Reflections and Nightmares- Irene A Waters (writer and memoirist)

© irene waters 2020

Have you ever stopped doing something and then found it hard to restart?  Time stopped for me in 2019 and getting going again has proved harder than I imagined.

My last post at the beginning of June 2019 was not the beginning of my saga. That began in February. If that had been the only thing you wouldn’t have noticed my absence. Perhaps you didn’t anyway but I know some did and your emails were bright lights in the dimness. In February 2019 I was diagnosed with breast cancer. I wasn’t hiding it but I only told a few friends because I made a decision not to tell my elderly mother who was becoming more anxious as time went by and I didn’t want to add to her anxiety. I didn’t tell anybody that also knew her because I couldn’t ask them to tell lies. Fearful that she may discover my blog I couldn’t write about it. But not talking was harder than I imagined although  I wasn’t that worried about my diagnosis. I  had my book launch in March and went on to China.

© irene waters 2019

We had booked an incredibly cheap trip and our neighbours across the road asked if they could come. Not wanting to spoil anyone’s holiday again I kept it to myself. The trip was fantastic and I’m sure that over time I will bore you silly with my experiences. On our return I went in for surgery. I told Roger to drop me off which he did and I arrived in theatre alone. It wasn’t long before I was taken to xray for the dye  to be inserted to attempt to find my sentinel lymph node. For the first time it became real and I couldn’t stop crying. The technician was so sweet. I guess it wasn’t the first time he’d had women go to pieces. Then off to ultrasound to put pins in to mark where the tumour was so the surgeon would have a wide margin for error. Another sweet nurse. Back to theatre waiting room for hours. One book finished and nothing to distract me, the waiting was hard. Finally it was done. All that awaited me was a course of radiotherapy which started in June.

Then the Double Whammy. Roger was diagnosed with multiple myeloma, a cancer of the bone marrow. Unlike me he is not going to be cured. I started radiotherapy and he started chemotherapy. Every day we attended the hospital. Radiotherapy is not pleasant but so much better than chemo. I kept my burns and pains to myself, now not sharing with Roger as well as keeping it from my Mum. Mine finished in July.

© irene waters 2019

Roger’s was to continue for a year. At first twice a week  and then once a week. They had to hit it hard as it was transitioning to leukaemia – not a good place to be apparently. Luckily it had been discovered on blood tests done for his total hip replacement. As the haematologist told us – normally when I see people with blood levels like this it is because they have a life threatening infection, a broken bone or renal failure requiring dialysis. All of Roger’s organs were in perfect condition.

© irene waters 2020

I stopped writing. I stopped doing anything much at all. I didn’t dance, didn’t blog and I put on weight (because they told me not to lose any to ensure the radiotherapy didn’t but too badly) and life took on a surreal existence.

But they say things come in threes and they did. My Mum started to deteriorate and ended up in hospital. She was delusional and I feared it was a medication that had been increased. I asked them to check the levels and they assured me they would but I didn’t check up on it because Roger suddenly got sicker and sicker and he ended up in intensive care with septicaemia (infection in the blood). I went between the two of them. They wanted to send Mum to a nursing home – I said no she would be right when she got back to her own surroundings. So I took her home – still delusional but she had worked out how to hide it well. I should have twigged when I picked her up and saw what she had written on her bedside table.

She only lasted two days at home before having to return to hospital. This time the blood test was done and she was toxic to the drug and thankfully all the delusions have now gone. There was no choice however than to face that her time of independent living was over.

I dread if I ever get to her age (or younger and need care) without someone to guide me through. The rigmarole for getting into aged care is difficult to negotiate for someone who is computer literate and can understand the miles of paperwork that is necessary.  I was also stunned at the size of the move from her apartment to the nursing home.  Between Roger and Mum I had no time. I’d already stopped dancing – now I did little apart from manage my family, putting my continuing pain on the back burner.

Roger was in a bad way with the chemo. At the same time I am in total awe at the way he would not give in. He was determined that he would get as much done as possible so that I would be left with everything in order. When he could he worked on various projects – the first being reconstruct the bathroom that we had pulled out shortly before his diagnosis. The fatigue was overpowering. His loss of appetite due to loss of taste worse. Peripheral neuropathy, sight and hearing problems, blood clots and so many others but the worst was his hip that hadn’t been operated on. He could barely walk.

By December the haematologist said he was in a safe enough position to miss a couple of weeks treatment and he could have his hip done. In January this happened and the difference was immediate and positive. Around the same time he went into complete remission. We’re told the average time is 2 years. I’m hoping for five. Chemo stopped after 8 months in March – a wonderful birthday present. As he recovered we started looking at what and how he might want to spend his time – a trip to Turkey was planned and one to Canada.

Finally I went and saw about the pain which I had been putting down to radiotherapy. Turned out to be lymphodoema for which I am now having treatment.

And then time stopped for us all. Covid 19 changed life as we knew it and we won’t be going anywhere for some time to come I feel. One of life’s little ironies but we have to say that we are blessed that we live in a place where it seems to have been contained and we don’t, at this moment, feel in real danger. I worry about everyone I knew from WordPress that live in countries not as fortunate and I hope you are all safe and well.

We have all been faced with the possibility of our own mortality and that of those we love and it has brought me at least, a recognition of what is important in life. I don’t know that we will ever go back to the way things were before. I know that Roger and I won’t. I hope that humanity won’t either. The world is in this together and together we can see it through. Kindness has been prevalent and we’ve had the gift of time. Use it wisely  – I hope we retain having extra time  but you just don’t know.  There have been some unexpected benefits – for me it is attending a New York Met Opera once a week and the odd London National Theatre production and having less cars on the road and seeing pictures of deserted cities. And finally it has brought humour back to my world.It’s not wrong to laugh in a time of crisis – indeed laughter relaxes and boosts the immune system so you can view  it as medicine. There are so many funny and creative people out there. I’m not one of them but I certainly appreciate them.

Time may have stopped but it will start again. Our lives will be different if for no other reason than we have faced death – all of us. No longer do I feel alone. Soon we will all have time going too quickly. Finally I am ready for time to start moving and me to get going again.