Q. Udie, how did this journey begin?
A. In 1987 I was a fourth year student at the University of Zambia studying Public Administration when I first noticed the lump on the right side of my neck which my friends and I called the ‘side goiter’. I did nothing about it, the following year I went to work for the Ministry of Foreign Affairs.
My late sister a nurse at UTH arranged for my lump to be inspected, it was November 1988 a biopsy was scheduled for February 1989. In December I caught a cold from a colleague at work and it settled on my lump I was in so much agony, such that early January I went back to UTH to insist on the biopsy.
Well at that time AIDS was the new word on everyone’s lips and I remember that an East European doctor that attended to me shook his head and suspected that I had AIDS before even testing me. After going a biopsy the surgeons diagnosed me with TB of the lymph nodes and started me on treatment. A few days later the pathologists report declared that I had Hodgkin’s lymphoma and not TB. This led to a followed a second biopsy which confirmed that I had the disease and it was at stage II B because by then the lumps were on both sides of my neck. The HIV test was negative.
My first question to the surgeon was if the disease was terminal. I was advised that at 23 years old I was a good candidate for treatment coupled with the fact that it had been diagnosed early. I needed to go to Zimbabwe for a scan that was unavailable at UTH then, here again the Hodgkin’s Lymphoma Stage II B was confirmed. The next few months at UTH up to July 1989 I was on chemotherapy by drip and some oral.
In August that year I went to Germany to work for the embassy there, in September I went through to the hospital there where they started from scratch with now my 3rd biopsy, a liver biopsy and a lumbar puncture (my second) they too confirmed the cancer and advised that my spleen be removed to avoid return of the cancer, which i went ahead and did.
For six weeks I was in hospital under going tests, with treatment commencing after that, Over a period of 6 months I received chemotherapy. I would have a drip one week , then rest the following week then the next intravenous treatment. In May 1990 I went through a month of radiation and checking for any enlarged lymph nodes,.At the end of May 1990 I was given the all clear. In 1995 I was transferred to the UK were I would have CAT scans regularly, I was wary of them as I feared exposure to the rays.
In 2000, I was recalled to Zambia and after 11 years in the foreign service I needed time off to rediscover or reinvent myself so I left the ministry.
Q. Is this when the Zambian Cancer Society was birthed?
A. Sort of, I was asking myself questions like why am I alive?
The birthing was initially an idea that I wanted to work for an organisation working around cancer issues. I was targeting the USA as I was born there. Then a friend suggested forming my own cancer organisation right here in Zambia. The thought overwhelmed me, I was touched by what she had said so I went home and prayed. “ Lord, if you want me to form this organisation give me a sign.”
Three days later at my brother’s place I was going through the newspapers when on the front page of the Daily Mail was a headline that said something like ‘ Cancer patients need your help’ . If I can recall, This article was about the Zambia Cancer Foundation Leukemia Trust their Chairperson Professor Chintu was handing over drugs to UTH.
Professor Chintu had seen me in the early days of my cancer diagnosis, and I went looking for him at UTH, I didn’t find him but left a note and forgot about it. About two weeks later he called and we caught up on news of my treatment etc, and I joined the Leukemia Fund as a volunteer in 2001. Essentially we would raise funds for to purchase chemotherapy drugs during my time with them we did some fund raising, one major event was in partnership with the LIONS club of Munali a dinner that I was excited to initiate and organise called “Bail For Good”
Throughout all this the feeling of something else more for me didn’t go away, and during my research, I decided I needed training in non profit management with an emphasis on cancer because, I thought I would set up a resource centre. I had discovered initially a training opportunity in Australia but I wasn’t eligible, then I discovered the American Cancer Society University ASCU who offered training in NGO management fully paid for, I applied in February 2004 and a month later they got in touch and said they would inform me when the next training would be. Informed me I would be on their database. It wasn’t until a year later 2005 that they got back to me informing me of the next ACSU training opportunity and the World Cancer Congress in Washington July 2006. Well I went and I was the first Zambian to be trained by them. I did a poster presentation entitled “ Women in the Know”.
The following year I knew it was time to create the Zambian Cancer Society and we begun with a website for local information.
Q. May I ask how were you surviving financially since quitting you job 2001? And how did you fund ZCS.
A. I ran a guest house from my home, then later I set up iCapital with my brother, a private equity and investment firm. Then, whether this is right or not I set up ZCS with my tithe – 10% of my salary. That way the organisation is guaranteed a regular income to meet expenses. Later iCapital became the corporate sponsor for ZCS, and now partners like the FaithWorks Network are coming on board.
Q. Now where are you today as ZCS?
A Well, on the 1st April 2009 we re-launched ZCS and extended beyond the online presence to an office with one fulltime staff Idah Chunga. We are situated at the iCapital offices, so essentially ZCS piggyback’s on a commercial enterprise allowing ZCS to have access to communications, space etc. It’s not really practical in a commercial set up to have in-house programmes so the emphasis is on outreach under our program called Project Hope.
Our current activities include:
Cancer Information Service – Our website provides a platform to provide information, fundraise and offer a link to further resources about cancer.
Cervical Cancer Awareness – In partnership with the Center For Infectious Disease Research in Zambia (CIDRZ) we are carrying out a number of sensitisation campaigns.
Female Cancer Survivor Peer Support Group – This support group is targeted at women aged between 35 and 49 to share information, experiences and support one another.
Hospital Visiting Service – Commenced in May, this service includes the monthly provision of 30 “Baskets of Hope” containing essential toiletries to female cancer patients in ward B21 at the University Teaching Hospital.
The Society intends to scale up its activities and improve access to cancer treatment (treatment is usually over several months) for out-patients at the Cancer Diseases Hospital in Lusaka (the only cancer hospital in the country) by establishing Nyumba Yatu: a “bridge” between hospital and home.
Aims of Nyumba Yatu:
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Offer cancer out-patients low cost accommodation.
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Provide transportation to and from Lusaka in partnership with intercity transport providers.
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Give patients moral support.
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Facilitate access to cancer drugs in collaboration with distributors.
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Help patients and their families with administrative procedures related to health care and/or the consequences of the disease.
We envisage opening the facility during the second half of 2010.
Other initiatives in the pipeline are:
Transport to and from Lusaka/ UTH – Cancer Diseases Hospital – hence Transport Hope where we hope to get the inter city coach companies as partners in ferrying patients to and from treatment who are fit to travel, so far we are working the modalities out with one prominent transport provider.
Access to treatment drugs, when UTH runs out of the free stock patients are given prescriptions to fill from chemists. Cost of treatment can cost from as much as K350,000 to K8 million a month, and some patients will need the drugs for the rest of their lives. Well we are in discussion with a distributor who if we can find a corporate sponsor to subsidise the cost we would want the treatment drugs to cost no more than K100,000.
These are our focus, later this year in November we hold a dinner to get the initial funds to get our projects off the ground.
Q. Wow! That’s a big challenge ahead. Tell me from the initial prayer for God to reveal his purpose to you where are you now in your faith.
A. To be honest, I wasn’t particularly spirit filled or religious when I prayed that initial prayer I just did it because I didn’t know what else to do. Then all throughout my time with the Leukemia Fund – my question was why does this feeling/thing not go away, since I am serving in such an organisation, by 2009 I had run out of reasons and ZCS was up and fully running. Now my conversations with God , well I am amused at how he just works things out. I would say after all these things I have gained a depth in God that sustains me and my purpose now.
Q. Which biblical character or characters do you identify with?
A. Primarily Gideon in the book of Judges, his hesitancy, God wanting to show him His glory and allowing God to use him. He thought it was about the size of the army but God showed him different.
Then Joseph – because I also have dreams to guide me, they are symbolic. Also that it takes time to go through the valley where God meets you.
Q. So I am curious, what’s up with your single status, is it by choice?
A. No, just hasn’t happened, in fact about 2 years ago I was actively waiting on Mr. Right, because I thought I needed him to get ZCS off the ground, well now that ZCS is here without Mr. Right and I am finding that I am fully distracted with ZCS.
Q. Any last thoughts or words for our network?
A. I want to leave a legacy behind, not just to my family and friends but in the history books for future generations. The history books are full of the good guys and bad guys, I think that they could make space for me too.
