Thought Picnic: Comparing my encounters with cancer

Comparing cancer treatments

Fifteen years ago, I was on the receiving end of a cancer diagnosis, and it was the first day of treatment with chemotherapy. Everything was predicated on my ability to tolerate the gruelling onslaught on my body that was eventually delivered every third week on a Monday for seven sessions.

By comparison, between chemotherapy then and radiotherapy today, the latter seems more tolerable though, just as exacting on your body. Chemotherapy was then necessary because, besides the obvious cancer lesions on one sole and the emanating tumours on the other sole, there was a likelihood that cancer could be in different parts of the body.

Rather than try to determine all the localisations of the cancer, chemotherapy with its cytotoxic ability to kill cancer and some healthy cells in the body seemed the best option against radiotherapy. In the case of prostate cancer, this was still contained and localised with the prostate gland and my options were between prostatectomy or radical radiotherapy, and I opted for the latter.

Effects on the body

In terms of side effects, chemotherapy knocked me out by the beginning of the third day, there was no strength to do anything and that was also exacerbated by the inability to keep food down so I had to be given anti-emetic medication. Within the first five days after chemotherapy, I also had to be careful that no one had any contact with my bodily fluids as it was toxic to healthy people.

I was not prepared for the shock of being cordoned off in my section of the hospital ward and any nurses who needed to draw blood had to take full hazardous materials (HAZMAT) precautions when approaching me. That little piece of detail was not communicated in our pre-treatment briefing.

While I believed I would survive Kaposi’s sarcoma, I do not think I was thinking of fifteen years ahead to reencounter cancer in my prostate gland. During the preview of options for treatment, I did ask if chemotherapy could be a treatment option for the prostate and the view was except in the case of metastasis, it was not a viable option.

Experience or newness

I guess my thinking was having tolerated chemotherapy well before, a second experience would not be as bad. However, it would have left me less able to do the usual things with the need for constant care and monitoring as I had back then in the Netherlands.

I write this not to celebrate cancer but out of gratitude and thankfulness that I have been fortunate to survive cancer and tell stories of the triumph of humanity over adverse events through medical intervention and so much more, the mercy and grace of God.

References

Blog - Waiting for chemo

Blog - A life of cytostatic ostracism

Blog - A primer on cancer and chemotherapy

World AIDS Day 2022

Beyond a fateful diagnosis

This is my 20^th World AIDS Day since my HIV positive diagnosis and I cannot tell for how long I might have contracted the virus before it was confirmed after a very developed and stringent testing regime, what matters is with a medical verification of my status, certain things needed to change.

I guess what changed the most in my life was my outlook between the idea that I might not have much time left to doing everything possible to enjoy whatever time I am fortunate to have to tell a better story beyond diagnosis.

Yet, living with HIV brought both adventure and the mundane, the mundane as in as the virus ravaged my body, I ignored what the consequences might be as year after year others noticed my apparently failing health.

The onset of AIDS

It was in the 7^th year of my diagnosis that things took a turn for the worse, early in year, much as I was in my professional peak, a dark brownish stain appeared under my left sole, something I dismissed as athlete’s foot and on inspection by a doctor in Spain, never came to much of a comment. Yet, I was conscious enough to want to hide expanding dark mark when I was reclining in a deck chair by the pool, because someone did come to ask about it.

By Spring, my energy levels were down, I spent Easter in Geneva with my best friend after which I was back on the job market. Then by mid-Summer I had a bout of shingles that came and went in 2 weeks with the blessing of no post-hepatic neuralgia, though my foot was now becoming a problem.

What was manifesting in August was a painful sore that I could not walk without my foot being heavily bandaged and no amount of painkillers could assuage the pain, I tested the limits of my ability to endure pain. I had developed full-blown AIDS presenting as Kaposi’s sarcoma, a virulent skin cancer and it was screaming on my left foot.

The legacy of the early sufferers

My gratitude and good fortune for the sadness and the celebration of World AIDS Day comes from the fact that many young men perished because of AIDS and the lack of help to treat the diseases that came as a result of contracting the Human Immunodeficiency Virus (HIV), many also had the painful lesions of Kaposi’s sarcoma leading to fully emaciated and painful deaths.

When I went into hospital delirious in pain after my doctor in the Netherlands instituted emergency measures to get me seen by specialists because on the first sight of my foot, she said, “This looks serious, I need to refer you.” The professor who came down to see me immediately said, “We have a bed for you upstairs.”

I was at the point where advancements in HIV medicine gave the consultant the confidence that medicine did not have a decade before, because he said, “We can treat this, but it depends on how you can take the treatment.” The prognosis was I would be fine if I could tolerate the treatment, or I will be gone in 5 weeks if I could not.

Indeed, my survival comes down to the many whose treatments that variously failed but redounded to the body of knowledge and expertise that grew over decades, I am one of the fortunate ones who came back from the looking death in the face to live and thrive. It always gives me pleasure to interact with medical students when they attend my biannual consultations, because I hope that in some small way, I inspire them about the power and miracle of progressive medicine that can treat diseases that were once untreatable.

On celebrating World AIDS Day

This is what World AIDS Day means to me, the need to know your status and embrace the result with promptly accessing medical options available. In 2002, you were not immediately put on antiretrovirals, even in 2005, they were thinking of treating a Vitamin B deficiency rather than the virus.

World AIDS Day is about everyone affected and infected, privately or publicly, silently or in advocacy, proudly or stigmatised, we need to come out and bring an end to the scourge of HIV whilst making the very efficacious treatments freely available to everyone touched by HIV. I am also grateful to the health services in The Netherlands and the UK, the consultants, doctors, nurses and personnel who have devoted time and resources to seeing the end of HIV.

And where would I be without the support of friends, family, neighbours, lovers, and the wider community that blessed me with their humanity and generosity, to them all, I owe a debt of unstinting gratitude. I am blessed.

Here’s to World AIDS Day 2022 because there is still much to be done and I hope that when the work is complete, it would be celebrated in memory of the many who sacrificed life and being to bring an end to HIV and AIDS.

Reflecting on 20 years after an HIV-positive diagnosis

 “In a perfect world, the positive would be open and the negative would be open-minded.” From a Grindr profile.

Preamble

Do not be afraid to take the test

Face up to the new reality

Avail yourself of all the help available

Do not be afraid to ask questions and seek clarification

If the medicine is not working for you, say so

It is always your body first before it is their guinea pig

It is your life, do not be ashamed of living it

Do not only survive but strive to thrive

Tell a story, your own amazing story

The day I knew

I write this today, not as a celebration, yet I am living witness to and a beneficiary of such amazing human ingenuity. Without certain advances in medicine and pharmacology, there would be nothing to celebrate.

Twenty years ago, on a cold Friday morning, I visited my local Genito-Urinary Medicine (GUM) clinic in Amsterdam, to receive confirmation that the blood test I had taken almost two weeks before had indeed tested positive for the Human Immunodeficiency Virus (HIV) and with that, alone to bear the news of my new circumstances, the 20^th of September 2002 became a date to remember.

The booklet I was given after my HIV diagnosis on 20/09/2002.

I cannot say for how long I had been infected with HIV, I had gone for a regular check-up since I was in an at-risk category and for the first time, I decided to take the HIV test, then resolved to receive and accept the result. For at other times including in the UK when I had gone for other sexual health screenings, I had either declined an HIV test or asked not to be informed of the result either way.

Medicine leads the situation

The said date comes with a medical result rather than an assumption or some premonition of my status, the science and the medicine with the essential expertise must always lead the determination and the management of any infection or disease.

Whatever the symptoms might be, until medical intervention has had its input, you do not have a diagnosis, it worries me that even as recent as 6 months ago, someone approached me to ask if his symptoms were indicative of being HIV positive just because I was also HIV positive. 

I am not a doctor, there is no way I could confirm or give any reassurances, he had to go for the test and be ready to attend to the reality of the result and the further consequences of having that possibly life-changing information.

Those that went before

How I became HIV positive is beside the point, I subscribe to the AIDS Memorial Instagram page and picture after picture speaks of the lives of people touched and lost to HIV/AIDS, amazing, talented, beautiful, extraordinary people cut down in their youth, mostly at a time when there was nothing medicine could do for them.

We celebrate them with purpose and fondness, for What Is Remembered Lives, they were people like me and literally in the same age group, I met many who passed on in the 1990s. Their experiences and lessons learnt contributed to the body of knowledge that has defined what HIV medicine has become.

Then I consider the reasons why I allowed HIV to ravage my body for 7 years before I did anything about it.

Fear

Initially, I was afraid of the truth, for if I had taken the test earlier and the result was positive, what benefits and advantages in society would I lose and how would that knowledge impact many aspects of my life? That fear is real, and it comes from an understanding of how society easily ostracises things they do not understand. Strangely, I was not afraid of dying.

Blog - In Telling: Beware of pill rumours (2022)

Stigma

When I learnt that I was HIV positive, I had to be careful with who I shared the news. The first person I told was my pastor when I returned home. When I told a friend which whom I had sexual relations going back a few years, what I got was constant abuse and vituperation, it was vicious and unrelenting, I could not tell if it was he could no longer meet me as he used to because he never once did reveal to me if he had contracted HIV along with the likelihood that I might have contracted it from him. We move.

Knowledge of what HIV was then and even now is still poor, and this is also in the LGBTQ+ community, there are many advances in medicine and drug formulary that manages this virus, but you still hear or see people use clean and by inference, you are dirty if you are HIV positive.

Worse still were people ready to use that knowledge to blackmail or threaten with exposure and harass with the law, and I have seen my share of that.

Blog - Dealing with sexuality and HIV stigma (2017)

Blog - Experience is not enough to teach you to understand things (2020)

Blog - Normalising HIV Challenge against stigma (2020)

Denial

I suppose this was my greatest undoing for when I learnt that I was HIV+, I did nothing about it, the booklet I was given along with phone numbers of doctors to contact went onto my bookshelf as I quietly contemplated what my future might be.

When people told their stories of what drugs they used and the attendant side effects, the thought that I would need to regiment my life to such strictures, privations, and suffering, did not appeal to me, I desired a more leisurely life and sought the community of similarly affected people who did not discuss it, but indulged themselves.

Blog - When I had the murderous cancer of denial (2020)

Reckoning

At the time of my diagnosis, you were not immediately put on any therapeutic treatment, certain indicators had to be met to qualify, however, by 2008, my health had begun to deteriorate so much that I seemed to ignore or just not notice what was happening. These changes were observed by those who saw me from time to time, usually from one holiday to another.

On my left sole, a patch appeared that looked like Athlete’s Foot and I treated it as such, but all fungal treatments did not alleviate the problem, it became sore and painful that I walked about with a tightly bandaged foot, still full of fear of what it might be and in denial of what it really was.

I tried everything but the medical route to address the matter to no avail, as the pain became unbearable, I made an emergency call to my doctor, as I could no longer wait for a regular appointment.

At the first sight of my foot, she immediately said, “This is serious, I need to refer you.” She dressed the fungating tumours as she made the appointment to see a specialist, the result of which was a hospital admission 6 days later with full-blown AIDS and my foot being consumed by Kaposi’s sarcoma.

Living

Once the seriousness of my situation was determined, I was admitted to the hospital on the 22^nd of September 2009 and began antiretroviral (ARV) treatment on the 30^th of September 2009. My consultant gave me a reality check. “We can treat this,” he said, “but it depends on how you tolerate the treatment, if you do, you’ll be fine, else, you probably have 5 weeks.”

I took my first course of chemotherapy on the 5^th of October 2009 and 6 subsequent courses to the 8^th of February 2010. During this course, the cancer lesions had completely healed by December and the HIV viral load was undetectable, my CD4 count which was at a nadir of 20 struggled to rise beyond 200 for years, now it is over double that.

I have taken a more studious and responsible approach to my medical situation since 2009, being quite aware of new treatments, and changes that might be beneficial and seeking the best outcomes for my wellbeing.

Beyond the medicals, I decided I would not live as if I was dying, for in whatever time I have left, I could live a fulfilling life. I have done a postgraduate course, travelled the world, fallen in love, and am planning a new chapter in life.

With reference to the booklet, I was given on the day of my diagnosis, on skimming through, the expected reactions after a diagnosis were denial, shame, anger, fear, sadness and depression, guilt, and confusion. I told the nurse who was crying at my plight, that this booklet is missing the most important message on such a life-changing event, the message of hope.

Before I put the booklet away, I wrote on it, HOPE, BELIEVE, LIVE and that is what I have done since then.

Gratitude

I am thankful for the grace of God that has sustained me, the love of my partner, Brian who in immeasurable ways has encouraged and buoyed me in difficult times much as we share the reward of happiness and companionship.

My best friend, Kola who never let me fall to the ground, the de Wolf family, my neighbours who were there to love and bear me up, John Coll, of blessed memory, and my ex-partners, Marc and Steven, still there with all consideration and friendship, old friends as Peter, Kayode, and Ola, new friends made who have brought new perspectives with the celebration of life, Bisi and Funmi.

My longsuffering parents, troopers and allies in ways beyond compare, my siblings all, prayerfully supplicating on my behalf, I suppose, there is a lot to celebrate about life itself. Yet, this story can never be fully told, at least not in a blog, it is just a sketch of what life has been.

References

Blog - A primer on cancer and chemotherapy (2009)

FOR AKIN - …on bravery, honesty and thriving. (2017)

Blog - How I battled HIV stigma (2021)

The Hospital blogs (September/October 2009)

In hospital to kill the pain

Golden red and painless

The looming abyss of a deep biopsy

Seeing hospital meals again

Getting off the pain train

Crutches on the drip

A relocation from the cacophony

Scuttling cancer with chemo

Nausea abates by suppository

A slumbering machine operator

Waiting for chemo

A life of cytostatic ostracism

I'm alive after my autopsy

One more night

Home - At last

Ease up, rest, relax, revive

Cold and sore

It probably should be the least of my worries, the irritating but least atrocious human herpes virus flare-up, the cold sore which folklore suggests comes from a feeling of emotional stress and a wearing down in the body. With no mind of looking for the science of this thing, it’s been a strange few weeks of pandemic loneliness culminating with the tragedy of the sudden passing away of my stepmother on Wednesday. [Humanherpes virus]

Looking through the human herpes viruses presents a checklist of events that should hardly be a topic of conversation except at the point of diagnosis in the readiness for treatment. Yet, cold sore many checks, chickenpox check, shingles check, kaposi’s sarcoma check and we are still here.

Tired of the cancer

Kaposi’s sarcoma was the worst experience, presenting as a fungating tumour and cancerous withering of flesh on the soles of my feet, more prominently on the left foot. It took 5 months of chemotherapy to blow that completely away.

Shingles was a strange experience, I had a complete rundown of strength in the week that I had guests in the Netherlands and the day before, I progressive felt strength drain out of me when we visited the Kinderdijk windmills, that by the evening I was barely standing and I was able to make dinner for us.

Those blistering poxes

When they left the next morning, I went to bed, and by noon, from the left arm over my shoulder blade and crossing over my back and unusually over my vertebral column to the right shoulder blade, the blisters appeared. Then travelled to Berlin for 4 nights and returned needing an airport escort in Berlin and personnel to ship me into a cab in Amsterdam. Bathed in camomile lotion, it was all gone in two weeks and thankfully without post-herpetic neuralgia.

Chickenpox was an affliction of childhood, I hardly remember, I know I was covered in spots and I was soon fine. We live with this thing sitting somewhere completely out of view until triggered by some event, condition, or even state of mind. I guess in the main, this is one of those things that we as humans have evolved to contain as much as possible. Keeping healthy in spirit, soul, and body is probably the best guard against it manifesting in one of its ghoulish costumes.

For World Cancer Day and every other day

In remembrance

I probably take no notice of the many days that are celebrated in commemoration of something throughout the year. However, the 4^th of February 2019 was one day I could not ignore because I was called out as an inspiration with regards to what the day represents.

World Cancer Day is a day to remember for many reasons apart from awareness and taking action for I belong to the cohort of those who have cancer in remission having survived the ravages of the disease almost a decade ago. Yet, I recognise and aver that we who seemingly and apparently have survived cancer are hardly valiant, we took no sword like knights to battle and vanquish the enemy that invaded our bodies, we are just fortunate.

Not in vain did they die

Rather, I want to commend those who did not have the good fortune I had, who like others would say lost their battles to cancer as if to confer some sort of heroism on those who survived as winners. Those that died are not insignificant, in fact, they in what they suffered and in all that medicine and anything else attempted to do to prolong their lives have immeasurably contributed to the body of knowledge that gives medicine the courage to face up to new incidents of cancer.

When I was verifiably diagnosed with Kaposi’s Sarcoma on the 30^th of September 2009, this is what my consultant had to say to me. “We can treat this, but it depends on how your body can take the treatment if you can, you’ll be fine, else, you probably have 5 weeks.”

On courses of chemotherapy

That knowledge and confidence came from experience and developments in treating others before me, some of whom did not survive the disease but, that had passed to the professor, to his students and the broader field of cancer medicine and oncology. On the fifth day of October 2009, I took my first course of Liposomal Doxorubicin (Caelyx) and I wrote a blog as a primer for cancer and chemotherapy, in trying to explain my condition to a friend.

“The course recommended for me is Liposomal Doxorubicin – liposomal meaning encapsulated in some fatty molecule and Doxorubicin is a very strong antibiotic. What happens is the liposomes allow for a slow release of the disease-fighting chemical into the body after intravenous introduction which just takes an hour, and this is not fully excreted from the body for up to six days.”

Blog - A primer on cancer and chemotherapy

I took 7 courses of chemotherapy every 3 weeks until the last course on the 8^th of February 2010, by which time the blackened cancers lesions had completely disappeared, the necrotised skin had been removed and I had fresh, tender skin in place of the foul and fungating tumours.

The battle for life

The battle I fought, in the end, was not with cancer, but with life in general. Cancer stripped me of everything except my humanity and my dignity. I literally lost my career, I lost my home of over 10 years, things I had acquired I basically gave away and had to start all over again. I gained a new perspective on life and the transience of things, the way the seemingly inviolable and easily become the complete vulnerable.

I learnt of the power of hope, the desire to live, the appreciation of life and an understanding of suffering. I stepped off the rat race and tempered my views with patience and consideration. Most pertinently, as I did not or do not know how much time I have left, I have lived a life of the living rather than of the dying. I am inspired to aspire and for as long as I have breath in me, I intend to thrive and be a story of being granted a second life of purpose.

None of this would have been possible without those who underwent more gruelling and horrifying intrusions of medicine so that my consultant could say with confidence, I could be treated. They are the specimens on which researchers concluded their research and came up for new ideas, solutions, treatments and discoveries. I commend those who died because of cancer and those who learnt from them to improve the treatments for cancer. It is by them that we get to write a different story.

World Cancer Day 2019

A primer on cancer and chemotherapy

Knowing more about it all

I have decided to provide a basic primer on cancer and some detail as to what lead to the diagnosis and treatment recommended for me.

This might help you answer some questions and in other cases leave you with even more questions. Please bear with me; I may not be able to address some more personal aspects of the information until a future date.

The important thing is; we know what it is, it can be treated, it is being treated, I am responding to the treatment, I believe I would be completely healed and any support leading to the goal of full recovery from affliction through survival to thriving is well appreciated.

Thank you friends, well-wishers and readers for your understanding. I also appreciate that connections and allusions can be made with the information offered – the cardinal thought and driving credo I have had for a very long time is – I will never live as if I am dying, I do NOT intend to start doing that now. I live to live well.

A primer on cancer and chemotherapy

The beginning

A basic primer on cancer, the cancer I was diagnosed with was Kaposi’s Sarcoma (KS) [1] and there are many variations of it, but due to a pre-existing condition, this manifested first as if it was athlete’s foot [2] and was localised to my toes and my soles.

The regular athlete’s foot treatments that cleared up the infection every summer before did not seem to catch on that I started using foot baths of Dead Sea salts; this aggravated the situation because it softened my skin to the point that lots of it rubbed off and came off allowing for other bacterial infections.

I should have had this checked around this time but a culture of self-medication along with an apparent shyness of doctors did not help – you learn, you change, you live.

Initial ideas and treatments

The infection became deep-seated and painful requiring medical attention and consequently the diagnosis that involves the treatment I am having now. The lesions that appeared under my feet first made them suspect a diabetes-related issue but my blood pressure in my extremities read as normal, that was eliminated along with results from the blood tests and the gathering consensus was KS, which was confirmed after the deep biopsies.

Because of the strong smell coming from the lesions, the infection had a bacterial component which was treated with a number of antibiotics as Metronidazole [3] used to treat fungating tumours but was not entirely effect and Flucloxacillin [4] which is a narrow-spectrum antibiotic.

Whilst these both seemed to reduce the smell and the pain, the lesions which had dried up in a manner under the sole but had become a bit less so under the toes meant a more aggressive course of treatment was needed.

Chemotherapy as a course of treatment

The agreed best course was chemotherapy [5]. Chemotherapy is in the broadest sense the treatment of disease by chemicals. These chemicals may have properties that inhibit the rapid multiplication of cells which is an attribute of cancer as well as work on aspects of the characteristics of cancers, their location in the body and the way it spreads.

The course recommended for me is Liposomal Doxorubicin [6] – liposomal meaning encapsulated in some fatty molecule and Doxorubicin is a very strong antibiotic. What happens is the liposomes allow for a slow release of the disease fighting chemical into the body after intravenous introduction which just takes an hour and this is not fully excreted from the body for up to six days.

This chemotherapy is widely used for many cancers and is very tolerable without most of the side effects associated with other chemotherapy treatments, I am glad about that, but one has been provided with medication against nausea, I prayed about it all.

Sources

[1] Kaposi's sarcoma - Wikipedia, the free encyclopedia

[2] Athlete's foot - Wikipedia, the free encyclopedia

[3] Metronidazole - Wikipedia, the free encyclopedia

[4] Flucloxacillin - Wikipedia, the free encyclopedia

[5] Chemotherapy - Wikipedia, the free encyclopedia

[6] Doxorubicin - Wikipedia, the free encyclopedia