'I can wipe away the tears from my eyes, but I can’t wipe away the pain from my heart.'
Dear Amaala,
This blog entry is so painful to write. The past few months and weeks have seen cancer return to the forefront of my thoughts. I have seen loss, and I am seeing life slip away, painfully slowly, desperately unfair.
I often say that writing about my life and experiences with cancer are some of the toughest entries I make.
Initially I thought that this was because I was ‘over’ that part of my life, that I didn’t need or want to return to those cold dark moments; but of late I’ve learned that it is in fact the total opposite. I avoid writing about the pain and grief of cancer because I haven’t dealt with it. I still carry it, it still haunts me, there is still so much processing to do.
Since sharing my story with Breast Cancer, my inbox is often flooded with people who find themselves facing a diagnosis. Sometimes they are strangers, sometimes friends of friends, and then sometimes, they are my own friends or family. It’s the latter group that breaks my heart more than any other, because these are people I love, people who I want to protect, people who I want to shelter from the trauma that lies ahead. I know I am unable to do any of that, I know that all I can do is offer advice support and guidance, share the lessons I learnt and be present until the end. But when that end arrives so abruptly, when that end is so final, when all hope is lost, what can anyone do to help?
I always feel a level of guilt when a friend passes due to Breast Cancer, I know in my rational mind that I shouldn’t. I know that we each arrive here with our journey’s mapped out, that what is destined will always be. But I do still wonder, why does one person get to live, when another has to die. It seems so unfair, actually it is so unfair. I wish we lived in a place where there was a cure, I wish we could bring them all back.
Right now, you are 27 months old, and in around 2 months time you’ll become a big sister. We’ve had an interesting few weeks. We’ve been to see the babies, but unfortunately you weren’t allowed in the room due to Covid 19 restrictions. In fact, Mummy and Daddy have had to see the babies separately because of new social distancing rules.
We booked a private scan to allow Daddy to see the babies and had hoped our family could be in one room at one time, even if only for five minutes, but sadly it wasn’t to be.
This is where surrogacy can be challenging. The reminder that there is distance and space between those tiny new lives and us as Intended Parents. The reminder that Mummy can not grow them in her tummy, the reminder that despite looking like a conventional family from the outside, beneath the surface there's a lot that is different in our family.
I can’t wait for you to meet your siblings, the reaction to our baby news has been incredible.
When you were growing in Ina's tummy we kept you a surprise, the announcement came after you arrived, so to feel the love of others at this early stage is something new for all of us and it’s quite overwhelming. Having conversations with you about your new role as a Biiiiigg Sister is so fulfilling. Once we led a life where motherhood was a distant dream, now it is our reality four times over. I love the babies that we are yet to meet, I love our family that is slowly growing, I love hearing you say the babies are in ‘Laula's tummy’. I love the life that we have all been blessed with and accept the pain that we had to endure to get to this point.
Last week I had to visit the Royal Marsden, I had felt an abnormality in my boob. Nerves and axiety flooded over me, a reminder of how fragile my existence is, how easily everything can change from a dream come true to a living nightmare.
Fortunately my results came back with no cause for concern, thank goodness for that. I feel strangely at home when I walk through the doors of the Royal Marsden, I still remember the day I walked in for my first round of chemo.
30th October 2013
Unlike with all our infertility appointments, for some reason, when it came to my first appointment at The Royal Marsden Hospital for Chemotherapy, we failed to leave enough travel time! We arrived at the hospital a little later than planned, Daddy and I had a little bicker in the car. I was frustrated that we were late, angry at what was about to happen and took it out on him!
Thankfully, by the time we walked through the doors everything was fine and we were back to focussing on the task at hand – Chemotherapy.
I had spent my spare time in the weeks before this appointment preparing for that day. I had read about nausea and fatigue and had created little boxes of pick me ups to keep by my side when I got home; crystallised ginger, heaps of mints, a sick bag, rich tea biscuits and some lovely creams for my skin if I needed it.
I walked on to the ward and gave my name; we were greeted by nurses who later became friends and advised of how the day would run. Firstly, I would need to have my blood tested to ensure I was all clear to have chemo. Once those results were back, the process would begin.
They tried to insert a cannula into my hand, the plan was to use it to take blood and then to later use it for Chemo too. As many oncology patients find, this part of the process can be very painful, it can be hard to find a vein, a vein can collapse just as the needle is pulled out or the blood simply won’t flow! It took a few attempts and a large bucket of hot water to bring my veins up to the surface, but eventually we got there! After giving a blood sample, Daddy and I left the hospital.
We hadn’t planned to but the nurses informed us that it would take around 1.5hours for the results to be processed and for the pharmacy to prescribe the drugs so we decided to use the time to go drive in to town and get something to eat.
We returned to the hospital at around 1pm and made our way back to the chemo ward. My blood results weren’t back so we waited a little longer. Eventually just before 2pm we got the green light to go ahead and the nurse requested that my drugs were released. A mix up at the Pharmacy meant that the drugs didn’t arrive until 3pm and after much discussion, we agreed not to go ahead with the infusion. The nurses were conscious that we needed to take it take things slowly. We had no idea how my body would react, we needed to pace ourselves, and starting late in the afternoon wasn’t ideal! So we left the ward without achieving much that day, it felt a bit like a dress rehearsal of the real show that would now take place the next day. Daddy and I gathered our things, confirmed our plans for the morning and drove home as dusk began to fall. I felt relieved to have an extra day without feeling awful, but fearful for what the next day would now bring.
The next morning, we were up early, we left the house in good time and arrived at the hospital by 10am. My medication was all ready to go, my bloods didn’t need retesting, the cannula went in first time and everything ran smoothly.
Before Chemo began we fitted my cold cap. I had chosen to use the cap in a bid to save my hair from falling out, a tight cap was strapped to my head, within it, lots of tiny tubes of filled with ice cold water sat against my scalp, slowly but surely freezing my head. The cap was started 30 minutes before treatment began to ensure my head was cold enough before the drugs started to flow. We struggled to get the cap to fit, the nurses joked that Indian women have small heads and require child sized caps! But we strapped it down as much as possible and soon enough I felt like I had constant brain freeze. It was uncomfortable, but I was adamant that I wanted to save my hair, so put up with the pain.
Next came some anti sickness drugs, these were given to curb some of the nausea, a common side effect of chemotherapy. After that it was a dose of steroids. I had never had steroids before and had no idea what to expect. As they were slowly syringed into my arm, I felt like I was drifting away. I couldn’t keep my eyes open; a strange smell filled my nostrils and the voices around me seemed to fade. I tired to speak but my words were slurred. Daddy was worried and asked the nurses what was happening, they assured him that it was a normal reaction to the steroids and not to worry; a short while later I opened my eyes (after what felt like a lovely nap), and was back in to room, ready for Chemo.
The tea trolley passed by and I grabbed a hot drink, the cap was making me feel so cold…the type of cold that goes through to your bones. If I close my eyes now, I can still feel the sensation of the cold water whirling round my head, I can still smell the ward, I can place myself in the exact spot I was in all those years ago.
As we eased into the morning, as the pre-meds were taking effect, I began to look around the room. I smiled at the lady who sat opposite me, and noted a girl take a seat in the chair next to me, she was just about to be connected to the other side of the scalp cooler that I was using.
Janet was an older lady, she was directly opposite me, and about to start her infusion. She chatted away to the nurses and caught me smiling over at her, ‘Is this your first session?’ she asked me. Yes, it is, I replied. ‘You’ll be ok’ she replied. ‘Just take it slow and look after yourself.’
We began to share stories. This was her second run in with breast cancer, thankfully two separate cancers, one in each breast, both localised with no spread. I had no idea what she meant when she told me this all those years ago, but now I do! It means that despite having cancer twice, she was curable on both occasions!
The girl next to me joined in on our conversation. She was young, a bit like me. I took comfort in seeing her there, someone I had something in common with. Her name was Charlotte. She wasn’t as lucky as Janet and I; Charlotte was living with Stage 4 incurable Breast Cancer. I watched her in awe as she got straight to business in her chair, on her own.
She told me about her diagnosis, she spoke of her baby girl and the life they shared, she was diagnosed during her pregnancy. We shared a lot during that first chemo session, and I found a space in my heart for this incredible woman. We became chemo pals; we scheduled our treatment to fall on the same day. We had the same oncologist, we always ordered the same lunch, we shared our fears, we shared our dreams. Having Charlotte next to me somehow made this process more do-able.
Before I knew it, it was time for my infusion. Martina, my nurse, came over to me, with several syringes filled with red fluid. After preparing my cannula, she began to manually inject the chemo into my veins. I distinctly remember this moment and the conversations we had. ‘Why are you doing this by hand and not using one of those machines that everyone else has?’ I asked? The ‘machine’ was actually a pump, and most of the other patients on the ward had bags of chemo attached to it, with a line going into their hands. The use of a pump frees the nurses up to do other critical work on the ward, so I wondered why I had the privilege of my own personal nurse for the duration of my infusion.
‘This particular drug can be quite dangerous if it leaks out of the vein, so we like to keep a close eye on it’, she answered. I guess back then I had no reason to ask more questions about ‘that drug’ or just how dangerous it could be, the years that followed would of course tell me that.
Daddy and Martina were amazing that day. They reassured me that everything would be fine, they distracted me when they could tell it was all getting too much and they left me to rest when my eyes felt heavy.
I have so many emotions that rise inside of me as when I remember that day. Right now, its overwhelming sadness. The chance of developing Heart Failure from Epirubicin, my very first chemo drug was less than one percent, the chance of that failure being as acute as mine, even smaller.
I certainly believe that everything happens for a reason, that I wouldn’t be the Mummy I am today if it wasn’t for Cancer and Heart Failure, but it does still make me sad. Sad that my life is so fragile, sad that I now live with a level of fear that I never knew existed before Cancer entered my life.
I love you darling, Mummy xxx
