It is often in the darkest skies that we see the brightest stars.”

Nothing, can ever prepare you for receiving a life-changing diagnosis. It may be easier to reflect upon the journey further down the line, offering advice you’ve picked up along the way, but it still doesn’t compare to receiving ‘that’ news.

As some of you will have noticed, I have been quieter than usual over the last couple of months, and there’s good reason for that. On Monday 2nd July 2018, my beautiful mum was diagnosed with pancreatic cancer. We had known for a few weeks that there was ‘something’, but everything was pointing in the direction of a benign growth. We never imaged it could be ‘this’. Since that awful day, we’ve had a rollercoaster of a journey, back and forth to different hospitals and clinics for tests, tests and more tests.

Between my mum, dad and I, we’ve had more than our fair share of ill health over the years. As you will know, I’m an active patient advocate, largely speaking about my own experiences with ill health, but something which I haven’t done very much is to speak about our family experiences. Mum has been ill since 1983, with a list of diagnoses and treatments longer than your shopping list! From the TB that she contracted whilst she was an in patient in hospital, to the recurrent blood clots, and the osteoporosis caused by decades of treatment with high doses of corticosteroids, and much, much more – she has been through it all. It’s no wonder she has steely determination, and despite all of this, remains the most optimistic and brave person I know.

It seems unfair and unlucky for something else to come along – especially cancer… especially ‘that’ cancer. Likely many of us, we’ve had a great number of friends and relatives who have been diagnosed with cancer – some who have come through the other end, others who sadly haven’t. It’s something you believe will never happen to you… until it does, and it hurts so deeply.

It’s true that cancer affects the entire family, not just those living with it. Of course, I can’t begin to imagine how my mum is feeling, but I certainly know how I feel – and it’s far from pleasant. The worry, the uncertainty, the unknowns… I wouldn’t wish it on my worse enemy.

So much of the journey so far has been challenging for mum to take in. From healthcare professionals using unnecessary jargon, to them not thinking about how their words and attitude cut you to the core – there has been a lot of things which could have been handled better… not to mention the many voids in our healthcare system which people can fall through ever so easily; though our specialist nurse and consultant surgeon have been wonderful. One question I still struggle with, and feel uncomfortable answering, is when they ask if I’m her carer – to which I answer ‘no’. Although I am caring for her, I just cannot relate to the ‘carer’… I’m simply a son who adores his mother and cares deeply about her… just like she and my dad have cared for me.

Who knows what the next few months have in store for us – no doubt it will be difficult, but we will cope. At first, surgery was on the cards, but that’s no longer an option… after a mystery heart condition was picked up, called ‘stress-induced ischemia’. Quoting our consultant’s latest letter, “the risk of causing death or permanent disability by subjecting Mrs Stones to surgery is prohibitively high“. The next option is chemotherapy, which we’re now waiting to hear about, after a referral to The Christie hospital. All we’ve heard since her diagnosis is how ‘higher risk’ she is and how much is ‘wrong’ with her… they know how to kick you when you are down – and it has angered me enormously. Our latest visit yesterday to one consultant left me seething… though I’ll leave that for another blog! Safe to say, he met his match, and a complaint will be on its way to the hospital Trust.

Everything that has happened in the last few months has been yet another reminder of how important, and fragile, life is. We get so bogged down with irrelevant and harmful things which, in the grand scheme of things, are insignificant. A diagnosis like this puts things into perspective – about what really matters, and everything else simply drifts into the background.

Written by simonrstones

Simon Stones BSc (Hons) is an award-winning patient leader, advocate and researcher from Manchester in the UK, who was the winner of the international WEGO Health Award for Patient Healthcare Collaborator in 2017. He is a passionate advocate and ambassador for people living with invisible illnesses, inspired and empowered by his own journey with arthritis, fibromyalgia, and inflammatory bowel disease since childhood. He is currently an Associate Fellow of the Royal Commonwealth Society, and a trustee of Fibromyalgia Action UK and RAiISE.

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