Kate's story

Emergency surgery and poetry

When I was told I had a brain tumour in May 2006, I felt like I was staring into a big black hole and about to jump into it. In fact, they put the diagnosis of why I'd been having terrible headaches for three months in a more delicate way – 'Mrs Snow, you have a shadow on your brain.' It was the same for my dad when he was diagnosed with cancer that had affected all his major organs – 'Mr Davies, I'm afraid there's a bruise on your lung.' My dad was diagnosed with the cancer in July 2006, just as I was going through chemo and radiotherapy. He died in a hospice on July 18, just a week and half after his diagnosis. As I sat on his bed one morning, we agreed we'd fight the cancers together, though we knew his care, though wonderful, was palliative. Losing my dad so quickly during my own treatment made that summer the most dreadful and dark time of my life

I'm guessing there is no nice way to tell someone they've got a brain tumour. Three day before my diagnosis, I was sitting in a doctor's room holding my head. My head felt as heavy as a bowling bowl and the pain was terrible. Two days later I was sitting in a bed at the Hurstwood Park Neurological Centre in West Sussex writing my will.

I had the trapdoor operation (on the left side of my head) and was in hospital for three weeks. Towards the end of the stay I was told the biopsy of the tumour showed it to be a grade IV glioblastoma multiforme.

Before the tumour showed itself, I was busy being a mum of two toddlers (a daughter of just 18 months and a son of three when I was diagnosed), and on maternity leave and then a career break from a job which I loved. In February 2006, I started getting daily headaches on which painkillers had absolutely no effect. I went back to my doctors' surgery weekly and my opening line was often, 'I'm still having headaches. I know it's nothing sinister…'.

The doctors seemed to agree with me and I was given pills for sinus problems or tension. In May, I was at the surgery on a Monday morning and the doctor I saw said if I was still having headaches in a week's time I should come back and she could send me for a scan. Even then, the thought of the pain being caused by a tumour didn't cross my mind. A few hours later the same day I was back at the surgery – my head hurt so much I was leaning on another doctor's desk holding it. He said something like, 'This isn't right – we need you to have a scan now.' After the scan – and the diagnosis at the Eastbourne District General Hospital – by the Saturday I was in Hurstwood Park.

Nothing can prepare you for waking up after such a major operation in a high dependency unit with every bit of you wired, strapped or attached to something. I had those boots which look like children's swimming arm bands on my legs which were moving them up and down all the time to prevent deep vein thrombosis. My long red hair had, of course, been shaved off on one side and replaced by around 60 staples, and inside my skull there were three titanium hexagonal plates and 18 titanium screws to put me back together again, unlike Humpty. Those of us who have had such ops must have heads worth a lot of money. People often ask me if I would set off a scanner at an airport, to which I normally reply, 'I hope so!'. Of course, travel insurance for cancer patients is a whole new tricky area, but through The Brain Tumour Charity, I've been able to contact some very helpful companies.

Of the three weeks I spent in the hospital, most of it was in a room of my own at the end of the women's ward. At first I resisted being away from the bustle of the main ward, but after a while I was very glad for a room in which I could have quiet times and sleep away from the bright ward lights. Even those strange days of the 'new normal' have some good memories of many friends' visits, cups of tea in the night from the nurses when I couldn't sleep and a constant supply of Twiglets which a few of us had developed cravings for!

I didn't want my children to come and see me because it would have been overwhelming (and scary, quite honestly) for them, so my mum and dad looked after them while my husband continued to drive many hours each day to his job as a software engineer.

When I came out of hospital, I felt disconnected to everything and everyone, including my family. It was like looking at people having 'normal lives' (whatever they are) from behind a thick glass window. But, as we all know, we find ways to cope and for me that was my family, friends and Christian faith.

In August 2011 I was diagnosed with breast cancer after finding a lump in my right breast just a month after a check up. I was asked, when I was told, if I would like to go back into the waiting room and have a drink and rest before going home, but I just wanted to keep myself together and so drove straight home in a state of shock. My surgeon said that after a lot of discussion, she and the other doctors had decided my body had been through enough, so they put me on Tamoxifen. However, a few weeks into it, I felt absolutely exhausted. When I went to see the breast surgeon in February 2012, she agreed that I could stay off it – after being off it for six weeks at her say so – and so I am currently deciding what to do next, treatment wise. In January last year I had a hysteroscopy to remove a uterine lump, which thankfully turned to be a polyp.

I have been writing poems for children for a few years which has kept me absorbed, occupied and out of mischief. One of mine, called Jaynie No Mates, is in a book called Best Of Enemies, Best Of Friends (compiled by Brian Moses, Hodder books) and Animal Farewells is going to published in July this year and another, Do Slugs Dance? won second prize in an international poetry competition, The Plough Prize, in 2011. If you'd like to read my poems, my website is: www.snowflint.co.uk. And you'll find some of mine on this website too!

It's nine years now since my diagnosis and treatment and I have an MRI every six months (and a mammogram every year too for the breast cancer). The only lasting residue of the tumour and treatment is fatigue. My legs ache after a short distance of walking and stairs are a challenge, but I know that some form of activity is important when you feel up to it.

I've often thought fatigue makes you feel that every step you take is like walking through treacle (on the really tiring days, with a sack of potatoes on your back as well…). But, for me, feeling able enough to write my story, treacly tiredness is an incredibly small price to pay.

Kate Snow, May 2015