Yesterday, Today And Tomorrow

Yesterday.

Image result for yesterday today and tomorrowThe hospital has become my every evening chill out place lately. It has taught me how to appreciate my health and life in profound ways. I am starting to get used to the fact that death is a close reality. But my boy is all good. There is CAN in CANcer, he says. And so he can handle it.

I recently started keeping a diary for him. When the storm is all over, I plan to tell him how much of a difference he has made in my life in the last couple of months. He has taught me how to love, laugh, and endure. I have learned how to care. After the prognosis, I was at a loss. We all were. Cancer had struck right home. I cannot say that I have had a moment’s peace after that. Most of the time, I am on the net reading about bone cancer, and cancer in general, how to deal with it, what to eat and what sort of talk the patients want to hear. He has lost weight considerably over the last months and this hurts me.  Just the other day, I  started online tutorials on how to give a massage: my daily duty to him! And while at this daily duty, every single day,  I look at him and realize just how fast things can change.

His name is Bob! My favorite peer cousin and a cancer warrior. The tumour has been getting worse by the day. Massaging it has been getting harder by the day, it scares me even. Nowadays, I faithfully wear glasses to conceal my tear struck eyes most of the time. He is now comfortable with me tagging my friends along. Sometimes, he scrolls through my phone pics and asks if I can tag a specific friend next time, and I do. Always. Despite the pain and the strain that he is going through, he still affords us jokes. He wants us to talk like all is well. I forgot to mention, but he is admitted in a sick ward! Patients here die every day and he dreads it just as much as I do.

Before the clock struck midnight yesterday, he  left for home. For palliative care…

The day between yesterday and today,  I picked a diary entry extract. Of the day after his vein raptured and tore the skin. He bled to near death. I went to see him the next day.

Tuesday 11th October, 2016.

I barely slept yesternight and my eyes are tear struck. Yesterday, his vein burst open, he lost a lot of blood. He is now back in the hospital.  I can’t imagine how he is. Is he in pain? Has he eaten? Has he gotten blood? Is he still bleeding? And a lot of why’s fighting at the back of my head. I can choose to stay here and pretend that all is fine or find a way around it. I take a leap of faith and leave the office. At the hospital, I find him holding up quite well. He is happier than I have seen him in a long time. Talks about his stay home and the kind of pain he has gone through away from the hospital. What is palliative care without a doctor by your side? He glances at his thigh, then at my shy hips and back to his thigh.

“You know this tumour is bigger than you hips now?!” He teases. He adds something to the effect that the stomach has changed its alignment to only feed the cancerous leg and that’s why it’s growing like an elephant. I don’t get it, but I pretend to. As I feed him, he complains that the ward is full of old men. He feels like his life is 30 years ahead, some diseases are not for the young.

Then out of the blues, a priest comes. He has come to give him the sacrament of anointing of the sick, it’s a sacrament for the dying.

“They think I am dying.” He says almost inaudibly. I look at him in shock, struggling to keep it together.

“C’moon, I don’t think so. It’s just a matter of time and you are back on the pitch”. I know he misses football a terrible much.

“Then  why would they be giving me this sacrament now??” He asks, both firmly and with a faint stench of anger.I know him well enough to understand that he is angry with whoever it is that has lost faith in his battle, and at the priest for giving him a premature annointing.

I am also at a loss. It’s the first time reality strikes me real hard from my bubble of blind optimism. The first time I ask myself the what if questions… what if he succumbs? What if he doesn’t make it…what if. Stage 4 might be deadly, but not for him. This whole process and period hurts me he has no idea. But I trust the process, and even more, I trust in his fighting spirit.

***      ***

Texas cancer centre came…

Out of all the hospitals you have ever been to, this one has been the most challenging for me to visit.

Either way, I come: still, every day. Cancer patients are special. Next to you is Apolonaire, a fairly old Burundi man. His wife never lets him out of sight. Sometimes we converse in French. She is uncertain that he, Apolonaire, will survive. But all she can do is hope. This kind of love is pure bliss. But she worries more about you, you can barely turn without help. She is sad that cancer started the fight on you at such a tender age. She thinks you are amazing, you talk and laugh despite everything, you breathe positive energy. It’s a ward of 4. Two patients have succumbed in the last few days. But you are determined to live. Chemotherapy just started.

I have been stealing a lot of time to try understand how chemo works, and what options we have. I also seek medical advice from M., he answers all the questions I ask.  I call to ask what is wise, and what is not. Sometimes, I sneak out of the room to talk to him. Ask why you are sweaty, and in pain, and grumpy. What to do, how to do it and when to expect your tumor to disappear. Will it really disappear even?He understands both of us and what we are going through.

But chemo has made you a grumpy boy. I can no longer pick or make calls during my visiting hour. You don’t get why I can’t give you 100% attention. So I choose not to make or receive calls at all. I have been tagging more friends for the evening visits. Nowadays, we all pray together before leaving the ward.  We all have faith in you, we all want you back on your feet. Chemotherapy has given you a kind of pain we never knew existed and it breaks us apart. You tell us that it is burning your entire body in a sort of fire you cannot quite explain. And it also gets you tired and sweaty all day.  We come, see you, get weak but feign strength. But as soon as we step out, we lose ourselves in near despair. How can we not when pain, sweat and more pain is all what we see in the patients?… And now, you have repeatedly told me that you now want the leg amputated. Anything is better than this kind of ache. Then you ask if I will help you get a girlfriend if you only have one leg, petite like Chi preferably. I promise to. 

Today

Image result for accepting deathThings were all good yesterday And then the devil took your memory.

And if you fell to your death today I hope that heaven is your resting place I heard the doctors put your chest in pain,

But then that could have been the medicine,

And now you’re lying in the bed again.

Either way I’ll cry with the rest of them…

…I could look into your eyes Until the sun comes up and we’re wrapped in light and life and love.

Ed sheeran’s Afire Love has been on replay mode for more than an hour.

 ***

Seated by a corner window listening to this jam, over and over again. The sun decided to set in the morning today…and I have to deal with it. I received the news of your demise with repulsion. I feel nauseated and weak….and no, I have refused to accept. Maybe it’s a lie. You are a fighter.. The flight is taking forever, all I want is to get to the hotel and lie down. It will be a tough assignment this one. I uneasily scroll on my phone, back and forth. Our latest photos, our latest chat. But why do I call them latest? Those were the LAST chats that I’d ever have from you, last photos! But how did this happen? It was just the other day.

It feels like yesterday, just the other day when you were recovering from the second surgery, limping and in pain, but recovering well. We both were in agreement that the tumor could not be carcinomas. Your Dad let you drive his car around then, and you behind the wheel looked all good. Then life changed real quick. The swelling started, the admissions started, the complications came and you could not walk anymore. It’s an uncomfortable kind of a memory. I won’t lie that I will be fine, or that I will get used to you being gone, and me being here. It will be a lie. I  feel betrayed to the bone. Death betrays. He ought to have prepared me psychologically that the last visit at the cancer center was the last. Will acceptance of your untimely demise replace denial of your absence?

 

Tomorrow:

Image result for till we meet again

And tomorrow, you will be laid down to eternal rest.  I will try get accustomed to the fact that I do not have you anymore, that I will not have evenings fully booked by you.  I will find a balance between remembering you as a lovely memory of hope and resilience: and a sad memory of the sort of  pain I saw you fight with undying strength. But until then, until I know how to reconcile between your absence and the hopeful anticipation of seeing you again, I will only hope that you found your resting place.

Appreciation to everyone who walked the journey with us. And to my visiting partners, Cii, Drew, Chichi, Lily, Faith, _Serah, Josh, Winnie & all..you made the last days a whole lot more meaningful. To the medical staff, every  effort is deeply appreciated.

Hopefully, we will all find the grace to believe that God’s timing is the best.

 

 

 

 

 

“They are so happy out there, you wouldn’t imagine they are sick.” I absentmindedly tell the lady standing next to me as we watch them play and laugh with their newly made ‘friends’…

“The kids here know that every day counts. They enjoy life to the fullest while they can. If one passes away, they are all personally affected, and by reflex we give them time to recover. They barely talk to us before their mourning period is over. It’s even harder for their parents. Watching their young ones fight for their lives is draining and difficult. They have become one big family united by hope and faith that all will someday be well. Chemotherapy is a painful process: some of them make it through and recover, others don’t.”

“Do you ever feel depressed?”

“No, it’s very easy to get depressed in here, but we have refused to be. It’s my job to cheer them up. I derive so much satisfaction seeing them smile in pain… It has taught me gratitude, I have learned how to pray too.”

We are at the Kenyatta National Hospital, ward 1E…the oncology one. After writing Nightmare in Reverie, I realized that maybe the reason I dreaded valentine’s day was because I had always been on the receiving end, because I allowed myself to measure my worth by the premium dates and gifts that came along with the day. I pegged my happiness on what other people did for me, and yes, I missed the point for over two decades. I wanted a different kind of valentine’s day this year, one I would look forward to. It is this ‘want’ that brought me here today:To give selflessly and not expect anything in return. To be among my most comfortable company: kids. To spread the love to those who needed it most, and to momentarily journey with them in their journey to recovery, or maybe their last days.

One of the bubbly kids passes by and ‘Sister’ smiles back at him. They all call her sister, the lady I have been talking to. Our conversation goes on.

“See how fast they pick up? That boy couldn’t walk when he came, his spinal cord was affected. Now he is getting better, but it’s only for so long… Victims of the cancer he has barely grow past thirteen years, I hope he will be one of the lucky kids who make it beyond the life span.’’ I walk away from sister feeling disturbed by her last statement, the thought of having numbered days to live is frightening, it is a countdown to the last breath: to death.

My pals are out playing with the other kids. I am inside the ward, with the ones who are a little too weak to play. They all defiantly afford me a smile. All of them, except one. I walk over to him trying really hard to keep it together. I am scared I will break down into tears. I am suddenly realizing just how much I have been taking for granted. What am I supposed to tell him? What if I can’t contain myself? Am I allowed to show empathy by crying my heart out? Am I even supposed to cry in the first place? There is something about a child fighting pain and tears that splits me apart.

“Mala” He whispers.

“Ma?” I am not sure what he has just said.

“Mala…” I am now startled. But he is looking at a pack of milk next to his crib.

I guess he wants milk, Maziwa mala. (Accurate guess). His plate of food is barely touched: chewing and swallowing are equally painful to him. I have noted that a good number of the kids’ parents are here to give them the morale to carry on, to fight the pain and to provide a shoulder to lean on when the ache becomes unbearable. Most have severe back ache, I am told that it is caused by the Neulasta shots administered. As he sips the mala, my mind drifts. How does it feel having a child with cancer? Do you wake up scared that they will have succumbed by the next time you get to there? Where do you draw the strength to keep trusting in God’s favor? But wait, why are we always saying that the Lord has been faithful when things are smooth, does it mean that the Lord is not faithful to those who are suffering? To these kids juggling in pain on Valentine’s day, would they believe me if I told them that the Lord has favored them?

Back to the boy in front of me. I ask him if his family will be coming.

“I don’t know. Mom akipata pesa atakuja. Daddy sijui alienda wapi, hajawai kuja. He is starting to cry.

I look away to wipe tears from my eyes. I am not sure what hurts me more, the sudden realization that we take so much for granted, or the pain in those kids. They all go through pain, to some more than others. And the detachment from their families at such tender ages! I look at the boy and wonder how much he is enduring, and how much more it tortures him to be away from the comfort of his home. How much the little attention he gets from his mom means to him, and how much he appreciates the sacrifices she makes to afford the transport charges to see him. A wave of tears gushes out, I am losing my composure. I reach out for my sunglasses with trembling hands, I must conceal my weak self. My pitiful self that is now being betrayed by my inability to hold back tears when I most need to. I somehow feel like an emotional wreck but altogether determined to remain collected. I feign a smile, promise him that I will be back in a few minutes, and storm out for some form of release of emotions. I cry a little in the ablutions, dry my face and walk out determined to be the sunshine in the storm.

I walk over to Cii; she is the one girl who helped in the planning of this visit. I ask her a million questions. Why we came? And if she feels like we have achieved our objective. I ask her what we can do for the kids and if a foundation for supporting children with cancer would be a viable idea. I question what she knows about chemotherapy and radiotherapy and what happens to those who cannot afford the process. I answer myself without giving her the opportunity to respond. That they (The patients) are so many, we wouldn’t even reach out to them all in a million years. Then I pause, I remember my life coach telling me that the winning strategy is to think big and start small. That great things are done by daring to believe in the bigger picture and the end goal. She listens apprehensively.

We are almost equally lost in our own small world. And we both agree on a couple of things. That next time, we will remember to bring them temple run! And that a foundation is a worthy course! And that going forward, our way of showing love on Valentine’s Day will be by giving our time and attention to those who need it most, these kids included.

As we leave the hospital, I feel overwhelmed with mixed emotions. I feel happy that we put smiles on their faces, and partly feel disappointed in myself for momentarily losing my calm. I Feel sad that we are leaving them, hopeful that we will be with them again soon, and challenged by the work that the medical team does to save lives, to restore hope and be there with the patients whenever they can.

I am immeasurably proud of the children’s strength in their battle with cancer. They are my roses for Valentine’s, Roses of pearl-coated infinity who have transformed the hospital
into a palace made of psalms and gold with their zeal to live. And for all those who have succumbed to the battle, I make a quick prayer that their souls find eternal rest. I look at the amazing friends beside me who found time on this special day to be with me and quietly thank God for them. I look at Cii and anticipate a day when our bigger picture will come to pass, all in due time.

“Life is made up of a few moments all strung together like pearls. Each moment is a pearl, and it is up to us to pick the ones with the highest luster. If we do not have time to do great things, take a few gentle moments and do small things in a great way.”
― Joyce Hilfer