Chapter 5 – The Adjustment

In a time when I need a little hope I look at a photo of where I call home and think of the moment I’ll have when I go back with my trials and struggles carried in a box able to be let free and turn into achievements and happiness. – Cassandra Shea

It was only when I was back at home by myself for the first time that the reality of what was happening to me began to sink in. That first month in the hospital I was caught up with the business and the busyness of being sick. My journal entries give a sense of what was going on but there was a lot I wasn’t able to say during those days….. I just didn’t have the words. It was only when I was home alone that I was able to start to absorb all that was happening and all I was facing in to.

In all the tests I had during those first few days and all the investigations, I never thought of cancer. How the hell did I get cancer? How the hell did I get such a rare cancer?

By the Myeloma stats I should be a middle aged man but instead I became part of the 2% club – 2% is the percentage of Myeloma patients under the age of 40. I was 38 when I was diagnosed.

When Dr Wall told me I had myeloma I asked her two questions:

  1. Is it hereditary?
  2. Will I lose my hair?

Looking back I realise now how trivial the hair loss question seems but at the time I was worried about the kids – could they get this cancer from me and was my hair loss going to really upset them.

It might seem strange to people that I was on my own with my consultant when she told me the news. But that was how I wanted it. I also would have known if she had come in to see me and asked me to invite Bryan in. There was no hesitation on my part – I just wanted the news and some time to absorb it before I had to tell Bryan.

There’s so much that comes with a diagnosis of cancer – the weight of responsibility of having to cope with what I had just been told, the task of telling my loved ones – where do you start, what do you say, how do you say it?

My family knew that the results were due on that particular day so they were waiting, nervously to find out what was wrong with me. I called my Mum first and then my older sister Rachel. I told my Mum who was at home in my house looking after the kids and keeping routines going while everything else around me was falling apart. We cried down the phone at each other. When I told my sister she cried and then just said we all love you and you will get through this.

I called my mum in law Maureen and when I told her I broke down. She was very calming and said something similar that everyone loved me and that I was strong.

We sat down with the haematologist to discuss a plan of campaign and she explained in a bit more detail what myeloma was and what the treatment would be. When she said the word treatment I was so relieved. When I was told there was no cure I immediately thought – well how long have I got and when am going to die? This was all new to me and I had nothing to benchmark what was happening to me against.

When the haematologist confirmed to us that I would die without treatment it was just devastating. The death word had not been used up to that point and so it shocked me further and made me realise how big a battle I had ahead of me.

After that we were left on our own and I had a little cry. There were so many feelings and emotions flying around that it is just impossible to put one word on what I was feeling – what we were feeling.

There was fear and panic. There was grief and sadness – all our dreams together and our hard work to build the life that we had for ourselves and our children. Was that all gone now? There was despair, hopelessness and there were an awful lot of tissues used.

I always wondered how people coped with bad news like this. You see the way people behave when bad news is delivered in movies – in Hollywood there’s a drama and an art to it all. There is no artful way of receiving news like this in the real world. There is no manual to tell you how to be or what to say to people or to yourself.

There’s a business side to dealing with it too as there are so many other people to factor in. Close family, friends, work colleagues, extended family, neighbours, teachers and child minders……. So much practical stuff to take care of.

My mind was spinning – if it was a cartoon you would see stacks of those speech bubbles filled with just the one question mark?

You could be forgiven for thinking that I appear to have just gotten on with things but inside I was crushed. There was not a second of the day that I didn’t think about cancer. Those speech bubbles were full of cancer? WHAT? Cancer? Me?

cancer speech bubble

It’s terrifying to be told you have a cancer that there is no cure for. It’s even more terrifying when it’s a cancer you have never heard of. It’s Myeloma is what I would say to people and they would reply ‘Ah yeah my sister had one of those removed from her arm’. No! Not Melanoma – this is Myeloma!

My thoughts in those early days were full of despair and blackness. Don’t get me wrong I was very single minded and determined to fight this  but there was a blackness that had descended.

The kids! How the hell can they cope without me? Cathal was 2 and Emma was 9 and we had so much living to do.

We had only just moved into a new house. Cathal was still a baby. How the hell was I going to tell Emma that I might not be around for her and how on earth was I going to contemplate saying goodbye to a two year old when he had only just learned the words?

It was just all so crushing.

There were practicalities to deal with –bills had to be paid, school and child minders had to be consulted and I did a lot of this from my hospital bed, despite protestations from Bryan. But I needed to feel useful at that point. I needed to feel I was going to be treated as same old Brenda. One of my biggest fears was that I would be treated like an invalid for the rest of my life.

My brain was in overdrive with thoughts and dreams crashing together. I am so used to working and to being busy and to have all oof that suddenly come to a full stop was very difficult to deal with.

There was a moment a few days after the diagnosis where I had to almost sit myself down, give myself a good talking to and give myself permission to be sick!

Friends and family were just so supportive. Nothing was to be of concern on the home front as family and neighbours rallied around with school runs and babysitting. My mum and mum in law took it in turns to stay with the kids at home so as we could keep some normality in the house. I sat in the hospital room by myself wondering if life would ever be normal again.

At home the Christmas decorations were still up. I had missed the end of the kids school holidays and those lazy January days when you eat the remainder of the boxes of Roses and watch movies you have seen a hundred times. I hated missing that and I started to wonder if that was my last Christmas ever.

SAMSUNG CSC

I was relieved to be released from hospital at the end of January and to feel that we had begun the fight against my Myeloma.

I settled into a new rhythm of daily life. Cathal was collected by his child minder Chris who was a tower of strength to use. I was too weak to look after him at home those first few weeks and we knew that things were unpredictable so we wanted to keep up the routine.

A neighbour collected Emma for prmary school. I phoned the school to tell them about my news and to ask them to keep a particular eye on Emma and to cut her some slack if she turned up in her tracksuit instead of her uniform. They were very understanding.

I had not returned to work since beginning my Christmas holidays. I missed work but I knew I would not be physically able for it and there was the issue of picking up infections too when you are out and about in a busy office building.

I slept a lot in those early days as I rebuilt my strength. I had lost so much weight and my own body had in effect beein poisoning itself because my kidnerys were not able to do the job they were supposed to. As I started to respond to the treatment it was a relief to be able to go through a day without feeling sick.

But I knew that there was much more to come and that my relief was only temporary.

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