Narratives & Stories

Alexander's Story

Alexander was a 19 year old university student when he was diagnosed with rhabdomyosarcoma.

Handling Cancer from a ‘Mum’ and ‘Dad’ Perspective

Things got off to a bad start when the diagnosis of Alexander’s cancer was delivered to me alone, over the telephone by a consultant who should have known better than to impart such devastating news in this way, and bearing in mind that Alexander was 19 years old, also breached confidentiality.

With hindsight, however, it did at least allow us time to choose the most sensitive way in which to tell Alexander, whilst plucking up immense courage to do so. Because of the situation we found ourselves in an immediate agreement of sharing all the trauma as equal partners was a natural outcome, creating an even more special bond between the two of us. Neither of us felt that we stood alone any more, on any issue to be faced. The breaking of the news we decided to delay until Alexander had recovered from a long train journey home from University and so the next morning arrived. I was very uncertain that I could keep calm and would probably burst into tears. This being unhelpful Phil offered to tell him on his own after which I joined them very soon afterwards and it seemed natural to all cry together.

From the outset, Alexander was so incredibly open and honest, amazingly philosophical and thoughtful to everybody else, saying, “well we’re in this together. I’m just sorry you had to tell me yourselves in this way”. He always maintained that “its much harder for you all than for me”. I shall never really understand such selflessness. We are just so thankful and lucky that throughout the whole painful journey, Alexander eased the way whether it was with us or others around even fellow patients who were relieved to be helped out of what were sometimes awkward and struggling moments. People warmed to his frankness. Looking back and dealing with the present time, I realise that it is those very qualities that have humbled me and caused me to cry so freely. Alexander took control of his life from the moment of truth and onwards. He invited us to be part of the team, always thanking us for being there and valuing our support and input. We tried never to intrude which at times I found really difficult. Phil (my husband) seemed better able to cope with this. His strength lay in the ability to wait quietly in the background until needed. My reaction wanted to be ‘impulsive’ – not always appropriate but I put it down to ‘motherly’ instinct! Early on, I knew that dealing with Alexander’s brother, Ben, would be an equally difficult task and I don’t think I succeeded very well because my energies were focused on Alexander. Somehow, Ben managed to float along with us but relied very much on his close friends for support and sympathy as well as frequent and intimates chats with his brother. To this day, they remain a secret. I know that Phil tried very hard to keep Ben on an even keel because he managed to view the whole scenario in a very balanced way, giving Ben time to himself and time to listen.

Open discussions as a family became commonplace. On a day to day basis during active treatment, clinics and in-patient visiting, tasks were shared although most of the running around was easier for me for my work was not full-time and therefore less structured. (Many of the hospital visits for e.g. blood tests were dealt with by Alexander himself when he was physically able to do so and Ben too played his fair share of transporting). A few specific consultations I could not face, so Phil always was willing to be brave and accompany Alexander, thus lightening my burden. Again an agreed and shared responsibility.

Phil and I used the time on our own to discuss how best we could handle whatever lay ahead, in practical terms but we never revealed to each other how we really felt inside for fear of upsetting emotions even more. I wanted to share my despair but knew that talking freely might interfere with all the ‘positive’ aspects that we shared. Therefore I tried to keep my ‘crying time’ till I was alone and found great comfort in keeping a diary as a companion where I could jot down my innermost thoughts and fears. Phil was never afraid to cry a little but I always felt there was more ‘bottled up’ which he wouldn’t or maybe couldn’t release, even because of protecting me. He did confide in a friend but I don’t know whether he ever put his feelings down on paper. Instinctively, we knew when it was time to go for a long walk together!

As Alexander’s illness progressed, I desperately wanted to be able to have some time together with him, just mother and son. I knew that he wanted to live life to the full and did just that, exuding happiness and hope wherever he went. It was a joy to see and I wouldn’t have dared to stop him. BUT, I was jealous that he spent so much time out of the house. It was selfish of me, I know, but at that time we didn’t know exactly what time limit was realistic and it was important that Alexander did his ‘own thing’. Phil never expressed the same wishes but again that is the difference between Mum’s and Dad’s relationships with their children. Nearer the time of death, we as a family, re-visited several childhood ‘favourite places’ – happy moments yet so poignant and precious. Looking back, we are happy to know that he did what he wanted. It wasn’t that Alexander didn’t want our company he just wanted to share himself around and quite right too.

When Alexander became so ill towards the end, Phil took off several weeks from work to be at home and share more precious time together as a family. He became totally immersed in the day to day running of the home and in Alexander’s care assuming responsibility for the most intimate routines which Alexander really appreciated. We shared the ‘sleeping aside him’ shifts as well as entertaining him and his hoards of visitors. It was a wonderful time filled with lots of laughter as well as tears. Alexander was still at the helm, directing all, but the last few days were free of anxiety. Our openness with each other led to a unity at the very deepest level both emotionally and spiritually. Ben too was part of this and I feel nothing was hidden.

One thing I must mention was that I wasn’t very good at accepting other people’s offers of help which Phil, thank goodness, encouraged me to change. It was their way of showing concerned and I did not fully appreciate their kindness at the time. Another concern, we were totally unaware of, was just how pushed out the grandparents felt. We thought that we were doing quite a reasonable job keeping them informed but emotionally they felt severed.

Overall, I would say that Phil had a more realistic expectation of the possible outcome of Alexander’s illness. I would never quite admit that things might not turn out for the better. That does not mean to say Phil was never hopeful. We both were, as indeed was Alexander throughout. Alexander made the trauma bearable by his own positive attitude and philosophical view of life.

“My life might be a bit short but I don’t regret anything that’s happened. I’ve had a wonderful time, done so much – just a shame it can’t all be for longer. In the great scheme of things my life is just a passing moment and there’s a whole lot more to do where I’m going”.

With words like that, we can only feel humbled and proud. We know that it was him who helped us through. He made the difficult journey easier to bear and we’ll forever love him for that and simply being himself.

Since Alexander’s death, we have grieved in different ways. We both talk about him a lot and get upset when others choose not to mention him. We need to have him in some conversations, otherwise it is as though he has never been. We both find this difficult.

Phil keeps a lot to himself. He has always been a very private person. I can usually sense when he is feeling down but pray that he could tell me more. I still feel he won’t, in order to protect my emotions. Sometimes I wish I could tell him how I am. I hint at it but never reveal the true depth. I still cry very easily and have learnt to give in when I need. This brings me a huge release of tension. I continue to keep a diary for special occasions. We both celebrate Alexander’s birthday and anniversary together. Phil takes a day off work and we make it a special day – not morbidly but always try to do something Alexander would have enjoyed. We love these days and on these occasions can both be free without thoughts and tears. We definitely mention when we have particularly ‘good days’ and these are on the increase!

I am learning to enjoy a few leisure activities again and don’t feel so guilty about having a holiday now. I still can’t ‘sing around the house’ which Phil can, and generally I would say that he is more ‘at peace’ with himself and the world. We both feel we have an added dimension to our life and are stronger people as a result. I try to help others in similar circumstances. Phil is nervous of extending emotional support outside the family. We both have a very different perspective on life now. We value simple pleasures and small kindness and are growing in faith, although the journey is not very easy, and often uncomfortable. Neither of us has long-term plans but at least can now look forward two months ahead rather than two weeks! Ben is encouraging us to live life again. He tries hard to do so.

One of the most difficult periods was immediately after Alexander’s death when trying to help Ben. Ben said, “I have to deal with this in my own way. Please keep off my back and I’ll come round in my own time”. I felt like a mum without a role – no Alexander, and Ben whom I couldn’t freely give a hug to and cosset. That was too lonely and tough. Ben went off to University, which merely focused my energies into my own grief. However the relationship with Dad seemed to deepen and Phil was allowed to be more positive in his help, albeit in a practical sense, which made him feel ‘needed’ and on which he thrived.

I respected Ben’s wishes, which has paid dividends. Ben thanked me for being patient. Our relationship is as good as ever and having finished University and living back home, I feel needed again and it’s wonderful! He is beginning to talk about Alex which for a while he never did to us (that hurt). He told very few people at University about his brother because he said it was the only way he could handle a potentially difficult situation as he tried to settle into a new life away from home. We are all beginning to bond as a family again but are each at different stages of recovery. We all feel slightly less vulnerable. Phil and I never wished to see a counsellor, although offered. Ben did, but for him derived no great help. The best ‘counsellors’ have been members of a family hit by similar circumstances. We still continue to support each other.

I’m trying to turn the tragedy into positive mode, involving myself in a Child and Adolescent Cancer Charity for which Phil gives me tremendous support. When time allows from work, he too intends to extend his help in a practical way. What we do voluntarily is both enjoyable and therapeutic. In a strange way I feel privileged to have had the opportunity of surviving such trauma. I hope I have become a better and stronger person as a result, more compassionate, a better listener and someone who hopes to share my experience with others yet to face a similar one. If I can be of service and help to others, then it will not have all been in vain. It has only been possible with the inspiration and example of Alexander and it will be the greatest tribute I can pay to him to carry on his wish – to help others like him, with honesty and openness, a smile and lots of love.

With Phil beside me, I hope this dream comes true.