Emotional support

Sophie asked for a grant to allow her to buy her an Apple Mac laptop so that she could study the British Sign language course whilst being in hospital receiving chemotherapy. This enabled her to think about her future and what she wanted to do for her career. She had given up thinking of a future but this has now given her a purpose after spending so long locked away in hospital.

My Journey

By Sophie Houghton Hinks

It all started back in 2014 when I was studying for my GCSE’s. I was constantly sick. After each meal I would have horrendous pain in my upper abdomen and I would then vomit. I went to the doctors where I was then diagnosed with Primary Sclerosing Cholangitis (PSC), a chronic auto-immune disease which affects the liver, bowel and colon. This then later caused the failure of my liver. I was then hospitalised in December 2016. I became incredibly ill to the point where I was put on the urgent liver transplant list, my brother, Daniel, did tests to become an organ donor and give me half of his liver, as the liver is the only organ to regenerate. However, before Daniel was able to finish the tests I was lucky enough to receive a call at 2am on the 9th May 2017 to say they had a liver which was suitable for me. After nearly 14 hours of surgery I came around to see my family standing around my bed in ICU.

My recovery was fairly quick. I was out of hospital after 13 days and back at the gym 2 weeks after coming home, even though I still needed assistance sitting up in bed due to losing all my abdominal muscles. I was determined to gain some cardiovascular fitness back. I was coming on leaps and bounds; however, I then started getting ill again. Viral meningitis made me very poorly and I was taken back into hospital several times. I started getting other symptoms for which I needed a colonoscopy. However, when I arrived at the hospital, the doctors were not happy to proceed as my blood was too thin and I had lost too much weight. My doctor came and saw how unwell I looked and decided to admit me into hospital again. I had clostridium difficile (C-Diff), so they treated me with IV anti-biotics, but the abdominal pain was continuing to cause me issues. The doctors were ready to send me home, even though I was still in agonising pain with my stomach, when an F1 doctor ordered an emergency CT scan and X-Ray one night when I was particularly in a lot of pain.

This CT scan revealed I had Post-Transplant Lymphoproliferative Disorder (PTLD). I was rushed up to London to be at the Royal Free Hospital where I was put onto the private ward because they had no cubicles on the normal ward. This is when I knew it was serious. It was the day after I arrived in London that I found out I had cancer. I was having lots of different treatments such as blood transfusions, and IV infusions and I had no idea what was going on. I remember just feeling numb. I’d had liver failure this year and surely, I couldn’t have more serious health issues. Little did I know at the time but the medications I was on to stop my body rejecting the new liver actually caused me to get lymphoma or otherwise known as PTLD. During my time at the Royal Free, my doctors liaised with specialists of PTLD at University College London Hospital. Dr Stephen Daw took over my care as he knew more about PTLD than the liver team at the Royal Free. This is when I was transferred to UCLH.

UCLH is an advanced hospital which is much larger than my local hospital in Poole. It scared me at how ill I actually was. T12 North, otherwise known as the Teenage Cancer Trust Ward, is an amazingly warm and inviting place. The facilities are incredible, there is a huge kitchen, brightly coloured themed walls throughout the ward and a day room which has space for you to sit down and eat with your family or even play games. This made me feel slightly better about being diagnosed with cancer. I am around people my age and also around people who understand what I am going through. It wasn’t long after I arrived at UCLH that they started doing various tests to see what type of chemotherapy I would need. CT scans, PET scans, chest X-rays were all the types of tests I was used to; lumbar punctures however were something I wasn’t used to. This is when the doctors insert a large needle into the spine and retract spinal fluid. I’d had a couple of lumbar punctures before when I had viral meningitis, but the doctors were telling me I’d have to have them more regularly. This scared me because I knew what pain you can suffer after having a lumbar puncture, including migraines and back pain. But it had to be done because the doctors were not sure if the cancer had got into my spinal fluid and brain. White blood cells were present in the lumbar puncture and the MRI of my brain showed scaring. It is not clear whether this was caused by the viral meningitis or whether the cancer had caused it. This then meant that I had to have the more invasive chemotherapy called methotrexate; both intrathecal (directly into the spine) and through my PICC line.

The side effects of methotrexate are more intense and for me I have to have 50% dosage as my liver won’t be able to cope with 100% as it is too toxic to the body. My chemotherapy plan is very experimental as I am having two types of chemotherapy, the methotrexate and R-Chop. I have found that I have suffered badly from the side effects from both types of chemotherapy; mucositis together with muscle and bone pain. These are the main things I suffer from. But I also had a bad reaction to the GCFS injections which are injections you have 7 days after having the chemotherapy to reboot the immune system. My white blood cells started rapidly increasing to the point they couldn’t exit the bone marrow quick enough, so my bones began to swell.

The pain started in my lower back as cramping pains, my brother tried to massage the pain away but the pain just got worse and worse. I was awake all night and when morning came I couldn’t physically move my legs. At first the nurses were so perplexed by why I was in so much pain until one nurse, who had seen it before in a patient knew what it was. The intensive care nurses were called down to help the nurses on ward T12 North with my treatment. I was put on a high dose of midazolam and oxycodone fed by a syringe drive.  The high dose of medication caused me to become semi-conscious for around 3 days. As the dose was reduced I became more alert and was more conscious of my surroundings. I was so confused about what had happened. Not to my surprise my mum and brother were very upset as they were so concerned about me as I had been unresponsive. I was then discharged for Christmas to my delight.

After my next batch of chemotherapy, I was given a different type of injection called Lenograstim to avoid the reaction I had with the previous GCFS. I then found myself in hospital again on New Year’s Eve with sepsis because I became neutropenic. The injections did not work in making my immune system reboot. Not the way I planned to see the new year in, another New Year spent unwell. Methotrexate is the chemotherapy that gives me the worst side effects, I often get severe nausea, mucositis, muscle and bone pain, and burning sensations in my feet and hands. This is what makes having cancer the worst. Everyone thinks it is the sentence of death that often comes with cancer that is the worst, however it is not until you start treatment that you realise that the hardest parts are the side effects of the chemotherapy.

It is the honest truth that having cancer really takes a toll on you; not just your physical body but on your mentality. It is difficult worrying about things that people forget you have to deal with on a day to day basis, such as paying the mortgage, tax, food, water and accommodation. Cancer has hurt my family more than it has hurt me. I just sit there and have medication pumped through me; I watch my hair fall out. My mum has had to give up her job because she has had to take so much time off work to look after me, but somehow she has managed to gather the money together at the end of each month to keep a roof over my head. Charities have been amazing in helping her being able to do this, but accepting charity is one of the hardest things me and my family have ever had to do. I feel that I should prove to people who have donated where the money is going and that we aren’t wasting their money on stupid things. Also accepting the fact that you need charity funding to live hurts your pride, not in an egotistical way, but it feels as if you’ve failed at doing one thing a human can do. Survive.

I always dreamt of becoming a nurse. I was 18 months through my A-Levels and applying for university when I became ill. I then found out that I could no longer do nursing because of my immune suppression drugs and being around infection was too high a risk of becoming ill again. It broke my heart. I had worked so hard to do well and it really hurt to have it pulled from beneath my feet so easily. Cancer can break people, but I was once told that, no matter how hard life gets sitting in a room and locking loved ones out, it won’t change the fact you have cancer. Instead, if you go out and do something positive, that day will be slightly better than the day you were broken by cancer and therefore you never need to feel that broken again.