One of the coolest things about cloud services like Twitter is that if you follow other people who tweet at cancer conferences such as ASCO, ASH and AACR, you can keep track of other parallel sessions while sitting in a different one. Thus Kerry Wachter tweeted about the pediatric neuroblastoma session she was in earlier this week at ASCO and I couldn’t help but suddenly realize it is 32 years since I had a largish lump the size of a small football removed from my adrenal gland and kidney. 32 years is quite a long time and I haven’t really thought much about it in those intervening years. Gilles Frydman from ACOR challenged/encouraged me to tell my story, so here it is for the first and only time, gulp.
It all started during a field hockey match at school, the month before my 13th birthday. The end of someone’s stick somehow wellied me in the left belly and the person commented that I was rather solid there as it hurt their hand. On the Sunday afterwards, I was sitting in the dining room at home doing my homework after lunch and rubbed the offending spot absent mindedly. It was a bit hard. Harder than the right side in fact. That was odd for a right hander, I thought, so lifted up my tee shirt and poked my belly a bit. One side was larger than the other and much, much harder.
“Mum! Come here a minute, look at this, what do you think? My left side is harder and bigger than the right!”
Thus was set a chain of events in motion that went at Star Trek warp speed. My mother, a former nurse and slightly concerned, thought I had a deep hematoma from the hockey or something so dragged me off to the GP after school. The doctor, normally polite but very dithery, straightened up sharply after examination and declared that he was referring me immediately to a specialist at Queen Elizabeth Hospital in Hackney later that week. My mother went pale and looked a bit shocked. I was none too pleased because Thursday was hockey practice after school and didn’t really want to miss it with a big game coming up against a rival school.
Off to Hackney we went by train and bus. A big adventure from Kent in those days. The specialist turned out to be a surgeon, a tall, spare older chap with greying hair and a dour demeanour. More poking and prodding ensued with much mumbling to the medical students present about this being ‘really quite rare and unusual’. Eh? Finally, he solemnly declared to my nervous parents that I would have to stay in for tests and an operation the following week to remove the ‘lump’. My mother was almost in tears, my father very pale. I don’t remember my reaction, just that he answered all my questions and patted my shoulder a lot.
The next week was a whirlwind of trips here and there around London in a shuttle bus to various institutions for tests; blood tests, urine tests, cat scans, MRI’s, x-rays… the lot. I learnt a lot about medicine, London geography and outposts of the University of London in those few weeks. A 24 hour urine collection was needed to track levels of VMA, or vanilyl mandelic acid, because stress on the adrenal glands leads to an excess of the chemical in the urine. Years later, I remembered this while an undergraduate at college studying sport science and used the idea to devise an experiment to prove that athletes taking steroids would have higher levels of VMA in their urine compared to non-steroid takers because the drugs are excreted via the kidneys and add to the stress on the adrenals. Amazing what you can remember and re-apply.
The highlight was a trip to some imaging place near Pentonville and Kings Cross. On getting out of the van, you were greeted with the cool grey, overcast weather, dust, grime, paper on the streets, boarded up doors and windows and plenty of London grot and grime. The street was desolate and empty, like a scene from a black and white Hitchcock movie.
Ushered inside, there was an hour or two of instant hell… backwards and forwards inside a claustrophobic white machine, holding my breath for what seemed like an eternity, relax, back through the horrible tunnel, repeat many times.
Of course, I realised years later that it was a brand new fangled CAT scan and they were taking sections of the tumour, slice by slice, to help guide the surgeon with excision. Back then, it just seemed like torture. The worse part was having to take off my hearing aid, which rendered the technicians microphone instructions to hold breath or relax totally useless. Eventually, we agreed a sensible strategy; wait until the conveyor belt moved, count to 6, hold breath, wait until you see light the other end, relax. That went on forever and I was quite knackered by the end, mostly from the sheer claustrophobia. To this day I still hate scans and MRI’s for that reason.
While I was changing out of the hospital gown, the technicians printed the pictures; brown and cream affairs in little boxes on sheets like x-rays. They were so engrossed they didn’t see me wander in and watch/peer from behind them then start asking questions. After looking nervously at each other, they asked if I was interested in science and biology. I beamed and said yes. So, probably breaking all the rules in the book, a high stool was found and they treated me to a little science lecture on the scans, explaining the shapes and illustrating my ‘lump’. Even I could see it was rather big compared to everything else. Wow. I was simply awed by the wonders of modern technology – even a lump can look beautiful sometimes.
Back in the children’s ward at the hospital, things were quite a riot. We had great food, including Baked Alaska for pudding, we played boisterous football matches in the ward between the beds with a soft knitted ball, much to Matron’s displeasure and annoyance!
Neuroblastoma cells: Image by euthman via Flickr
The doctors, however, got nagged and nagged because I wanted to see the lump myself, which horrified the nurses. Eventually the surgeon relented and took me down to the biochemistry and pathology labs himself for an afternoon of practical dissections, microscope peering and also to be the live patient for the lecture he was giving to the medical students on pediatric neuroblastoma. That was awesome and I still remember it to this day.
It was there that I realised just how lucky I was. This is a highly malignant tumour that arises out of germ cells at birth and is usually fatal by age 5 due to unrestrained proliferating metastases. Who knows why mine, fortuitiously, was still in one big lump at age 12 or that it grew around the kidney, leaving it in bathed in blood in a hollow centre so that it could be saved by the excellent skill of a very good surgeon? Luck, chance, fate, whatever. I lived to tell the tale and 30 odd years survival is not bad. Hopefully it will let parents realise that good things do indeed happen sometimes.
Meanwhile, we had daily self study in the ward ‘school room’, which meant writing up projects based upon research in the well stocked little library, given as donations from many grateful parents. I discovered some fascinating books on cetaceans with beautiful pictures of whales, dolphins and porpoises for a biology project, an awesome book on the Amazon rain forest for a geography essay and my favourite, an enormous heavy book about New York, with stunning pictures of the city by day and night for an English essay on ‘My Dream is to…’
I kept those visions of New York in my head for years, 20 of them in fact, and eventually made it out to New York to live. Naturally, I picked an apartment on the other side of the Hudson river with stunning views of the Big Apple. After all, who wants to look at New Jersey by night? To this day, I still love taking the Staten Island ferry to see Lady Liberty and looking at Manhattan by night based on stunning pictures from the books in that little library. They became my inspiration.
After a week of tests, the surgeon finally announced it was time for the operation and sat down to talk to me in the ward. He must have been over 6ft and looked quite amusing perched on a children’s chair at the communal table, while I blithely finished colouring a huge picture based on a forest scene that my best friend’s Mum had given me. Even the surgeon joined in and doodled a little green on a leaf. It became a fun ward project.
The operation lasted hours and wasn’t helped by me reacting to the anaesthesia on waking (still a problem even as a adult), but I made it to the ward in one piece and had to spend a week learning to walk again, getting the anaesthetic out and shuffling around like a old lady bent double. A huge white dressing covered my belly. Eventually, I got to see underneath as they removed every other stitch a week later before I went home. There were 26 stitches in all, stretched across in an immaculate thin red line. My mother was horrified… It looked like a shark had taken a hungry bite, I thought it was rather cool.
A week at home ensued, during which I drove my poor mother nuts and escaped to get rid of excess energy on my bike. Another trip back to the QE2, stitches all out and 3 weeks after entering hospital, I was back at school, albeit on strict instructions to ‘take it easy’. A week after that, I was playing in the big hockey game against a rival school in goal because they didn’t want me running around as centre half and getting damaged. Hah, the other side sensed victory and attacked a lot so the strategy defeated its purpose and the defence was very busy. Of course, being an avid footballer, I just dived into the thick of it and got stuck in, much to the PE teacher’s horror. Still, we won, that’s all that mattered!
Nothing much happened in the intervening years… monthly visits stretched out to 3, then 6 and finally annually. At 18, one is supposed to go to the adult clinic but instead they transferred me to the children’s clinic at St Bartholomews Hospital when the surgeon retired and I continued going there for years on an ad hoc basis. It was more fun doing that and seeing the kids go through it, talk to their parents and the nurses as they became staff nurses or the Sister. It was almost like family in the end.
So that’s my story; 1977 is a long time ago, the Queen’s silver jubilee year, I think it was as one of my friends saved me a mug that were given out at school to celebrate the event. I aced my exams that Christmas, despite being away for 3 weeks. How come? The self study sessions at the hospital taught me to think independently, to ask questions and pay attention to detail; somehow, it frees your mind more than just sitting in class learning by rote and you never go back. We had to write an English essay based on what we wanted to be when we grew up. I knew I want to be a scientist, a biochemist in fact; the idea that different diseases might lead to changes in biochemistry that could be detected fascinated me. Now I come to reflect on it, it still does.