His love life wrecked by breast cancer

Paul Kintu lost a wife to breast cancer. He later found love again but his second wife was also diagnosed with breast cancer. He shares with Edgar R. Batte his story that motivated him to start Cancer Support-Uganda, an organisation that provides information and advocates for treatment and care of cancer patients.

How did it all begin?
My first wife, Irene Kobuyangye was diagnosed with cancer in 2005 and battled the disease for about three years. Unfortunately, she joined the Lord in April, 2008. Within the same year, I managed to find love with another lady, Sophie Asiimwe, my current wife. Shortly after our wedding on April 25, in 2009, Sophie started feeling sick in August. It all started with a cough and by the end of 2009, doctors had confirmed that it was cancer in the lungs; it had started in the breasts and spread to the lungs. Actually, it is cancer of the breast but had very fast spread into the lungs. Last week, she returned from the healing school in South Africa and she’s at home undergoing second-line chemotherapy.

How have you managed to deal with this?
I really can’t tell how God has arranged this but it has been coincidental. Sophie’s cancer had already gone to stage four.

What does it mean for one to be at stage four?
When doctors are taking tests for cancer, they do what they call staging; so there are stages one, two, three and four. Stage four is actually the last stage before you get to the terminal end of the disease.

Is cancer of the breast treatable and what are the warning signs?
All cancers are treatable, specifically cancer of the breast, if you detect it early. Once you seek medical attention early, you can increase your chances of survival. One of the major things we encourage ladies or mothers today is to do regular Breast Self Examination. This is very important and it’s easily done when they are alone in their bathrooms; after putting soap on the breast, you can feel if there are some lumps (any swelling or unusual hardness in the breast). Normally, in the beginning they are painless.

How big can the lump be in the beginning?
It’s normally the size of a bean but along the way, it keeps expanding and by the time you feel pain, it has almost expanded throughout the breast.

When and how did your first wife know that she was suffering from breast cancer?

By that time, we were living in the UK. In 2005, we decided to come back to Uganda because we considered home a better option. Two weeks before we returned, Irene was in the bathroom and she felt a swelling in the breast. The next day, we went to see our doctor but he didn’t pay serious attention to it. Irene and I didn’t think this swelling had something to do with cancer so we took it lightly, returned to Uganda and at that time, she was also pregnant with our second born.
While in Uganda, we began seeing a gynaecologist who advised her to go through her pregnancy and then we would consider the swelling in the breast after. By July 2006, when she was about to give birth, the swelling had occupied the breast and had stretched as far as the armpit area, so as soon as she gave birth, we went to the breast clinic at Mulago Hospital and it was confirmed that it was cancer of the breast and the doctor took us through a treatment plan which involved surgery (which would mean cutting off the breast) and then chemotherapy, radiation and homonetherapy.

What was going on in your mind all this time?
I had never actually imagined that someone would survive without a breast, so it shocked me and I didn’t want to believe the doctor. So, that evening, I called a family meeting together with Irene’s brothers and sisters and they too couldn’t believe that someone could actually live without a breast. So immediately, we contacted some friends who are doctors in South Africa and asked if we could send them a sample of the swelling and they agreed. So we went to Mulago and did a biopsy (the removal for diagnostic study of a piece of tissue from a living body) which we sent to South Africa. Within three days, it was confirmed that it was cancer of the breast but the same treatment plan the doctor had given us at Mulago Hospital is what the doctors in South Africa actually recommended. We had to start the treatment because it was urgent and immediately, she went into surgery and into first line chemotherapy. After that, she went through radiation and hormonotherapy (tablets she was to take daily for at least five years).

Did she ever show signs of improvement?
No, actually one year later, the disease reoccurred in the bones; she started feeling pain in the bones and became very restless. She also told me that she had a problem around her brain and often experienced periods of forgetfulness. She was feeling tired. So we travelled to South Africa to test it and it was proved that it was cancer that had reoccurred in the bones so the solution was for her to start on second-line treatment. This is a very expensive regiment and we were buying each cycle at Shs3m and she needed eight so we needed to raise Shs24m for her to start on the treatment but we had just done chemotherapy and all our accounts were depleted. I had just got into a job with Save the Children-Uganda

So how did you manage to raise this money?
Luckily, Save the Children raised some money for me and through my supervisor, we managed to find this drug in Nairobi and she started the treatment. At the end of this treatment, she improved and we decided to officialise our marriage in church in December 2007, and anyone who saw her at our wedding day couldn’t expect imagine that after the wedding, she would fall ill. She was very fine and jolly.
A month later, she fell ill and one thing led to the other until a point when the bones failed. Her backbone could no longer enable her to stand and we had to get her medication for the bones but the doctor said that to use the medication, her liver had to be working 100 per cent. However, on checking the liver, it was deteriorating every day so we planned for a liver transplant and the very weekend we planned her operation, the day the doctor left Nairobi to come and operate her here, is the day Irene actually passed away. We had done what we could and luckily, I had a good network of relatives and we had managed to come together and solve the problem.

Is this what motivated you to start Cancer Support-Uganda?
I realised many people went through the same problem but didn’t know where to find information. So around the same time, in November 2007, I started Cancer Support- Uganda (CASU) to address cancer issues. With Hope Ward at Kampala International Hospital, Train the Youth Effort- an NGO, and a representative from Mulago Hospital, we visited Parliament and raised awareness and that’s how we advocated for money to the cancer institute and the institute was given Shs4b. But when Irene passed on, I was demoralised and went a bit quiet.

How did you cope after this tragic loss? It was hard especially on the children because she had left me with children, one four and another two years but the younger one had not had a chance to breastfeed so she was very vulnerable to infections. At some point when Irene was in hospital, I had the baby also in the hospital; I had two patients in different hospitals at the same time. I thought to myself about how I was supposed to look after this child and that’s one of the things that made me think that the earlier I found someone who could raise the children, the better. Even on my side, I felt a very big gap; I was very bored with everything and the only thing that could keep me busy was work. Before long, I found someone and we became great friends and started dating.
How long after Irene died did you start dating?
About three months and because we were both born again we found ourselves in church activities all the time. So we started dating and she came into my life at a time when I needed someone. She was not only beautiful but also loved the children too and this was a big plus. The children found motherhood in her and shortly, they managed to forget about the previous incidents.

You had just lost a wife to cancer and you found yourself with another case of your new found love too affected by the same illness, how did you take it in? In just thought to myself how this could have happened because it was not like anyone had recommended me to meet Sophie. It felt it was inappropriate for me to leave her at that point because she needed support and I thought she needed me since I had just been in this type of scenario. Plus, I was looking at her beauty, discipline and her contact with the children. She was different from other women. Actually, when she accepted my marriage proposal, she told me she had a painful breast and having just been in the same situation, I suggested we see a doctor the next day. That’s when she was diagnosed with breast cancer.

What’s your advice on cancer treatment?
Cancer of the breast is treatable if you can detect it early. I actually have two cases of people that I know who earlier detected it almost at the same time when Irene, my first wife detected hers and today, they are very strong and have cured from it. Ladies are advised to have that mammogram test at least once every year. But then, there are also people who have hereditary problems of cancer if their mothers or grandmothers have passed away because of cancer especially breast cancer.

Having had two patients, what does it mean for someone to be on chemotherapy?
Physically, you need to be very strong and then you need to offer spiritual and emotional support as well as a proper diet of mostly fruit and vegetables/plant products in large quantities. They need to drink a lot because the treatment dehydrates and causes nausea and loss of appetite. It breaks the body system which makes the patient vulnerable to other infections. But once they get the necessary support, patients can live longer.

How about cervical cancer, is it also treatable?
It is treatable if detected early and right now, there is a prevention programme which is being run by Programme for Appropriate Technology for Health (PATH); they are running a cervical cancer vaccination programme and I really want to encourage people to vaccinate.

Which are the commonest cancers here?
Cervical cancer, breast cancer and Kaposi’s sarcoma.

Cancer Support-Uganda quotes only 1,700 patients who can access chemotherapy out of an approximated 28,000 new cases of cancer reported in Uganda every year, what happens to the 26,300?
1,700 are mostly those working and are able to raise money for chemotherapy and the rest tend to seek other alternative methods of treatment like herbal treatment which sometimes doesn’t support them and at the end of the day their chances of survival are reduced.

What are some of the achievements the association has registered so far?
We visited MTN staff, St. Mary’s College, Kisubi and we have also managed to raise awareness among women groups in Jinja and Mpigi. We have raised money for Sophie who’s currently undergoing treatment. There are three patients; two are at International Hospital Kampala (IHK) and another at the Cancer Institute and we are also looking at raising money for them to get treatment

You’re organising a fundraising dinner for the treatment and care of cancer patients, what’s the bigger picture here? We want to raise money to subsidise treatment for at least 30 people on first line treatment and 10 people who are recommended for second line treatment.
How much is this kind of treatment?
First line treatment in Uganda costs about Shs350,000 per cycle and normally, a patient requires about six cycles which will go to Shs2.1m.

What other challenges are faced by cancer victims?
They need psycho-social support as well as physical support from their families. For second level treatment, the drug (Taxotere) is not even available in Uganda. You can get it from Nairobi and the cheapest you can get it at is Shs2m and it can only stay in refrigerated conditions so the easiest way to bring it is by air and it has to be refrigerated immediately until the patient is ready to take it, otherwise, the patient must go for treatment in Nairobi.

How can one be part of the fundraising dinner?
We have cards for singles which go for Shs50,000 and Shs95,000 for a couple. Corporate tables for five people go for one Shs1m. The event is Friday May 14, at Protea Hotel starting at 7p.m.

For more details, you can contact, Olyvia on 0312112195 or 0782199438.
Any financial assistance in the names of Cancer Support-Uganda can be deposited on Account No. 0102841016400 Standard Chatterd Bank, Gardern City Branch.
Mr Paul Kintu can be contacted on 0776320959