It’s been a while! Please take some time to read my post below.
History
In February, I was referred to a family who lives in a village close to Rukungiri town, by a friend who works at the local district. He told me that the family was in a bad situation (the mother was sick, the father a drunk, their 7 children not at school).
I visited them a couple of weeks later with Jonas and Muhumuza, my two colleagues. We did indeed find that the children were not doing so well, the mother Susan* (*I will not use her real name to protect her privacy on this public platform) was sick and the father is a drunk and rarely at home. Both parents are HIV+ but we are told the children negative.
Having heard that Susan had been sick (bleeding for months without ceasing) I decided to take her to a local hospital for further consultations. We went in March, and she was diagnosed with cysts and stage 1 cervical cancer. She was operated on in April for a full hysterectomy, to remove the cancer and other cysts, and she came home after a few days. The hysterectomy was funded through some money given to me by someone at church.
As far as I was concerned, it was over. However, she continued calling us to complain of bleeding and severe pain. We arranged to meet her, and when I went through all her hospital notes, I saw it said that the surgery had been aborted and they had just taken a biopsy. I got sooo confused, as all the nurses had told me the surgery had been successful, and I paid for it too!
I made an appointment to meet the head gynaecologist at the hospital. He explained that what they thought had been operable stage 1 cancer was in fact inoperable and untreatable stage 3-4 cervical cancer (the final stages). This meant that it had spread. He gave her a referral to UCI at Mulago Hospital in Kampala (Uganda Cancer Institute).
We continued to follow up with the hospital and spent considerable time trying to get answers for the confusion, which up to now have been pretty unsatisfactory.
Because of my lack of faith at the hospital in question, I decided to get a second opinion from a good friend and very experienced radiographer. He met Susan and did an ultrasound, and suggested that in his opinion, the cancer was more like stage 1-2 than stage 3-4. Again, he referred us for further consultations to meet a gynae at Kabale Regional Referral Hospital, which brings me up to yesterday.
Guys, this whole situation has been so tough and so confusing. Since I met Susan in February, I feel like we have been up and down, having tests, operations which did or didn’t happen, paying money for things which weren’t done, seeing endless doctors giving mixed messages. I have been helpless, angry, upset, confused. My life has been super busy this year, but barely a day has passed where Susan hasn’t been on my mind, just feeling powerless and not knowing what to do. Where is the NHS when we need it!?
Anyway, yesterday we travelled to Kabale Hospital where we saw a fantastic gynaecologist. He did an examination, and firstly credited the original hospital for not going ahead with the hysterectomy. He said the cervical cancer is at stage 2B+ – it has spread but not beyond attempts at treatment. He said that I should urgently consider taking Susan to the Uganda Cancer Institute to begin chemotherapy and radiotherapy to try to save her life. If the cancer shrinks, it may be possible to operate to remove it at a later date. (NB I am not saying these things as fact – I am not medical and have little knowledge – I am just repeating what I’ve been told!)
When the doctor told me this, I welled up. I had again, previously been told by a medical professional here, that chemo/radiotherapy was hugely expensive – the equivalent of over 10,000 pounds. I knew this would be practically impossible. However, the doctor was horrified and told me that no, chemotherapy is a free service (though very hard to access because there is only ONE HOSPITAL IN UGANDA which offers it. Can you even imagine?) but radiotherapy has some costs, as do tests, staying in hospital, food, lodgings for caregivers etc.
I came out of the hospital yesterday feeling like Susan’s life is in my hands. I imagined the two scenarios. If I do nothing, knowing that going to UCI may be costly, take weeks of my time away from my usual work, potentially full of corruption and disappointment, then Susan will more than likely die in the next couple of years. Or I can take her to UCI and experience the above situations, watch her go through chemo and radiotherapy which may or may not be successful enough to shrink the cancer and extend her life so that she can watch her children grow up for a few more years, and for her children to have a mother for a few more years.
Of course, there’s no option really. We have to try. Successful or not, we have to try.
Friends, can you help me raise £1,200?
This is an estimate. It may be less, it may be more. Until we go to Kampala, get into UCI and get a treatment plan, we don’t really know what we’re facing. But with the help of the doctor, we estimated that 5 million Uganda shillings could get us pretty far.
I hate asking for money at the best of times. To ask for this amount for one person, when it could go so far here, is also hard. But this poor lady has seven children. She’s suffering and in so much pain. She has been bleeding for years but hasn’t had money to go for any medical intervention. If she was in the UK, I am sure the cancer would have been detected a long time ago, and treated for free. But this is Uganda. She’s only one person among many who are suffering from cancer here. But I know her. I have come to love her and her family. Who am I to deny her a chance of life when I have the power to do something?
I’ll be honest. There have been times this year where I have got down on my knees and asked God, why did I ever have to meet this family. Ignorance is bliss. Feeling powerless and frustrated is not bliss.
I like being in control and I like knowing outcomes. This whole, huge, shitty cancer thing, wherever in the world you are, is full of questions and unknowns and anger and confusion and devastation and exhaustion and loss. Here in Uganda, it has an added layer of significant financial cost, lack of accessibility for treatment, and long, long, confusing processes (I’ve only told you about a few!).
On my knees now, I’m saying God, I’ve met this family. I thank you for that, and I know it’s been for a reason. Let me not wallow in selfish self pity, but let me use my incredible privilege of a whole load of people – friends family and strangers – who may be willing to become part of Susan’s story of grace and healing and hope. Yes, she’s one person, but she’s a mother, a wife, a friend who needs a chance.
Please send me a message on FB or an email (emily_braybrook@live.co.uk) if you would like to help, however big or small. I will be able to give you more information about her, and some photos. (Which she has given permission for but I didn’t think it fair to share her identity on this platform as I have spoken about some personal family issues and some of my beloved Rukungiri friends may be reading!)
Thank you, thank you and God bless you.
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Update – 8th November
It’s taken me a couple of days to get my head around everything but here is an update of what has happened this week.
Firstly – THANK YOU – to those who have financially supported us to get up to this point!
We left Rukungiri early on Monday morning to head to Mulago Hospital in Kampala. ‘We’ being myself, Alfred (driving), Jonas (my colleague, and translator!), Susan, Susan’s husband, and a female caregiver (in Ugandan hospitals all care is done by the family/relatives, not the nursing staff, so women always need to have a woman and for men, vice versa). If you’re doing the maths right now – don’t ask!! TIA.
After a long journey, we found some cheap accommodation reasonably close to Mulago Hospital, knowing that it would be an early start in the morning.
At 5.45am on Tuesday morning, in order to dodge the ‘Kampala Jam’, we headed to the Uganda Cancer Institute, a branch of Mulago. Upon reaching and having absolutely no idea where to begin, a security guard directed us to an office and told us it would open at 8am. We sat around for a couple of hours, then 8am came and went and the office didn’t open. I could write a number of paragraphs about how the following hours were a nightmare, but I don’t really want to go back there! We were sent from pillar to post, from office to office, waiting and waiting, having conversations like,
‘No, you should have gone there’
‘But I was there, and told to come here’
‘Well go back there’
During which time, over 50 more people had arrived and queues were increasingly long.
In the end, we saw a doctor at around 11.30am who looked at Susan’s papers, referrals etc. He looked at the biopsy report and simply said ‘this isn’t clear enough. You will have to start again’. No, noooooooo. We thought we would go straight with the papers to see a consultant and begin treatment.
Luckily, Alfred has a distant relative who is a nurse at UCI. She came and helped to connect us to the gynaecology section, saying that the general cancer section would waste our time. (It already had, but never mind). By this point, we were all kinda (very) hungry, thirsty, tired, and fed up.
Long story short, Susan has been booked in for another biopsy next Monday (11th), and would again wait another week to collect the results, following which we would be able to make an appointment with the consultant. Bear in mind that from Rukungiri, it is a 6-7 hour drive to Kampala.
We were told she would also need an up to date ultrasound, and a specific blood test which we would have to go out of the hospital to do.
The blood test went without a hitch, though we had to wait for two hours for those results (the room was air conditioned though!!). By this time it was almost 4pm so we decided to have lunch (and breakfast) at a local restaurant.
Alfred, Jonas and I had some long discussions about what to do over the next few weeks, predominantly regarding travel and accommodation. We calculated that it would be much more expensive, and tiresome and uncomfortable particularly for Susan who gets very travel sick, to go backwards and forwards to Rukungiri. We therefore decided that the best option would be to rent a room so they can stay in Kampala, and Jonas and I will be travelling backwards and forwards on the public buses. Alfred began making phonecalls to various friends around Kampala, asking for places to stay, near Mulago, within budget. Not easy!
As we were waiting for feedback on the housing situation, we decided to go for the ultrasound. Oh man. What a nightmare. We decided not to tell the clinic any of Susan’s history, or show them any of her papers, to see what an independent report would say. After another hour of waiting, we received the report (incorrectly dated 10th October….) which said that she had cysts but everything else appeared normal. I was CONFUSED. Alfred went in to question the report, and the doctor said ‘oh, yes, I saw something like cancer but you had not mentioned that this was a cancer case, so I decided not to put it in the report.’ WHATT? WHAATTTTTTTT???? Can you imagine?!?!!??!?! He said he would write another report including the ACTUAL findings. This has terrified me. Is this really happening? I still can’t get my head around it. He followed this comment saying, ‘you see that patient who just left. She is a cancer case too and it’s very bad’. Patient confidentiality? No? The clinic then tried to convince us to come to them privately ‘we will do a full hysterectomy and you will be finished with everything in two weeks.’ We have been told by a number of (actual?) medical staff that she must NOT have a hysterectomy.
Sigh.
I sound like I’m complaining, and to be honest, I am. The delays, the frustrations, the inadequate medical care, the lack of efficiency. But we did meet some people who really helped us today too. Who stepped in and stepped up.
Anyway, by this time it’s around 8pm. A great friend of ours in Rukungiri, James, had met us at the clinic and moved around the area on a boda boda enquiring about places to rent. He found one, ‘it’s tiled! It’s good!’ within our budget. I was instructed to stay at the clinic while the rest of the team went to have a look at the place (‘if the landlord sees a mzungu, he will increase!).
I sat on the floor outside the clinic with my head in my hands. I was so overwhelmed. I felt something in my spirit say, ‘just worship’. I said no, I don’t want to. Again, ‘just worship’. So I did. I put my headphones in, and opened youtube. I opened the first thing on ‘suggestions’, without even really looking at what it was.
It was this. Minutes and minutes of the refrain, ‘you are good, you’re good… you’re never gonna let, never gonna let me down’. I cried as I was washed with the truth. He’s good. He’s got me. He’s got Susan. He’s got the situation. I trust Him.
And in the middle of the song (at 9 mins), a beautiful, powerful, perfectly timely encouragement by a guy called Jim Rodriguez. Oh how He knew what I needed as I sat there. If you have 20 minutes today, watch this and be challenged and changed.
I listened to this three times. I reflected and I prayed on the song and the message. Big weights and burdens lifted from me as I handed them over to my Father.
After just over an hour, Alfred, James and Jonas came back, having dropped Susan, her husband and the caregiver at the house, and bought a mattress, charcoal stove for them to cook on etc.
5am start…. 11pm finally in bed. It was a long and tiring day.
Jonas and I travelled back to Rukungiri on Wednesday morning on the public bus – we better get used to it!
We will travel again to Kampala on Sunday morning, ready to be back at Mulago early morning on Monday. Let’s pray the biopsy happens quickly and successfully.
Thank you so much for your prayers and support. We will still need considerable financial support once a treatment plan has been made! I will keep you updated.
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UPDATE 14th FEBRUARY
Between myself, Jonas and Alfred, we have been in Kampala around 4 times between November and now.
I could tell you about the hours and hours and hours and days and days we have spent waiting in the hospital. I could tell you the hours we have spent travelling around and across Kampala for various tests, and then repeat tests a week later. I could tell you about a landlord who treated us terribly. I could tell you about a week long hospital admission for Susan when she was at her weakest. Most recently, I could tell you about two days we spent this week at the Radiotherapy Unit, along with 150+ others, desperately and exhaustedly asking for answers. I could tell you that there is currently one functioning ‘free’ radiotherapy machine for almost 50 million Ugandan citizens. I could tell you that we were told to bribe the radiographer if we wanted to get ahead in the queue. I could tell you this is the third week Susan and her husband had been at the Unit, waiting patiently and hoping their file would be called out.
But anyway… the most important thing, is that Susan started her radiotherapy treatment on Wednesday. Hallelujah!!! What seemed impossible became possible. On Tuesday, we were told by one of the more helpful staff that we should come back and try again next Monday (17th) having been told the same thing the previous three Mondays. Miraculously, a minute later, the radiographer called this particular staff member and told her to come at 7am tomorrow (Wednesday) to begin treatment. No money exchanged hands. I don’t know what changed but she started. She will now have 25 sessions of radiotherapy and then her next steps will be decided.
Oh thank you, to those who have prayed and given. You have financed all travel, tests, treatments, rented a room for Susan and her husband in Kampala, and fed them, since late last year, and you are now paying for a lady to help take care of Susan, wash clothes, cook food, fetch water etc while she undergoes treatment.
Sometimes the finances have run very low, and I would genuinely worry how we would get through the coming weeks. But perfectly and miraculously, whenever we needed, money would come. Someone sent 500 pounds just when we needed a bigger chunk for travel and tests. Another person sent 50 in time to pay the rent for January and helped us to buy matooke, rice and other food stuffs. God knows.
It’s been a journey which has made me angry and hopeless. But now we are somewhere and I thank God for the doors He has opened and the people He has used to bring us to where we are now.
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