By Mohamed Komeja.
Mohamed Komeja was our guest on Episode 66, where he shared bits of his cancer triumph story. During that period, he would occasionally write about his journey on a blog. Here, we share some of those blog entries, with his permission. All this, as always, with the aspiration of surfacing the troughs and crests of the human experience – the joys, the sorrows, the losses, the wins; to remind you that we are on this path together.
May you be happy – Kamande.
Posted 21st October 2016 by Mohamed Komeja
On May 4th, 2016, I was officially informed that I have been diagnosed with cancer of the stomach, also known as gastric cancer. A few weeks before, I had gone to my doctor for a routine check. I had pains on the side of my chest. The pain sometimes moved to my back and at the lower part of the breastbone. After making preliminary examinations and not being able to ascertain what was causing the pain, I dismissed it as stress pain. I had good reason to suspect stress because I was going through a rough period at work; the non-governmental organization I have worked for for 15 years was in deep financial crisis and had decided to dismiss all employees, me included. Life has been a roller coaster since 2015. The doctor, in his wisdom, suggested that I take a CT scan just to be sure I was not suffering from an internal ailment.
Computed tomography (CT) scan
The CT scanning is a straightforward process where they make you drink a liter of water and inject you with a contrast fluid. The fluid is applied through a vein and it gives you a slight burning sensation, a metallic taste in the mouth, and a warm feeling down under that makes you feel like you must visit the gents. However, these feelings are short-lived. They ran me through the machine and in a few minutes it was over. I did not know that this simple act would be a turning point in my life.
Gastroscopy
After a week, my doctor sent me an SMS; strange, I thought, this was the first time he had done so. He informed me that the scan had not found any problem in the chest, but they recommended that I take a Gastroscopy to examine the inside of my stomach. As I had no pains in the stomach, I thought this was another routine medical check. Well, if I had known what Gastroscopy is, I would have thought twice.
You can imagine someone inserting a tube through your mouth, down the throat, deep into your stomach and taking pictures of all mixtures down there. Despite the pain in the throat, the nauseating feeling, and many attempts at throwing up – I am really thankful because this procedure saved my life. Down there, deep in my belly, something had triggered some of my cells to embark on a mission to multiply as much as possible. As the surgeon said, they had gone mad and forgotten what they were supposed to do – to protect me; now they were racing like a runaway train and splitting destructively. This cell reaction is what causes one of the world’s major killer diseases – CANCER.
According to the World Health Organization: “Cancer is the uncontrolled growth and spread of cells. It can affect almost any part of the body. The growths often invade surrounding tissue and can metastasize (spread to other parts of the body) to distant sites.”
The Verdict
So the verdict of the oncologists was that I have stomach cancer. However, there was a light at the end of the tunnel because all tests showed that it was localized at the lower bottom of my stomach and had not metastasized yet.
Posted 15th November 2016 by Mohamed Komeja
After the diagnosis, my journey through the cancer treatment landscape began. It would take three phases; chemotherapy round 1, surgery, and chemotherapy round 2. I completed chemo 1 in July, had the operation in September, and I will complete the last phase of chemo in December.
I have suffered more from the treatment than from the disease itself. The pains I had before I was diagnosed were quite subtle. It was more of discomfort than pain. However, chemotherapy is another game altogether. The Norwegian term for chemotherapy, cellgift (cell poison), gives a better picture of what the treatment is or does to you.
Chemotherapy kills cancer cells by damaging them. It can be used to cure cancer, reduce it so that it is possible to carry out other treatments, or in incurable cases it can be used to extend the life of the patient. In my case, the first round was used to reduce the tumor so that it was easy and safe to operate. It did work. By the time I was going for the operation, the tumor had reduced to an extent that you needed to be an expert to see it on the CT-scanner photo. This proved crucial because after the operation, doctors were confident that all the tests done both on the part of the removed stomach and lymph nodes showed no trace of cancer spread. The second round is to control stray cancer cells that might have survived the first round and the surgery.
Unfortunately, chemo cannot distinguish between fast-growing cancer cells and other fast-growing cells in your body; therefore, it poisons and kills “good” cells too. It reminds me of the Swahili saying that “mtego wa panya huingia waliomo na wasiokuwemo“, literally meaning that a rat trap catches rats and other animals. One of the side effects is thus lowering your body immunity by destroying white cells that protect the body from infections. This exposes one to infections; therefore, I have had to take blood tests every week so that the oncologist (a doctor specialized in cancer) can check how far my immunity has been affected, and treatment had to be stopped several times to give my body time to produce new white cells.
Learn more about chemotherapy. You can also get more information from your local cancer association and hospital. Learning more about chemo helps you as a patient, or if you are caring for a patient, to cope with the treatment and its effects.
Chemo has many other side effects, some of which I have suffered. I will share these and how I have coped with them in my next post.
Posted 16th November 2016 by Mohamed Komeja
Dear friend, In the many ways we have interacted, I have felt that you have made this journey much easier. In this age of social media, you have sent messages urging me to be strong, to have faith in myself, to have faith in God and not to give up, and I have heeded your advice.
“<<Så utrolig godt å høre, kjære Komeja. Jeg har tent lys for deg i hele går og i dag. Hører gjerne fra deg når du har kommet til hektene.>>>”
“Hallo my brother! I have been reading this message over and over again hoping that it would change. Am really shocked to say the least i have no words my brother but it’s my prayer that you will be healed. Pole sana and keep me updated”
“Hey there cuz, long time somehow, but you are all over my heart and mind. How are you fairing so far? Don’t worry, I’ve been crossing my fingers and I’ve never let them loose dear, and my belief is that all will be okay…very much okay. So, am imagining that even as you read this, you have that killer smile all over your face! And that is the way to go. I wish you all the world…we all are!!!”
Messages like this, and there are many of them, have made my day much lighter. Some of you have visited me at home and at the hospital. You have cheered me up and on. I remember the second day after the operation, a group of friends came, among them John David and Mwakio, two of the most humorous people I know. I was not given a chance to feel sick, as the jokes made their rounds. For concern for my neighbor, I had to rise from the bed and take my visitors outside in the corridor. There I was, carrying my bag of urine and water drip, trying not to laugh as I was still in pain. As a result of this, I became a star patient. The nurses did not have to urge me to get out of bed and walk about. I remembered what John had told me earlier: it is important not to assume the role of the patient. I didn’t.
Sometimes when my spirits were down, some of you came along and ensured that I was not lonely. We went for walks when my body was not in the mood. We ate together when my digestive system was rebelling due to chemotherapy. For you, these deeds might have been normal undertakings, but for me, they were therapeutic and a source of strength.
THANK YOU FOR BEING THERE FOR ME AND MY FAMILY.
Posted 17th November 2016 by Mohamed Komeja
In my last posting, I told you about chemo, which is one type of cancer treatment. There are hundreds of different types of chemotherapy medicine, used to treat different types of cancers. If you are a patient, your doctors will determine what type you need and in what doses. Never try to self-medicate.
Different types of chemotherapy medicines give different types of side effects. If you are a patient, please consult your doctor about the type of side effects caused by the medicine you are using. However, from the much I can gather, the side effects are temporary in most cases.
I am being treated by a combination of three medicines abbreviated as EOX:
- E – Epirubicin
- O – Oxaliplatin
- X – Xeloda
The EO are applied intravenously (using a drip tube through the veins) every 3 weeks, and for the X, I take it 2 times a day for three weeks.
Side effects and how I have coped
Fatigue Fatigue; feeling tired and helpless, is a common side effect of chemotherapy. For me, it is at its worst during the first 5 days after the intravenous treatment. It is difficult to describe how I feel. Here is an entry I made in my journal after one such day to give you an idea:
“My little voice (my conversation partner in the journal) here you are spreading fear again. Sometimes you make me feel like I will break into pieces like glass if I ventured outside. You even made me take a nap in the morning. Remember how I had to struggle to raise myself from the sofa? Why did it need so much energy to do such a small task? I look around, see people walking and doing their chores effortlessly – I burn with envy.” Journal 7.6.2016.
Many of you have praised me for being courageous during this time. I deeply appreciate that. In my circumstance, being courageous has meant managing the simple daily things like waking up in the morning, brushing my teeth without throwing up, swallowing a meal without the joy of its taste, raising that glass of water to my mouth though my mind is strongly protesting, getting up from the sofa and making the first step outside the house.
[Original Image 4 Placeholder: Blurry image, possibly related to skin side effects]
One of my best coping strategies has been walking, even when I am really fatigued. In good Norwegian tradition, going for walks has been my main exercise even before I was diagnosed with cancer. I start slowly, maybe just walking around the block, and then I extend. It takes an effort sometimes, and it is not always that I manage.
Nauseating and vomiting Another common side effect is feeling nauseated. It is also very common during those first days after the intravenous session. My doctors are aware of this so they give me anti-nausea medicine for the first three days. It helps, but I still experience nausea, especially when brushing my teeth or eating something spicy or sweet/sour.
Lack of appetite and loss of food taste The chemo medicine I take affects the skin and glands in my mouth, often causing nausea, loss of appetite, and food taste. The change of food taste is a weird feeling as you cannot be sure which food to eat. I have learned that most of the fear is in my mind. For example, I look at my bottle of warm water, with lime and ginger; my mind conjures this image of me throwing up. My mouth responds by producing this metallic taste. Sometimes I give in, though I know I must drink a lot of fluids. However, the times when I pick up my courage, take the bottle, put it to my mouth and drink, the water tastes exactly like it should. So, I have learned to say no to my doubting voice. I have had to stretch my limits, sometimes a centimeter at a time. I try to do this with food because it is really important to eat so as to cope with the strong medicine.
Hair and skin The medicine also affects my hair and skin. Hair loss has become a symbol of chemotherapy. I have thus lost hair, and after it came back, it had changed its texture from my hard short type to fairly thin and lifeless. This has not bothered me much because I have shaved it off even before it starts falling.
Recently, the medicine affected my toes on the left leg. I got a blister that made it uncomfortable to walk. I have managed this by cleaning it well and using a waterproof padded plaster. That way I can walk more comfortably.
If you are a patient or you know someone who has undergone chemotherapy please share your/their experiences here. There is a lot of information on the internet about side effects and how to cope. These are just a few that I have read.
Posted 21st November 2016 by Mohamed Komeja
Part of my coping strategy has been to keep a journal in which I reflect upon my current situation and life in general. It has been a good companion. I even created a character (my little voice MLV) that I converse with regularly. I remember in the first days when it started dawning on me that I was carrying a life-threatening disease, I was forced to reckon with death. This is what I wrote 30. May 2016, immediately after it was confirmed that I had cancer:
“The worst-case scenario is that the cancer had spread, doctors cannot do much about it but help me have a comfortable end. This does not scare me most. Death is inevitable so long as we are living. It does not give notice, it calls upon us whenever it wishes,”
The fear of death when you have cancer is real. Statistically, cancer took about 8 million lives worldwide in 2012. Most of the time I have heard about cancer is after someone has succumbed to it. You hear so and so passed on due to cancer. All the people I knew who had cancer, including close relatives, did not survive. In fact, by the time I was diagnosed, I had only met one cancer survivor and had not had the courage to talk to him about it. No wonder the phrase “you have cancer” played horror images in my mind.
It is not only me who conjures these images. Most people I have met or told on the phone that I have cancer express shock and bewilderment. I remember vividly, the cloud that ran on my wife’s face when she saw the gastroscopy images of the cancer in my stomach and when the doctor confirmed that it was real. The fact that she was a nurse and had seen what cancer can do to a person frightened her. She keeps a brave face but once in a while you can see the cracks.
Therefore, the second day after my first chemotherapy I entered the following reflection about life and change in my journal:
“The only way to get through this (cancer) is to have the courage to face it squarely with a strong will to overcome, a love for the greatness of the gift of life and having people around me who encourage and give me hope.
We should make use of today because it is the only day we are certain of. The past you cannot reclaim and the future you can only dream of. In fact the moment you are living now, is what is really yours. The rest can change in an unexpected way.
I take solace that change is inevitable, it is part of living. What makes a difference is how we manage it. You cannot fully predict the future but you cannot leave it entirely to fate. The unpredictability of the future is the force behind life.”
Some friends when they heard about the diagnosis, in disbelief they said, “not you, Komeja”. In my reflective mood I said to myself:
“This is a disease that attacks human beings, it has chosen me like other human beings so I have to deal with it the way human beings deal with other challenges in life.”
Rather like saying as a human being I cannot predict that I will get cancer. I can learn from experts on how to prevent it. I can choose not to smoke, not to drink too much alcohol, not to expose myself to toxic environments and be careful about what I eat, but cancer can still choose me. Do not get me wrong, I’m not saying we should not heed the experts. We should, and hopefully in the future they will be able to tell us more precisely what causes the disease so that we can be able to prevent it even better.
I wonder whether life would have been better if it was fully predictable. Would it be better for me if I knew the day I’m going to die? Won’t this knowledge take away the joy of life? For me I find comfort in living as long as it is possible knowing that ultimately death will catch up with me. Not to fear death but to embrace life. Ultimately the pain of death is for those who are living and not the dead.
Another friend told me that I owe her a life longer than Mandela, and I thought to myself why not. She reminded me of my dear mother who outlived my father by over 30 years. During all this time she lost all her siblings, 2 out of 3 were younger than her. She struggled with hypertension and other old age illnesses until she was about 84 (not certain of her birth date) years old. So I entered the following line in my journal, 2.6. 2016:
“On the other hand I love living. I would like to outlive my mother who passed on at about the age of 84 and attend my son Jalia’s (my youngest son who is 11 years old) wedding.”
My optimism is not based on heroic inner strength but an awareness that I stand a better chance of survival. I did an analysis of my situation and realized I had a reasonable fighting chance.
- Cancer was a treatable disease and many have survived it before me. IT IS NOT A DEATH PENALTY.
- The key to my chances of survival is that the disease was diagnosed early which made treatment much more effective.
- I was living in a country with world-class free medical services and high quality cancer treatment. The fact the treatment is free makes the burden less on me as a patient. I can concentrate on healing rather than worry about how I will pay the hospital bills. I’m now more aware that the taxes I have been paying over time were worth it.
- Knowledge about cancer and treatment is quite advanced in our time, especially in developed country like Norway. It was reassuring to see that the doctors had a clear plan for my treatment immediately they ascertained the type of cancer. There is a lot of research going on which gives reason for optimism.
- I had the strength both physically and mentally to deal with the challenges it threw to me. My doctors were optimistic that I will manage the treatment and had a higher chance of survival because by the time of diagnosis I was healthy.
- Lastly but not least I had a network of support around me. My family here in Norway and East Africa were by me. My friends showed their care and were always there to support me and my family. My colleagues and bosses did everything they could to make sure my financial interests were taken care of. Most of all my General Physician and the care team at Ahus Hospital were taking good care of my health and welfare.
With all this in place, I had no reason not to make peace with death and embrace life.
Posted 1st December 2016 by Mohamed Komeja
I had my last intravenous chemo on Monday 21. November. Still have 3 weeks to complete the X dose. Here are excerpts from my journal.
21.11.2016 Today is my last intravenous chemo. I’m a bit anxious. Did not sleep well. The prospect of another week of fatigue, helplessness, nausea and feeling sick all the time is bothering me. I’m sitting at the hospital after taking my blood test and ready to go, hopeful that the week will pass as others did. When all this is over I will look back and have a good laugh at Mr. Cancer.
22.11.2016 A gloomy day, as November usually is in Norway. It is dark, cloudy and drizzling. No sun to warm the heart nor the snow to liven the eyes. It is a day one is tempted to stay indoors, lay on the sofa with a remote control in your hand shuffling through TV channels. With the cell-poison running through my veins, killing good and bad cells like they do in a violent data game, the lure was really a good option. I could see my sofa corner, that special place where I pass my chemo days beckoning whenever I ventured into the sitting room. Thanks to my niece, who came from Kenya to take care of me during this last lap, I gathered courage and went for a walk instead. As she said some steps outside is better than laying on the sofa. She encouraged me, knowing very well if she left me behind I will be swallowed by my weakness. Here I am at my favourite café at the Metro Mall having a cappuccino with an apple filled muffin writing this entry in my journal.
25.11.2016 The last two days have been tough as expected. The chemo took me with vengeance. Maybe it has realised we are soon parting ways. It took all my strength away and left me as a leaf in a storm. It tied me to the sofa. Whenever I tried to summon my strength it slapped me back. The worst is that I had no appetite. Every morsel I put in mouth sent my digestion system in a spin. My heart beats went crazy and my body went limp like a punched balloon. Had my voice but did not feel like talking. Some friends called but had no courage to answer. Yesterday I gave in. I realised fighting back was only making the situation worse. Even in war, one must know when to retreat and gather strength for another day. So today I decided to fight back. I woke up determined to leave the house. That’s how I ended up here at the mall again writing this entry in my journal. It’s taking some effort to do it because my mind is struggling not to shut down.
Posted 8th March 2017 by Mohamed Komeja
It has been a while since I shared here. After an intense period of treatment and reflection, I felt apathetic. After I completed the treatment in December, an emptiness and fatigue set in. I needed a rest and detachment from it all. I therefore took a five weeks holiday in Kenya.
The holiday had a good effect on me. As my colleague told me today “you look younger” or as my sister-in-law in Kenya told when we were saying goodbye “you look much more alive”. I don’t know whether it is because I have lost some weight and thus look younger or just that I look healthier. Well, I feel healthier and I bet that is all that counts.
During the holiday I was invited by students of Pwani University in Kilifi on the north coast of Kenya. These students had come together to sensitize and educate fellow students and local people about cancer. I really admired their sense of service and commitment. I wish that more people especially in Africa would come out to speak and educate others about this and other diseases.
Being in Kenya, talking to people in the village and reading reports in the media about cancer, made me more aware of what I had gone through and how lucky I have been. The stories I heard painted a picture of an epidemic on the rise in societies that were ill-equipped to deal with it.
When talking to friends in Norway, and in my blogs, I have argued that cancer is not a death penalty. However, I was careful not to use this argument in Kenya because the stories I heard were mostly of people who had died of cancer. To make matters worse, cancer patients, especially from rural areas and the majority poor, had no prospects for survival. They are living in societies where the healthcare system is literally on its knees and undergoing series of strikes by the carers. The cancer treatment is way too expensive and available only in main hospitals, out of reach for most rural patients. On top of all this, the culture of care which should be the backbone of any health care system is no longer a virtue.
From the above experience, I feel I have focused too much attention on myself in this blog and little on others. No regrets though, it was part of my healing and a personal way of educating you my reader about cancer. I hope you don’t mind, now that I’m feeling much better, that we use this space to share stories from other people especially from the voiceless in other societies. Please press the comment button and share your experiences with cancer. You do not have to be a cancer patient, you could be a friend or a relative or just a concerned human being. If you wish to write a longer post please send me an email.