MY HEALTH EXPERIENCE:It is mostly diagnosed in people over 60, but I was just 42
IT BEGAN in 2002. I was picking up infections that weren’t going away and I started to develop bone pain. I knew something wasn’t quite right.
I played tennis and did a lot of the mini marathons, all of that kind of stuff and was juggling between keeping a home, a family and working in an inner city project full-time.
I had some blood tests done and went to Beaumont where they did lots of X-rays. There was something showing up but they weren’t clear what it was.
I had a bone marrow biopsy where they put a long needle into your back and take a sliver of bone. They said, we think this is a smouldering myeloma.
I’d never heard of it before. About 2 per cent of all cancer cases are myeloma related. It is mostly diagnosed in people over 60, but I was just 42.
I was shocked. I certainly couldn’t believe it was happening to me. They said it was a cancer of the bone marrow, but that it was treatable.
There were other words I saw on the internet afterwards, one was “not curable”. But I didn’t want to read about it really; I just wanted to get on with my life.
I didn’t tell my children, they were way too small. I didn’t want them to carry the burden of their mum being ill; even though I trained in social work and it probably went against the grain.
Years before, you might think, Gosh, what if I got cancer? You would think you’d fall apart. I didn’t fall apart. I just decided this was a glitch in my life and I was going to get on with it.
I was monitored every three months for four years. I had some bone pain, but I did everything as usual.
But then it started to develop and I was transferred to the Coleman K Byrnes unit in Beaumont where they used chemo-type treatments to prepare me for a stem cell transplant of my own stems.
In the days before the transplant, I got a very high dose chemotherapy. That was very, very severe and I felt wiped out.
Two days after that, they started me on growth hormones to mobilise the stems. Within a few days, the oncology team felt it was the optimum time to do the transplant and the process started straight away at St James’s Hospital. That was October 2008.
They use a machine called a cell separator. The blood is coming out from one line, the cells are being separated and the stems taken out and then the filtered blood flows back into your system.
They freeze your stems and give them back to you when you are ready.
I had about four days at home to prepare the children before the transplant. It was the first time I had told them about it.
Caroline was 13, Helen was 11 and Jack was seven. I said: Mummy has to go into hospital, she will lose her hair but she will be much better when she comes out.”
Again, I was given an extremely high dose of chemo and taken over to St James’s for the infusion of my stem cells.
It is a weird sensation; there’s this smell of sweetcorn or broccoli and there’s dryness in your mouth. It is not dreadful but it is strange to have something being pumped back into you.
Then it was back to Beaumont where I was in total isolation for 14 days. That period was incredibly low. It was the first time I realised that I had something very serious wrong with me. I fell into the deepest, darkest place ever.
While the team was very encouraging, I spent days just being so sick. My throat was infected, I couldn’t touch food, I was not sleeping, my hair fell out – there were very dramatic things happening all at once and I was on my own.
After 21 days, I went home. I was coming back to a house where everything was familiar, but nothing in my life was familiar any more. I had been through a trauma and it had changed me.
For the first few months, the team wasn’t detecting any myeloma. I went back to work part-time in March 2009. My hair started to grow back and I felt great.
However, within a year, I started to feel the bone pain and the para protein levels (an indicator of abnormal cells) started to creep up.
They have decided to give me another stem cell transplant now and I’ve had three cycles of very high-dose chemo to prepare me for it. My stem cells from the first time are already there for me.
I will still have to go through isolation and the high-dose chemo and I will lose my hair. I know what it involves this time around.
It’s worse this time because my children know what’s happening. I think you can tolerate pain yourself, but the biggest pain sometimes is the pain in my children’s eyes. That is probably the most difficult part to cope with.
I’ve had to come to terms with a lot. I had decided to give up work. I was very upset about that because it marked another stage. I was just 50. However, I’ve decided I can turn that around, so it’s a reinvention of Regina.
Being diagnosed with a condition that is fairly life threatening, you learn about the people around you. I have wonderful family and friends who are worth their weight in gold and you see goodness in other people you never would expect.
Now and then, I get that pitiful look in people’s eyes. I don’t do pity. I don’t have time, so I’m selective about the people I want to be around.
My eldest child, Caroline, is now 17; Helen is doing her Junior Cert; and Jack is having his Confirmation, so there is a lot happening, I want to get into St James’s and just get this over with.
Some days, I want to scream and shout and say, “This has been a tough road” and allow myself that freedom, but then I dig myself back up, and dust myself off and get on with it.
There will be new treatments in the future and I want to get down the road to those new treatments.
REGINA McHUGH (ODEA) in conversation with
JOANNE HUNT
