Narratives & Stories
Alasdair's Story
Alasdair grew up in Scotland and was aged 15 and at school when diagnosed with osteosarcoma.
To Geoff and Helen Easton
Thank you sincerely for doing this. You alone understand the strain of supporting a young man through this hell. Bob and appreciate it. What I have written is really an account of Alasdair’s illness over three years.
Moira
To the Researchers of the Easton Project Into Young Adult Cancer
ALASDAIR 31-03-80 to 10-06-99
This is the story of our precious elder son Alasdair, who died aged 19 in June of osteo sarcoma which had spread throughout his body.
Alasdair was a courageous boy who had to fight mild disability all his life, even in the womb after I had a threatened miscarriage at 11 weeks pregnant. He was born one month prematurely by Caesarean because I had toxic pre-eclampsia.
It was not till he went to school that it became obvious that there was something wrong. It took two years to establish that he was very clever, but had co-ordination problems (dyspraxia). He fought hard to keep up in spite of severe writing difficulties. He achieved a lot – a certificate every year at high school for his effort, a cup in the first year for outstanding effort, and at the end of the 6th year, a special award, a cup for commitment – by this stage he had fought his first round with cancer and we thought he had won. This, of course, was not so.
Alasdair first started complaining of pain in his left leg at age 14. By 15, nothing had been established. We went to GPs, paid for a private physiotherapy session where it was established that it was not a problem for a physio. We then moved to another town because of my husband’s work situation. We went to a new set of GPs – still no help. Alasdair was now in a lot of pain. We took him to a sports clinic in East Kilbride, where the doctor told us to go back to the GP. It was, in his opinion, something like rheumatoid arthritis. We went back to the GP, who poo-poohed this idea, but did agree to write to Hairmyers Hospital and in the interim to refer him to a health service physio. We got his physio appointment for late January 1996. The physio put ice packs on – and behold a huge lump became obvious. The hospital appointment wasn’t till April. Alasdair had lost a lot of weight and we were worried sick. I had my decorator booked to come. When he saw Alasdair, he got a shock and insisted there and then that I get back on to the GP’s. I did. A different doctor saw him and referred him straight to Hairmyers, February 23rd 1996. It took 4 days to establish that Alasdair had an osteo sarcoma which had probably been there for 18 months.
From then on the system swung into action and the treatment was fantastic from Glasgow Western Infirmary Beatson Oncology Unit. On July 10th 1996 Alasdair had his femur removed in a 9 hour operation and a steel implant and synthetic knee joint inserted. A wonderful job. It also emerged at this point that Alasdair’s “disability” was not dyspraxia but that he was mildly SPASTIC. How that was missed for 16 years I do not know.
Alasdair lost almost a year at school (he almost died from the chemo on 19th April 1996). Our quick thinking in getting him to the Beatson that night saved him. He was totally dehydrated from sickness. He was awarded 8 standard grades on ‘appeal’.
He was now officially registered disabled. He learned to drive – a miracle because of his problems.
He passed two highers, music and computing. He was a brilliant guitarist and could fairly hammer out ‘Meat Loaf’ and ‘Queen’ on the piano.
He won a place at Coatbridge College to study electronics and music technology (HND). For the first time in his life, he was truly happy, he was achieving well without learning support from anybody. He drove a very busy route to college successfully. Life was really beginning for him at last.
Then disaster struck. On Boxing Day 1998 he complained of a sore chest, right hand side, he thought he had strained it picking up a tie from the bottom of the wardrobe. Alasdair couldn’t kneel and had to get right down on the floor and then pull himself up using furniture. However, by the end of January it was obvious something was wrong. He had never put on weight since his illness, but looked so gaunt that we packed him off to see our GP Dr Ahmed, who sent him upstairs for an x-ray, not thinking anything was really wrong. That was Friday 22nd January 1999. Alasdair was now 18_. On Monday 25th Dr Ahmed phoned to say, strangely there was a shadow on the left lung, although it was the right side which caused pain. He had already booked an appointment with our consultant Prof. Barrett at the Beatson before phoning us. We saw her on Thursday 28th January. She was totally puzzled. It was not in character for osteo sarcoma so she thought it must be an infection. Over the next month Alasdair had all sorts of tests. Nothing showed up. But Prof. Barrett wouldn’t let go. (The chest man was for giving up). Eventually she insisted he did a further intrusive test right onto the lung. And yes. There it was. An osteo sarcoma in the lining of the lung. Prof. Barrett had never seen this in 30 years of treating cancer. It was a mutant, and my husband and I knew from her body language that there wasn’t much hope, though she didn’t say this in words. He was diagnosed on 28th February 1999 – EXACTLY the same date as he was diagnosed on 1996.
Prof. Barrett set about the chemo immediately but he was by now so poorly that she had to use an older drug. After two chemos, signs of improvement showed on the x-ray. We slightly relaxed – which made what followed harder to bear.
He was complaining of “wobbly” legs before he left the hospital on Monday 29th March after a chemo. We thought he was exhausted. His 19th birthday was on 31st March. It was magic. Our wonderful Macmillan nurse, Heather had secretly arranged for the manager of Motherwell Football Club and Alasdair’s favourite player to come to the house. His face was a picture! Then, out of the blue, his beloved ex-child minder and family, who had moved up north turned up to visit. He had a wonderful day.
The next day we were going to the Beatson but he could hardly walk. We thought he was just tired after the birthday. By chance I saw Prof. Barrett in the corridor while Alasdair was being examined by someone, and I mentioned the walking. She waited to see for herself. That was the start of the real nightmare. An MRI Scan (emergency) showed that the tumour was pressing on the spine. He started radiotherapy later that day. We took him home. By Saturday he could not walk at all and had to be rushed into the Beatson. By Tuesday it was established that Alasdair would never walk again, the tumour had destroyed the blood flow and destroyed the nerves powering his legs.
Alasdair was so brave. His sense of humour never left him. He was told this devastating news at 10 00 a.m. on the Tuesday morning. At 3.00 p.m. a physio came to start working on getting him into a wheelchair. She said “oh Alasdair we’ll have to get you drunk”. His reply “I’m a student – I can’t afford to get ‘legless’”. This was why the nurses adored our precious son.
We got him home near the end of April. No-one told us he was terminally ill. We were left to work this out for ourselves which distressed us greatly. We had to ask our visiting GP if it was “curtains”. He said “yes”, but nobody knew how long it would be.
We decided after much discussion with GPs the nurses and Marie Curie nurses who helped us look after him and Heather (Macmillan nurse) not to tell him he was dying, unless he asked. He was still so hopeful for the future, getting back to college with a carer and so on, we couldn’t “shoot him down” as it were.
His pain was unbearable, but he tried not to complain. I finally got Dr Ahmed to tell me why had chemo been stopped. He hadn’t been officially told either, but said, when it attacked the spine and damaged nerves like this, then it would have spread everywhere and they would want him to have some quality of life. Sure enough, lymph nodes started to appear all over his back and tummy.
We will always be grateful to the army of nurses who made it possible to keep Alasdair at home until he was taken to St. Andrews Hospice in Airdrie for pain control. It was only to be for a few days, but it proved impossible to get it controlled. Dr. Sugden said a lot of it was mental agony. I had tried to get Alasdair to talk about how he felt, tried to get him to tell me what he was thinking, tried to drop gentle hints about the way things were going, but he wouldn’t “bite”. I encouraged him to talk to the wonderful hospice staff, but he wouldn’t or couldn’t?
He went in on Wednesday 2nd June and never got out. On the Tuesday (8th) we were sent for because he had deteriorated. They put him on a syringe driver with morphine. He waited till his dad went away to fetch his wee brother before he finally asked “am I going to die?” Thank God! I got a chance to speak to him about it. His main concern was for his gran, and his friends, how were we going to tell them? (They, of course knew, but I didn’t let on). He wanted to die at home. I knew he wouldn’t make it in the ambulance, but the hospice agreed to let him go home with their carer in situ. However, all Alasdair needed to know was that I was willing to take him home to die. He was to go home on Wednesday 9th but slept most of the day peacefully – he had totally relaxed. My husband and I spent his last day, 10th June, just talking to him. He knew we were there. We got the odd smile as we told him about escapades from his childhood. He died peacefully at 11.01 that night.
I will NEVER forget my wonderful son who impressed everyone who knew him with his courage and sense of humour.
Prof. Barrett wrote me a beautiful letter after he died. As she said, the wonderful thing about Alasdair was no matter what you hit him with, he took it “on the chin”.
Our friends have been wonderful, but Bob and I can’t come to terms with the fact that Alasdair was snatched away just as he was beginning to achieve, to live. No-one understands this. They can’t. A friend who lost her husband when he was 52 tries to compare this – Jim had a lot of life left to live. BUT HE HAD A LIFE – ALASDAIR DIDN’T GET A CHANCE. She doesn’t understand she didn’t watch her child suffer agony and be helpless to do anything about it.
We badly need to be in touch with someone who knows the HELL we are going through even 6 1/2 months down the line. I don’t seem to be getting over him at all. I still cry very night. I still want to scream and shout and kick – which so far I have not done. I just want to.
The hospice are wonderful. But this is new territory for them. He was the youngest patient they ever had. Which is why so many of the staff were upset and attended the funeral – something they never do apparently. But at least we know Alasdair died loved and surrounded by love in the hospice. You could almost touch the love.
If you know of anyone who can help us or if we can help anyone by talking to them of our experience, we would love to talk to them. Solidarity in numbers!!
Thank you for giving me the chance to write this all down. I hope you can read it and I haven’t bored you. I am emotional as I write it was you can imagine, hence the poor writing.
Moira
P.S. I am trying to tell myself that I had a bonus having Alasdair for 19 years since really only a big meal at my grans on 23rd September 1979 stopped Monblands Hospital in Airdrie taking me to theatre after I’d had a dreadful haemorrhage at my gran’s house. They left me till morning, when the consultant found that the cervix was closed, therefore I was probably still pregnant.
He always was a figher our Alasdair!! Though not a physical fighter. He was a ‘gentle giant!’ – 6 ft 1.
And one final thing to show Alasdair’s attitude to life.
I had to be present when a chemo nurse was explaining to Alasdair the difference between infertility and impotence (he was still only 15). She said, “Now are you sure you understand what I’m saying?”
He looked at me quickly and said “yes, it means I can have all the fun without paying the price!”
Exit one very embarrassed mother!