RTÉ’s Ear to the Ground generated a huge response from my nearest and dearest along with my valued readers. I cried all the way through it and for a long time afterwards because of all the beautiful messages that we received.

I think the team on Ear to the Ground got the focus of the day’s filming just right. I’d have loved more grandchildren interactions but that would have been for me and not other families.

So many families are caring on a daily basis for their loved ones at home. On tough days, my husband Tim, is my main carer. He has to do all sorts of extras on top of his farming career. He gets on with it efficiently and effectively. There are many such men and women around the country who take on the role and our lives would be a lot tougher without them.

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One of the questions we have to ask is “who is looking out for them?” They have no training. They love unconditionally and try their hardest to keep us happy and comfortable. Tim manages my tablets, cooks for me, does lots of the dropping and collecting of Diarmuid. I am so grateful to him. He makes my life with cancer better every day.

How to know what to do

One night last week, I had gone to bed early. Tim came up to bed around 11.30pm. I got out of bed to get a drink of water and gingerly stood up. I was suddenly gripped with pain that rated a 15 on the scale of 1 to 10. In other words; off the scale. I was stuck to the floor. I couldn’t move my shoulder or my arm. All I could do was cry. Tim asked, “what can I do to help?” I had no answer except to say, “don’t touch me.”

We were two lonely figures in a moment in time standing in the bedroom. The cloak of darkness covered the house while we tried to make sense of the situation. I was terrified, thinking, “is this what the future is going to be like for us?”

I don’t know how I got past it. Tim followed his instincts. I let him lead me gingerly back to bed. I got into the lying position, shoulder on top of my rechargeable hot water bottle (an amazing gift) on top of my little pillow. Tim gave me a tablet and I settled.

I can’t imagine what it would be like to be alone in that moment. It is important that we mind the carers too because we would be lost without them.

This was new and this was scary. The following day, I contacted my team and my medication was adjusted. I have got some relief but we are nowhere near satisfactory yet.

It is important that we mind the carers too because we would be lost without them

The arrival of pain into my life is a constant, lousy reminder of the cancer tumour under my arm pressing on the nerves, muscles and tendons there. I do trust my doctors to find a solution to this. I need to be pain free to function in my daily life. I want to be able to put that cancer into a box, minimising the impact it has on my life.

Frightening

Asymptomatic is a good place. Often times over the last few years, my doctor Deirdre, would say to me, “it is good that you are asymptomatic” which meant I had no visible symptoms except tumours on scans.

That has changed. Sometimes, I can barely stand it. I cry out, frightening whoever is working with me. Hopefully, there is a solution around the corner. My meds might be managed better or the chemotherapy might beat the tumour back. I long to return to that asymptomatic place where I could get on with my everyday life effortlessly.