Hear my voice | Adrian Goodwin

So, I’m old, not exactly in my dotage, I feel 30 something on the inside but look double that on the outside! I am therefore of the generation that does not talk about C***** and, if we do, we try to reduce its impact by using a euphemism and definitely in hushed tones.

Two years ago we knew something was wrong when food and drink, just enjoyed, starting coming down my nose – disconcerting for me and equally for those on the other side of the table.

My GP sent me to several places to be poked and prodded with the latest technology and after four months, four GP visits, three hospital visits, his exact words were “I have good news and bad news; the good news is you definitely do not have cancer but you do have a hiatus hernia”. OK, say I, but that does not explain the cough and no longer being able to speak. A different GP a couple of weeks later, in minutes, gave me a very concerned look, and a hospital referral which led to a diagnosis of cancer in the base of my tongue in less than a week.

To date, the journey that ensued has lasted over two years and has involved radiotherapy, two lots of chemotherapy, numerous scans of various sorts and trips to Colchester and Southend hospitals for activities not supported in Chelmsford. Being fed through a tube directly into my stomach because of the results of the radiotherapy and an eventual meeting with the consultant, eight months later, when we were informed that the treatment had failed, the cancer had spread to my lungs and I would be hearing from the hospice shortly. Sounds a bit dire when you say it like that, and it was not that bland – all the hospital staff were very supportive and understanding with counselling and support available if required. The hospice were also very supportive although the hospital had to be chased on this as well since they had not contacted the hospice with my details. I am now receiving palliative care with monoclonal antibodies which may help to extend my time, or may not, we shall see.

So why are you reading this from me? Why am I writing about cancer when most people now prefer to ignore me rather than talk to me – they even avoid eye contact when they see me coming at work – oh yes I still go to work!

I joined Healthwatch Essex as a Cancer Patient Partner because I believe cancer is just another disease, worse than the flu, but just a disease. We are all happy to talk about flu and debate the pro’s and con’s of treatment and I think we should do the same about cancer. The more open we can be, the less hidden it will be and the easier it will be for those of us who live with it and those who live with us. We also need to be sure that the NHS understands how we feel and how the journey, of which the NHS is such a vital part, can be made easier by them. They have their job to do, and it’s not easy, but the appointments process, as an example, (since my oncology doctor does not have a formal clinic I get appointments for plastic surgery and physiotherapy) needs an overhaul. Communications between the different departments in the NHS is dire and we have enough to cope with, without battling their problems as well. The number of versions you get of a set of side effects or timescales is a multiple of the number of different people you talk to and you talk to a lot. Cancer takes over your life, if you let it, and your world revolves around blood tests, chemo cycles and what medication to take when, the side effects and the tiredness. The last thing you need is a support organisation that is confused and downright disorganised.

What’s the population of Essex? 1.5 million? And Cancer UK says that of those born since 1960, half of those will have cancer at some point in their lives. So we need to be sure that the NHS and the Social Care system is prepared to cope and support us all, doing that efficiently and effectively.

I’ve been on the journey, and thanks to the NHS, I am still travelling, but it has been a bumpy road and I would hope that my input and that of the other Cancer Patient Partner colleagues and the support of Healthwatch Essex, we can resurface that road and smooth the way for those who follow us. You never know, I might even persuade you to give them your feedback or at least feel able to talk about your cancer so others will not feel embarrassed or even ashamed to discuss it and help you on your journey.


If you would like to know more about our Healthwatch Essex Ambassadors and in particular, the role of a Cancer Patient Partner, click here.