- Creating awareness. Daily Monitor will for October run stories on cancer to empathise with those affected, celebrate with those who have beaten the scourge and also create awareness. Today, Moses Muwulya shares the bitterly learnt lessons during his daughter’s agonising battle against the cancer that nipped her life in the bud.
It is always joy when parents expect and finally get a baby. While this was the case after God blessed us with a baby girl on March 10, 2013, our joy barely lasted for two hours.
It was replaced with worry, tension and anxiety after the baby refused to breastfeed. Her kind of deformed gum was too big to allow the nipple enter her mouth to allow her suckle. We came to realise that she did not even cry upon delivery.
Her hands, legs and skin were wrinkled. The midwife who had seen my wife through labour, despite her seniority, could hardly avail answers.
Her weak neck could turn to any direction. But I was certain that this was common among infants although it did not change after months.
This whole situation kicked off a journey of worries, nights in hospitals, visiting shrines and elderly women in the village to save the life of the baby.
We were totally ignorant about what was disturbing Claire Kisakye Nabuuma, whom we had nicknamed ‘Ka-sweet’, because of the pain she was going through that saw whoever felt pity for her to say Ka-sweet nga kalabye n’obulumi! (it’s a pity for this sweet baby to go through this pain).
In hospitals, medics could abuse us for failing to breastfeed the baby, because to them, she looked overly malnourished.
“Gwe sebo! (You man!) It seems your wife doesn’t want to breastfeed for fear of her breasts losing shape,” a nurse at Masaka hospital told me.
Yet right from birth, the Ka-sweet had refused to suckle nor take anything nutritious like we had been advised.
The hospital tried feeding her through a nasogastric tube but it did not change much.
Heading to Mulago
When went to Mulago National Referral Hospital, pediatricians could still not get a definite diagnosis.
Someone who claimed to be a ‘nurse’ told us (in confidence) about her friend who was a medical student but turned into a witchdoctor after what she called ‘family spirits’ stopped him from continuing with his studies.
“Olwo lumbe luganda (that is a traditional sickness), your daughter could be being disturbed by a spiritual-related disease. That is why doctors have failed to tell what is disturbing her. You go to him (witchdoctor), he will heal her,” she said. Desperate as we were, we religiously bowed to her idea.
At the shrine in the suburbs of Kampala, the witchdoctor said: “I know where the problem is but I will not tell you. Let us just focus on treating the baby,” he confidently tells us amid total darkens in the shrine. He gave us some charms for drinking and bathing the baby. But nothing changed.
Resorting to city pastors
A female pastor from a Kampala Pentecostal church looked at her and told us the name Nabuuma, which my father had given her, belonged to a great grandmother who was ill hearted and she was the one haunting her.
She told us to drop the name, gave us olive oil and salt that we had to smear her with and pour the salt in the house to chase the spirit. We dropped the name, smeared her with olive oil and poured salt in the house but she instead got worse.
Knowing she had cancer
In Feb 2015, she lost her sight and was taken to Mengo eye hospital where we were shocked to learn that had retinoblastoma (eye cancer) and could have contracted it before birth.
We were referred to Ruharo Eye Centre in Mbarara for treatment, but we were warned that the baby could have her eyes removed to stop the cancer from spreading.
And indeed this is what the experts at Ruharo told us, but told us they could not carry out the surgery because she was underweight. During this period, I developed low blood pressure and one time fainted at the health facility.
Struggle to see her gain weight
She could gain weight, but get convulsions which could make her lose it and retard her growth.
In May, her health deteriorated and was taken to Uganda Cancer Institute, where they told us that her cancer had progressed to the spinal cord, a reason she would convulse. And after several months at UCI, we were discharged in early September 2015, and the discharge letter was shocking.
It read: “She cannot be started on treatment and chemotherapy will just bring her more pain. It is better she dies without such pain.”
On September 29, 2015, barely a week after discharge, our Ka-sweet breathed her last.
I believe with no doubt that this experience was an invitation to take stock and re-examine my spiritual life and rediscover my wife.
After failing with witchdoctors, I moved close to God. I later changed prayers and asked Him not to take away the problem, but to let me to know what he meant in this. This was my turning point.
By the time she passed on, I had already grown strong in faith. In fact on the day she died, I heard God the day before to take her.
Deep in sorrow, I told God that it was not because I was tired of my little angel, but I am tired of seeing her in this pain and if He could take her and relieve her of the pain, I would not complain.
My specialisation in health reporting was started by my daughter. I felt I had to write about health to have my audience informed as well as advocate for better healthcare, especially when it comes to diseases such as cancer.
Call it far-fetched but my daughter made me realise that my wife really loved me because no matter what we went through, this woman was there for me. I started treasuring her more than before for few women could do what she did, maybe even few men.
Because she could get worse any time, this meant having some money readily available, the spirit of saving started because we wanted to get ourselves ready for any uncertainty.
After her death, the lessons of saving gained roots. I can say I have saved six-digit amounts, it may appear small but from how we started, we have moved a step forward. The lessons have since made me live a meaningful life.
In fact, despite the intense pain my daughter braved, sometimes I wish that she lived a bit longer to teach me more lessons.
About eye cancer
According to American cancer society, two types of cancers can be found in the eye.
Primary intraocular cancers start inside the eyeball. In adults, melanoma is the most common primary intraocular cancer, followed by primary intraocular lymphoma. These 2 cancers are the focus of this document.
In children, retinoblastoma (a cancer that starts in cells in the retina) is the most common primary intraocular cancer, and medulloepithelioma is the next most common (but is still extremely rare). These childhood cancers are discussed in Retinoblastoma.
Secondary intraocular cancers start somewhere else in the body and then spread to the eye. These are not truly “eye cancers,” but they are actually more common than primary intraocular cancers. The most common cancers that spread to the eye are breast and lung cancers. Most often these cancers spread to the part of the eyeball called the uvea. For more information on these types of cancers, see our documents on them.
Where to find help
UMC Victoria Hospital: Free breast cancer screening at the hospital and UMC Entebbe clinic, free specialist/ doctor consultation and discount on extra investigations such as ultra-sound /biopsy if required.
Nakasero Hospital: Breast cancer awareness presentation twice every week for October, free clinical breast examination following the presentation, free mammography services following the breast exam for those that require it and all the above will require booking to ensure good planning for each day.
AAR: All AAR clinics (Makerere Health Centre, Bweyogerere Health Centre, Bweyogerere Health Centre – annex, Kabalagala Health Centre, Bugolobi Health Centre, City Health Centre, Entebbe clinic, Ntinda Health Centre, Acacia Health Centre, Mukono Health Centre, Natete Health Centre and Gulu Health Centre) will provide free breast cancer examination and V/A screening at a subsidised price of Shs10,000.