Liz's story

SLIPPING THROUGH THE NET AND CONFRONTING MY CHILDRENS’ CANCER

By Elizabeth Dent

It’s bad enough when the surgeon has to remove your pancreas and parathryoids, pronouncing that you have pancreatic neuroendocrine tumours. But, believe me, it is far more devastating to learn that you have inadvertently passed this rare cancer onto your three talented teenagers.

“Multiple Endocrine Neoplasia Type 1 – whatever is that?” I remember asking the geneticist. Now I know only too well: neuroendocrine tumours that can randomly occur throughout the pancreas, pituitary and parathyroids. Even though my father had died from this in 1983 (generously donating his body for research) and my sister Ruth had it, a London hospital assured me I was OK.

It would take years of feeling unwell and being dismissed by my GP as “just having a spot of irritable bowel syndrome” before myself and three children were genetically diagnosed with MEN1 in 1999. From then on, I would discover the struggles of living with a rare cancer and learning how to confront the challenges head-on.

At least we were fortunate in the management of our condition at a large teaching hospital with an experienced Multi Disciplinary Team. But as for post-op care, that’s where a patient support group can be invaluable. To our amazement there wasn’t one, so Emily (my elder daughter) and myself founded AMEND in 2002 and it has grown steadily since with a team of dedicated volunteers to gain international status (www.amend.org.uk).

Although providing a vital service to patients in terms of support, information and just plain contact with other patients, these rare cancer charities often struggle to survive, having to rely on the generous help of numerous volunteers. There is little financial support to run them, or indeed for the vital research needed. I have personally found volunteering to be truly therapeutic: if I can make just a small difference to a patient’s quality of life, then it’s worth it. The cameraderie between volunteers of these societies is uplifting and you no longer feel alone.

And let’s not forget the many consultants, surgeons and researchers who tirelessly give up their precious free time (sometimes for whole weekends) to attend patient conferences and fundraising ventures: whether giving informative talks, dancing the night away at charity balls or merely swimming with sharks to raise money, they all help us to raise our hopes and morale.

Even though I have the support of my loving husband, Robert, together with family, friends and patient groups, my inner strength has been truly tested during Emily’s parathyroid, pancreas and liver operations and I know that it will be tested again soon when both my younger daughter and son have to undergo similar operations.

Although I try to remain positive and set myself achievable targets, sometimes I inevitably get a bit depressed and once I did need counselling to lift me out of the sea of despair I was drowning in. When my mind and body were at an all-time low, I ended up collapsing on an intercity train, holding up all trains on the line for an hour on a Friday evening, whilst I was stretchered off to hospital – not my finest hour!

But mostly by sticking to a reasonably healthy diet, supplements & medication, taking a bit of exercise and indulging my passion for history (I am visiting the prehistoric sites of Orkney next summer!), I manage to keep reasonably healthy most of the time. This is just as well for sometimes I have to struggle to achieve this: although a Type 1 Diabetic as a result of no longer having a pancreas, my PCT refused me an Insulin Pump and I had to get my M.P. to persuade them otherwise!

In fact, by narrowly avoiding the Kings Cross Underground bomb followed by the Tavistock Square Bus bomb on 7th July 2005 on one of my rare visits to a Cancer Genetics Meeting in London, I am convinced that my Guardian Angel had other plans in store for me!

I never give up hope that current research will lead to new treatments for NET’s before too long. I may have initially slipped through the NET, but by being on the Patient Panel of the NET Patient Foundation (www.netpatientfoundation.org) I hope that by volunteering my services, in some small way I can improve the detection and treatment of these troublesome tumours for the benefit of my children and grandchildren and all the other NET patients. World NET Cancer Day on Saturday November 10th will undoubtedly help in raising the profile of this rare cancer.