Don Hedges, a grandfather from Hampshire, was diagnosed with gastrointestinal stromal tumours (GISTs) during Christmas 2008.
“I first realised something was wrong some 12 months before, I felt unwell and noticed I was putting on weight and feeling breathless. My GP suggested it was irritable bowel syndrome but feeling frustrated with the diagnosis I sought a second opinion. A second GP sent me for an ultrasound at my local hospital, which revealed a large mass in my abdomen.
Upon referral, to Southampton, it was confirmed as a gastrointestinal stromal tumour(also known as a sarcoma) and revealed that it would be difficult to remove through surgery alone. The site of my GIST meant that an operation to remove the tumour would result in the loss of my stomach, left kidney, spleen, pancreas and a large part of my transverse colon.
The surgeon explained that if the tumour could be shrunk using a drug therapy then he may be able to remove the tumour whilst preserving more of my organs.
The oncologist agreed that treating the tumour with imatinib (a type of cancer medication) would be the best option. I started on imatinib on 10 February 2009.
On 31 July 2009, I underwent eight hours of surgery to remove the GIST – my treatment with imatinib had reduced the tumour by 50%. Although the surgery had to remove part of my stomach, a part of my pancreas and all of my spleen, it had removed the tumour with good clearance.
Having spent 4 years on imatinib as an adjuvant treatment and now 10 years on, my oncology team have now given me the tick in the ‘cancer-free’ box. At the moment I’m feeling good, I’ve now retired and spend time with my family and in particular my grandsons. I’m able to manage the long term effects of the cancer and its treatment effects, but more importantly, I am determined to keep active and maintain a positive attitude.
A key player in my journey was Wessex Cancer Trust. Having been diagnosed with cancer your friends and family can find it difficult to deal with and don’t really know how to interact with you. They find it difficult to talk to you about it.
Wessex Cancer Trust gave me a place where I could talk about things that bothered me and share my anger about the situation.
The befrienders at the charity listened, they didn’t judge me or tell me I should do this or that, but gave me the chance to get things off my chest or just drop in for a cuppa.
That support was, and still is, key to the maintenance of the emotional strength needed to deal with what can be a long, dark journey. That support allows people to share the journey with others without burdening their family, who are also going through a dark time thinking that they might lose you.
So while the clinicians do their bit to make you physically well, the journey is so much easier with the emotional support given by the Ferndown Business Network member Wessex Cancer Trust. Without them, I would not have sustained the positivity needed to survive the journey.”