On the morning of Maisie's last treatment I expected to feel absolutely joyous. I expected to feel relieved, happy and utterly proud. But the truth is, while I did feel all these things, they were tainted with fear. Over the last few weeks I had begun to realise that this journey wouldn't end with Maisie's last treatment, that this whole thing wouldn't be over, despite what everyone felt the need to tell me. Yes, this day would mark the end of treatment, but with that it also created a starting line for another new way of life. A life after cancer. A life that had been written for us. A life that I didn't know how to live.
With any trauma or tragedy there is always an aftermath, a physical and psychological clean up, a time for rebuilding and reforming. I knew that following treatment we could help Maisie rebuild her strength, we could nurture her, care for her and help her grow. We could help make up for all the things that she has so far missed out on in her life and give her the life she deserves. In terms of her emotional well being, well this is where I am sometimes thankful that Maisie is so young. She should hopefully never remember this stage in her life and will only know of it through the way in which her daddy and I tell her when she is old enough to understand. I hope that we can tell her in a way where she does not fear what has happened to her, or feels saddened or angered by it. Instead I hope that she sees the amazing strength and courage she has within her and the resilience that her body and mind has. I hope she holds the knowledge that she fought hard and won, the realisation that if she can do this, she can do anything. I am determined that Maisie will know this part of her life is not going to be its entirety. Cancer is not going to define who she is, cancer is only going to be a chapter in the very long, well rounded and accomplished story of her life. I hope that knowing what she has been through doesn't change her in the way it has changed me.
With all that said, on the morning of her last treatment I couldn't allow my own thoughts in. I could only focus on Maisie and what this day meant for her. Our consultant had told us the week previously that although the central review had still not come back from Cardiff, the local team had had another look and the percentage of blastema had been reduced. Therefore, it was highly unlikely the central report would be any different. So for Maisie, today was momentous. I allowed myself to embrace the fact that today was the last time she was going to be injected with toxic chemicals, it was the last time she would have to endure the sickness and tiredness that they inflicted upon her little body. For her, today would be the end, and I was beyond relieved for her. My heart was singing for her. She should never have had to go through this at all but at least after today it be over for her, at least after today she could have a chance at a normal life, a life that she should have always had.
When our consultant called us in to see him he asked us how our week had been, the same way he does every week. However, when I looked at him I thought there is something not right with him today. He seemed different; he seemed tired or annoyed, or that he was having an off day and I wondered what difficulties he was facing. But, I went ahead and explained how Maisie had had an extremely tough week, and that I was so glad today would be the end because she was getting worse with every passing week and I couldn't watch her go through this anymore. As I said that I remember smiling. I smiled because that would be the last time we would have to have that conversation, it would be the last time I would have to explain the impact chemotherapy was having upon my daughter. Oh how good that felt. At that moment I couldn't quite believe that we had made it to that point. As I was speaking the consultant had pushed his chair out from his desk and he had leaned forward, resting his elbows on his knees and he bowed his head slightly. There was definitely something wrong with him today, his entire demeanour was different from what I had ever saw of him. When I finished speaking he told us he had received the central review from Cardiff and then he began to flick through some pages on his desk. He started off by saying that there was a consensus agreement in that the tumour had no excess blastema and no anaplasia which confers an intermediate risk disease. It was the words we wanted to hear, it was the words that made Maisie's treatment plan come to an end. However, I wasn't delighted to hear them. Instead of jumping up and down with joy I looked at my husband who had a look on his face that was telling me he was on the same page as me. It was saying, I have heard what he said but there is something else he needs to tell us. It then dawned on me that our consultant wasn't having an 'off day', he wasn't having a personal dilemma or internal issues, he was actually about to drop a bombshell that would blow up and shatter the joy we were supposed to feel. I turned to him and said, 'I sense a "but" coming'.
That's when the bomb dropped. 'Yes, there is a 'but". The central review assessment claims that the disease had found its way into the renal sinus of the kidney, therefore upstaging the cancer from stage one to stage two. He explained that due to these new findings they would have to adopt a different treatment plan for Maisie. So instead of today being her last treatment she would actually need an additional 6 months of chemotherapy, another 24 weeks of toxic drugs. At that I cried. I cried and cried and cried. All I remember after this is my husband gripping my hand and the consultant rubbing my arm. I'm not sure what else was said in that room, all I could think about was my darling girl. How she would have to suffer for another 6 months, how she would have another 6 months of her childhood stolen from her. How she would have to continue to miss out on play dates and baby classes, not be allowed to go swimming or shopping with her mummy, how she would spend another 6 months living in a bubble, isolated and cut off from normal life. Any parts of my heart that begun to heal were tore apart again. I was devastated. Completely and utterly distraught. It didn't feel appropriate to cry in the clinic in front of all the other families but I couldn't control it. The tears wouldn't stop, they were coming too fast and hard and I felt powerless to stop them. Getting that news had taken me right back to that first day when I was told to expect the worse; cancer was once again taking over our lives and I could do nothing to stop it. I started to feel ridiculous for taking photos of her that morning, for marking the day, for believing that this was it for us. For thinking for one second that we had the upper hand over cancer.
On the drive home from hospital no one really spoke. None of us had the words to comfort each other. There was nothing anyone could say to make any of this better. For the rest of the day I couldn't even look at Maisie without crying. Each time I looked at her beautiful face and that big smile I crumbled into pieces. My little girl was beautiful, she was only ten months old, she was loved beyond measure, she was happy, bright and incredibly funny, she brought joy and love to everyone who knows her and she deserved so much more than what she was being given. It was so unfair. So ridiculously cruel.
Putting Maisie to bed that night I felt defeated. I was drained, exhausted and cried out. But looking down at her I knew that the next morning she would wake and go about her day as normal. Tired or not, sick or not, with cancer or not, she was going to continue to live life the way she always had; full of vibrancy, full of determination and with a smile on her face. I knew that despite the news we got that day I needed to embrace Maisie's attitude. So the following morning before I lifted my girl from her cot, the shield that begun to slip down went straight back up into its protective position. I was allowing cancer to win that battle because I was ready to again put one foot in front of the other, take each day one day at a time until Maisie can finally win the war. Because I knew that one day she would. One day, she would be cancer free.
Wendy.
With any trauma or tragedy there is always an aftermath, a physical and psychological clean up, a time for rebuilding and reforming. I knew that following treatment we could help Maisie rebuild her strength, we could nurture her, care for her and help her grow. We could help make up for all the things that she has so far missed out on in her life and give her the life she deserves. In terms of her emotional well being, well this is where I am sometimes thankful that Maisie is so young. She should hopefully never remember this stage in her life and will only know of it through the way in which her daddy and I tell her when she is old enough to understand. I hope that we can tell her in a way where she does not fear what has happened to her, or feels saddened or angered by it. Instead I hope that she sees the amazing strength and courage she has within her and the resilience that her body and mind has. I hope she holds the knowledge that she fought hard and won, the realisation that if she can do this, she can do anything. I am determined that Maisie will know this part of her life is not going to be its entirety. Cancer is not going to define who she is, cancer is only going to be a chapter in the very long, well rounded and accomplished story of her life. I hope that knowing what she has been through doesn't change her in the way it has changed me.
For me, the realisation of what we had all been through over the past ten weeks had begun to sink in. It became apparent to me that throughout this entire time I had been self protecting. I had been shielding myself, I had been allowing my mind and body to run on the adrenaline of the situation. I was putting one step in front of the other, only feeling things on a level that I knew I could manage to allow myself to keep moving forward, doing what I had to do to get Maisie through this fight. With the "difficult part" almost over now, with the battle almost won, the shield started to come down and I was feeling things on a whole new scale. I could no longer look back on the past ten weeks and think about it logically or in matter of fact, I could only see the fear, the worry and the devastation that was there. I could only feel pain. Every time I thought about it I broke. I know that for me, ending treatment was not going to be the end of this cancer process. For me, it was only the start of actually dealing with it. I knew that for the rest of Maisie's life I would worry for her, I would fear a relapse. Every time she had a blood test, a scan, an x-ray I would be ready to hear the worst. I hope over time this worry will lessen but I know that it will never fully go away. You see, what all this has done to me is show me that life is hugely unpredictable. You are healthy until you are not, you are alive until you are not. The unthinkable had happened. My little girl was diagnosed with cancer at only eight months old. Her life was compromised, her life had to be fought for. The fear of loosing her is something I cannot explain, its a feeling that has no words to describe, and I'm worried that this fear will follow me the rest of her life. How do you live with that?
With all that said, on the morning of her last treatment I couldn't allow my own thoughts in. I could only focus on Maisie and what this day meant for her. Our consultant had told us the week previously that although the central review had still not come back from Cardiff, the local team had had another look and the percentage of blastema had been reduced. Therefore, it was highly unlikely the central report would be any different. So for Maisie, today was momentous. I allowed myself to embrace the fact that today was the last time she was going to be injected with toxic chemicals, it was the last time she would have to endure the sickness and tiredness that they inflicted upon her little body. For her, today would be the end, and I was beyond relieved for her. My heart was singing for her. She should never have had to go through this at all but at least after today it be over for her, at least after today she could have a chance at a normal life, a life that she should have always had.
That's when the bomb dropped. 'Yes, there is a 'but". The central review assessment claims that the disease had found its way into the renal sinus of the kidney, therefore upstaging the cancer from stage one to stage two. He explained that due to these new findings they would have to adopt a different treatment plan for Maisie. So instead of today being her last treatment she would actually need an additional 6 months of chemotherapy, another 24 weeks of toxic drugs. At that I cried. I cried and cried and cried. All I remember after this is my husband gripping my hand and the consultant rubbing my arm. I'm not sure what else was said in that room, all I could think about was my darling girl. How she would have to suffer for another 6 months, how she would have another 6 months of her childhood stolen from her. How she would have to continue to miss out on play dates and baby classes, not be allowed to go swimming or shopping with her mummy, how she would spend another 6 months living in a bubble, isolated and cut off from normal life. Any parts of my heart that begun to heal were tore apart again. I was devastated. Completely and utterly distraught. It didn't feel appropriate to cry in the clinic in front of all the other families but I couldn't control it. The tears wouldn't stop, they were coming too fast and hard and I felt powerless to stop them. Getting that news had taken me right back to that first day when I was told to expect the worse; cancer was once again taking over our lives and I could do nothing to stop it. I started to feel ridiculous for taking photos of her that morning, for marking the day, for believing that this was it for us. For thinking for one second that we had the upper hand over cancer.
On the drive home from hospital no one really spoke. None of us had the words to comfort each other. There was nothing anyone could say to make any of this better. For the rest of the day I couldn't even look at Maisie without crying. Each time I looked at her beautiful face and that big smile I crumbled into pieces. My little girl was beautiful, she was only ten months old, she was loved beyond measure, she was happy, bright and incredibly funny, she brought joy and love to everyone who knows her and she deserved so much more than what she was being given. It was so unfair. So ridiculously cruel.
Wendy.
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