Recuperation is something you should make time for

Learning to Prioritise Recovery

I completed my last chemotherapy session on 8 February 2010. There was another session scheduled for 1 March, but when I saw the ninth session was set for 22 March, I protested, telling my consultant that I saw my life resuming after 1 March and was not mentally prepared for further chemotherapy beyond that date.

My objection resulted in my multidisciplinary team cancelling the eighth session, but that was not my original intention.

Having been given my life back, I was back on the job market, seeking an opportunity, when my consultant said I needed another six months of recovery before returning to work.

Although I had a very generous welfare package, I wanted to return to work. My sense of independence drove me, just as it was clear that bills and the mortgage had not taken a break due to my illness.

The Cost of Returning Too Early

Within seven weeks of my last chemotherapy session, I was back at work. Then my body told me a different story: I neither have the strength nor the capacity for this responsibility. I need to negotiate an adjustment or resign.

The management was very understanding, and I was granted Wednesdays off. This break helped greatly throughout 2010. It was clear I had not allowed myself enough time to recover. However, I did not have the luxury of taking extended time off, as I was self-employed.

More recently, when I was diagnosed with malignant prostate cancer in June 2024, I chose radiotherapy and decided to work through the treatment in September and October of the same year.

On three weekdays during treatment, I had to finish early due to unmanageable fatigue, a known side effect of radiotherapy.

Pushing Through Despite the Warning Signs

Yet, after radiotherapy, I worked for another month as my strength waned, and I realised I needed more specialised care, for which I am grateful Brian provided in Cape Town. I was on sick leave for seven weeks, and although I was paid, I felt the urge to return to work halfway through the leave.

I returned on the first working day of 2025. I was not fully ready, but my spirit was willing; my body struggled beyond its capacity. I pushed through when another two months off would have been ideal.

Throughout 2025, aside from my holidays, hospital appointments and an episode of epididymitis—after attending the hospital, I returned to work; by December, I still had 14 days of annual leave remaining.

For someone coming off a cancer diagnosis and radical radiotherapy, I had overworked myself out of recovery and into a demanding work environment, complicated further by political issues within management. The mentality of just powering through.

A Wake-Up Call

When, on Monday, I experienced the recurrence of unexplained juvenile stomach cramps, there was a suspicion that I could endure the pain, and I did for hours.

A contractual obligation that we delivered to the client every Monday, which I controlled, I promptly completed ahead of schedule, posting the results before I left the office.

While the stomach ache did subside, it took its toll. I was in bed all of Monday, on nil-by-mouth except for essential medication. The same continued through Tuesday and most of Wednesday.

Amidst this, I realised: I do not give myself enough recovery time because I am driven, compelled or obligated by responsibility, circumstance, or situation. None of which is healthy.

A Commitment to Change

It is a realisation I must keep in mind. I am not in a competition of appearances. Good health will always lead to greater productivity; any shortcomings become visible somewhere.

A Google NotebookLM AI Audio Overview Discussion of this blog

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

Infertility does not impact being fertile

At peace with it

One of the side effects of this radical radiotherapy is infertility, she said, in our conversation about what to expect after treatment.

I had made peace with not having children long before chemotherapy zapped the reproductive capacity of spermatozoa 15 years ago. Until that saying about planting trees which suggests the best time to plant a tree was 20 years ago and the next best time to do that is now, for me, there is a limit to which bearing children should be discounted.

At ease with myself

My father was potty training my half-brother at 69 when I at 43 had made peace with the idea that I was 13 years beyond the time I would have found it a worthwhile experience to have children. I never even tried.

It was an advertisement on television that helped me settle this matter. A career woman talked of how she continued her education when her peers got married and raised families, and now, having achieved everything, she realised as the children of her old schoolmates were leaving university, she was just on ‘Incy, wincy spider,’ with her own child.

There was no point looking for that parenting boat, not only had it sailed away, it had docked at too many ports for me to swim out to sea to board it, I had better concentrate on being an uncle where I am allowed to be that to nieces and nephews.

Besides, my half-brothers could easily have been my sons, my father likely thought it was his responsibility apart from my brother to keep the name alive for posterity. You can never be too sure of the motivations for these things.

At these with life

Infertility is not an issue, and it happened because of a life-saving medical intervention. Indeed, people might be more concerned about sexual facility and function for pleasure than for reproductive purposes. The African man in me does not have a predilection for progeny.

In early 1990, I walked past the Cathedral Church of Christ in Lagos where a funeral had brought the most influential people in society to celebrate the life of a lady who had died childless, aged 93. What it brought to light was an inalienable fact, both the one with children and childless will be buried by children, who might not be yours. There is comfort in having lived a good life.

Infertility is not a disability that it becomes a state of mind, the world offers amazing ways to be fertile with imagination, ideas, insights, and inspiration to be just as impactful with the implements of our humanity.

Yesterday remembered today

Of days remembered

I probably have a knack for remembering dates and events, though I cannot say I have total recall of everything. Sometimes, things are not remembered at all, or the memory is a bit fuzzy. Much as I had many encounters with diaries growing up, I never saw anyone journalling anything, the most a diary was used for was appointments and at a stretch, a calendar.

Having a blog going back 20 years has offered key points of journalling, though not in the strict sense, I still find myself noticing and making notes in blogs that I can reference as an aide-mémoire.

Yesterday, all my troubles

I thought about writing this yesterday but here I am reflecting on the significance of yesterday today. The 8^th of February; when I joined Twitter, I buried a friend, and it turned out to be my last session of chemotherapy.

Interestingly, the former happened in 2009 in the week that the 13^th fell on a Friday and I joined the bandwagon of those caught in the grip of paraskavedekatriaphobia on what appeared to be the coldest day in the office because someone thought that would be our contribution to helping stem the problems with climate change. We were to wrap up warm rather than enjoy the ambiance of a comfortable office. My first tweet? See below:

I am now a twit on twitter ...

— Akin Akíntáyọ̀ 🏳️‍🌈 #European (@forakin) February 8, 2009

Blog - Caught between Paraskavedekatriaphobia and Cryophobia

A sad tragedy, it was

Then in 2010, my friend Dick van Galen Last died on the 2^nd of February, 8 days short of his 58th birthday, and hardly 2 weeks after he defended his PhD thesis, an event I could not attend as I was experiencing the most debilitating effects of chemotherapy two days after, I was so weak and for the first time, I had anti-emetic medication that worked a treat.

I had planned on calling Dick to ask about his defense as he had informed me in late December that he was having his PhD viva voce and I had made my excuses that I might be unable to attend. It was then that he told me he was undergoing treatment for lymphoma, I cannot remember if it was Hodgkins or non-Hodgkins. I quipped; we might meet for tea in the treatment room as we shared the same oncologist.

When my phone ranged on Wednesday the 3^rd of February, the number ID came up as Dick’s phone number, but it was Ousman on the phone who was Dick’s lodger and he regularly came to clean my apartment, the news he had on the phone was that Dick had passed on, but he had refused to have Dick taken away, Dick was lain in his bed for his friends to come and pay their respects until the day of his buried. I cried all the way to Dick’s place.

Blog - Dick: As he lay

A man, a celebration

The morning of the 8^th of February was a dreadfully cold winter morning, I got on my bicycle and rode to the St Barbara Cemetery where we all assembled in the chapel to give Dick a rousing and celebratory send-off, the crowd, especially of the youth that attended with the eclectic mix of different cultures and personalities was a testament to the person he was. The music as pallbearers carried him to the burial plot could not have been out of place at a carnival.

Blog - Seeing Dick Off

However, I could not wait to see him buried as I had another appointment, the 7^th session of chemotherapy, with the 8^th and what I had hoped would be the last scheduled for the 1^st of March. When I arrived at the hospital, the nurses who also knew Dick were quite sad at his passing, one even indicating there was nothing to suggest Dick was at risk of death, he did not have the kind of prognosis I was given at my diagnosis.

It became the last one

Not a vein could be found around my hands up my wrist to insert a cannula for chemotherapy even after warming my hands in hot water than the insertion was further up the arm near where phlebotomists took blood.

Blog - Almost in vain for a vein

I did not know that session would be my last chemotherapy dose until a checkup over a week later in conversation with my consultant that they agreed that the focus should be on recovering my immune system and the chemotherapy had done its job fully as predicted by the consultant in September that the cancer could be treated if I tolerated the treatment.

I could have made much of yesterday and yesterday is a narrative that gives the past a telling different from when you are living in the present. Thank you for the past we can remember in words of triumphal living against all adversity.

Cancer: No journey is the same

Cancer humanises us

The news that King Charles III has been diagnosed with cancer brings a sense of shared humanity in its frailty, suffering, mortality, and survival. We are told it is not prostate cancer and it was discovered when he went in for a procedure due to an enlarged prostate. [BBC: King Charles diagnosed with cancer]

As a monarchist, a fellow human being, and a survivor of cancer, I can only wish His Majesty a full recovery and restoration to health and vigour. Yet, a cancer diagnosis can come with shock and a dire prognosis, in my experience, is not a battle to fight as only the real tools we have against cancer are faith and hope. Faith that the medicine, the miracle, or both work and the hope that there is a life after cancer.

This looks serious

I watched as what seemed like Athlete’s Foot on my left sole change from the dark blotches of discolouration into a painful weeping sore, I foolishly thought it would go away even as a little voice in me whispered this was cancer tugging at the heart of my life ready to thrust me off this mortal coil.

Eventually, I summed up the courage to go to my doctor demanding urgent attention as the pain had become otherworldly unbearable. The moment she saw my foot, she said, “This looks serious, I have to refer you.” Immediately, she was on the phone to the hospital and moving heaven and earth to get me in as soon as possible, and I got an appointment for the day after.

On observation by the consultant, he said, this is serious and is related to internal diseases, the internist would be in next week on Tuesday, it was Thursday, and I’ll be the first person he’ll see. I was given painkillers that killed nothing, a placebo would have done much better to manage the pain.

I have heard, then again, I know the pain of cancer, I was eventually on 4 different kinds of pain management, the most effective being a Fentanyl patch that I received a doubled dosage of after a few weeks because that pain just refused to fully subside.

We can treat this

Several analyses were conducted on what were fungating tumours that antibiotics did not seem to affect, having eliminated a diabetic cause, a deep biopsy of the lesions was done, and then the consultant came to my bed to give me the news on the 9^th day of my admission to the hospital.

These were his words, “We can treat this, but it depends on how your body can take the treatment, if you can tolerate it, you’ll be fine, otherwise, you probably have 5 weeks.” Two things I took away from this message, the advances in cancer treatment for Kaposi’s sarcoma were such that medicine had confidence, and the fact that mortality loomed 5 weeks away left you with a sense of the gravity of what a cancer diagnosis might mean to anyone.

At that point, I thought, I am going to survive this because I had by then navigated the Kübler-Ross Five Stages of Grief, skipping Depression and Bargaining to reach an Acceptance that I spoke within myself, “Akin, you have cancer, what next?” I was already looking beyond cancer and with that, I had my belief, my faith, and my prayers with the support of many friends and particularly neighbours.

Treating cancer, killing cells

I began my 1^st course of chemotherapy on the 5^th of October 2009, it was to be administered at 10:00 AM but delayed for 3 hours, I did not know that after the course I would be consigned to cytostatic ostracism as the cytotoxic component of pegylated liposomal doxorubicin (tradename Caelyx) meant no one should be in contact with any of my bodily fluids for up 5 days after chemotherapy. Nurses had to don personal protective equipment (PPE) to take blood or dispose of my urine. It was unpleasant, the treatment and the treatment.

As I tolerated the chemotherapy, more sessions were added, and I became more nauseous after every session three weeks apart that by the 5^th session, I was given novel anti-emetic medication to help keep my food down for the days after chemotherapy.

When I saw that a 9^th chemotherapy session was scheduled, I remonstrated to my consultant that I was planning on restarting my life from the 1^st of March 2010 when I was to have received the 8^th chemotherapy dose, they stopped with the 7^th which I took on Monday, the 8^th of February 2010 in the afternoon after I had attended the funeral service of my dear friend Dick van Galen Last who sadly did not tolerate the chemotherapy as well. We had the same oncologist.

By the 4^th chemotherapy dose, the cancer lesions had disappeared, and beneath the necrotised skin which had to be stripped off was fresh pink skin which however did not retain that colour.

What to expect

Each cancer journey is different, I count myself fortunate that the body of knowledge accrued from many who had no hope when medicine first encountered these cancers, others on whom experiments were conducted and never survived, then those for whom successes led to improvements and advancements that we further down the line took advantage of because medicine was confident and the treatments could be better managed for good outcomes.

• Do they know what you have?
• Do you understand it and how far gone is it?
• Is it treatable and what is the prognosis?
• What particular outcomes do you want, what options do you have, some might just want to go home than face gruelling cancer treatment? 
• How prepared are you in spirit, mind, and body for this journey?
• What is your source of hope in the midst of adversity?
• What support networks do you have to draw on?

Hope springs eternal, I believed and saw myself beyond the cancer and probably not much further, but each stage of progress gave the kind of assurance that there will be life after cancer and even if there was none, I would not have died in despair, hopeless, hapless, and without any sense of having lived well.

It is the most encouragement I can give to anyone facing cancer, it is a difficult process, it is part of the human story, some survive, and many do not, we are all grateful for life, but the biggest battle when faced with adversity is whether you can see yourself getting beyond it or life ending because of it.

There is no judgement in what you see, either way, your life and your story would be you lived, you loved, you touched and were touched, and the rest falls into the annals of timeless eternity, you walked this earth and will never be forgotten.

Chemotherapy as a journey to survival

A body for assault

No two experiences of taking chemotherapy are the same, at least that is what I think from my own situation. As I took my delayed first session of Caelyx chemotherapy (liposomal doxorubicin) on the 5^th of October 2009.

It was scheduled for 9:30 AM but postponed for 3 hours. In that time, I received a brilliant bouquet of flowers from Stockholm which brightened my outlook quite a bit.

I had been informed that I was not going to lose my hair, not that I had any to lose, and my fertility will be affected, not that I was planning to procreate nor was I in the state to make a preservation order on that account.

Taking cancer head-on

When I was wheeled to the oncology theatre, I was canulated and this red liquid in large sachet covered in aluminium foil to shield it from light was passed into my veins for a period of 45 minutes to an hour.

It felt like a homeward straight in my therapy, the fungating tumours of Kapasi’s sarcoma were going to be snuffed out. The chemotherapy being cytostatic, meaning it kills cells and stops cells from growing also meant that I was a health hazard to others who had to be careful about having any contact with any of my bodily fluids including blood.

After the first session, my bed was cordoned off in isolation and that affected me more than the bloated feeling that was a side effect of drug. I was informed of everything I could expect apart from the isolation which was removed after 2 nights.

How it all transpired

I had 7 chemotherapy sessions every third Monday until the 8^th of February 2010. In terms of side effects, it was the loss of taste, the only things I could perceptively taste were yoghurts and cassis black currant drinks. I was literally knocked and without strength for the second and third day, then by the fifth session, I could not keep my food down that I had to be given medication to manage the emesis.

By December, the cancer lesions had disappeared, new pink skin was showing up from under the necrotised skin which needed to be cut away. It is not the best experience, but if it is the only viable course of treatment, you just have to hope you pull through it, for at the same time, a close friend on chemotherapy treated by the same oncologist did not survive his third session of chemotherapy.

Just striving to live

I guess what I learnt through the process was that you were given more of the chemotherapy if you tolerated it well. When I visited the hospital for my out-patient sessions, the ward was well-equipped, the couches were fully adjustable to recline into beds, if so desired. I took my thermos flask of tea, some biscuits, and some reading material.

Apart from the staff, we were a ward of people fighting to live, from the boy who came alone, hardly a teenager to the elderly people, just hoping that the medicine gave us a lot more time than when we first heard the word cancer spoken about our condition.

This blog of reflection is one that also recognises that people with my condition at diagnosis rarely lived for another 10 years. I have been fortunate, and I am grateful for the grace of God on my life, the amazing miracle of medical science, the support of extraordinary friends and now the wonderful love in my life, Brian. I am blessed.

Appointments to celebration and chemotherapy

Looking back at things

I do not remember much about my second session of chemotherapy twelve years ago. It was however, my third visit to the hospital after I was discharged 17 days before. The first was to take gifts to the nurses who tended me over my 18-night stay. The second was the Friday before what became my every 3-week chemotherapy session, it was for blood tests to determine how I was tolerating chemotherapy.

Blog - A second course of chemotherapy

That day had so much going on, just as it was my father’s 70^th birthday, to which I could contribute nothing, I was basically fighting for my life not to talk of my livelihood that was not close to my consideration at the time.

Blog - 70 - A man of integrity planted like a tree of life

The stories we are gifted

Weeks before I had already said the celebrations should go ahead in Nigeria rather than have my situation in faraway Netherlands sour the occasion. I have been blessed and quite fortunate to be able to do a lot more for my father’s 80^th birthday that was celebrated in the way he wanted things to be.

These memories signify a sense of gratitude that old times of great infirmity and adversity have become stories of life on which to reflect on how grace and favour carries you through things which at the onset you never think you have either the wherewithal or capacity for. You look back in wonder at what stories you have been given to tell, uniquely yours alone. I am thankful.

Blogs - The Cancer Tales (2009)

We suffer as grass in fighting cancer

In the scheme of things, cancer

An African proverb says, “When elephants fight, it is the grass that suffers.” The meaning from The Oxford Dictionary of Proverbs suggests, ‘The weak get hurt in conflicts between the powerful.’ [TODOP]

This was the thought that came up in discussion with my boyfriend on the shocking and sudden death of his uncle from cancer. I reflected once again on how battling cancer rarely involves the person as there is hardly any natural means of defeating it.

Rather, we are the battleground on which the cancer is tackled by chemotherapy, radiotherapy, therapeutics, and/or surgery. For we are the hosts for the onslaught that is raised against cancer, with the caveat that we might or not have the physiological capacity to tolerate the treatment.

Tolerance in intolerance

When I had 7 sessions of chemotherapy, each session progressively attacked cancer and left me weaker with a totally compromised immune system that was already immunodeficient because of HIV and full-blown AIDS that my consultant was beginning to worry about doing something for the cytotoxicity of the treatment.

Meanwhile, one the day of my 7^th session, early that morning I had attended the funeral service of a friend who passed on after 2 sessions of chemotherapy. It had exhausted him totally that friends who attended his PhD viva voce just 13 days before he passed on said, they can hear the strength drain out of him in his voice, he was barely there.

Our mortal frame

I do not subscribe to the idea of battling cancer as something you can overcome by the force of the will or any kind of determination, you can only aim to trust in the medical expertise brought to bear and hope that you can tolerate whatever is thrown at your body and that there is just sufficient in your system to carry you through to the other end where you have just been fortunate to have survived.

For He knows our frame;
He remembers that we are dust.
As for man, his days are like grass;
As a flower of the field, so he flourishes.
For the wind passes over it, and it is gone,
And its place remembers it no more.
[Bible Gateway Psalm 103:14-16 (NKJV)]

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)

We can treat this

Commending medical advances

Confidence without a tinge of arrogance or boasting, just a good sense of understanding the situation and how to deal with it is one of the far-reaching lessons I learnt about the Dutch medical establishment, specifically related to my situation.

I qualify this because whilst I had the onset of AIDS presenting as cancer, some other close friends who had been diagnosed with different kinds of cancer did not make it. It was September, Dick came to visit me at home after I returned from hospital in October, that was when I last saw him, we spoke sometime in January, and he was gone by the 2^nd of February.

Marcella, a very gregarious and generous Dutch-Indonesian, I had seen in August when she persuaded me against my inclinations to attend a party at her place. I was in pain that she shared some of her painkillers with me. She had had cancer which had gone into remission, but it returned aggressively in the New Year and by October, she was gone too.

It is against this backdrop that I appreciate everyone who has ever faced cancer, because whether we live or die, their medical experience redounds to the body of knowledge that helps to define outcomes for others. Hopefully, better outcomes too. To all who have had that human cancer experience, I am exceedingly grateful.

Life or just 5 weeks

For instance, Fela Anikulapo-Kuti, the internationally renowned Nigerian musician died of an AIDS-defining disease presented as Kaposi sarcoma, 12 years before I had the same condition, and I cannot speak for the kind of medical opportunities he had then. Kaposi sarcoma lesions were for the while definitive of the onset of AIDS and it was a downward spiral from then on.

Blog - Remembering Fela (1938 - 1997) through our shared history of AIDS

However, when the professor visited my beside the day after I was put on ARVs and suggested the treatments offered theretofore were not producing the desired outcomes, he had a new plan of action and with confidence he said, “We can treat this …”, the only caveat was whether my body could tolerate the bombardment of chemotherapy, for if I could not tolerate the treatment, I only had 5 weeks at best.

Blog - Scuttling cancer with chemo

How I fared with chemotherapy

I was put on liposomal doxorubicin (Caelyx), all the basic information was given me some 4 days before my first session of chemotherapy, the only thing I was not told was about cytotoxicity, the fact that as the treatment killed living cells, anyone coming in contact with my bodily fluids, especially blood had to don biohazard clothing, and I was to be in an isolation cordon whilst in hospital.

I eventually had 7 sessions of chemotherapy on Mondays, 3 weeks apart, by the 3 session the cancer lesions had begun to disappear with the need to remove necrotised skin and allow fresh new pinkish skin to show. I tolerated it enough, though, by the fifth, I needed extra medication to deal with the emesis.

It was 12 years ago, when I was being informed of the decision to put me on chemotherapy that the consultant said, “We can treat this, it depends on how your body takes the treatment, if it takes, you’ll be fine, else you probably have five weeks to live.” That confidence added to my ability to see beyond the circumstances I was in.

For friends and things we can't forget

A yesterday like today

It feels like yesterday, but it was 10 years ago today, a cold wintry Monday in Amsterdam where I had two things to do. First, it was the funeral of Dick van Galen Last, my dear friend who had passed on 6 days before and then I was booked in for my 7^th session of chemotherapy in the afternoon.

Blog - Seeing Dick Off

The funeral service, which was well attended, vibrant and redolent of the amazingly outgoing personality that Dick was. I then followed the procession to the place of internment but never got to witness the committal to earth as I had to leave for the hospital.

Back to chemo

At the hospital, the cold had in natural preservation conceals all my veins that it was impossible to find a point into which to insert a cannula for my session of chemotherapy. Washing and soaking my hands in warm water could not tease them out. Eventually, the cannula was placed so high up on my arm close to where a phlebotomy would be done.

The 8^th of February 2010 did become more significant as when I when in for the blood test preceding the 8^th session of chemotherapy, I noticed a 10^th session had already been scheduled. My chemotherapy sessions were on a Monday, 21 days apart, however, in the Friday before the next session, I have a blood test to determine the efficacy of the treatment and what further courses should be taken.

My voice considered

I did not know that the more you tolerated chemotherapy; they had a tendency to heap on the sessions rather than reduce them. We had gone from a session to two, then four and now eight. The eighth was to be on the 1^st of March 2010.

On seeing one scheduled after that date, I began a discussion with my consultant. I was hoping to get on with my life after the 1^st of March and I did not think I had the mental capacity to accommodate another session of chemotherapy. At the back of my mind, I remembered a nurse telling me that some patients have endured up to 14 sessions of my kind of chemotherapy.

My consultant listened and opined that he had been thinking about the situation too, my immunity was so shot up, he needed to see it begin to rebuild itself. He promised to have a word with the oncologist. Afterwards, I received notice that my 7^th session of chemotherapy taken on the 8^th of February would be my last. I was in clover.

Life goes on

The prognosis after that was, I needed at least 6 months of recuperation after the ordeal of my treatment. I, however, did not have that luxury. I sent out an email to my LinkedIn contacts explaining my situation. I started work on the 22^nd of March, but the week after seeing how exhausting the activity was, just because of my lack of strength, we agreed that I could have the Wednesdays off.

Yes, it seems like a long time ago, it is one to celebrate for the memories of that time and the passage of time to this day.

It was another year before I returned to St Barbara Cemetery to visit Dick’s grave, for the good friends we’ve lost, there remains more than a memory and a fondness for the times we shared. They are never forgotten.

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

Thought Picnic: I did not know I was clinically depressed

The foundations of woe

The so many ways I have been blessed and fortunate sometimes escapes my recollection and the constant need for expressing gratitude.

Having been brought up in an environment where everything was seen in terms of the supernatural, the spiritual, the paranormal and fates over which we had little control than to be in fearful supplication to deities that hardly be bothered with our pleadings because we had not flagellated ourselves enough to be worthy of a hearing. The psychological damage had the strongest foundations to build upon.

The result was fear, foreboding and premonitions, visions and apparitions of things that defy logical explanation, yet, were as real as they could be to one as the principal agent and victim of that circumstance.

Between critique and criticism

A constant questioning of one’s sanity not helped by the reasoning that was projected on my person as being slow, sometimes unsighted, probably dishonest and hardly reflective. None of this was helped by those who found opportunity and latitude to take sexual favours off me from childhood and the absence of someone in whom to confide in about my fears.

My fears as I would learn were signs of weakness, a feeblemindedness that needed a stricter and harder way of life from the simplicity of ease in my home. A boarding school beckoned and away I was from that presumed safety and left at the whim of tortuous cruelty to which I needed to adapt lest I be bullied more than I had the capacity to endure.

Beyond that, I was a bed-wetter, at a time when it was not considered a psychological issue, but one in which I lack self-control or discipline. The antidote it was to shame and to ridicule me, all of which I absorbed because I was the problem. For the first two years of boarding school, my mattress was given a daily airing in the sun, just as was the case for two other classmates.

The things I saw that none believed

It all came to a head, first at home when I thought the monstrous thing I saw twice in one night was the devil, having been primed earlier in the day with tales of horror. My experience was dismissed as excited exuberance and my life became the recitation of Psalms in a language I could hardly speak over cups of water to drink or buckets of water to take a bath.

From prophets to shamans, I found myself in hovels and grottoes, prognosticators, seers, mediums and sages, saw evils and perils ahead for which we needed to appease gods and God, none of which helped my psychological wellbeing.

I did not know I was depressed

It is only recently that I have been able to reflect on the fact that my late childhood into my teenage years' presented classic symptoms of untreated clinical depression. Irrational fears, sinking feelings and waves of terror that greeted my sighting our house from the beginning of the street that led to it. I could not explain it, but it was there, a burden, a weight, an unease and utter discomfort that I just pressed up against as other unhealthy habits and acts began to characterise my personality.

The times I attended lectures and could not for the life of me appreciate why or what I was in class for. The culmination of which was five wasted years of tertiary education, for what I had in mental capacity was nowhere near able to overcome the psychological stresses I was under, conveniently dismissed as lazy on the one hand and me not pulling my weight.

I just muddled through day after day until a sudden decision by my father to work the demons out of me at his flailing farm led to my running away from home. It probably was my saving grace, because the pressure in my chest lifted, but I could see no future yet.

A new lease of freedom

Then, in my darkest hour, my aunt invited me to stay with them, then, rather than press me into their way of life and belief systems, I was given the latitude to explore, to breathe, to grow, to assert and to thrive. That led to the rebuilding of everything that I had lost, the full force of facing my failures and having at the back of my mind that opportunities once lost can be regained, albeit after a temporary setback.

I have not even touched on the compounding issue of addressing, understanding and accepting my sexuality. That, I have borne as a refrain and undercurrent of my life since as early as seven.

I just coped and not out of ability

Depression presented itself too many ways that maybe the Psalms, the prayers, the rituals and much else helped me survive, even if I doubt I was ever free from its effects. The coping mechanisms were a kind of stiff upper lip stoicism, reserves of resilience I never could account for, or a sense of independence or even inviolability or invulnerability left me exposed to situations where I had a false sense of security.

Schooled on the idea that only the weak needed therapy, it was not until a few months before I was struck down with cancer, I had just survived a bout of shingles that discussing all the feelings and apprehensions I had with a neighbour with a career in medical sciences posited that these were signs of depression.

Things I left undone

I gave it no further thought as I ended up in the hospital and traversed a course of five days from denial that my life was in grave danger to the acceptance that whatever danger was presented, there was a possibility of a future beyond this. It meant that when a prognosis was given that I probably only had five weeks to live if I did not tolerate the treatment, I was more in hope than despair that I would see it through.

The fact that I had left this existential threat almost too late to be attended to might have in another setting drawn excoriation and rebuke, I was fortunate to have sympathetic and determined medical personnel supporting me through the ordeal.

How my personality attacked me

As I began the course of treatment, the way I presented gave the false impression that all I needed for the medical intervention, it took demanding a psychological attention to my situation before I was recommended for therapy and psychiatric counselling. My case was, having suffered a catastrophic loss in health, wealth, well-being, status, comforts and on the verge of losing my house, there was no other indicator needed to describe my need for urgent psychiatric help.

My medication presented other issues and side effects, diarrhoea, insomnia and occasional claustrophobia acute in vivid dreams and once experience that had I not resisted stepping out of my apartment, I would never have returned to that safety and enclosure ever again.

I did not present the classic signs or the way the questions were asked of me suggested I needed no help, yet, I felt just the opportunity to talk to a professional was more than necessary before I lost my mind. The bills were mounting, creditors were threatening and there were no easy solutions in the midst of undergoing chemotherapy, the loss of two close friends and no clear future prospects beyond surviving cancer.

The terror of suicidal thoughts

Then I was terrorised with a crazy thought, I lived on the 7^th floor of an apartment block, my windows were tall and apart from a single bar at the lower end, I could step out. I had visions of stepping out and flying, then knowing I could not fly, a playback recurred of my body splayed out dead on the tarmac below. It haunted me many times, but something kept me from carrying it through.

I had a story and I did not want it to end in that way, there were enough tragedies and misfortunes swirling around than for my life to culminate in that, I never talked about it to anyone. I am just glad that the thoughts never got to the point that they overwhelmed my reasoning. I found times to cry, probably not to regret, I embraced my humanity and vulnerability and comforted myself with thoughts that things will eventually turn for the better.

I found the support that pulled me through

None of this would have been possible without help; medical, psychological, in friends, in neighbours, in lovers, in my faith, in hope, in God. I was not invincible, I never was, I just by fortune beyond what I probably deserve found peace with myself, an acceptance of who I am and an accommodation for the frailties and failures that have become part of the story of the successes and victories in life that I also celebrate.

As I think of life and also think of death; I hope that as long as I live, I continue to love life whilst not living in the fear of death.

Remembering Fela (1938 - 1997) through our shared history of AIDS

Remembering Fela

When I heard that Fela Anikulapo Kuti had died on the 2^nd of August 1997, 20 years ago, I was very sad and I mourned him. He was the outlier, labelled the outcast who outed the potentates and powerful in their abuse of power and privilege.

His shrine was hardly a mile from Yaba College of Technology where I was a student from 1982 to 1985. There was an elite fraternity that invited him to perform on the grounds of the school and we the poor students had to find sneaky ways to view his performance from outside the barricades.

I suppose others will write about Fela’s life, his politics, his beliefs and ideology along with his activism, I would write here about a shared affliction.

Lesions and pain

On the day after Fela died, his brother, Professor Olikoye Ransome-Kuti announced that he had died from complications due to AIDS, further commentary suggests he had Kaposi's Sarcoma which is a form of cancer and the other parts of that commentary that indicated how he suffered might well prove that is what killed him.

On the 22^nd of September 2009, a little over 12 years later, I was admitted to hospital after a desperate visit to my doctor a few days before, when she saw the lesions on the soles of my feet and decided they looked serious, very serious indeed that she had to refer me twice.

What became lesions, started some months earlier as common Athlete’s foot until my self-medication attempts did not see it off before it began to seep pus and then became unbearably painful. Much as I was already aware that I was HIV positive, I was not on medication and to everyone around me but myself, my health was deteriorating and failing without me paying much heed.

Full-blown AIDS

When I did make it to hospital, and the first checks indicated the lesions were not related to diabetes, I was put on strong antibiotics which from my research suggested they were to attack fungating tumours, that was the first confirmation that I had fearfully thought was the case some weeks before, I had a cancer, but I did not know its name.

I will not be surprised if Fela also found himself in the same situation, in excruciating pain, the tell-tale lesions hidden from view, for usually, Kaposi’s Sarcoma can show on the face, in the mouth, or anywhere on the body, mine was on the soles of my feet, and so, it only made them quite painful to walk on.

After a few days, the antibiotics failed, I was running a temperature and some deep biopsies were ordered, 9 injections of lidocaine after, the pain was just as demanding of attention and reaction, I folded a piece of tissue paper into a thick mouth guard and bit on it as the doctor poked into the heart of the lesions.

The results came back a week later, I had Kaposi’s Sarcoma as a result of having succumbed to full-blown AIDS, I was dying.

Endure or die

My consultant came to chat to me and said, “We can treat this, it depends on how your body takes the treatment, if it takes, you’ll be fine, else you probably have five weeks to live.”

In a strange land, amongst people of a different tongue apart from friends and neighbours who became my support network, I had no closer relation to turn to as the gravity of my situation sank in. I was by then on antiretrovirals (ARVs) for almost a week when 5 days later I was put on a regimen of cytotoxic chemotherapy.

I was on chemotherapy for 5 months every three weeks, though, by December, all the lesions had gone, my HIV viral load was down to undetectable but the pain of cancer lingered for another two months after that.

Healthcare options and choices

I sometimes wonder if Fela ever had access to anything like the care I had, though a late diagnosis presenting AIDS, there was a lot that could be done for me once they determined what the cause was, what the lesions were and what treatment was effective against it. The cost of my treatment was also borne by insurance for there was no way I would have been able to afford the cost.

If I transposed this situation to the UK, my feeling is my doctor would have seen the lesions and adopted a wait and see attitude rather than act with urgency. I am not sure of what the options would have been in Nigeria.

Making known to the public that Fela had AIDS before he died might have sown panic in the populace apart from the stigma that comes with being HIV positive that still exists today.

Get checked, get treated

The antiretrovirals of 1997 might not have given much respite to Fela as he succumbed to AIDS, however, if anything can be learnt from Fela’s and my situation, it is the need for regular check-ups and on diagnosis, prompt intervention for treatment before things go seriously downhill from there.

Now, antiretrovirals are quite effective and are mostly free, they give people with HIV life expectancies similar to the uninfected, the advent of Pre-Exposure Prophylaxis PrEP now reduces to a minimum the transmission of HIV for those without the virus, and studies now indicate that if your viral load is undetectable then the virus is un-transmissible. [Undetectable = Untransmittable]

In conclusion, as I remember Fela today from the perspective of our shared history, I ask that you get regular check-ups, get informed, get treatment and get on with your life. I got a second chance and I am here to share my story 8 years after AIDS and cancer.

Explainer between HIV and AIDS

AIDS is caused by HIV and it is a catch-all term for opportunistic infections that take hold when the immune system is completely compromised. A regime of antiretrovirals would give the body a fighting chance because HIV gets suppressed, the viral load goes down, the cells that can fight infection and disease gain ascendancy along with the drugs administered and you go from having full-blown AIDS to having HIV with an undetectable viral load and a chance to live again.