Julian has kindly shared his story on how he came to have treatment at Lynda Jackson Macmillan Centre

Back in 2018 I was having trouble swallowing. I went to my GP and he said it sounded like globus, a stress response which causes the muscles in your throat to tighten. He said that often knowing what it is helps it go away. It didn’t go away so he did a blood test. I quickly got a call to come back and see him as the test had shown I was very anaemic. A week later I had a gastroscopy to examine the inside of my throat, oesophagus and stomach at Stoke Mandeville Hospital.

The consultant asked what I thought as I watched the images on the screen, and I remember saying to him that while I am not a doctor, that’s not what I imagine an oesophagus should look like. I was called into a room with the consultant and seeing a Macmillan nurse was also there, I know things weren’t looking good.

"I was called into a room with the consultant and seeing a Macmillan nurse was also there, I know things weren’t looking good."

I was diagnosed with a Siewert type 2 adenocarcinoma - the 2 means it is at the junction between the stomach and the oesophagus. I was anaemic because the cancer had ulcerated and was bleeding.

I then had PET scans, CT scans and more blood tests.  I was under the Oxford University Hospitals at that time. I saw a surgeon who gave me a very bad prognosis and said they were going to put me on a palliative care regime. I was stage 3, almost stage 4.

"It was quite hard going but I did everything that the Macmillan nurses advised: I drank gallons of water, walked every day and followed a very disciplined regime."

I am fortunate that my wife has worked at Mount Vernon Cancer Centre for many years and knows the consultants, so I asked them for a second opinion. Mark Harrison took me on and quickly put me on FLOT – a combination of chemotherapy drugs with 6 cycles, one every two weeks. It was quite hard going but I did everything that the Macmillan nurses advised: I drank gallons of water, walked every day and followed a very disciplined regime.  When that was over, Mark gave me three weeks off and then put me on more chemo, this time every week, and radiotherapy, every working day for 28 days. That was a bit of a trial and I ended up living on medical drinks. At the end of all this, in fact, at the end of the FLOT treatment, there was no sign of the tumour.

I’m now three and a half years post diagnosis and despite some side effects from the radiotherapy and chemotherapy, I feel fine. Mark has said that even if the cancer does come back, he has much more he can do. I asked Mark why I had got it as I don’t have any of the risk factors, and he said I was just unlucky.

"I asked Mark why I had got it as I don’t have any of the risk factors, and he said I was just unlucky."

I now have scans at Mount Vernon Cancer Centre every 6 months but that will drop to every year if the next one is ok. There is the constant worry that the cancer will come back and as I said earlier, I do have some side effects and as these are similar to the symptoms, such as difficulty in swallowing, it can be difficult to come to terms with mentally.

Last year, when I was having trouble swallowing, I was advised to speak to Tarsem at Lynda Jackson Macmillan Centre (LJMC). Tarsem has been brilliant: she showed me how I could massage my oesophagus externally to help food go down easier so I’m not suffering discomfort after eating.  She has also taken me through massage and relaxation techniques, visualisation and diet and I would say it has been nothing short of transformational for my wellbeing. I felt like a ship adrift at sea, now I feel I am sailing again. This practical and mental advice has given me a much better understanding of how my body has reacted to all the treatment and what can be done to mitigate those side effects. 

"I felt like a ship adrift at sea, now I feel I am sailing again."

I cannot thank the LJMC enough for what they have done for me. The doctors are brilliant at treating you but the LJMC team have the time to sit with you and talk about anything you want to. They have the time to help you understand what you can do to help yourself and how carers can help. LJMC helped me gain control.

You can support the Lynda Jackson Macmillan Centre by visiting: www.enhhcharity.org.uk/ljmc