“Understanding your cancer care is just so important – it’s a way of taking control”

Helen was diagnosed with breast cancer in 2013.

As we launch a new ‘Your Cancer Care’ tool, Helen explains how important it is to feel fully informed about your care and diagnosis.

On receiving a cancer diagnosis

It took several visits to my GP before I was diagnosed with breast cancer.

At first, I was told there was no reason to worry, but I trusted my instincts and asked to be referred.

I still remember the day.  There didn’t seem to be any great concern, I was relaxed, so I went to my consultant appointment on my own.

I found out that I had cancer with no-one around to support me.  It was the most difficult thing.

Thoughts on cancer care

I’ve experienced both sides of the coin.

After my initial diagnosis, I met an exceptional clinical nurse specialist from Macmillan.  She supported me, and left no stone unturned.  The care my family and I received was outstanding.

I felt truly safe in her care.

It didn’t stay that way.  I needed further treatment, my care was transferred and my experience was just not as positive or reassuring.

Yes, people were professional and caring, but there were just so many times that I felt left alone to sort things out for myself.

It was easy to start feeling like you were part of a process, a procedure rather than a person.

I saw different people at every appointment, I couldn’t identify which person I should turn to with my worries, and I had no formal care plan to help me understand what would happen next.

I certainly wasn’t made aware of the different kinds of support that could have been made available, like financial advice or counselling.

I desperately needed some of that support further down the line, but I had no idea how to access it.

It was a real gap in my care.

Shaping ‘Your Cancer Care in Wales’

I know just how important it is to understand your cancer diagnosis and care.

The worries I had through my cancer experience were much wider than just medical.  I worried about family, work, money – my emotions were all over the place.

If you at least understand your diagnosis, and are aware of the support that is available, then you can feel like you have some control over it all.

When Macmillan Wales asked me for my views on a new resource to help people understand their cancer care, I was more than happy to help shape it with some of my own experiences.

I hope the ‘Your Cancer Care in Wales’ resource will help people to understand their care, and to know what questions to ask to make sure they get the support they need.

I know I would have appreciated some of the advice the new tool contains.

I hope others can take some comfort from it now.

Download or order a copy by searching for ‘Your Cancer Care in Wales’ on be.macmillan.org.uk