Gratitude

My head has been in a thick fog for three weeks as my haemoglobin has dropped to its lowest it’s ever been. The cold weather and stress of being in the UK wiped through the last donor transfusion in less than 5 weeks. I came back to Thailand exhausted.

I can’t think straight, I get words muddled, I am mentally spun out.

I forget what I’ve done and where I need to be. The pain is coming back in sharp-jab-like reminders and my limbs are locking out as blood flow and lack of oxygen around my body is poor, giving me excruciating cramp and loss of feeling.

I am breathless and dizzy, my eyes and nails are turning yellow. I feel like the living-dead – here – but barely functioning.

I do it with a smile, and 2 inches of concealer under my eyes after half a pint of coffee every morning.

Everyday I force myself out of the door like my life depends on it, to practise dynamic yoga to boost my endorphins, raise adrenaline and release cortisol for natural pain relief. This is routine. The only routine I have done for 3 years. And one I never break.

Waking up is the worst experience for me and it has been since I needed donor blood every 8 weeks to stay alive.

It gets harder all the time. It is not about rising early, this I love. It is about the act of physically getting out of bed. Some days I feel like there is a concrete block on top of me and I cannot shift it. The lethargy is heavy, but it is also invisible. But somehow I do it. And I give myself a daily goal to ensure I get up.

Despite all of this, the key thing I have had is time. I have had time to adjust to this disease. The illness I didn’t want or ask for. The one that I live with and now accept is never going away.

I have had time to get a head start. I have had time to find and lay a foundation that would help me now. This I am so, so, so grateful for.

Ten days ago I passed my 5th anniversary of living with bone marrow cancer in the beautiful province of Chiang Dao: gazing at the mountains and breathing in clean air and watching my wonderful friend from London chasing butterflies. It was a day that was nothing like the bleak and depressing future that the bitch-of-a-nurse tried to paint for me in a cold, hospital room, the day of my diagnosis. But where I am now is not something that happened overnight. It has been a journey of many, many lows. And many, many lessons.

I am so very grateful that after two years of being lost in the dark and feeling alone and petrified, I managed to create and build a new life that works for me. Time has allowed me that luxury to find the resolve and strength to keep going.

Today I was reminded that not everyone is so fortunate to have time to adjust to their condition. Some people wake up one day and change is instant.

My encounter today brought back, like a tidal wave, the panic and knots in my stomach of fearing the unknown. Feeling sick to my stomach that I would never ever be normal again. That my life was changing and there was fuck all I could do about it. Illness is isolating and you live with the losses, lick your wounds and get on with it.

This afternoon I was in tears, hugging a man I barely know, in the middle of the street as he sobbed. I saw pain and fear etched into his face as he tried not to breakdown further in front of me. It hurt me to see him proverbially on his knees. I know this feeling. I have been there. I felt like I was choking reliving the experience, it was like looking into a mirror. And it disturbed me so much it’s pushed me to write, despite the brain fog!!

I didnt recognise him as he battled to walk down the road in a straight line. I had just come out of the hospital when I saw a tall, athletic looking man in his 50s swinging his right leg out to the side which was strapped into a brace. He looked uncomfortable as his gait was very awkward. And there was air of resignation about him.

As we got closer I realised it was someone I had met a few times at a yoga shala I used to practise at last year. We don’t know each other well. Only enough to say hello and pass some pleasantries. But this time when he stopped, his face was different somehow.

“Hey, wow long time no see. What happened to the leg, motorbike accident?” I joked.

He shook his head violently left and right, like a child unwilling to speak.

“What happened?” I coaxed, changing my tone and moving closer.

As he stood there. I notice his mouth was not straight. It was sloping to one side and he made a yawning sound like a lion, as he forced out the word ST-ROOOO-KE.

“When did this happen?” I blurted out.

It was too hard for him to form full sentences but from what i made out at least most of this year and with no reassurance from any doctors about his recovery time. We spoke for a few minutes, me asking mainly yes and no questions.

I was dumbfounded. “Oh my god, I am so sorry…,” I said reaching out to squeeze his arm.

His eyes were filled with sadness. His shoulders slouched like someone who’s been beaten down from dealing with the same shit day-in-day-out and can’t do it anymore. I could see his frustration of not being able to communicate fluently. His tongue and mouth not working in unison. He gestured with his hands as he tried to explain. But even this was not helping.

“Please, please take care of your mental health. So much of recovery and better health depends on this,” I said jabbing my finger at my temples.

”If you can work on this, your mind, it will make a huge difference to the physical body. If you allow depression to kick in, it will be so much harder.”

To see a man who was so strong and active. Someone with such confidence and swagger now reduced to a vulnerable human ready to give up, really hit me. I could sense he was glad to share his anxiety with me.

Disease and long-term illness will humble you. It will strip away any confidence and ego you have and crush it. BAM!! It will bend you and you will yield until you are on the floor before you can figure out a way to live with it. You will never ever be the same person again.

Whether you transform into a better version of yourself will depend a lot on your mindset. I have see people be destroyed and eaten up by bitterness and anger. You cannot change what’s happened to you, but can control how you react.

I hate it when healthy people give me advice I didn’t ask for. Even if it is meant well, it is always misplaced because they will never know what it is like to live with cancer. So I shared my illness with him. He was shocked. He had no idea. But there was moment of connection. And I am glad I did.

I wanted to give him hope that he can take control of his situation. And that people don’t have to believe everything the medical staff tell you.

“It’s great you’re trying to exercise and turning up at yoga. Keep doing this, physio is brilliant, movement will be great for the leg. But your mind is so important for your wellbeing and recovery. This you need to control.”

He nodded passionately in agreement, with his head lowered.

”Just take one day at a time and please stay strong!

“Living with an illness is so hard. Keep focused, do not give up!”

He pressed his hands into prayer position. We stood looking at each other, both of us with tears in our eyes. We embraced tightly, crying silently into each other’s shoulders.

I wasn’t imparting something he doesn’t already know. But these words were also said to me by a friend, long before he died, who was further along in his cancer diagnosis than me. And I know these words still help me today, I just hope it will help someone else too.