When James came to his brother’s wedding I knew there was something wrong. He was not just jetlagged, he was very sick. Tired, pale with blotchy skin he didn’t look like my handsome boy. When he went back to the States he started to feel better and wasn’t sure if he should bother going to see the haematologist but both his wife and I insisted. The next thing I knew my youngest son was on the phone telling me that he was popping in for a cup of tea, not something he did on a regular basis because I live some distance away. As soon as he asked me to sit down I knew I was about to hear something terrible. I still remember the sensation that my blood was freezing in my veins when I heard the words ‘James has leukaemia’.
Firstly can you put into words how it felt to be told your son had cancer?
I couldn’t speak. My mind was racing and although my youngest was making noises, I couldn’t really absorb what he was saying. My world was collapsing and the enormity of what was going to have to happen hadn’t even really penetrated at that point. When I spoke to James he was convinced that he would be well in a relatively short space of time. We didn’t know then that he had 95% cancer cells in his blood and that it would take months just to get him into remission. Thank God we didn’t. I know now that I was in shock and that lasted for the longest time.
What effect did it have on you and your family?
As you can imagine the effect was devastating. I immediately booked a flight to America so that I could offer comfort in person. James is very close to his brother and has two sisters from his father’s second marriage. All his siblings were traumatised. I couldn’t tell my mother because at 98 years of age, she was deemed unable to cope with such ghastly news. I had to keep smiling at work and pretending that everything was fine when I was with the boys’ grandmother so I suppose in a way that helped me stay sane. My ex-husband and I had never really communicated since our divorce but now we had to pull together to support our eldest child.
Did you feel you could be any help to James? If so, how?
That was the worst, not being able to do anything. I really don’t know how I kept it together. James and I skyped more or less immediately and I knew that I had to be guided by him. No recriminations Elspeth, keep your anger and sense of injustice to yourself, just listen and above all, don’t cry! Right from the word go James was determined to be positive. He didn’t want people to know and feel sorry for him. He didn’t want to study statistics; he wanted to save all his energy for surviving and he was determined to survive. Not so long ago he told me that he never really believed that cancer would get him. I, on the other hand, was full of fear, doubt and abject misery. I had to come to terms with the fact that this time I couldn’t protect my own child or make him better. However, in my book, back in June 2013, whatever James needed James was going to get. I am not the calmest of people at the best of times but if James wanted me to be rational, sensible and above all, positive, then that was what I was going be. (God dammit)!
How did you find ways to stay upbeat and positive for James?
Quite simply because that’s what he asked for. James required us all to be upbeat and positive from the get go. I am not close to my siblings so never really watched my brother suffer during his cancer treatment and I was abroad when he declined but I was with James from start to finish. There were days when he was too sick to talk and Tiffany would send us updates. Those were the worst times, knowing that he was in so much discomfort and/or pain that he couldn’t even face a webcam.
Was being so far away geographically particularly difficult for you and your family?
If James had been in the UK I would have put my life on hold and sat by his bedside for as long as I could, however, with him being so far away and more or less totally in control of what he told us, it was very frustrating. I saw myself as an inadequate mother because despite the fact that he is a grown man and a father himself, I still felt like if I should have done so much more, but what? I had a job I had to try and hold onto and flying to the U.S is so expensive that I could only go once for a fortnight.
I remember when he was in the hospital in Missoula and I was able to sit with him during some of his chemotherapy treatment, he asked me to cuddle him. I lay full length beside him and wrapped my arms around his now slender frame and thought my heart would break! I did a lot of walking during those two weeks because it was the only way I could keep my emotions in check. I railed at cancer, I railed at God and I swore that nobody was taking my son away from me, not now, not ever! The irony is that had James been living in the UK, he might not have survived. He had the very best treatment that the very best could provide so now I am reconciled to his living so far away but at the time it was quite literally dreadful.
Were you able to have much contact with James throughout his time in hospital?
Thanks to modern technology James was able to webcam from his hospital bed. Sometimes we would skype with my grandchildren sitting on their father’s bed with masks on, surreal! I am very much aware that it could have been a lot worse, had it been a few years ago I would have felt totally cut off!
Did you know much about leukaemia or bone marrow transplants before having to experience it with your family?
To my shame I have to say no. We have all heard of the Anthony Nolan Trust but when it doesn’t directly effect you, you put cash in a tin or donate when a friend runs for charity but until you have a loved one waiting for a match, you have no idea how important it is for people to register and follow it through should they be asked to help a sufferer. I am too old to offer bone marrow but I have become an organ donor! My son received a perfect match which I am sure contributed to his amazing recovery and I cannot wait to thank the 24 year boy who saved my son’s life. We should all be more aware and there should an opt out policy for bone marrow registers, not an opt in!
What ways of coping did you find helped you through James’s treatment?
I have already mentioned having to be consistent when with my mother and the fact that I had to go into work every day and serve the general public focused my mind. My youngest son was very supportive and the love and kindness of friends was invaluable! People were horrified, particularly after watching me struggle with my own recovery and the residual effects of my surgery, but the most important strategy I used at that point was instigated by my son who needed me to be upbeat and adhere to his agenda during his treatment. He had a plan and even now as he tries to put it all behind him and move on, I am led by his needs!
Were you able to speak to anyone who had been through anything similar at the time? If so, did this help and what sort of network, if any, was available to you?
For some time after diagnosis there was no one to talk to. James did not want his cancer to be common knowledge so I tried to keep the information within the confines of immediate family. Even so, some people close to me didn’t understand James’s need for privacy and spread the news, much to my dismay! I eventually told a good friend whose daughter knew of Jonjo Rooney and Bpositive. I got in touch and he was there for me immediately. A life saver!
Some parents take the approach that staying away from the specifics of the treatment, whereas others need to get a grip with everything in order to understand everything. What approach did you take and why?
I’m the kind of person who has to know everything. I did the same with my own Acoustic Neuroma and to be honest got some fairly inaccurate information. James was dead set against googling anything to do with Leukaemia, but I felt compelled to try and understand exactly what we were all facing. I wished I hadn’t because the information on the internet is general and more often than not quite frightening and anyway, every cancer patient is different. James told me that he wasn’t interested in odds; he was only interested in getting better so I stopped putting A.L.L into the search engine and told myself that people react differently to the disease, to the treatment and only a positive attitude was paramount. Forget statistics, my son was going to beat this!
Being positive is like growing older. It is an attitude of mind.
You can give up or you can fight for your life.
What advice would you give to someone experiencing what you did right now?
Have faith! Be kind to yourself and don’t feel like you have failed because you need to shut yourself in a dark room and howl! What’s important is how much support and positive vibes you can convey to your child. Keep your sense of humour however insanely difficult. Believe that no matter how hideous the treatment, it is making your son/daughter well again but it is going to get worse before it gets better. Get used to their spare frame and their bald head, because underneath all that is your little boy/girl who really needs Mum to be strong and try not to make them feel guilty because you are in so much pain that you don’t know what to do with yourself. Above all, tell them you love them every minute of every day and be there for their friends and their spouse and value the love and the encouragement they can offer. James is a popular lad with a beautiful and loving wife, I was just part of the support system and we all worked together to get to where we are now!
Has this experience changed your relationship with James in any way?
James, David and I have always had a good relationship. Their father and I divorced when they quite young and the onus was on me to give them what they needed at different stages of their young lives. James was more of a daddy’s boy primarily because they have so much in common, but as far as being close is concerned, the boys have always looked to me for affection and any confidence building required! James and I now have a deeper bond and when we talk, we really talk. I am a terrible chatterbox (being half Irish) but find myself listening as much as talking when I spend those precious hours with James on Skype. He is so appreciative, so determined to do everything and see everything and no longer takes anything for granted. He has pledged to give back wherever possible and this has made him into a truly worthwhile human being. I have been blessed with both my children and having had to face the ghastly possibility that I might lose my eldest, the fact that he is now cancer free has made me happier than ever before.
Having had to overcome various dark times previously in your own life, was there anything you felt you learnt from those experiences that helped you cope when you had to watch your son battle leukaemia? If so, where did the strength come from?
There is always an element of ‘I had no choice’ in this. When they removed my brain tumour they paralysed my vocal cord and I can no longer sing. Having been a professional singer on and off for over forty years, I thought that nothing worse could happen to me, I was wrong! I had to have counselling to cope with the loss of my career and my livelihood but when James was diagnosed I no longer needed help to adjust to my new life! All of a sudden I was glad that I wasn’t on a cruise ship or doing a six month contract in the Mediterranean because I could fly to America at the drop of a hat and the rest of the time I could be available to webcam whenever needed. I found the strength in the same way that when you have children you put yourself on the back burner; I listened to James and tried to put my somewhat over emotional and larger than life personality on hold! I found the strength because I had no choice, this was not about me; this was about my son and what he needed to triumph!
Finally Elspeth, what makes you Bpositive?
Marvelling at my son’s new head of curly hair. Listening to him laugh and talk excitedly about his success at work, his love for his family, his adventures in the beautiful place where he lives. Realising how well he is thought of and how much his colleagues value his contribution and his dedication. Counting the days until I can hug him in September and then again next May when I can book my plane ticket and James and I can do all the things we couldn’t do when I was there in 2013 because he was so very poorly. Last but not least, valuing all the new friends we have made at various stages of this very difficult journey.
Being positive is like growing older. It is an attitude of mind. You can give up or you can fight for your life. I have lost friends who didn’t have that chance but James and I have been given a wonderful opportunity and intend to go from strength to strength. The trick is to never take anything for granted and instead of worrying what maybe missing in your life, learn to appreciate your blessings, the most important being the health and happiness of the people you love.