‘Embrace uncertainty, some of the most beautiful chapters of our lives, won’t have a title until much later.’
Dear Amaala
I wish I had found, and been able to embrace this quote during my IVF journey. Those weeks of my life were so difficult. Everything was so uncertain.
What would chemotherapy do to my body? What would cancer do to my life? Would I even have a life? What would IVF do to my body? What would this process involve? Was I really in the right space to start creating a new life?
Fortunately for me, a feeling within my gut lead me to make a series of decisions which would indeed give rise to some of The Best chapters of my life. The chapters that involve you.
Right now, we are still in lockdown, we as a family have been disconnected from the world for almost four months now, we are finding our flow and enjoying this incredibly precious time together.
There were times in the past where I wondered if I would live to see 2020, there were times when I couldn’t envisage having a child by 2020, there were times when
I thought Daddy would have left me by 2020.
Yet, here we all are, in this place together. A unit, my family, my dream come true.
So whilst I fully acknowledge that our World is so uncertain right now, while I accept there is so much pain and suffering, I understand the amount of work that still needs to be done for now, I choose to see the blessings. I choose to be grateful for the micro environment within the four walls of our home. The love, joy and happiness that we share.
Don’t get me wrong. Mummy and Daddy have bickered more than ever before, you've pushed more boundaries than before.
I’m pretty sure that you said the word ‘shit’ a few weeks ago, because frustration causes more cursing than there has ever been before. But that is all fine, I accept it all, I welcome it all, because these days were so uncertain six years ago.
9th - 11th October 2013
That night after returning from hospital, I had arranged to see Neelam and Emma. We went to the local theatre to see a Grease sing-a-long, in fancy dress of course. I didn’t know it at the time, but these two friends would be the ones to carry me through some of the darkest times of my life. Our catch up that day was the first of many. The little things that they each put in my diary to break to monotony of treatment.
Emma would come for long chats, slow dinners and housecleans. Neelam would come with lessons on mediation, teachings on spirituality and forgiveness, books on diet and ill health…..lessons on how to recover. The following morning my new reality hit. It was the morning of my 34th birthday.
A reminder that life now, was not as it was. That this would never be the birthday I had planned, that everything was currently out of control.
Daddy woke me up and I came downstairs to the kitchen to find he had decorated the table and laid out lots of presents for me. We opened them together as we sipped on our tea. Later that day he took me to Alexander House for Afternoon tea which was beautiful.
I remember sitting in the grand open space, looking around and thinking, ‘From the outside, this must look like romantic getaway.’ A young couple, sipping champagne, eating scones, chatting away. The reality so was far from it. Behind the plastered smiles were broken hearts, behind the general chatter were conversations about infertility and chemotherapy, behind the bright eyes lays a world of sorrow.
We returned home for a slight rest and to catch up with the family, and then went on to have dinner at a local Thai restaurant.
That night as we ended my birthday celebrations, I sat down with the medication box that we had put together for the coming weeks. I took out a tablet of letrozole and swallowed it with some water. Next, came the first of many injections. I pulled out the Gonal-F pen and held it for a moment. This stick of medicine contained a follicle stimulating hormone, a hormone that would help my ovaries create eggs, eggs that would (hopefully), be collected, fertilised and stored in a freezer.
Tiny little cells, which would one day multiply and divide, giving rise to new life. I knew there were risks, I knew this process would also be increasing the oestrogen levels in my blood. I knew that my tumour scored 8/8 on the oestrogen receptive scale. Fear rose within me, the fear of IVF, the fear of chemo, the fear of the cancer getting worse. These fears were never far away and holding this injection in my hand brought them all bubbling up.
Tears began to flow as I took the lid of the syringe and prepared to inject. I asked Daddy to play some music to take my mind of things, and then, as quickly as I could I stuck the needle into my stomach. I cried a little more; to start this process on my birthday seemed so cruel, was I not allowed just one day off, just one day to celebrate my life, just one day to be me?
The next two weeks were filled with daily injections, frequent blood tests and some internal scans. We found ourselves back in the waiting room at Bart’s hospital a number of times. Each time we attended an appointment, questions were asked around our funding position.
Who was going to pay for this treatment?
Behind the scenes I had been working to find a resolution. I had read Government guidelines (NICE) on how infertility and chemotherapy should be treated. The guidelines stated that a woman without children, undergoing IVF for fertility preservation did not have to meet standard IVF criteria, that they should be funded given the effects of upcoming chemotherapy. Yet there I was, on the other end of the phone, hearing again from my GP that my funding request had been declined.
I wasn’t prepared to let this drop. I had no control over cancer, chemo or their effects, but what I could control was how I dealt with red tape. I searched for contacts at my local Clinical Commissioning Group (CCG), I wrote to each of them, full disclosure on all that was happening to me. I sought out my MP, and wrote a letter to him. He was holding an open day in the town centre and I decided I would take my issue to him. I remember it clearly. I struggled to get dressed, my breast wound had become infected and was causing me pain. The cording in my arm still restricted my movement severely. The IVF drugs were making me feel like I belonged on another planet. However, this was important, so I dragged myself out of the house to meet him.
I shared my story with him, told him how sad it was that a woman with cancer had to beg for funding in this way. Why was I less deserving than an otherwise healthy couple who were trying for a baby? He promised to speak to the team at the CCG and email me with their response early the following week. #
That week my inbox was busy, emails from my GP, from the CCG from my MP. Finally, some movement. There was no immediate outcome, but I took comfort in the fact my case was being urgently re-reviewed. The activity distracted me from the side effects of the IVF drugs and the Chemo countdown that was still ticking away.
On the 21st October 2013, I injected myself with Ovitrelle. This was our ‘trigger’ injection. This triggers ovulation, the release of eggs from the Ovary. However, in IVF, before the eggs are released and begin to travel down the fallopian tubes, they are collected, in hospital, under sedation. We woke early on the 23rd October to get to the Hospital for our morning egg collection. I was nervous, there was a lot of pressure for this to work, it was our only shot at creating embryos before my ovaries could be permanently damaged by chemotherapy.
We hadn’t heard back regarding funding, so I called down to Daddy, to remind him to take the credit card. We were painfully aware that today, there was no more buying time at the Hospital, that today we would have to make payment for our IVF treatment. I went to the bathroom for a shower and decided to check my emails one last time. As I opened my inbox, the following message was the first I read:
‘Dear Kreena,
Just a quick note to inform you that we have agreed to fund your procedure. The formal process and details are being followed up. I hope all your treatment and recovery goes smoothly. Best Wishes……’ I couldn’t believe what I read, all those efforts were rewarded. Suddenly I felt lighter, one of the burdens I was carrying had been lifted. I shared the news with Daddy, and we drove up to Hospital relieved that there was one less thing to worry about.
We arrived before 7am, slightly tired and waited to be shown to my bed. This procedure was so different to the mastectomy I had undergone a few weeks before. There were no soft furnishings, everything was clinical, the contrast between a private facility and an NHS hospital very apparent. My bed was on a ward with five other beds. Naively I had been expecting my own room, I didn’t think about the privileges I had been granted thanks to my private healthcare from work.
I began to undress and put on my surgical gown. Everything started to feel very real. All the injections, the drugs, the panic, it all lead to this, so much pressure for my body to have responded correctly.
Daddy went for a walk as I was taken to theatre. I wondered what was going on in his head. He too must be feeling some sort of pressure. He had to provide a sample to fertilise any eggs that were collected. If anything went wrong on his end, all that I had put my own body through would have been in vain. This time, we were in this together, both of us feeling the pressure on our bodies to perform.
I remember there being about 5 people in theatre. I was told that I wouldn’t feel pain, but that I may feel discomfort. A nurse sat beside my head and told me that she would be controlling my sedation. A combination of gas and IV sedatives.
The procedure didn’t take too long, I was back at my bed in around 35minutes. Daddy was waiting for me. I felt uncomfortable, but not in pain. My mind immediately jumped to the next thing on my ‘To Do’ list. Chemotherapy was due to start within a few days. The darkness returned. My emotions were constantly up and down. One minute I was happy and peaceful, the next I was erratic, angry and afraid. Daddy went to provide his sample, and we carried out the last bits of paperwork. As I got ready to leave the hospital, Daddy went to organise refunds for the money we had spent and ensure the funding from our CCG was now in place.
A little later we got in the car and drove home. I woke the next morning with bleeding and stomach cramps. I couldn’t stand up, the pain was intense. We called the hospital, they thought I may have picked up an infection and prescribed some antibiotics.
The following morning I received a call from an Embryologist at the Hospital. I was in one of my dark funks and didn’t want to talk to her. She was so cheery on the other end of the phone. ‘Hi Mrs Dhiman. I just wanted to let you know that we collected 13 eggs from you.
One broke ahead of fertilisation but 12 successfully fertilised. We lost one during the freezing process, but we still have 11 on ice waiting for you. It’s a great number. I’m so happy for you and wish you the very best for your upcoming Chemotherapy.’ I barely said a word, I replied ‘Thank You’ as she ended the call and felt tears stream down my face.
I questioned what we had done. I had just been told that we had taken the first steps towards creating a life, yet here I stood, days ahead of chemotherapy, hoping that the drugs would help save my own life. Was the IVF a foolish move? What if I didn’t survive cancer to ever see those cells become babies, what if it was all done in vain? I’m sorry I didn’t celebrate those very first moments of your life Amaala, my head was foggy, my heart was heavy, my mind was distracted by all that lay ahead.
Love Always, Mummy xxx