Hi, my name is Summer Smith. I am 22 years old. I was diagnosed with Acute Lymphoblastic Leukaemia in March 2017. I was 18 years old when I was diagnosed. My whole world came crumbling down around me. This caused me a lot of anxiety and stress, in a time that was already very stressful.
I had two and a half years of chemotherapy. I lost my hair twice during this period. However, most of the time my hair was growing back. I had a lot of judgement and questions when I would explain I still had cancer. This was all because my hair was growing back. A lot of people only associate hair loss with cancer. People would automatically assume my treatment ended. I thought about shaving it again, just to save the explanation.
During my chemotherapy, I had multiple neutropenic sepsis cases, bacterial infections and even kidney failure. Another thing that is assumed is that you are ill because of the chemo. Although that is the case, most cancer patients also deal with other complications whilst going through chemotherapy. Some of my toughest days were because of the complications. I was in hospital for months fighting these infections. My body was so fragile that I only remember a day or two. I spent most of it sleeping.
My mobility deteriorated very quickly. I ended up in a wheelchair within the first two months. Unfortunately, we did not know what was to come. The steroids in my treatment were cutting off circulation to my distal femurs. In July 2018, I was diagnosed with Avascular Necrosis in both of my distal femurs. This is something I will have for the rest of my life. I can no longer run or jump, as I could easily fracture the bones. I am on high doses of morphine and oramorph, because of the pain it causes me. The hardest part about having avascular necrosis is that I look healthy. Just like the comments about my hair, I have constant judgement when I tell people I am not very mobile. People cannot see or feel the pain I am in daily. The pain makes my life very difficult. It can be bearable some days. However, when the pain really kicks in, I am unable to stand, walk or sleep. It affects everything I do. Just like when I had cancer, I have good and bad days. I am at a point now where there is no other pain medication that can be offered. I am likely to always be on morphine. That unfortunately means my dose is also likely to increase over the years. This is not what I expected my life to be after cancer. Everyone assumes you can go back to the way you were. That is not the case for most of us.
My treatment finally finished in August 2019. I was so pleased to finally ring the bell after such a long journey. I have tried my best to raise awareness on teenage cancers. I hope to spread what life can be like after the treatment ends. Whether you have lifelong side effects, or struggle with your mental health. Just because the treatment ends does not mean your journey is over. It has almost been two years since my treatment ended and I still struggle with my anxiety, stress, mental health and pain. It is a constant battle for me. I never realised how hard life could be after. Sometimes the trauma for the treatment can affect you for a long time.
I found Teens Unite through fellow cancer patients that I met on my ward. Finding Teens Unite was where my journey to finding myself began. The visits to Teens Unite helped me break through my severe anxiety. Being a teenager with cancer can feel isolating. When you join Teens Unite, you stop feeling alone.
I am now starting Venesection because my iron is very high. This means being back in hospital very regularly. I will be having a bag of blood taken every 2-4 weeks to help bring the iron levels down. Unfortunately, my body is not doing that on its own. If we do not have the Venesection, this could cause issues with my organs in the future.
As you can see, I have had a lot of complications and I am still dealing with a lot two years after treatment. I am very grateful to have made it through the chemotherapy. I am now looking forward to my life ahead. Even if it is different to how I expected it.
Here’s to all the cancer patients. No matter where you are in your journey. You are not alone! Teens Unite is a safe space to help find others just like you. If you need anything my inbox is always open.
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Volunteering with Teens Unite has changed my personality and outlook on life. When I hear all the amazing things the teens say about Teens Unite, I can tell they mean every word.
Teens Unite isn't just a charity to me, it was the beginning of restarting my life.
When Elliot started receiving the support of Teens Unite, I could see a change in him straightaway. His outlook on life was becoming positive again and I gained strength from seeing my little boy accepting what had happened and starting to move forward.
I needed help and that's where Teens Unite came in. I believe that everything happens for a reason, and the reason I met Teens Unite was to save my life.
With Teens Unite, I finally realised that I could climb out of this massive hole that I had been digging because I wasn't alone anymore.
If it wasn't for Teens Unite, I wouldn't be where I am now. They have been really supportive and given me the strength to push myself and not give up.