Learning to live with cancer

I wrote an article called ‘Learning to live with cancer’ for my school alumni magazine. It tells our cancer story. I explained how life with cancer is not only possible it can even be great.

The full text is included below:

Learning to live with Cancer

Kate Corney (OP 2003-05) studied History at Queens’ College, Cambridge then took a gap year before working in London as a Conference Producer. In 2012, she got her first teaching job at Brighton College and, a year later, she and her partner Mark moved to Haileybury College in Hertfordshire. In July 2014, their lives were turned upside down when Kate was diagnosed with cancer. They moved home to Emsworth for treatment and to be closer to their families. This is the story of how they learned to live well with cancer.

Living well with cancer sounds like an oxymoron. When someone says the c-word, two familiar narratives come to mind. Firstly, survival; a lump, an operation, radiotherapy, chemotherapy, the all clear, remission. Secondly, defeat; a lump, more lumps, inoperable, a terminal diagnosis, chemotherapy, palliative care, death. For some people this is helpful as their cancer broadly fits one of these frameworks. But for many, including me, it does not. I have been diagnosed with cancer at a younger age than most people but Cancer Research UK now estimates that one in two people in the UK will develop cancer at some point. We’re almost all living with some experience of cancer but too often we are not accepting it, or addressing it, enough.

‘I had been unwell for some time but… ignored it’

In July 2014, I was admitted to A&E at Queen Alexandra hospital. Two days later I was diagnosed with Hodgkin Lymphoma. I had been unwell for some time but, busy teaching 6 days a week at a boarding school, I had ignored it. I had attributed the initial signs – tiredness and weight loss – to stress and overwork. Later symptoms such as night sweats and extreme itchiness, I did not give myself the time to question. By the time I could feel lumps in my neck, armpits and groin, I was petrified and in denial.

Even if I had seen a doctor I would not have been able to articulate my situation. I could not find the words to describe to anyone what was happening to me. I worried about upsetting my friends and family and worried about how they would perceive me. With terrifying numbers of lumps in various locations, I was almost certain I had cancer but I did not know that there are more than 200 different types. I was only vaguely aware of lymphoma which is the general name for the 60-plus cancers of the lymph system. There are two main types; Hodgkin and Non-Hodgkin. With approximately 1,700 new diagnoses a year in Britain, Hodgkin Lymphoma is relatively rare.

The feature of my Stage IVb Hodgkin Lymphoma that finally forced me into hospital was fluid in my chest cavity. An X-ray showed a mere sliver of my lungs remained clear for gaseous exchange so I was progressively being suffocated from inside. On the first night, I was too fragile to be moved to the Intensive Care Unit and they almost lost me. On the second day, I had a chest drain which allowed me to breathe more freely. On the third day, I met my outstanding oncologist and clinical nurse specialist who have been looking after me ever since. It was three weeks before I was well enough to leave hospital as a new cancer patient.

I feared that cancer would bring loneliness and isolation, but I was wrong. Mark and my Mum were with me at diagnosis and have been at every appointment since. I had a hospital room filled with cards, presents, and love and was humbled by the countless gestures of support that I received. Spending time with my loved ones was my lifeblood in hospital and has been ever since.

Chemotherapy, radiotherapy and 20.5 million stem cells

I had my first dose of chemotherapy before I left hospital. Most chemotherapy is administered as an outpatient but the hospital made special provisions so I could receive the drugs on the ward. My cancer was so advanced that the chemotherapy made me feel better instead of worse!  Over six months I had three courses of steadily stronger chemotherapy and one course of radiotherapy. Around Christmas 2014, we learned that none of them were going to cure me so we began preparations for an allogenic (or donor) stem cell transplant.

An allogenic stem cell transplant replaces a patient’s bone marrow and immune system with a donor’s, and the donor and the patient’s immune system must match. A full sibling has a 25% chance of being a match and, for patients without, there is an international register of stem cell donors. I have two siblings, who were both tested, and we were fortunate that my brother Sam (OP 2003 – 07) was a match.

It took six months to medically and psychologically prepare us both for the transplant in June 2015. I spent a month in virtual isolation to protect me while I had no immune system. I was allowed visitors, but only on strict terms. I received intravenous drugs, including ultra-high dose chemotherapy, for the 10 days before my transplant to destroy my immune system.

On the day of the transplant, Sam was connected to a machine which filtered his blood for four hours to harvest his stem cells; then it took an hour for me to receive them intravenously. Ever since, my body has used them to develop my new immune system which is an identical copy of Sam’s. My blood type has changed to Sam’s and my blood cells have Y as well as X chromosomes. If either of us were to leave blood at a crime scene, we could both get the blame!

When I returned home, I had to take special measures to avoid infection. I could not go into any public indoor spaces and had to be extremely careful about eating, drinking and sun exposure. Today my new immune system is strong and I hope it will soon be mature enough for me to be able to receive all my childhood vaccinations again. My Hodgkin Lymphoma has not entirely gone but my maintenance treatment is low-level.

New hair and now new challenges

I’m facing a future with cancer and people have been shocked that I have not crumbled. I did hope and believe in a life entirely free from cancer but, even if I am eventually cured, this will never be the case. What has surprised me is that now I would not want an identity without Hodgkin Lymphoma. Society assumes cancer is always negative; the illness is feared and the patients are pitied. This is dangerous. Cancer stigma drives those with suspicious symptoms to delay going to the doctor and leaves those living with cancer feeling like they have something to hide.

I have never felt ashamed of my cancer. I lost my hair twice and my decision to wear my baldness without hats, wigs or scarves was liberating. It did sometimes attract public comment but I was always happy to talk. My hair has now returned with full force. The wavy bob of my pre-cancer days is long gone and I have a head of corkscrew ‘chemo’ curls.

Cancer is, long-term, as much a mental as a physical condition. I am learning to adapt my life and the lives of those around me to make permanent room for cancer. Macmillan, who have given critical support throughout my journey, are providing me with counselling. At a time of stretched NHS mental health services, I’m extremely grateful for this help which was provided within weeks of my referral.

I have remained as active as possible throughout my journey. When I was first admitted to hospital, I could not climb stairs and spent a month in a wheelchair. Since I regained my basic strength, I have not looked back. I’ve walked around Emsworth millpond, along coasts, over the South Downs and up mountains. I regularly run 5k at our local Parkrun. I cycle, I sail and this winter we went skiing for the first time since my diagnosis.

I hope that it is possible to work and have cancer. After two years away from work, I am planning to return to Haileybury at some stage this year. Much of my identity since my early teens was crafted around intellectual achievement, but the extreme focus that I placed upon success was unsustainable. I prioritised work over friends, family and, ultimately, my health. I have found many ways to feel productive, useful and fulfilled without work. I kept a blog in the first year of my journey and am now expanding it into a book. I paint, read, and listen to podcasts or Radio 4. I am volunteering at Petworth House and in the History department at PGS. I look forward to going back to work but I will not let it define me again.

I have shared my story with the hope that people will find it useful and learn from my experience. Learn not to ignore troubling symptoms or put off consulting a medical professional; learn how to talk about cancer. Living with cancer is not only possible, it can even be great. It would be misleading to suggest it has not, at times, been indescribably challenging but it has also been enriching. Today, I understand the importance of balance, of living in the present, but most of all prioritising friends, family and love. I’m not just a teacher, I’m not just a cancer patient, I’m both of those things and more. I am not ill; I am Kate and I am living with cancer.

 

Information Boxes:

LYMPHOMA

Lymphoma is the most commonly diagnosed cancer in the under 30s. Hodgkin Lymphoma is more common in people aged 20-34 and 70-79. Lymphomas, like all cancers, come with many symptoms and can be difficult to diagnose.

‘PITS’ highlights the four most common lymphoma symptoms.

  • Persistent lumps (usually in the neck, armpit or groin)
  • Itching
  • Tiredness
  • Sweating (particularly at night)

These symptoms are most often due to other causes but if you are at all concerned contact Macmillan (www.macmillan.org.uk), the Lymphoma Association (http://www.lymphomas.org.uk) or your GP.

 

STEM CELL DONATION

Two thousand people in the UK need a stem cell or bone marrow transplant every year and it is usually their last chance of survival. Two thirds will not find a matching donor in their families and will require an unrelated donor. Becoming a registered donor is simple and signing up requires only a spit sample. These four organisations recruit potential donors in the UK.

 

MACMILLAN CANCER SUPPORT

Macmillan say ‘No one should face cancer alone’ and have offered essential support to me and my loved ones throughout our cancer journey. In May 2015 Macmillan came to Emsworth to document our story. Our pictures, video and interviews can be found at http://www.macmillan.org.uk/information-and-support/resources-and-publications/stories/kate-hodgkin-lymphoma/kate-support.html.

 

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