Chapter 21 – Back to Myself

If there’s one thing I learned, it’s that nobody is here forever. You have to live for the moment, each and every day . . . the here, the now.
– Simone Elkeles

The chemotherapy had taken a huge toll on me – physically and mentally.

I was changed from the person I had been BC (before cancer).

There were a lot of physical issues.

My mouth was permanently dry and it was four months before I was able to eat bread or biscuits.

My teeth were damaged by the chemo and discoloured too and I had always had such great teeth.

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My stomach was nervous for months after the transplant. The slightest thing would upset it and I would be back vomiting. About six weeks after the transplant we tried a celebratory glass of champagne and some take away which were both delicious. A couple of hours after having them I was being sick again.

I was cold all the time because I had so little padding. My bottom and back would hurt if I sat too long on firm surfaces. My friend Sara took me for a hot stone back massage for my birthday and I had to ask the masseuse to stop as the stones were catching on my ribs.

My neck too was permanently freezing as I had no hair.

I worried about the side effects inside my body – the things I couldn’t see.

The worst thing about the chemo was it killed my fertility and I was told I would never be able to have more children. I was devastated as no woman ever wants to hear those words. It felt like part of my identity as a woman had been taken away from me.

There was a part of me that would have loved another child but then I would remind myself abut all the thalidomide in my system and what that could do to an unborn child.

I was physically weak too and found that my body just couldn’t do the things it used to be able to do. I couldn’t carry anything heavier than a shopping bag and if I tried heavy housework I would be out of breath and out of arm strength. I probably should have been sent to a physio as part of my recovery but it was never suggested to me.

Another permanent side effect I live with is poor sense of taste and a sense of smell which is almost entirely gone.

As well as all the physical effects I was dealing with a lot of emotional issues and predictive grief.

I have incurable cancer which could come back at any time. I might not even get a year out of the transplant. I might succumb to something else.

I would find myself lost in day dreams where I would visualise my own funeral and wonder who might say the Mass. I would pick readings, music and symbols of my life. Then my heart would break at the thoughts of Bryan, Emma and Cathal following my coffin.

This is what predictive grief is and it can strike at any time. I might be driving in the car or at an appointment and I would find myself visualising my inevitable death from this cursed cancer. It was all very raw in those first few weeks and months.

I would make bargains with God:
– just let me see Cathal starting school
– just let me get Emma into secondary school
– just let me see a couple more Christmases
– just let me live

I made sure never to put anything in writing so as God couldn’t hold me to anything.

Each hospital check up was fraught with nerves and fear. Were that particular day’s results going to be the ones to knock me off my recovery course. I would often cry tears of relief on the journey home from my hospital check up.

There is an ongoing battle inside me which wills me on, which makes me place the incurable cancer thoughts into their box so as they don’t interfere with everything I do.

It’s not easy. Some days it’s impossible to do and I just let those thoughts jump around a bit before packing them away again.

My ambitions in life have been changed by the diagnosis of Myeloma … Yes I still want to do lots of things on my list and see more of the world but, my ambition now is simply to grow old with Bryan and to see my kids grow into the fine adults I know they will be.

It’s not much to ask but it’s everything to me.

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