Cancer In Young Adults ... Through Parents’ Eyes

Narratives & Stories

Alexander I's story

Alexander was a web developer and IT technician who was diagnosed with a rare soft tissue sarcoma in his thigh when he was 21.

At the age of twenty two, following a routine X ray, I was ushered in to see a consultant and told I had something wrong with me.

The condition began with the letters sar, but I could remember no more than that by the time I got home. With an appointment to discuss treatment a whole week away, I looked in the Medical Dictionary and I had two choices staring at me …. I had either sarcoidosis, or a sarcoma. Never one to plump for the easy option, I decided I had a sarcoma, and I read with growing horror that with this condition limbs may have to be amputated, and outlook was very bleak. (This was a long time ago. Surgeons are now wonderful at removing just the lumps!)

I rushed round to my GP who quite amusedly I think, was able to put my mind at rest, and say ‘No, you have sarcoidosis. You will be put on steroids for a long while, but you shouldn’t have any problems from it’, and indeed that was the case.

How dreadful then that my son, our only child, at the age of twenty one would be sitting in a consulting room being told he did have a sarcoma. He was told it would be a further two weeks whilst more tests were done on the biopsied tissue before anyone could determine exactly what type of cancer he had, but that the news was not good; cancerous cells could have moved from the primary site to any part of his body. The consultant said he would refer Alexander to an excellent orthopaedic surgeon to have the lump in his leg removed, but if that particular surgeon was too busy, then he himself would be prepared to ‘have a go’ at cutting it out.

My son sat in that room along with his father and myself, (with a medical student in the background making notes), absorbing this macabre information and not once did he lose his composure or forget his manners. How we ever stoop up, thanked that man for the interview and shook his hand as we left, I will never know, because looking back now I could punch him for the way he told that news to us.

For the next five years Alex was to have many consultations, most of them with doctors far more compassionate than that first one, whom we never saw again. Every time there was a test poor Alex would be told the news was not as good as they hoped. The cancer would have spread. From the initial lump in his thigh, it went to his groin, where it was again successfully removed, then to his lungs, and finally to his brain.

During the last six months of his life my son couldn’t work and had to give up driving his car. His wedding was cancelled, he and his fiancée split up and he returned home to live with us. He lost the capability to walk steadily and to write legibly. His vision was seriously affected for a while. He experienced episodes of severe agitation, rather like panic attacks. He also temporarily lost his good looks and his hair after steroid and radiotherapy treatment; both assets thankfully restored within a few months.

During all this negativity in his life, he never once lost his sense of humour, his kindness and caring towards others was undiminished, and his enthusiasm for learning new things every day was as keen as ever, right up to the days before he died.

Alexander’s acceptance of his condition, combined with his absolute refusal to let it stop him living life as fully as possible, made our lives as his parents easier than they might have been during his last five years, but that is not to say that our lives weren’t sheer hell, both then and now.

As his mother I revolved my entire life around my beloved son. From the time we first suspected he had cancer right up to the present day, it would be true to say that there has been no joy. We socialize, we laugh, we present ourselves to the world as we always did, but there seems no purpose to anything now.

Once the cancer was diagnosed I became obsessed with finding out all I could about effective treatments. If there was a newspaper headline suggesting a ‘cancer breakthrough’ (and isn’t there always?), I’d buy the paper and read avidly, only to see it wind up in the usual way … ‘should be available within 5 years’.

I rang universities throughout the British Isles asking for details of trials they might be carrying out, and generally the professors and scientists I spoke with were all very accessible and compassionate, but every call ended with disappointment that Alex’s form of cancer was not what they were working towards curing.

I even read in a dog magazine about a vet whose animal cancer treatments were being trialled at a hospital. I spent weeks on that one, ringing the hospital and begging for Alex to be included in their research, but again it all came to nothing.

A doctor in America gave Alex a telephone consultation, and we followed his advice to start including in Alex’s healthy eating plan dozens of vitamin supplements. These obscure potions and high dose herbal pills cost us over three hundred pounds a month, but seemed to work wonders … for a while. Actually when I say it cost us, I tell a lie, as Alex was working and always paid for these things himself. He wouldn’t want me to lie to you!

All this tracking down of help for Alex was a way to make me feel I was being of use to him. I was convinced I would find a cure for him, and we would go to his hospital appointments together, and quiz doctors about their plans. My GP once said that I was always worrying about the ‘next step ahead’ before Alex reached it, and of course I had to. I never wanted my son to sit through another consultation which would impart depressing news without having had time to prepare myself for what we would hear, and to have questions ready to show Alex that this turn of events is quite common, I was half expecting it, and it was nothing to be unduly worried about.

We found consultations to generally be depressing affairs. Not just because the news wasn’t always what you had hoped for, but because of the way doctors impart it. When Alex had multiple tumours in his lung, they stayed the same size for about a year. When they began growing again they did so very slowly, and it didn’t overly concern us as long as they carried on like that. Somewhere in the back of my mind was still this theory that I could find a cure, all I asked for was a bit of time to continue my research.

So, when we walked into the surgery to see the tumours had grown by a really tiddly amount, hardly noticeable in fact, it was always an annoyance to hear the doctor point out that ‘he was afraid’ that they were still active and growing. Yes, we knew, we expected that, but we were delighted to see how little they had grown. The phrase ‘I’m afraid that…’ or ‘This is not good’ and so on, which seemed to crop up every hospital visit, was just so b. annoying to hear. We would be the judge as to whether this was bad news or not. Compared with what we had imagined whilst waiting for the results, they were usually better than we had prepared ourselves to face.

As I say, life just seemed to revolve around finding out what I could. I rang Bacup frequently, and their excellent information service provided me with emotionless analysis of Alexander’s situation. We learned far more from them than any other source. They are a brilliant fact-finding organization.

Despite all this optimism I displayed unfailingly to everyone, a part of me was already looking ahead to a life without my son. I didn’t want to be without him, I felt ashamed of myself for even thinking of his death, and yet I increasingly spent hours sitting at home imagining all sorts of endings for him, wondering how it would be. How we would all cope.

I used to sob and weep and howl and then I’d remind myself of all those sayings along the lines of ‘don’t waste today worrying about tomorrow’, and determine that I would cease thinking such dreadful thoughts… and then I’d stay sitting there and start thinking of them all over again.

The odd thing about this sort of daydreaming is that I could instantly pull myself together if there should be a knock at the door. I would give a grin and welcome the caller, and stay bright until they left … and then off I’d go down despair road again.

I lost the ability to sleep well, (still can’t) and so I would record radio 4 throughout the day, and I’d then listen to the tapes at night through headphones. This helped me drop off to sleep, and when I awoke at two, three and four (invariably with the cord wound tightly around my neck!) I’d turn the tape over and listen to the other side. Sometimes it took four listenings to actually follow a whole play through to the end, and I would eventually finish it whilst walking the dog the following day.

When Alex moved back home it was an acceptance on his part that he was dying. I’d pleaded with him for months to return home. His relationship with his fiancée was breaking down and he was alone all day in his flat, fending for himself with his dodgy eyesight, wobbly walk, panic attacks and etc. We had remarkably few arguments whilst he grew up, but oh boy did we row during this period of time.

I wanted him home. I wanted him to be cared for properly. He was my son and I wanted him with me to shower him with love. He wanted independence. His wedding date was set and then cancelled. Reception booked and then cancelled. A dreadful time for everybody, and a very sad time to see a once-happy relationship founder under the strain of coping with such a cruel illness.

So Alex came home. We soon had a little routine going, and it was wonderful to be able to care for him, and enjoy his company all day long. When he said after being home for a few days that he was so happy to be back with us, I was thankful that he had made the right decision.

However, it was physically and mentally exhausting, especially for me. To keep on a happy face most of the time, when I’d been used to having an indulgent crying session was really hard. Many was the time I left his room laughing at something he’d said, only to find myself sobbing before I’d reached the kitchen, a few steps away. Silent sobbing of course.

As Alex got worse his medication needed constant adjustments, and our GP was wonderful. She wanted to bring in community nurses to help work out a pain control programme, and any other needs that might arise, but Alex was adamant that he wanted no nursing care. He was happy for our GP to call in, but he felt no need for anyone else to come, and we all valued this special time together and didn’t want anyone else ‘interfering’.

This was agreed upon, and by now Alex was on oxygen, supplied by a local chemist shop. The pills he was taking were proving difficult to swallow, and so it was arranged that I visit a local hospice for an hour’s instruction on how to administer morphine and etc via a syringe driver. This wasn’t as cavalier an idea as it might at first sound, as we have two friends who are nurses, and when I did the first ‘injection’ my work was overseen, which reassured both Alex and me!

Another need for the syringe driver was to calm Alex’s agitated mind and body. He was getting terribly worried about everything, not complaining you understand, but just wanting to settle all his affairs and distribute CD’s to friends, and that sort of thing. He had trouble sleeping, due to shoulder pains and this agitated state of mind, and the syringe driver, once the medication was adjusted properly, knocked him out into a very deep sleep from which he never awoke.

That was the biggest shock I think. I had the impression that the medication would just leave Alex out of pain, but it so effectively calmed him that we were never able to speak again. Our darling son died at 8.20 on July 15th 2002. I was holding his hand and telling him we loved him.

I wanted no one at the funeral except us, his parents, but his oldest friend who lived next door asked if he could accompany us, and we realized it would be cruel to refuse. This young man had lost both his parents within the previous few years, and in my grief I hadn’t realized how selfish I was being in ignoring his feelings.

So on the day of the funeral there were a sad three of us listening to some of Alex’s favourite music at the crematorium. There was no service. The funeral was on 19th July 2002. A few short months beforehand we had been planning his wedding for the 20th July 2002.

Letters arrived at the house telling us how people were ‘sharing our sorrow’. I threw them out. How could they share my grief? How did they know what it was like to look at your only child in his coffin, and want to climb in with him and hold him tightly forever? How did anyone understand how I felt? How dare they say ‘I know what you feel like, because I’ve lost my husband, sister, mother…’. I’d lost my only child. Their loss was nothing to mine.

I ignored people in the street. I kept inside the house as much as possible. I didn’t answer the phone unless I knew who it was and wanted to hear from them. I was hurt and couldn’t understand that others were hurting too. By refusing people a chance to say goodbye at Alex’s funeral there were a lot of folk who didn’t know how to mark his passing.

The people Alex worked with started a book of memories. Everyone wrote as much or as little as they wanted to sum up how they felt about him. It was presented to us in October of 2002, and by then, word had got around about this project, and everyone who heard thought it a good idea. We asked friends whether they would like to write about Alex, and we would have their contribution made up into a book, and copies given to everyone to keep.

Well this book idea nearly drove me mad, but it eventually went off to the printer’s who made a professional job of it, and it now graces bookshelves up and down the country. It contains photographs, poems, drawings and letters. Everyone who contributed has been fulsome in their praise for the finished product, and it has given them a lot of comfort to read their own article, and then see what other people wrote. It gives a rounded impression of Alex, and seems to have inspired some people who are living with illness themselves to keep their pecker up.

The book project occupied a lot of my time during the first year of Alex’s death, but not so much that there weren’t thousands of tears shed. Every day there would be minutes when I would stand holding onto a piece of furniture and just howl with pain at losing Alex. Where was he? Was there an afterlife? I didn’t believe so but I wanted there to be. I wanted to die but I couldn’t kill myself because Alex never gave in and if there was another world to go to I didn’t want to do anything that might make me never see Alex again. So many contradictions went on in my mind.

I didn’t want visitors to mention Alex, but if they didn’t say his name then I did. I wanted no one to ring, yet was disappointed if the phone never rung, even though I may not have answered it.

That’s pretty much how I still am now, three years after Alexander’s death. I feel distraught that I don’t know where he is, I feel hurt at recalling his suffering, it upsets me to look at his photographs, yet I can’t put them away. It’s all still so raw. I cannot ever imagine not crying when I think of my son, yet others tell me that I will. I bet they’re wrong.

We have no purpose in our life now, my husband and I. We have a little dog who makes us laugh and gives me a reason to get up for, but the one person I want to hold and laugh with isn’t ever going to be here again. The future for us in an unenviable prospect. We have each other, but we don’t really talk. He has his work. I have the house to look after. That’s all there is right now. I feel we have nothing much to live for now, three years ago we had everything.

Alexander was 21 when he was diagnosed with a soft tissue sarcoma. He died aged 21. Despite what follows, his life was a happy one, as he himself told us shortly before he died. However, these are some of the problems he encountered whilst living with cancer, combined with suggestions of how things could have been better.

The one thing above all others that would have been helpful to Alex, my husband and myself, would have been complete honesty from everyone involved in Alex’s treatment.

Following his death, I borrowed all my son’s medical notes from our GP, and photocopied them. Reading them through now I can see so many times when Alex was misled about his cancer’s progress, and in particular, the lifespan he had left to him. Clinical oncologists, well certainly the ones we saw, will never answer a question regarding expected lifespan. Even though Alex always asked people to be open and frank with him, he was misled into thinking he would be ticking along until his 40’s. In fact he had an aggressive form of cancer, which was incurable. I only found that out when I had access to all his notes and could study them at leisure.

This misinformation led Alex and his fiancée to start buying a house together, only to find within a year that his health was so bad, (he had developed multiple lung tumours and 2 brain tumours) his fiancée couldn’t cope with the strain, and their home had to be sold and the wedding cancelled. It was a dreadful time and a strain that needn’t have occurred if someone had just been honest with Alex when he asked them to be.

Having hope is all well and good, but there came a time when we would have preferred the truth. I read a book recently which had these lines which express what I’m trying to say: ‘The despair I can cope with, it’s the continual hope that gets me down.’

Despite having worked for the Citizens Advise Bureau, I found out most of the information that proved helpful purely by chance or from friends. For example Bacup. They were brilliant at answering queries and sent us some informative pamphlets about sarcomas, cancer treatments and alternative health products. This was an organization I heard about through a friend.

Anything mentioned in consultations that puzzled us, or questions thought of after leaving the hospital, could all be put to Bacup’s volunteers, and they would give unflinching, unemotional responses. I can’t believe how much difference this organization made to our lives, and yet it was chance that we ever heard of them.

When Alex developed brain tumours and had to stop driving, he thought he would have to stop working as well. The journey to his office was a long one, and public transport not practical for him. Once again, a friend pointed us in the right direction by telling us of a scheme that would help. If you were registered disabled, had a job but no way of getting to it, then mini cab fares would be paid for. With the help of our GP this was all set up for Alex, and it enabled him to continue working for a few months, which pleased him greatly as he liked to be useful and independent.

When he really couldn’t work any longer I asked our GP to help get Alex ‘Attendance Allowance under Special Rules.’ This is a benefit rushed through the system, for people diagnosed as having approximately six months to live. No one in authority told Alex he was entitled to this money, and this was presumably because no one wanted to put a time limit on his life, despite the fact that Alex himself understood his situation very well.

By withholding this information, they were effectively adding to the strain of his life because he needed money, he liked to be independent, but he didn’t know he was entitled to make a claim.

It was this allowance that enabled him to buy a dinky little digital dictation machine for example, which was a marvellous thing to have when he could no longer write things down. It also bought a new digital cordless telephone to save me having to stretch the wire on our old machine in an effort to get it to Alex in bed!

Incidentally, the Benefits Agency had no qualms about telling the truth to Alex. They sent him a letter saying he had been granted the allowance under the Special Rules, and then went on to explain just what those rules were!

Alex refused the offer of nurses calling to the house to administer daily medication, and was put under a lot of pressure over this matter. It seems no one has ever refused such care!

Well we felt quite able to cope on our own, and I would have resented anyone elbowing me out of the way, rather in the same way that I have yet to hear anyone say they welcome visits from health workers when they have a baby.

In case you think Alex was influenced by me in this matter, I must point out that he had refused to meet MacMillan nurses way back in his illness, when he was living in his own home. His reasons were:

  1. He didn’t feel the need for their emotional support.
  2. He preferred to discuss his medication needs with consultants or his GP.
  3. He wanted to live as normal a life he was able to. This meant having friends calling in and being able to go out when possible. Alex felt nurses coming in would make his life revolve around his illness, when he wanted his illness to revolve around his life.
  4. Because so many of the medical profession had lied to him throughout his treatments, he felt he’d rather spend his last weeks with people he could trust completely, even if the level of pain relief might fall short of that experienced by other patients in his situation.

Our GP helped me get around the problem of administering the copious amount of drugs needed for pain relief, sleep, controlling fits and so on, when Alex could no longer swallow. She arranged for me to visit a local hospice for an hour’s instruction on how to make up and insert a syringe driver. We were very grateful for this tuition, and it enabled our son to die peacefully in his own bed, with no strangers around. Exactly the way he wanted to die.

If Alex was with us now, I think he would want every person diagnosed with a serious illness to have the news broken to them in a sympathetic, yet truthful way. Ideally, there would be an opportunity within the first few days to chat with someone who could outline expected treatments, where they would be carried out, and what problems might arise regarding everyday living.

Alex had to wait 8 weeks following a brutal diagnosis of cancer (by a very nasty doctor who I’m pleased to say our GP no longer refers patients to), before his sarcoma could be excised. It was 10 weeks before anyone sat him down and explained what type of sarcoma he had, and answered our questions. This was 10 weeks of almost unbearable tension, as we thought for all that time that Alex might only have weeks to live, such was the implication given by the first doctor, all those weeks ago.

I also think Alex would advise professionals to tell the truth at all times when requested to do so by the patient. We don’t all need to be protected from reality. Hope that never materializes is more damaging in the long term than an unpleasant truth.

Ideally, treatments should be carried out in local hospitals.

We were very fortunate in this respect as Stanmore Orthopaedic Hospital staff oversaw the operations (he needed two), and Mount Vernon Hospital was where all the radiotherapy sessions and future check ups took place. Sadly, Mount Vernon is under threat of closure. Both these hospitals are within easy driving distance of our home, and Alex was able to have his radiotherapy sessions at a time which meant he could still go on to his place of work. He didn’t miss a single day of work throughout his treatments, and this meant he was able to get on with normal life, which is so important to us all.

These small hospitals seem to be under threat, whilst so-called ‘Centres of Excellence’ spring up in major towns and cities. I feel this is completely wrong. Having had to attend a couple of appointments in other hospitals, Alex felt far more comfortable and cared for in the admittedly slightly run down, local hospitals than the large, impersonal North Middlesex, for example. This local friendliness is not to be underestimated when your entire world is undergoing a crisis. Also, it’s expensive travelling into towns and very difficult if you have mobility problems.

A booklet advising patients and their families of useful organizations would have been invaluable and saved many hours of research. Doctors often don’t explain things in enough detail and it is sometimes easier to ask questions of a friendly voice over the ‘phone.

Notification of allowances and services that patients may be entitled to would also have been helpful. This could be best presented in booklet form, and available in waiting rooms of hospitals and surgeries.

Talking of waiting rooms ….. when you’re really ill and there is nothing to be gained from attending out patients, why do doctors still insist on seeing you at these clinics? When it became clear that there was nothing available to cure Alex, he made the decision that it would be best it these appointments were stopped.

We wrote letters to his surgeon and oncologist explaining that it wasn’t really in anyone’s interest for him to attend each appointment just to be told if things had deteriorated. He wanted to be free of these wasted hours of hanging around, and the awkward consultations where people struggled to find something positive to say to him. I’m pleased to say both doctors sent lovely letters back saying they quite understood his feelings and would be happy to see him again when he himself felt a need for help.

Our GP expressed surprise at many of our decisions (I say ‘our’, because we discussed everything openly) and said we were not typical of the people doctors usually deal with. She said we asked very awkward questions and therefore doctors didn’t know how to handle us.

She went on to say this was absolutely the right approach, and that more people should question their treatment and options. This being the case, I wonder why more doctors don’t discuss things with their patients rather than simply tell them what will be done.

Finally, and most importantly to us, I think the professionals should back off occasionally, and allow the patient and their family to cope alone if that is their wish. Not everyone needs or wants professional palliative care, and I would say this especially applies to parents who are nursing their own child. Who better to look after a terminally ill child but the parents who have loved and cared for him/her all their lives?