Narratives & Stories

Alex's Story

Alex grew up in Germany with an English mother and a German father. Osteosarcoma was diagnosed during a “year out” before beginning a degree at Warwick University. His mother, Sue Grant has written the story of Alex’s fight against cancer in ‘Standing on His Own Two Feet’.

When we booked a family holiday in England in the summer of 1996, we said it would be the last one. Our son Alexander was 20 and about to start at university in Warwick, daughter Natalie was 18 and younger son Benjamin 16. And so it was the final trip together – but for a quite different reason than we had imagined: just before Christmas 1996, Alexander was diagnosed with an osteosarcoma.

For the past twenty-three years we (I am British, my husband is German) have been living in Germany. All three children were born there, attended German schools and grew up bilingually with annual trips back to the motherland. Alexander in particular felt more British than German and resolved at an early age that he wanted to “go and live in England like a real Englishman” as soon as he could, a goal that both my husband and I supported wholeheartedly.

Once Alexander had finished school, he was required by German law to do a year’s community service. Although he could have found a position in our home town, he wanted to be independent, self-contained and start heading north, so he left home to take up a nursing position in Hamburg.

This was a period of readjustment for us all. Alexander moved into new circles, found new friends and matured into a young adult, financially independent for that one year. For us, it was a time of learning to accept that he was going his own way and that our children were leaving the nest.

Spending that last holiday together made it quite clear that it was time to let go. Although we enjoyed each other’s company, and nobody regretted the trip, lots of negotiations were necessary before we could agree on outings, choice of activities and who should do the washing-up! After one protracted argument with Alexander about who should remove his dirty mug from the living-room to the kitchen, I really felt that I was growing tired of being the general dogsbody and looked forward to more freedom and independence for myself as well.

So when the shattering news came that Alexander had cancer, it posed us with myriad challenges. Alexander was used to being his own man, living away from home, making his own decisions and was immensely proud of the fact that he didn’t need our help in any way. All of this was now lost. The initial eight months of chemotherapy treatment took place (1997) in Germany. After that he enjoyed a year of remission before the cancer came back (October 1998) and was found to be terminal. Two of the last three months of his life were spent in the Royal Orthopaedic Hospital in Birmingham. He died at home in January 1999 aged 22.

Emotional aspects

Emotionally, the situation was complicated. We had not lived together for the previous one-and-a-half years, now we were thrown back into a family situation we thought we had outgrown. Moreover, it came with trappings reminiscent of infancy: Alex was unable to walk (the primary cancer in the tibia was large and the bone about to fracture), was altogether weak and helpless and financially totally dependent on us again. This placed the whole family under considerable strain.

Nor was the situation clear-cut. Sometimes Alex was back to being the child again, expecting us to sort out all the unpopular difficulties such as insurance and registrations, or clamouring for an ice-cream, wanting a cuddle and a kiss and generally basking in family love. But at other times – in keeping with his age and circumstances – he was the young adult who could manage perfectly well without interfering parents, thank you very much! We also kept forgetting which role we were playing or supposed to play…A muddle.

Interestingly, the doctors fell into the same trap. Children up to the age of about 16 are addressed with the informal “du” in German, after that the formal “Sie” is used. But the nursing staff kept switching from the one to the other, an outward indication of their own uncertainty into how to relate to the youngest patient on the ward.

Alexander also insisted that he had never wanted to undergo treatment in the first place, but that we parents had coerced him into it (although he alone was responsible for signing the forms of consent, which he did without protest), and he just wanted to be left to die in peace. As a result, he was aggressive towards us parents and sometimes to his bewildered brother and sister as well.

In hospital he did not endear himself to the nursing staff, at least at the beginning, because he asked for concrete information, explanations and the truth – necessary for him to stay in control. Whenever he felt that he was being misled, he refused to co-operate. It proved difficult for his doctors to appreciate that fobbing off an intelligent young man with half-truths was not the right strategy to build up trust or mutual respect.

Realising that the crux of the problem must be his loss of independence, his privacy, and his dreams, quite apart from the physical and mental torment he was going through, plus the fact that it was imperative for him at his stage of life to feel that he was still the boss, we tried to manage by humouring him and letting him lash out at us. But enough is enough. Eventually I lost patience, and we simply had to battle it out.

So the next time when he accused me of keeping him in hospital against his will, I rang for the nurse. Alex looked bemused and asked what I was doing. When I told him that I wanted to get the nurse to disconnect him from the various drips so I could take him home and stop all treatment, he seemed surprised. The nurse looked surprised too when I told her to unplug everything because Alex had decided to refuse further chemotherapy. At which point Alex had to make up his mind, and of course he continued with the treatment. End of argument.

This is just one example of the learning process we went through. Each one of us had to find a new role to fit the new situation. Over time, I think my relationship with Alex changed from mother/child to a more mature companionship. I got to know him better, to respect his wishes, to accept that he would and should make all the necessary decisions, and at the same time found him to be a good listener, a confidante and a very wise person. For his part, he learnt to accept that his parents were also suffering, that we didn’t always get things right, but that were doing our best.

The breakthrough came when I screwed up enough courage to defy ridiculous (German) hospital regulations and told the senior doctor point-blank that she’d better make sure somebody show me how to deal with cleaning the Hickmann line before Alex came home for a week’s break, or else…. (There is no equivalent of a district nurse for home care – we were left totally to our own devices). Alex was most impressed.

Once I’d got over my own terror of being responsible for this line coming out of an open hole in my son’s chest, we entered a new phase of intimacy which we both enjoyed very much. I understood why Alex would not let anyone near his line ( he felt, quite rightly, that one careless move would rip his insides out), and Alex learnt to trust me with this physically and emotionally sensitive task. (It reminded me of nappy changing days!) It was a base for a new relationship and continued well beyond the lifespan of the Hickmann.

For the other members of the family there were changes too. My husband had to find another way of relating to his son. He found it easier to be the intellectual support, the one who would agonise over the next move with Alex and discuss philosophical niceties.

Benjamin found it very difficult to cope with the sight of his hitherto strong, tall, big brother reduced to a skeletal shape attached more or less non-stop to drips and lines. It was a novel experience for him to discover that Alex (always a little arrogant towards his younger siblings) now actually needed his companionship and looked forward to it. The two boys became closer than ever before, even though on the surface it was all about computer games!

Frightening for him until today is the thought that he might also get cancer. Every so often he is under the weather, often admits to “bumps and lumps” of unidentified origin, and is worried. When this happens, I try to take his fear seriously and not tell him he’s just imagining things, but at the same time make reassuring noises about how highly unlikely it would be before despatching him to the doctor’s for professional confirmation. I hope that with time, he will be less frightened.

With Natalie the situation was completely different. Five years earlier she had been diagnosed as suffering from borderline syndrome, a severe personality disorder, together with addiction problems. She needed endless amounts of (undivided) attention and her behaviour was often difficult, to say the least. That her brother was now equally in need of constant care and attention did not please her at all, and she became more withdrawn and problematic. Faced with the increased stress levels – especially as we were told that Alex would lose his leg – she cracked up and ended up in intensive care herself after an overdose.

Much to our intense regret, we simply could not cope any longer with these two very ill young adults, and persuaded Natalie to accept the offer of a place in a psychiatric hospital, although we had always hoped to avoid that road. She spent the next four months on a locked ward, which was extremely distressing for us but at the same a source of relief. Although it was almost impossible to rebuild a good relationship with her in that period, her absence from home made us aware of how much the rest of the family had been suffering. Freed from that terrible strain, everyone relaxed and the boys began to reassess parent/child relationships, seeing perhaps for the first time the challenges we parents had been facing, found more comfort in their own relationship to each other, but developed more sympathy for their poor sick sister.

As I was with Alex in hospital in England for two months towards the end of his life, the family was inevitably split up at a most difficult period. Natalie was back at school looking A levels in the face. Benjamin’s girlfriend’s father had just committed suicide…And their brother was far away, dying. But there seemed no other solution: Alex was happiest in England, with his friends around him, and anyway, I couldn’t move him. So we had to compromise. Alex said he wanted to come home to die with his family all around him, and we did just that, so there was time for the other members of the family to be with him and say goodbye. Rather sadly, we could not avoid getting mixed up in a nationality contest here – which health service is the best, which treatment is preferable and so on. We walked on people’s toes in both countries as we were thrown in at the deep end each time, trying to come to grips with very different systems, cultural variations and another set of cancer terminology. Many people in Germany found it hard to accept that Alex was back studying in England in his remission year – we came in for a lot of criticism on this point. They did not understand at all that it was Alex’s wish and right to decide.

Practical considerations

It took us some time to sort out the many initial problems. The university (especially Alexander’s director of studies) did everything possible to assure Alex that he would still be enrolled, that he try keeping up by postal assignments etc. Family friends of mine collected his many belongings and stored them in their attic for the rest of the year– a considerable relief to us, so far away. University friends kept in constant touch despite the length of the treatment (8 months). Our own circle of friends kept in close contact until Alex’s operation (after ten weeks of high-dose chemotherapy). Once it was clear that quite miraculously his leg would not be amputated after all, but that an endo-prosthesis was possible (which also restricted his mobility considerably), then interest tailed off rapidly, despite the fact that we still had another twenty weeks of chemo to get through.

Friends in England gave us brick-thick support over the time in Birmingham, whilst the German side had to make do with letters and phone-calls. Once home again, people kept out of the way, partly because it was Christmas and New Year, partly because they felt disconnected after the break or just frightened and helpless. Alex was delighted to find later that he qualified for an orange badge in England and that the application was dealt with quickly. The process took a year in Germany and even then he did not qualify for disabled parking spaces, although he could not far without crutches.

When Alex was in hospital in Birmingham, I was again both impressed and very thankful to the university for organising details such as what to do with his digs, etc. Full marks to the social worker, occupational therapist and hospital staff for giving us continued support in many ways – the social worker continues to write to me now, a truly wonderful service. Accommodation had been arranged for me in the nurses’ home – another extremely welcome gesture that saved me no end of trouble.

Hospital in Germany was longer and fraught with problems. Because Alex was of age, the doctors were not allowed to divulge any information about his situation to us unless they had his permission in writing. Sadly, they did not tell us this, so it took us a while to work out what was happening. Further confusion was caused as individual staff sometimes broke the rule. Things only improved when Alex finally decided that we parents might be put in the picture, as he grudgingly admitted that we were “somehow practically involved”!

Nor was there any support from the (German) hospital whatsoever – no social worker, no therapist who organised the equipment we needed for the short breaks at home, no counselling and no awareness that the patient or relatives might need services of this kind. When I tried finding a self-help group, I discovered that there were two: one for children with cancer (up to about 15) and one for women with breast cancer. But nothing for young adults.

So I co-founded a small group and found the support there very helpful. Other families were battling with similar difficulties: disrupted schooling at a crucial stage for both the patient and siblings, university education, vocational courses, disability etc. We swapped information about books, medical literature, TV programmes, anything. Whilst there were certain holidays on offer to the children, or they were at the receiving end of donations, our children did not qualify for anything (in Germany – Alex was given a cash handout in England), although we had the same financial strains as families with younger children.

The initial diagnosis forced us to make some decisions on which activities we would continue with and which we would have to scrap. Growing all my own summer flowers and vegetables was an obvious candidate for the bin! But I decided to keep on working as a part-time teacher for as long as possible. I knew that I couldn’t and shouldn’t try to spend every minute of the day with Alex. Quality rather than quantity seemed the best motto. As a family we worked out a daily rota with three “shifts” in the morning, afternoon and evening of about two hours each and shared them out, so that the burden was spread (theoretically at least) over more shoulders. And as we still had a leg in the “real” world, we were able to amuse and inform Alex of incidents outside the hospital walls.

I also made a point of keeping up with my usual sports, as far as possible. Swimming once a week, a short bike ride in the morning, regular visits to the sauna, were a good way of letting off steam and staying healthy myself. I also followed my GP’s advice and went to see him every fortnight for a little chat and for him to give me a check-up in the hopes that he could catch anything before it started me really unwell. That was important for my own morale – it made me feel that somebody for heaven’s sake was concerned with my welfare! After all, Alex was in hospital (apart from the odd week or so at home) for eight months and Natalie concurrently for four.

Another point was keeping in touch with friends. To start with, everyone told us “give us a ring”, but we soon realised that this was unacceptable. Not only did it mean astronomical phone bills for us, but having to economise on energy levels resulted in us being simply too tired to take the initiative and ring someone. Much better for others to phone us, which they did once we had explained the situation. During the final months, many people felt happier writing or emailing. That was fine too – any kind of gesture that showed that people were thinking of us was much appreciated. On the whole, our friends were at a loss how to help us at all stages of the illness. It didn’t seem to occur to anyone that I could have done with help in the garden, or a cake delivered to my door, or somebody to whisk off the ironing! A common remark was: “How old is Alex?” and on hearing the answer, a sigh of relief and “Oh well, then he’s grown up, then”. Apparently this solved all our logistic problems! Hardly anyone reflected on the situation of the siblings, after all, you can’t exactly take teenagers of that age to the playground, so there “was nothing you could do”.

Financial aspects

We are not strapped for cash, yet we soon felt the pinch as terminal disease can take a long time. Many of the items we needed for Alex were not completely covered by our health insurance (in Germany) and we had to pay for some things out of our own pocket. Much money was lost on airfares that we had to cancel, paying for rent for accommodation nobody was using (although the university did its utmost to reduce this to a minimum), fetching belongings etc. from England, not to mention the little treats that we wanted to give Alex in an attempt to make his life more pleasurable.

During the last three months I had to give up work completely in order to be with Alex in England and then look after him at home, so there was another reduction in income (no disability living allowance in Alex’s case here). Funeral costs were high, even though we did nearly everything ourselves, and as a young student does not normally have any assets to bequeath to his relatives, there was no inheritance to offset the expense. At the same time we were paying maintenance for Natalie to live in her own flat.

Now, we are in a position to sort this out ( we cashed in a life insurance), but others families might not be so fortunate. Hearing well-meaning friends advising me shortly after Alex’s death to go “on a damn good holiday for a month with the family”, made me wonder if they appreciated the financial struggle that could be involved.

Death and dying

Alex wanted to be told the truth. No matter how unpalatable it was. It was imperative that he had the facts so he could continue to make decisions and remain in control, which in turn meant dying with dignity and respect. We had always spoken openly about the possibility of his death, and now that it was a certainty, we saw no reason for changing tactics. The doctors in Birmingham told him the score, honestly and directly, and then sent in a team of supporters to help with the repercussions. Doctors at our hospital in Germany avoided the issue and offered no back-up services. For us, the first approach was the better one.

I had to be very insistent before the (German) doctor was prepared to answer my question about what exactly would be the cause of death in the end (asphyxiation) and what could be done to alleviate it (sedation). But this information was vital to Alex – he was no longer afraid of death, but he was afraid of dying. He was tremendously relieved to hear that he would not have to choke to death while fully conscious.

We had many chats about life, death and how we would manage afterwards without him. For us, this was the right way. Alex was calm and unworried, and knew that we were ready to let him go, which made his death much easier for him.

I did my best to prepare his siblings too, by telling them his death was imminent, making sure that they had plenty of opportunities to be with their brother individually, even if they didn’t manage to say farewell in so many words. I tried to involve them in all the stages, from learning that they were helping Alex by being with him and not abandoning him, to buying him a computer game that might make him smile, to being with him at the moment of death as he wished, participating in the funeral arrangements and having an equal say in how to plan the grave.

But it is the same problem. Just because they are legally adults, an eighteen-year old and a mentally-ill twenty- year old are still very young and continue to need considerable emotional support. So more diplomatic efforts are required! And again, there is little appreciation of their agony and pain: “they are grown up then” is the reaction I get time after time.

Summary

Families of young adults with a terminal illness are in a catch 22 situation. On the one hand, the parents are normally saddled with the financial responsibility, the nursing and care and agony, on the other hand their “children” are adults and autonomous. Many of the problems to be faced are no different from those of families with younger children (e.g. school), but other areas have more in common with adult groups. It is an unsettling time of life anyway. The childlike features that trigger off universal sympathy have given way to beards, spots and rings through noses, but the adult work-based network and respected place in society is not yet functional. The result is frequently a bewildering roller-coaster ride through hostile territory.

Sue