer to the future

Now, these have become stories, memories to recall and a sense of gratitude for having come through such an ordeal. Then I say, the medical cure of cancer sending it into remission is probably just part of the story, going back to life after cancer presents what I called the long tail of cancer. I lost everything, everything except hope, that was the only building block I had left to start life over again.

Blogs - The Cancer Tales (2009)

12 Years on ARVs

A plan coming together

I had been on admission in hospital for 8 nights already, by which time, they have tried different approaches in medication and analysis, the knowledge the medical personnel had acquired from biopsies and leeching blood from my system was now coming together into a strategy and the professor was going to deliver a message about my diagnosis and the prognosis.

Until then, the medication I was on brought down the fevers, eased the pain, reduced the emesis, stop blood clots from forming, and halted the infection rate. The elephant in the room was the Kaposi sarcoma lesions that were prodded 5 days before, the dermatologist asked for a deep biopsy and after 9 injections of Lidocaine in my foot, I could still feel the pain, the results of their tests were taking time.

Preparing me for the future

The mammoth in town because it would have been too big for the room was what HIV was doing to my body and how it presented as AIDS, the screaming, “I’m here” through the megaphone of the lesions, that was the focus of the medical brains that attended my bed that morning 12 years ago.

I was given a sheaf of papers, basically the full medical notes for the new medication they were putting me on, they were going to address the root cause of my physical malady, the treatment of HIV with antiretroviral drugs (ARVs), the kind of medication I had shied away from taking for years just because of too many reasons to mention. This was going to be the beginning of a lifesaving odyssey and the medics had no doubts in their minds that they were on the right track.

The drugs do work

I was put on the combination therapies of two tablets of Kaletra and one of Truvada daily, and there began a hope of life beyond my situation at that time, the beginning of living with HIV rather than dying of it through complications brought on by the virus. I was on this ARV drug regimen until the last week of May 2000 when I was switched to Atripla, because I was always having bouts of diarrhoea.

However, in a matter of weeks from 30/09/2009, my HIV viral load that was sky-high at hospital admission had reduced to undetectable, the drugs do work.

Blogs - The Cancer Tales (2009)

Normalising HIV Challenge against stigma

A challenge worth entering

One thing I have learnt about Social Media as I am just an amateur is that you never know what you post that might catch fire and go viral.

Just over two days ago, I joined the Normalising HIV Challenge with the hashtag #NormalizingHIVChallenge, the American spelling notwithstanding. What it involved was a short profile of oneself, one’s HIV status and what one is doing about it. Then, you can add a tagline.

This was all in aid of banishing HIV stigma, for there are many who are HIV-positive and living normal productive happy lives, going about regular and exciting activities the pills helping a long way.

#NormalizingHIVChallenge

Name: Akin
Age: 54
Home: England
Occupation: IT Consultant
Relationship status: Engaged
HIV status: Positive 2002, AIDS 2009
ARVs: Yes (Since September 2009) and undetectable

I'm not dirty and clean is when you've had a shower.

— Akin Akíntáyọ̀ 🏳️‍🌈 #European (@forakin) September 28, 2020

I posted my tweet with the tagline, “I'm not dirty and clean is when you've had a shower.” This comes from what I have seen on certain profiles or in conversation where you are asked if you are clean. By implication, anyone who is HIV-positive is not clean or consequently dirty.

Courtesy of The Stigma Project

Blog - Dealing with sexuality and HIV stigma

Blog - Experience is not enough to teach you to understand things

Clean after a shower

This is after well-published and peer-reviewed studies that show HIV-positive people on antiretroviral drugs and by consequence with undetectable viral loads cannot pass the virus on to sexual partners. We can live healthy and passionate sex lives under the right medical supervision.

It does not mean we should be reckless with our sexual health, regular check-ups are necessary and it is unlikely that anyone who is HIV-positive is not completely clued in about this. Yet, ignorance persists in communities that should know better and the wider public who are usually deluded into thinking they are safe without any awareness of their real status.

Owning my experience

Literally, all the responses to my tweet have been supportive apart from one where the person in his cynicism thought I was being paid to demonstrate a false status in my search for clout and to trend. It was a shame that after he apologised, he deleted his tweets and then blocked me, out of embarrassment or shame or the inability to face up to his calumny, I would not know.

However, this much I know, a long time ago, I decided to own my situation, understand my condition and share my experience, if, in any little way, it might help others.

I know there are aspects of life I went through that others might well relate to and seek prompt medical attention rather than delay it. As I alluded to in the blog below.

Blog - When I had the murderous cancer of denial

Even this is normal

For the commendations of bravery or daring, I am thinking of neither, rather it is a simple case of acceptance, I am already a miracle of medical prowess that has come of the body of knowledge acquired through the medical interventions in other lives affected by HIV and related medical conditions. Forthrightly, I have to live with what I have, if I can't, what is the point of living and where is the joy of living?

We will continue to challenge HIV stigma, not so much to normalise being HIV-positive, but to aver that regardless of your HIV status it should not define you and you can live normal and amazingly productive lives. That is the goal of #NormalizingHIVChallenge from my perspective.