It all started out back in 2007 when my brother was in high school, on their closing day he was found lying unconscious on the ground and rushed to the hospital, nothing concrete was diagnosed and he was discharged from the hospital. We all forgot about the incident till a few years later when he was in University when it all came back to hunt us. I remember vividly like it was yesterday, it was the Christmas of 2010, my brother and I had been busy the whole morning preparing different meals for the day, we used to joke and tease each other a lot and after a sumptuous lunch, we all sat down as we caught up in what was happening in our lives.
He was a great story teller I must say, he narrated how he used to get sick while in school, the fainting, the painful headaches and the hospital visits, he narrated in such a manner, we all laughed, him included. After catching up, it rained and he went to lie down in his room. We were inseparable, after a few minutes I followed him and began teasing him, mostly about the girls he was chasing, that as the first time I witnessed it all. “It is happening again, this lightheadedness is not a good sign” he said, before I could even utter a word, he was clinching his head and screaming. At first, I froze, I had never seen someone go through such pain, I rushed out of the room and called on my dad who came rushing. We didn’t know what to do, it was raining outside, it was Christmas day most good Doctors were off duty and cell phones switched off. I sat next to me and held his hand, that’s all I could do, my eyes just closed and I whispered a prayer, “Dear Lord, ease his pain, Amen” five minutes later the pain was gone and he opened his eyes and he asked if it was over.
The next day he was scheduled for tests by his doctor and on doing all the tests, nothing came up as everything came out as normal. When one is sick, sometimes you pray for bad results rather than no results at all since you know there is something wrong and if everything is normal then it becomes a worry.
There was only one solution to the problem at that time, to treat the symptoms rather than the underlying problem. His blood pressure was of great concern and he was put under medication, high blood pressure medication, and pain killers.
The following year, he was diagnosed with a rare type of epilepsy and was given medication, this worked for a couple of months but then again we were back to the drawing board.
This time round, it was not only the mild headache, He experienced severe headaches that always led to a blackout, a blackout that he lay still, eyes closed and on his worst days not breathing at all. When we thought we hadn’t seen the worst of it all, his legs started acting up, especially his left leg, the same pain that was in the head was also on the leg. The back also had its own issues, especially the lower back.
I used to have sleepless nights before; they entailed just laying in bed with my phone or sitting with my computer doing other stuff. This time round the sleepless nights were filled with screams, it was pain that normal painkillers would not submerge, even the strong ones only lasted for 2 hours and we were back to screaming. At that time, we had to think fast and improvise, I did a lot of research and whenever I found anything interesting we would apply it to ease the pain. I had the trick of a hot bath towel followed by a pack of ice, surprisingly this actually worked, we were happy finally we could get some sleep at night. This worked for the first week and by the second week, whenever I could get a chance to catch some sleep, I could hear my name, “Gerty,pain,pain My leg,my head, my back” I could wake up and start the process, hot water, bath towel and pack of ice till my hands could turn red. My hands weren’t important at the moment; my brother was in dire need of care. Me and my sisters took shifts in giving care at home as we waited for his MRI and CT scan results.
I was in school that day when I called my dad to see how things were going, the MRI results were back and he needed immediate hospitalization. I was sad but I figured, it was for the greater good.
I went to visit him the next day in the hospital not knowing this would be the first of many visits to that place. He was in great moods whatever they gave him that day, worked perfectly. We had our brother-sister moment and I told him to have faith and always pray for quick recovery and that was the last day I saw a healthy, happy brother.
The next few weeks were the most hardest as tests were being done on him to know exactly what was wrong with him, most results came out negative and a few problems were discovered such as a corroded backbone, he was immediately put under medication. A few months in the hospital, a lump grew on the side of his belly, I remember when he first told me I joked about it, “Aaah, you are just developing a second stomach” a sample was taken form the lump to test for any diseases. My sisters and I were talking and we said that we wish they just find any illness so that he can start medication; it is easy know you have certain illness even if it was cancer than no illness at all yet you are sick. Our words came to haunt us the following day when our family doctor called us to his office and broke the news he said “I know it has been a rough journey and now we have found the underlying problem and with the right medication he will be alright” I knew this wasn’t good at all, my dad asked what the underlying problem was, the doctor went ahead “Chris has cancer, Rhabdomyosarcoma, it is an easily treated cancer and reacts well to chemotherapy”
Everybody was quiet, we were shocked and sad at the same time, my mum knelt down and we joined her in a word of prayer and as we said Amen, we were now faced with the task of telling my brother the sad news, the doctor took the task, he went to his room and they talked for an hour or so.
My brother was a strong person, the news didn’t affect him as much since he was in his jovial mood.
The journey to recovery
He was put under radiation to kill the pain in his back and his left leg, this was successful as he had no more pain in his back for a while. We had hope now as things were beginning to move in the right direction, the hospital became our second home and luckily I was now in my long holidays I could dedicate my time and energy into helping him recover.
After radiation, he was scheduled for chemotherapy; he was under a drip for four days after which he was going to be discharged. We counted those days like small children counting hours to see their parents, w extended a few days so as he could be monitored on the side effects. Finally the day to go home came and we were so happy to bring him home, we thought the fight was over little did we know the real battle was ahead of us. The following week was hectic as his side effects kicked in, nausea, vomiting, lack of appetite and even corrosion of the mucous membrane of the food pipe, it was tough.
I did a lot of research on cancer, chemotherapy and some remedies to the side effects, I had to be in the know how to answer my brother’s questions, somehow when he had something and I could tell him it’s a side effect it will fade way he could relax. We used to joke of free shaving when his hair was falling off
Sadly, even before settling in with no side effects another round of chemo was already nearing, his chemotherapy was three weeks apart for one year and he was to eat well, feed on blood building foods and even resorted to blood building tablets and syrups. A blood test had to be done to determine whether he was good to endure chemotherapy. I remember one chemotherapy drug he was under was called Cylophosphamide, it was the main drug in that chemo course and it had a major side effect of destroying the normal function of the kidneys, talk of fighting evil with evil but there was another drug called Mesna that counteracted that side effect hence his kidneys were safe.
The following months were followed with a lot of hospital visits for follow ups, blood tests and after every three weeks, 3 days in the hospital for Chemo, what amazed me was he insisted on going back to school even though the drugs were killing him, he wanted to be normal and continue with his life.
He had a passion for law, he loved what he was doing and that was enough to divert his mind from getting depressed. He went back to school, did what his normal friends did except when he was feeling weak, tired or in the hospital.
Friday nights were our nights, whether stay in nights or out nights, we could sit and laugh at our suffering remind ourselves of the pain we went through when he was sick, we made sure we had fun when he was not in pain or in the hospital, we even called his leg pain break dance because of the way he reacted when the he was experiencing that pain and we could laugh when a night passed without that pain.
As the days went by, we began to be normal again, there were of course a few hiccups but we were fine. Then came this day when he was mugged and the thief just had to hit him in his left leg, that’s when all our problems started again, I was worried sick when it was 8Pm and he hadn’t showed up, his cell phone was off and his best friend had already made sure he was in a matatu by 6:30 pm, I was in a panic attack mode, I left the house and just started walking silently praying I bump into him somewhere, luckily I found him when he was just about to fall, he was taller and heavier than me but I managed to support him and sort for help. I was by myself that ay and I sat beside him just praying for him to wake up, I called his doctor and he told me to wait after 30 minutes if he wasn’t awake an ambulance was on its way, he lay there lifeless, I held his hand hoping he would clinch to mine but just as his body, his hand too was lifeless, I was scared but brave at the same time, I had to save his life, I took a cold bathe towel and pressed it on his forehead, five minutes later I had him gasp for air and at first he didn’t recognize me “who are you?” he asked me, my heart sunk, and a million questions flooded my mind, is this a side effect? Was he loosing it? I just smiled and told him I was his sister, the worry on his face disappeared and he recollected everything and was back to normal again.
It was the most traumatizing night of my life, and the next week as he went for his monthly checks, a Ct scan revealed that his tumor had been terminated by the chemo and he was now cancer free, that was the best news ever, it was his birthday the next day what better birthday gift than that? i was from doing an exam when I got his missed call and text saying “am officially a cancer survivor”
We celebrated that night, the next day, I thank the lord for that day, on his birthday, he did everything he loved to do from watching a movie at IMAX, to watching his team, Man U win and many others.
It was yet another Christmas day of 2011 when his left eye that had been giving him problems was swollen, we had to wait till the 27thsince his doctor was not in town, when he saw him he immediately put him under chemotherapy and told us the most shocking news, the tumor had moved from its primary source, the pelvis to the eye and that distance is too long and only one explanation for that, Stage four Cancer, during my research case studies showed that no one had ever made it with Stage Four cancer, but we still hoped, hoped for recovery. Surprisingly, the chemo worked magic and his eye was normal again. There was however one problem, the cyclophosphamide drug had interfered with the kidneys and a quick dialysis had to be done, we stayed in the hospital the whole night trying to schedule for one but luckily, the kidneys started functioning well again. He had this queer cough and irregular heartbeats, a chest xray was done and the results weren’t good, it was all black with no ribs showing, MRIs were scheduled for the next day immediately.
As we took him to get admitted again to the hospital, he broke down, he vented all his frustrations and he refused to see any doctor, I spent hours trying to convince him that the hospital was the right place to be if he was to be well rather than be home, that was a total failure but at least he allowed me to stay with him and when his doctor arrived, he was the only person who convinced him to be taken back to his room. The results came back and they were not good at all, the cancer had rapidly spread to the lymph nodes, kidneys, lungs and the cornea. We held hands together as we let the results sink in, in my head I knew it was a dead end but my heart still had faith and hope. We did what we used to do; visit, chat, laugh and pray. That Saturday of the 14thof January 2012 was the last time I saw him smile, he ordered for his favorite juice, mango juice but he didn’t talk much, he was weak and tired, all we did was just sit there and hold his hand. When it was time to leave in the evening, I remember my mum left and on reaching the stairs, she went back to his room. I followed her and we saw him as he lay in the bed on seeing us he stretched his hand and I held it, maybe he was saying goodbye and I didn’t just see it. He passed on the next morning of 15thJanuary 2012 at only 20 years old.
Care giving to a cancer patient isn’t an easy task, especially to a loved one, you give up all your life, social life and even your time to dedicate time to the loved one. When you think you have given it your all, you are required to dig deep and give more. The whole process left me weak physically but I emerged a stronger person than I was before, it taught me the value of family and friends.
Care giving is a selfless act, you have to give it your all and try your best to cheer up the patient, they can be a bit handful at times whenever they are experiencing pain or in medication, but it is your job to make sure that you listen and assure them that there is a brighter day. Whenever they are feeling better, make sure they enjoy every moment of that ‘cause you never know how long it will last. Information is key, research all you can on the type of cancer, the medications and alternatives and ask your doctor anything you don’t understand, this way, you know what to expect and how to deal with it. Have to admit, it is draining emotionally, physically and financially taking care of a cancer patient but it’s the will and effort that makes the patient want to fight it, you may not know but it’s the care giver who gives the patient hope.
If I were to go back again, I would give up everything I gave up to take care of my Brother, I wouldn’t change anything, he was worth it. It was a painful journey, still is but as the days go by, the load becomes lighter, you no longer are sad, angry or mad at God or the world but thankful for the time you got to spend with a loved one. It was an intense experience and to date I will never forget but I will move on.
~Personal stories, Africa Cancer Foundation