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Futile fight to save my mother from cancer during the Covid-19 lockdown

Hadijah Nakitende, one of the founders of The Sunrise newspaper passed away June 21, after a year-long battle with cancer.
Hadijah Nakitende, one of the founders of The Sunrise newspaper passed away June 21, after a year-long battle with cancer.

When her terminal slide started, she told me she had wanted to delay that last dose of chemotherapy that seemed to suck life out of her

Somewhere in April 2020, I received a text message from my mother. It was not unusual for her to send me messages.

But this time the subject of the message was far away from the routine.

She had been feeling unwell and had checked into a nearby clinic in Namasuba, a trading centre southwest of Kampala in Wakiso District.

For a longtime, she had been complaining of stomachaches, which, as many of us had thought, were connected to fibroids that had given her a puffed up tummy as if she was expecting.

The fibroids had been a subject of discussion with many of her relatives and friends, urging her to find a permanent solution, while others offered herbal remedies that they were convinced would somehow make them disappear.

Apart from a puffed up tummy, they, it was assumed, had presented her with a number of discomforts, occasioned by episodes of mild illness with the most frequent being stomachaches and sometime on-and-off fevers that would often disappear even without medication.

However, unknown to many of us, Hadijah Nakitende, who many fondly called Hajat because of her way of dressing and occasional discussions about Islam, was ailing with a terminal illness that would kill her in just under two years of diagnosis.

After I had read the message, I responded with a call, which she, out of practice, switched off before calling back.

Nakitende, even when I would have enough airtime, she had made it a point that she calls. My belief was that she always assumed I had no airtime.

Actually, she would tell me, “I don’t want to waste your airtime yet I have enough “free calls” to speak for even a day”.

On the other side of the line, she sounded fine. Nothing could even indicate she was in any pain. She was her usual jovial self, letting out those occasional and relaxed laughs that would echo through the earpiece.

In fact, for the more than 15 minutes that we spoke, very little was said about her feeling unwell.

Of course, there was an unusual quiver in her voice that indicated she was not 100 percent fine.

Our conversation had been interrupted by occasional coughing that would stretch to something like a minute.

Whereas it was not that scary, I had noticed it was something that had started to appear more often.

Therefore, before I could hang up, I told her I would pass by home after work even as I was aware it would be a difficult attempt due the lockdown.

The government had announced a lockdown to stem the spread of Covid-19, which had limited us to phone calls and forced us to put off plans to return to Insigiro, southwest of Uganda, where in December 2019 we had been for my Kuhingira (introduction) ceremony.

Our plan had been to return to my in-laws to know each other better, away from the Kuhingira crowd.

Movement had become almost impossible but I knew I needed to find a way to Namasuba because I had this gut feeling that Nakitende was not okay.

The frequency of her sickness, mild as it was, had started to worry and scare me, even when she seemed to handle everything with calm and casualness that suggested everything was fine.

Before that, in December 2020, she had all of sudden fallen sick but had quickly recovered in time to organise family, friends and relatives for my Kuhingira ceremony that occurred shortly before the lockdown.

At around 5pm, I had completed work and was ready to get on the road.

Traffic was extremely light. Only cars with stickers issued by the Ministry of Works and Transport or those with express permission from a Resident District Commissioner were allowed on the road.

I had a car which had no sticker and I had no time to seek authorization. However, I was convinced I would manage to maneuver my way to Namasuba.

I got to Namasuba at around 6pm. It was the first time I was seeing my mum after almost four weeks of the lockdown. She looked a bit frail, but not enough to tell what lay ahead.

Inside her bedroom, she had been conversing with a visitor, who I later understood had travelled from Turkey just a few days earlier. I joined them, choosing a spot next on her bed from where we talked up to about 8pm.

Already, I had reasoned that it would be difficult to maneuver through the roadblocks at night, so I had called my wife to tell her that I would sleep at mum’s.

At around 8pm, I excused myself into the sitting room after I had noticed that my mum seemed exhausted, perhaps from a long day at the clinic or the medications.

In fact, it is possible that she fell asleep immediately I walked out of the bedroom because after just about 30 minutes, I returned to find her fast asleep.

At around 8am the following day, I went to her bedroom. We talked of the possibility of going to a better hospital for her to have a thorough checkup.

Of course, she understood my point. I think she was also beginning to get worried. The illness was beginning to be more regular.

Sometime back, she had been diagnosed with high blood pressure and her doctor had begun to notice signs of diabetes, which would be a new mix in her cycle of illness.

Although we could not do it immediately, the checkup had been put on the cards and would be done as soon as the lockdown had been lifted.

At around 9am, I drove her to the clinic. She had been instructed to return to complete a malaria dose and also take measurements of her blood pressure.

After checking her in, we talked for about an hour before I proceeded to work.

We had agreed that she would keep me posted on how she was progressing. The doctor had estimated that her IV would be completed by around 1pm. She would then be allowed to rest up to until 3pm.

At around 4pm she called to tell me she was almost done.

However, she said she was feeling dizzy but was sure she would get home in good shape.

We agreed that she calls me the moment she gets home, which in my estimation was just 20 minutes away from the clinic.

Two hours passed and no call had come through. Anxiety kicked in. First, nothing seemed unusual but my mum was not that person who would promise to call and she doesn’t.

I called to her but the call went unanswered. After close to 30 minutes, I called again. Still no response.

This was very unusual. Hajat was so fond of her phone. She would never stay away from it for that long.

It was now getting scarier and confusing. I had only spoken to Hajati just hours earlier.

I had planned to leave office at around 6:30pm but there was no way I would go home amid such uncertainty.

I contemplated many things but concluded it was better I stayed around town since it would be easier to get transport if I needed to return to Namasuba.

Darkness had now kicked in and it was now curfew time. Roadblocks had been mounted almost in every corner of Kampala, which meant it would be extremely hard for me to maneuver to Namasuba.

As my fallback plan, I had already contacted one of the company drivers, who I had befriended, and requested that he gives me a lift to Namasuba. But that would only be possible after he had dropped off all workers on his schedule.

Bosco, whose other name I have never known since, had been hired by the company on a temporary basis to chauffeur staff during the lockdown.

At around 7:30pm after making several calls on both my mum’s phone and other people at home, Hawah, one of my cousins who had lived with and looked after my mother for years, received the call and informed me that mum had collapsed in the bathroom.

She sounded scared and distressed. Mum had collapsed as she tried to take a shower after returning from the clinic. Hawah had only found out about an hour later.

It was a difficult time but we fortunately secured an ambulance within or about 20 minutes.

I contacted the company driver who I had earlier told of my dilemma and within 20 minutes or so we were in Namasuba, with the ambulance not far behind us. The ambulance evacuated mum to Nsambya hospital, where she received emergency treatment, which stabilised her condition.

She was now out of danger and able to talk but was not sure how she had ended up in hospital.

It was my first time to see mum in a hospital. I had only seen her in clinics, where she would be admitted for just some hours.

But here we were in the emergency area, with doctors, though after making several demands, doing everything possible to stabilise her condition.

We had spent close to an hour in the emergency area after which she was admitted on a Saturday night.

However, on Sunday, we requested, on the advice of family and friend doctors, to be released to check into a specialised hospital.

The late Hadijah Nakitende with her nephew Ramathan Ggoobi, the Permanent Secretary Ministry of Finance, and her auntie Hajjat Madinah Mugalu at her son's Kuhingira ceremony in Isingiro.

The late Hadijah Nakitende with her nephew Ramathan Ggoobi, the Permanent Secretary Ministry of Finance, and her auntie Hajjat Madinah Mugalu at her son’s Kuhingira ceremony in Isingiro.

The sickness and unending tests

Nakitende had now been stabilised with the pain managed.

However, some family members were concerned that she had been admitted in a hospital where she was not receiving adequate care.

At about 3pm we had been released from Nsambya from where we proceeded to Mulago Specialised Women’s and Neonatal Hospital, where she was admitted on the same day.

Unlike in Nsambya, it was a wholly different experience at the Women Specialised and Maternal Hospital.

Everything seemed to have a known process and money wasn’t a choice language as it had seemed at Nsambya.

For the first time, I had come face to face with claims that I had only read in newspapers and social media.

It was surprising and at the same time annoying that at Nsambya, the hospital seemed to care more about money than saving a life.

We had arrived at Nsambya when my mum was extremely weak. But doctors had refused to touch her, demanding that we first pay at least Shs200,000 for emergency treatment and eventual admission.

We had no cash at hand but had at least Shs1m on mobile money. But unknown to us the hospital only accepted cash or payment through debit or credit cards.

Our pleas yielded nothing and for close to 30 minutes, we could only look on as we frantically searched for a solution.

Fortunately, I had carried my credit card, which out of luck had credit, which I had not been aware of.

I had accidentally stumbled on a miracle that the card delivered in the cold night.

It took me less than 30 minutes to complete the process after doctors started getting attention in addition to the emergency treatment. payments at the accounts section and returned to the emergency area.

I wondered how a hospital of Nsambya’s stature would conduct itself in such a manner.

We were eventually admitted after almost two hours. However, mum still complained of pain.

Throughout the night, the doctors had done so little to understand the origin of the pain. It was frustrating.

So, by morning we had made up our minds to check out of the hospital.

The doctors on duty seemed not to understand, or cared so little to find out the source of the pain.

In fact, the best we had been offered was a pile of pain killers that would be changed every time the ones that had been suggested earlier would fail to take away the pain.

The only logical way forward was to leave for another place.

Mum had already indicated that we leave but somehow I feared we were rushing through the process. It didn’t take me much longer to change my mind.

At the Mulago Specialised Women’s and Neonatal Hospital, the feeling was totally different.

The extent of care dwarfed everything I had seen at Nsambya. For once, I felt we were in safe hands and fully understood why mum had insisted that we leave Nsambya.

In fact, in all her life, even with its problems that are broadcast every day, she had always insisted that in the event that she ever gets in a state where she was no longer able to take decisions, Mulago would always be the first choice hospital.

We had chosen Nsambya because it was the nearest and in her state, she had needed emergency treatment.

For almost a week, we were admitted at Mulago Specialised Women’s and Neonatal Hospital. It is here that mum, for the first time in days, looked her old self even as she seemed weak.

On the fifth day, we were released to go home as we waited for results from tests that we had done both within and outside the hospital.

Between May and June 2020, mum had been subjected to various hospital visits, mostly to carry out tests.

She would be in hospital at least twice every week.

Everything that the doctors suspected had been checked, and almost all had returned negative.

However, one test was pending. Doctors at the Uganda Cancer Institute had instructed us to conduct a blood test and biopsy, whose results we had not yet received.

At the Mulago Specialised Women’s and Neonatal Hospital we had been referred to Uganda Cancer Institute to do some tests.

However, we had to do the tests at Nsambya Hospital, where the specialist had been stationed at the time it had been prescribed.

The practice had been to move from facility to another to do tests.

Therefore, we had to wait a little before all the test results would come through.

However, many of us, including my mum, were anxious to find out what was wrong in the hope that a solution would then be found.

After close to three weeks, we finally received the results from Nsambya Hospital.

However, they would be interpreted at Uganda Cancer Institute.

We quickly secured an appointment with the doctor at the Uganda Cancer Institute.

Whereas we could read the wording of the results, we couldn’t decipher what they connoted.

We ‘asked’ Google and got an inkling that the tests had returned with no trace of malignant tissues, which suggested she was cancer free. Cancer had been our biggest fear.

This was around July 2020 after the Covid-19 lockdown had been relaxed.

On the day of the appointment, I had left Namugongo, where I live, at around 5:30am. By 6am, I had reached Namasuba to pick up mum. The doctor had instructed us to be at Uganda Cancer Institute by 7am. We were there slightly before that.

A few minutes after 7am, mum had already seen the doctor but we had been told to wait until 9am for a better assessment.

We were recalled at around 9:30 but the doctor seemed to have other ideas.

She insisted there was every sign of a larger problem than what the results had returned.

Mum had, as a result of fibroids, developed a puffed up tummy in which litres of a fluids had lodged.

Therefore, the doctor had instructed that we conduct a biopsy that would include testing the liquid and body tissues.

The body tissue had been tested but not the fluids.

Therefore, the doctor wondered why.

At Nsambya, the fluid had been drained out but no test had been conducted on it.

Therefore, the doctor requested that we pick the samples from Nsambya for further testing at the Uganda Cancer Institute.

After waiting for close by three weeks, the results entered, confirming our worst fears.

The late Hadijah Nakitende at her son's Kuhingira ceremony in Isingiro, western Uganda, in December 2019

The late Hadijah Nakitende at her son’s Kuhingira ceremony in Isingiro, western Uganda, in December 2019

Dealing with cancer

Mum looked shaken at first but she eventually gained courage. It strengthened us all.

It was a sad moment for friends and family, but we were strengthened by the hope that the cancer that had been discovered in her body was still in its early stages.

The doctor, under the midday hit, had gathered myself, my cousin who is a doctor, and my mum, to break the sad news.

It was scary, but this would be the beginning of a long, expensive and stressful journey.

We had been reassured that the ovarian cancer that she had been diagnosed with was treatable.

In August 2020, mum was enrolled on treatment and soon was put on chemotherapy.

The treatment progressed well through the initial sessions, save for occasional episodes of weakness, especially in October 2020 when the side effects had started to manifest.

Around then, she had lost hair, finger and toe nails, and the surface of her palms and feet had started to darken.

We had already been warned of worse side effects than what we were seeing, so, we kept strong and hopeful.

I had returned to work, having exhausted my 30-day leave that I had taken.

Mum was then mainly under the care of one of my cousins and her longtime family and personal friend, who had volunteered to take her to hospital on appointments and whenever there was need.

She had reacted well to the treatment. Indeed at some point, we had been emboldened to believe she was beating the cancer.

It had been almost three months since she had been enrolled on chemotherapy

By December 2020, the doctors were satisfied that Nakitende had fully stabilised.

An operation to remove the fibroids, which had earlier been put on hold to first build back her body strength, was now brought back on the cards. The doctors felt that her recovery would be significantly helped by the removal of the fibroids.

Indeed on December 13, 2020 she was operated on at the Mulago Specialised Women’s and Neonatal Hospital.

The operation was successful and we were released from the hospital after three days.

However, mum had been experiencing a heavy dose of vomiting that we were told would disappear after a few days. It went on for close to a week, before it slowly disappeared.

Of course, the operation meant that mum would no longer be worried of the fluids that would lodge into her stomach.

Between July and December 2020, doctors had thrice drained a watery substance from her stomach. On each of the three occasions,  close to four litres would be drained out of her stomach.

The operation was the only way to rid her of water retention.

The operation had also removed the uterus and ovaries since they had partly become cancerous.

By January 2021, she had fully stabilised and her wounds had healed.

Therefore, she had been told she world return to her treatment routines that would spread through the remaining part of January and February before a review.

She had so far completed two sessions of six rounds of chemo that would be administered every after three weeks.

Therefore, a review to ascertain the progress thus far was necessary.

Sudden twist

Mum had been coping well. It had been close to a year since she had been enrolled on chemo and her progress had been remarkable. Doctors and family had been given that assurance that suggested she would pull through.

She had gone through a review around April 2021 after fully recovering from the operation in December.

In fact, she had looked so fine that many people, including friends and family, save for a few of us who knew she was on medication, could tell she wasn’t fully healthy.

At the close of April, she actively participated in a give-away ceremony of one of her brother’s daughters in Butambala.

The give-away had come before the review results would be released.

A week after the ceremony, she returned to Uganda Cancer Institute but was told to wait for another week.

The results were finally released, and they indicated good progress.

However, she had to continue with the chemo – albeit a different type from what she had been taking.

In mid-May, as a routine, she had to conduct a CBC (complete blood count) to confirm that she was ready for the new session of treatment.

This would usually come three days to the chemo appointment, and this time fell on a Friday.

By 8am, she had already reached the Uganda Cancer Institute, where a number of checks were conducted.

It had become a routine that she was now used to. Sometimes she would even conduct the checks as she waited for the doctor.

By around 3pm, she had completed her first dose. It was the first since the review.

However, the medicine this time round gave her a pounding headache that would go on for days.

It was unusual but we held on to the hope that the headache was because her body was adjusting to the new drugs.

But it went on for days, before she developed boils on her back and other body parts. However, doctors had assured us these would heal with some little treatment.

What worried us, however, was her continuous loss of energy. In all her sickness, mum had been a strong-willed person. She would juggle house chores and office work at home.

Since the first lockdown in March 2020, she had not returned to office. She had kept working from home, where she coordinated work at Sunrise newspaper as she underwent treatment.

The boils had hit her hard and it looked as though she had been burnt with water. This was the wrong type of chemo, we thought.

Three weeks had gone by, which meant she was due for another session of chemo.

The doctors advised that she could not take the medication because of the state she was in.

Therefore, we had to wait. This was June 2021. Mum was unrecognizably weaker. Our anxiety levels flew through the roof.

The headache, despite various prescriptions and pain killers, had instead worsened, taking with it all her appetite.

We debated about taking her for hospitalisation but we were advised against the idea. Covid-19 was at the peak.

Doctor Najib Bogere, a cousin who I reference earlier, had been with her throughout her treatment journey, therefore he had taken responsibility to treat her from home.

Just like other doctors, he feared there was too much Covid-19 and any exposure would be disastrous.

In fact, in advising against the idea, he had said that they had lost more patients at Uganda Cancer Institute to Covid-19 than usual.

Even when we thought mum needed a hospital environment, we had no alternative but to hope that she would get sufficient treatment from home.

However, she would get weaker every day. It was visible that life was progressively fleeing her body.

The government had declared a second lockdown and movement – even to buy drugs – was hard.

This is when my work as a journalist, which gave me a license to move about, came in handy.

Every now and again, I would spare a thought for people in a similar situation for whom travel was a lot more complicated.

For three long weeks, mum was eating so little and her energies had completed waned. It was draining seeing her slide every day to new lows. Our hope was now hanging by the thread.

A moment of scare

I had spent the weekend in Namasuba as it had become a routine for me to sleep away from home. However, I would often return to pick clothes and also freshen up.

I had left Namasuba on Monday morning. Mum was not in a good shape. She had slid into a state of permanent sleep. She could neither talk nor open her eyes.

When I reached home in Namugongo, I freshened up with the hope that I would rest from the previous night’s tiredness.

We would take turns to be around her just in case. It had been my turn the previous night so I had barely slept.

After I had freshened up, I slept with the hope that I would wake up and return to Namasuba.

At around 2pm, I was woken up by a call. It was my cousin telling me that mum’s state had worsened. I rushed through and within an hour I was in Namasuba. Traffic was very light due to the lockdown.

I briefed Dr Bogere about mum’s worrying state and again asked him about the possibility of taking her to hospital, which he again turned down.

Covid-19 had worsened and about two days earlier, close to 30 people had been reported to have died in Mulago Hospital at a go. Perhaps that could have been part of the reasons why Dr Bogere and others we reluctant to have mum admitted.

Instead, he prescribed some medicines and instructed us to give her more water through the IV.

We had hired a live-in nurse to look after mum and Dr Bogere would pass by at least once a day. The nurse would administer prescribed medicines and take measurements of her temperature, sugar and pressure levels every six hours.

Mum had previously been diagnosed with high blood pressure, hence the need for constant monitoring.

On that particular evening, the nurse did as she was instructed. But mum stopped breathing and her feet had started to get cold, throwing us into panic. We called in whoever would support us through the inevitable but after almost an hour she stabilised and started breathing again.

Before this, a physician had earlier conducted some checks and confirmed that mum’s nervous system had been damaged. He spoke of the need restore her nerves, which doctors were now attempting.

Her body, we had been told, had rejected the new medicine, which as a result presented serious damage to some of her internal organs. She had not recovered from that state of permanent sleep.

Apart from growing progressively weaker, mum could barely eat. The best she could do was half a cup of milk. She had not taken any solid foods in days.

On June 20, 2021, we drove her to Kiruddu hospital to do a head scan. Dr Bogere had suspected that her brain had been damaged, and that this was the reason why she was no longer responding to anything.

It took about three hours for the scan to be completed. We returned her home with the hope that we would return to Kiruddu to get the results and search for a solution.

The last three weeks had been challenging. It was the first time in over a month that mum was leaving the house. Even if she seemed not to know what was happening, it was refreshing for us around her.

But it also made me realise how weak she had got. She could barely lift any of her body parts. Someone would have to hold her neck to keep it in one position. It was frustrating and sad. She was losing a part of her life every day, and dying slowly.

I dropped her back home and I drove to office to continue with work. It had been difficult for me to concentrate.

Sunday and Monday are my days off work, but since I had barely worked on Saturday, I had to return on Sunday to complete work.

I finished work a bit late to drive back to Namasuba. So, I drove home in the hope that I would wake up early in the morning and pick up the results from Kiruddu. This was never to be.

Around 6:30am on June 21, 2021, my cousin called. She sounded so urgent. “Senga (auntie) is not well,” she told me.

I did not ask he anything. I woke up and quickly organised myself to leave. I left with my wife.

The night had been unusual. I was so restless. I had little strength left in me. I was feeling sad as I drove to get to Namasuba. Mum had been growing weak everyday but I had held onto hope. It was difficult to given to the thought that we could lose her.

I had earlier asked my cousin to call Dr Bogere. I hoped he would get there ahead of me because he lived nearer.

I picked up an auntie who had pitched camp at mum’s house through most of her sickness.

But as we neared home, a call came through delivering my worst fear. Mum had passed on.

Dr Bogere had, as I had hoped, got to home before me. He said mum could have died earlier in the night but because we had become used to her being in that permanent state of sleep, people at home could not tell.

A cancer treatment story that had three months earlier filled us with renewed hope had ground to a halt.

The thought that lingers in my head is that that last dose of chemotherapy was the wrong one.

I played back in my mind the day mum had told me she had wanted to delay that last dose – she said this when her terminal slide had just started. She said her gut told her something she could not put a finger to.

We had hoped for a much longer fight, one we would hopefully win. The lockdown made the fight a lot harder.

We laid her to rest at Ngeribalya, Gomba District, on June 21, 2020.

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