I had aggressive treatment for a rare ovarian cancer in my late teens, and consequently experienced the deaths of people close to me who I had met through the disease. This has had a big impact on me and opened many different doors in my day-to-day life. Eight years on, at 26, I’m still experiencing side-effects and recently had another operation. This experience has thrown up some questions which ‘Red Lipstick & Catheters’ will look into.
‘How to be ill and also youthful and feminine?’, ‘How to maintain a relationship if your body is damaged?’, ‘How to build a career when formative years have been occupied with illness?’, ‘What does ambition become?’ ‘How to create from death and trauma?’, ‘How to produce narrative art from experiences which are too far-reaching to narrate?’ are a few examples of relevant questions. Read this page for an outline of the events which led me to consider these things.
I would like to dedicate this page, in particular, to the memory of my friends Tom Buckley and Julia Cleves.
Cancer in young people
Please visit the Teenage Cancer Trust for detailed information. Young people change physically all the time – growth and hormones mean cancer can spread quickly. Cancer is rare in young people – only 0.6% of all cancers arise in 15-24 year olds. Symptoms can be missed amidst other physical changes and it can be hard to diagnose. Survival outcomes will also be affected by delayed diagnosis.
As described by Cancer Research UK in 2008, the most common cancers in young people aged 15 to 24 are: skin cancer, lymphoma, bone cancer, brain tumours, leukaemia, testicular cancer and ovarian cancer. In 2011 the Teenage Cancer Trust found that: ‘one in four (24%) teenage cancer patients have to visit their GP at least four times before their symptoms were taken seriously or they were referred to a specialist. In Scotland nearly half (40%) have to visit their GP four times or more before being referred’.
A Brief account of Olivia and Illness
Anyone with experience of health problems will know that a general term like ‘cancer’ doesn’t describe the effects of a disease. I soon learnt that each person’s disease means something different. In cancer for example, the only universal biological facts are:
- The disease is caused by an uncontrolled division of abnormal cells in a part of the body.
- A malignant growth or tumor results from such a division of cells.
Beyond this, the manifestation, outlook, knowledge and treatment of a diagnosis is entirely unique. My diagnosis was very rare (fewer than 300 cases are recorded worldwide) and aggressive indeed, called ‘small-cell hypercalcaemic carcinoma of the ovary’. At removal, the tumour was the size of a football because it grew very rapidly. This occurred in December 2004 when I was 18, shortly after I had finished my A-levels and left school. I was lucky that it was correctly diagnosed as this cancer has often been misdiagnosed, contributing to its very high mortality rate. This took three weeks and the sample was sent to three different laboratories. Oxford was the place in which it was identified.
Little knowledge seems to exist about this disease, but here is a link to a page which is aiming to raise awareness of my diagnosed disease, in memory of another patient. I was incredibly sorry to read her story.
It’s a very sad thing to ‘google’ this disease, because it has had such a horrendous prognosis. However, as I will show when I describe my treatment, I hope experimental treatments are leading to progress and outlooks are changing. I have learnt that each case is different, so statistics can be disproved.
Treatment progressed as follows:
December 2004: Laparotomy at Northampton General Hospital. January 2005: Referral to the Royal Marsden Hospital leading to residential high-dose intensive chemotherapy administered through a central intravenous device: a porta-catheter, spread over a period of six months. As cycles of chemotherapy are multiplied, the side-effects worsen disproportionately as the poison accumulates in the body. My treatment had two extra months of treatment added onto the usual maximum of four. By the time I finished, my body was in real danger of shutting down as toxicity reached dangerous levels. I was surviving on blood transfusions and salts infusions. In the last week I was so weak I was unable to open envelopes, despite the fact that I am an extremely stubborn and determined character and am now ‘used’ to pain, as much as that is possible. I say this to try to illustrate the reality of some current treatments.
The severity of the treatment was unusual but necessary as the diagnosis had at least a 90% mortality rate at the time and treatments are still being tested – the strongest possible treatment is the only way to improve the prognosis, but this does mean that the treatment itself can kill the patient and creates constant pain, indescribable toxic nausea, vomiting and the poisoning of cells through the whole body. When I had treatment, we couldn’t predict the outcome with statistics because they didn’t exist. But my only chance of survival was to risk it. I was young and generally fit, so we hoped for the best. It was extremely grueling and disabled me for a significant period of time, but I was lucky and eventually recovered. No two treatments are the same and each body experiences different side-effects.
There are many side-effects and complexities to the treatment but it would be very confusing to list them here. Suffice to say, this treatment can be lethal and severely damaged my body so an initial recovery time of one year once treatment finished followed. I was cared for and supported by my parents at home and, occasionally, back in hospital. Since then I have had multiple operations and investigations to check for disease and to treat problems with scarring. I also experienced complicated appendicitis. The appendix had been pushed into an atypical position by the ovarian tumour and the infection was misdiagnosed. This consequently became life-threatening. This is an example of a complication caused by previous disease, a well-known feature of geriatric medicine but perhaps not expected in teenage patients and, in my experience, medical awareness of this issue could be improved in some cases.
Luckily, artificial menopause was induced during chemotherapy to try to protect my remaining ovary from cytotoxic drugs, so a chance of assisted fertility will hopefully remain. I have recently been having more tests to look into this.
I am incredibly lucky – one in ten – that I survived this disease. I was told that if it returned it would be hard to treat and so far it hasn’t returned. At the time I was treated, only about 20 people had survived ‘ so far’. However, eight years on I believe outlooks are changing. I very much hope, and have read, that newly tested treatments like mine, led by leading experts, such as Professor Martin Gore at the Royal Marsden oncology hospital in London, have really improved the outlook for patients with this diagnosis. At least my case shows that statistics can be defied with the right treatment and medicine is always advancing.
However, with such aggressive treatment, my body and life was changed irreversibly by treatment. As with most things in life, this had some good effects as well as the bad. Through features and discussions on this blog, I’d like to explore experiences of the long-term effects of youth cancer survivorship, but also to encourage dialogue about illness in young people in general. I’ve also learnt that hospitals, illness and health can be a fascinating topic, not for everyone, but I hope there’s a crossing point between them which has interest beyond these categories and simply becomes human experience. Throughout this time I have always been supported by family, friends, my boyfriend and healthcare professionals and I’m so grateful for this.
At first I was unable to write about these experiences and tried to escape from using them in creative work, but as side-effects continue a few years on, I’m beginning to feel it’s possible to make something from suffering and loss as well as from joy.
I’m now approaching my sixth abdominal operation, which will have implications on my fertility. I want to begin by working from this significant aspect of the years of my life so far (I estimate that about three years between 18 – 26 have been spent recovering from hospital treatment or in hospital). I really hope it could be interesting for other people with an interest in health, illness, fertility issues or youth cancer, and perhaps could provide some sort of starting point for dialogue. I’d love to connect with other people in comments or discussion. I hope that if you have had similar experiences to me, know someone who has, or are interested in these topics this might be a helpful or interesting place for you to come to read features. In my life, I’m particularly interested in trying to make a creative career when you’ve had a lot of health problems at a young age, but effects on all careers and areas of life would be very interesting to hear about.
Now that I’ve recovered from this latest operation a friend and I have launched a really fun blog called dancedAs the name suggests, it’s about freedom and dance now and throughout history, which is another interesting subject. So, I’ll need to be well to dance as much as I’m planning to this winter…