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Entry 12 - Losing Myself

Updated: Feb 9, 2021

'And like the Moon, we must go through phases of emptiness to feel full again'

Dear Amaala,

This will be the final post that I write to you alone, because you are now a big sister. You have THREE new siblings who have been keeping us very busy over the past five months, but who's arrival completes us as a family.

It is now February 2021, I have no idea how that has happened as it feels like just yesterday that you were running through the doors at Nursery, heading up to the baby room and meeting all your friends for a day of fun and adventure. You've now been out of nursery for longer than you were in Nursery due to Covid 19, and that fact breaks my heart. I'm sure you're enjoying spending all this extra time with Mummy and Daddy, but I know you are missing seeing new faces and having the freedom to run around at soft play without the fear of falling ill. Even at your age, you now know that we don't leave the house to go to the shops, and if we go to for a walk we must pick up our masks and sanitiser before doing so.

So much has changed over the past 12 months, the world we live in is infinitely different to the one you were born in, your brothers only know a lockdown world. They haven't met any other babies, they've never been to a baby club and the only adults they know are their immediate family and the nurses who care for them.

You are a brilliant big sister, every morning you wake up and ask where your brothers are, as they wake you give them all a big sis kiss and tickle their tiny tummies. If they cry you tell Mummy she must go and look after them, if they're hungry, you ask to help feed them milk, and when they are playing, you pull out all your musical instruments to help keep them entertained. You remind Mummy and Daddy that you are no longer a baby, but instead you are now a little girl, not quite a big girl like Mummy is. Your conversations melt my heart every single day. I'm amazed at just how clear your speech is and how many new words you seem to effortlessly pick up. Your memory is far better than mine, which is great as you always seem to know where I have left my phone and my keys!

The four of you together keep us going but also break us down at the same time. You my baby, have started to throw some of the worst temper tantrums I have ever seen, and your brothers are demanding in ways only a Mum of multiples can ever understand. However amongst the chaos there are moments of pure bliss. Smiling babies, singing toddlers and a Mummy and Daddy who's hearts are bursting with pride.

Pride for who we are, pride for the family we have built, pride for the struggles we overcame to bring us here.

As you grow up, you'll read more of Mummy's journey to you. Today, I'll write about some of the hardest months of my life, the days where chemotherapy stole all that I knew away from me.

As I write this entry, I am in a happy place, we have all of you, and I have the gift of remission. But during my dark days with cancer, I had neither of those things. I was filled with fear. I didn't have the wisdom and grace that live within me now. I was afraid, I was vulnerable, and I felt very alone....

November 2013

I remember picking up the phone when Uri Masi rang to check in on how I was feeling after my first chemo session. It was week two of my cycle, and the side effects were beginning to fade, she asked how my hair was holding up.

'It seems to be fine I replied, it hasn't fallen out yet, so maybe the cold cap is working.' Together we celebrated another day of a full head of hair. However it was short lived. The very next morning, I ran my fingers through my hair and noticed a large clump left in my hands, slowly I ran my hand through my hair again, a second clump fell out, then a third, there was no stopping it.

I was still unable to raise my left arm, a result of my mastectomy and axillary node clearance (full node removal), so when it came to washing my hair, Daddy had to do the honours. I hadn't realised it at first, but one day after a hair wash, the bathroom bin caught my eye. I looked over into it and saw large bundles of hair, half hidden with tissues. Daddy had known my hair was falling out before I did, but he placed it to one side and kept it from me in a bid to protect me. Knowing that he had to do that, that I was so fragile and vulnerable broke my heart.

As the weeks and months passed more of my hair shed, cold blisters began to form on my scalp and my nursing team advised I stop the cap. But I had held on to two small blocks of hair at the front of my head. If I wore the right hat, it almost looked as if I still had hair, I wasn't ready to let them go so continued to freeze my scalp ahead of each session of chemo.

In time my eyebrows too began to fade, and then finally my eyelashes too. Every time I caught a lash on my cheek I held it tight, I made a wish that this would all be over soon and released it out of the window.

It was during these months that I became the most reclusive and lost my sense of self. I had no idea where life was heading, if there was life to be had at all. I feared my marriage would end. I feared my career would end, I feared that if I did survive this time, one day cancer would return to finish me off. I was hollow. I was empty.

As treatment became more routine, days at The Marden formed the cycle of my life. The Marsden was one of the very few places where I felt safe, where I felt at home, where I allowed myself to feel whatever I needed to feel. Because there, on that chemo ward, I wasn't the odd one out. I felt a sense of belonging, I didn't have to protect anyone.

It was there one day, that a member of my team approached me and asked how I would feel about sharing my story. She spoke of how minorities are under represented in the cancer community. She spoke of a charity that was looking for a face to add to its 20th anniversary campaign. That charity was Look Good Feel Better. I had attended a workshop with them the week before, and was starting to reconnect with myself thanks to the skills and support they had given me.

At this point, I had barely told my friends that I was going through cancer treatment, I hadn't known quite how to have that conversation. Yet this request shifted something inside me. I went home and thought about it, about the words she spoke of representing the unseen faces. How I had searched high and low for an Indian girl like me going through what I was going through. I found just one, my darling Sal who now looks down on us from heaven.

I decided to say yes, and signed up for the campaign. In that moment, and every day since, my entire outlook changed. I was asked to publicly speak of my experiences, and I found that in doing so, I began to heal. The shame and fear fell away and were soon replaced by hope and pride. I've always been so grateful to the team at LGFB, they were the first charity I ever worked with and will be the ones who I hold closest to my heart. They helped me find my purpose and bring me to where I am today.

Eventually, I ditched the cold cap, it became unbearable, and sometimes caused me more pain than the chemotherapy itself. Daddy and I got in to a routine, we knew that the first 2 weeks after treatment were the worst, and the third week was our best so we would plan to do things to break up the cycles. A short trip away, visits to family or friends, sometimes lazy duvet days.

I lost my sense of taste and smell, and my mouth was full of ulcers, so meals out were a little less frequent. I had been gifted a beautiful real hair wig from LGFB and it automatically boosted my confidence. I found the strength to go out when I could, and I no longer felt like the victim that once locked herself in the house.

In April 2014, after 14 doses of treatment, I walked in to the Hospital for my final round of Chemotherapy. I was relieved to reach the end, but filled with fear that the lack of poison in my veins would allow the cancer to return. I was sad to leave my nurses behind on the ward, but curious as to what lay ahead.

There was still much to go through. I had developed lymphoedema, so was under regular review to insure it didn't get out of control. I still only had one breast, so a reconstruction was on the cards at some point, and the final part of my active treatment was still waiting. In May 2014 I began radiotherapy.

Radiotherapy, in my mind, would be the easy part. The part that I would breeze through, the one that wouldn't cause any visible side effects. I was wrong. My body was still tired from Chemotherapy when I arrived at the first of my Radiotherapy sessions. I had 25 session to get through.

Every day for a month and a half, I would drive myself to The Marsden and walk down to the Radiotherapy dept. I would sit on the same chair, outside the same treatment room called Mullard. I would lay on the same bed day in day out. The team would remind me of the breathe sparing technique and I would pray that I didn't ever need to cough or sneeze as they blasted my chest with Radiotherapy.

My tumour was close to my chest wall and on the left hand side. The meant that to move my heart out of the line of radiotherapy, I would have to hold my breathe as the treatment was given. Small tattoo marks on my chest helped guide the team, and also showed me where the radiation was being targeted. Each session would leave me more sore than the one before. Slowly, as the weeks passed my skin began to burn, blisters form, the pain at times, unbearable, but necessary. Fatigue took hold and I would spend hours on end curled up under a duvet.

I met a couple outside Mullard during my first week of radio. Maurice and Jean. They were in their later years and had found new love in one another. They kept me smiling some days they would bicker, and on other days they would share cheeky secrets about how they met. I really looked forward to seeing them each day for the next instalment of the Jean and Maurice show. They were so saddened to know that I had to face cancer at such a young age, they always said how unfair it was for me to lose some of the best years of my life to this disease, and I would tell them that without it, I wouldn't have met them, and they brightened up each day for me.

They were there on my final session of Radiotherapy, they told me to look after my burns and to slow down. To get better and come back to live the best life I possibly could. We kept in touch after treatment, Maurice would send me emails on his own health and remind me of how much I inspired him. I have such fond memories of that pair, they would be over the moon to hear of my life now. How happy and fulfilled I am.

I completed active treatment in July 2014. There had been celebrations both at the end of Chemo and again at the end of Radio. Smiles and laughter to mark what we all thought would be the end of Cancer controlling our lives.

Little did we know then, that this was just the beginning, that the hard work was just about to start....I'm glad we didn't, because in those moments after active treatment, I did allow myself to live without fear, even if it was just for a short while.

Love Always, Mummy xxxx

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