Sean Rourke: New life after cancer

When Sean’s wife fell ill, family life was turned upside down. But less than a year later, Sean suddenly had his own diagnosis of chronic myeloid leukaemia (CML) to deal with too. Here, Sean talks about his new life as both patient and carer.

My story begins when my wife, Julie, suffered a massive brain haemorrhage in June 2015. She died twice in the ambulance before being taken to hospital, where they told us that she was unlikely to survive the night and we should be prepared for the worst. We have four children, Madeleine (now aged 23), Georgina (now aged 20), Edward (now aged 14) and Thomas (now aged 12) and it was an unimaginably horrid and emotional night.

She remained in a coma for five weeks, and for the next eight months I was a single parent, shouldering all the responsibilities for the family and continually arranging hospital visits to John Radcliffe Hospital (it is a 50-mile round trip for us in High Wycombe). On top of that, I had to try and work as best I could; I work in the classical music industry.

Julie miraculously survived her surgery (she was given a less than 5% chance) and slowly returned to us. She lost her short-term memory and a good deal of her mobility, but she recognised us and retained much of her old personality.

By December, I noticed that I was utterly exhausted nearly all the time, that I kept feeling bruises on my legs (without hitting anything) and I had lost nearly three stone without even trying. I put this down to life’s stresses and carried on. There were many things I needed to get done, like bringing Julie home from Amersham Hospital for Christmas and desperately trying to sort out her life insurance claims. Much of my life was spent liaising with benefit organisations and applying for charitable support as we had very little money. During the hardest times we were given tremendous support from many friends and the Mothers’ Union from our local church in Hughenden. We are so grateful to them all.

Julie was finally discharged at the end of February 2016 and, within six weeks of her return, my own condition grew much worse. I visited our GP and they were unable to make any diagnosis. Coincidentally, I had an eye test the following week whilst I was visiting my mother in Scarborough, and the optician told me that my retinas were haemorrhaging and that I should go straight to hospital (they suspected diabetes). This was a problem, as I had just arrived in Yorkshire and the nearest hospital was in York. I decided to wait until I returned to Wycombe and see the doctor again two days later on a Friday. Again, they had no idea what was wrong with me.

Over the weekend, much of my back had become painful, and I was finding it difficult to lay down or even sit down. By Monday, I somehow managed to drive (with my disabled wife) to the Minor Injuries Unit at Wycombe Hospital. After various tests, they were stumped and couldn’t help me. I was in agony and could barely move without pain. They told me to go to Stoke Mandeville A&E (nearly 20 miles away) and that I should not drive. I managed to contact my parents-in-law and they drove me there and, by mid-afternoon, I was waiting to be seen.

Once again, they were struggling to discover my problem and were about to send me home with painkillers when the doctor returned and said that I had cancer. I was on my own. I was taken to a ward and told that I would be transferred to Churchill Hospital in Oxford. You can imagine my feelings hearing that, as I had spent the best part of a year commuting to Oxford to see my wife! The ambulance took me there in the evening and I noticed it was quite sunny outside and I was strangely calm. I still didn’t know what kind of cancer I had but I knew I was where I needed to be.

When you are so ill, you just get on with whatever you have to do, or rather let the doctors do whatever they need to do to help you. I had some painful procedures in hospital, particularly biopsies, but you cope. I quickly discovered that I had chronic myeloid leukaemia (CML). I took a lot of tablets – chemotherapy and imatinib, amongst many others.

I spent two weeks there and then they discharged me. I didn’t feel right and had a persistent temperature. I also found myself out of breath. I called the special phone number that the sister had given me, and she said that it would be okay as I had a check-up in two days. I had an X-ray at this appointment and they immediately said I would have to be readmitted as I had a lot of fluid on my chest and this had collapsed my right lung.

So, I had another week in the Churchill, waiting for a chest drain to be fitted. I managed to go down for coffee a couple of times and I even played the lovely piano they have there. It made me feel better, but I was dreading the operation. Because I had such a lot of cancerous fluid on my back, it made the operation more difficult as there was only a very small gap where they could position the tube in my back; they needed to use an MRI scanner. This was successful, though after the local anaesthetic wore off it was incredibly painful. After two days they had drained three litres of fluid out of my chest. The next day I went home, this time for good.

The impacts of my illness (and my wife’s) have had a big effect on our children and, without mentioning names, have suffered depression, mental stress and emotional trauma which has impacted on their school/university life. It is with very great pride that I mention that one school in particular has initiated a special “Young Carers” programme, largely on the strength of our family’s experiences. A legacy that will hopefully carry on for many years.

I still take my daily dose of imatinib, of course, and put up with a few side effects, such as profound tiredness, water retention (particularly around my eyes), blood marks on my skin that come and go and occasional severe cramping in my hands, limbs and torso. But I am alive and so grateful that such a treatment is available. Discovering that this drug was only first prescribed (in America) in 2002 was a big eye opener! I am seeing my consultant every three months and they are happy with my recent blood test results.

My life now is very different as I am my wife’s principal carer (for which I receive Carers Allowance) but I have to look after myself too. The tiredness is a daily issue which I struggle with, not helped by my not sleeping well; I never sleep right through the night and regularly wake up at 2-3-hour intervals, no matter what time I go to bed. Julie’s condition is such that her short-term memory remains poor (most days she needs to be reminded where she is, what day it is and who is in the house) and her capacity to learn or relearn tasks has gone, so this means being very patient.

For many years I worked from home and I continue to do a little consultancy work, though I am careful not to exceed my weekly wage allowance of £120. This is a dilemma, as I would prefer to increase my work a little (although I doubt I could manage more than two days a week) but my responsibilities as a husband/carer and a father take most of my time and I do not think it could ever be enough to justify turning down my allowance. It is strange that as a cancer sufferer I do not receive any benefits for my own illness (I think the only thing I do get are free prescriptions!). I tried to see if I qualified for any disability related benefits and was turned down, as in the early days after leaving hospital I could not do much on my own.

I am now fairly self-sufficient in terms of mobility, but struggling all the time with the physical demands made upon me; I am often exhausted. I need more respite in order to be able to think properly about my own needs and to protect a semblance of motivation for my own life interests. Occasionally, I am very fortunate to receive a small grant from Buckinghamshire County Council to fund travel for me to visit my mother in Scarborough, which is always a genuine rest for me.

This is my new life after cancer, made more difficult by the many other factors now part of my daily life. On the bright side, my wife and I have been so lucky to be alive at a time when our serious illnesses could be treated. Otherwise, we would not be here at all.

 

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