How Sheena Beat Esophageal cancer
The Living Proof story of cancer survivor, Sheena Howarth, a livewire Yorkshire grandmother (who at 62, runs her own language training company and plays competitive tennis) tells how she came through gruelling treatment and got her life back. just as she vowed she would. (By Madeleine Kingsley)
In 2000 Sheena Howarth was diagnosed with cancer of the oesophagus - a condition which less than 25 per cent survive.
Sheena Howarth’s hectic schedule left little time for lunch breaks. On a particular Thursday in October 2000, she was downing a baguette sandwich whilst rushing between appointments. "I thought I’d taken too big a bite" she says "because it really hurt going down. I had to stop and get my bottle of water out. Every Thursday I taught at the same chemical company where they always offered sandwiches to their visitors. I don’t particularly like French bread, so the following week I could easily have chosen something different.
Fortunately, as it turned out, I didn’t - because in this freaky way, my cancer was discovered. After noticing the same problem with French bread three weeks running I thought ’Hmm I really don’t like this.’ It was actually bringing tears to my eyes."
These doctors certainly tell you how it is, don’t they?
Sheena’s GP first thought her symptoms sounded like acid reflux and sent her away with a bottle of Gaviscon. But a month later she went back at his request, this time seeing a "whiz kid young doctor" who decided, (more by hunch than science, as she later admitted) to send Sheena for a barium swallow test. If anything did show up that required follow-up endoscopy, the doctor explained, then Sheena would be booked straight in, rather than having to wait.
Blithely unconcerned, Sheena went for the barium swallow on her own, still kitted out for tennis. Later that week, she phoned the surgery for results and was told they were "irregular". Still her GP maintained that the problem was most likely nothing nasty though an endoscopy would provide the definitive answer. At Pontefract Hospital, says Sheena they tried to persuade me to have the procedure done whilst I was awake, with just numbing throat spray. "But I had sedation. I don’t believe in patient participation for surgery! Afterwards, I was asked to come back in a week and bring someone with me. That was the first time that I didn’t quite like the sound of what was happening," says Sheena.
She describes her first, fateful appointment with consultant, Mr Clark, as "probably the worst moment of all. These doctors certainly tell you how it is, don’t they? He announced, honestly, there was good news and bad news. Once he’d delivered the bad news - that I had a cancer of the oesophagus - I didn’t hear anymore. The good news was that it was very small - less than two cms - very operable, and not of the more aggressive type. Whilst Andrew was asking all the sensible questions about whether I should go privately (I never needed to), I sat shell-shocked. My first reaction was ’They’ve got the wrong notes. Cancer? That’s not me!’ The harsh reality absolutely took the world from under my feet. I couldn’t wait to get out of the hospital and cry."
I was drawn to the idea of complementary treatment
In a way, Sheena reflects, cancer had always been at the back of her mind: "My mum was diagnosed with stomach cancer at 60 - the same age as I was - and died at 64." But Sheena herself had always been incredibly fit and healthy - "I never for one moment thought I’d get ill. I rushed about looking after the grandchildren. I’d never smoked, I’d taken my anti-oxidants and eaten really healthily."
But even in a state of diagnostic shock, Sheena’s instinct was to keep going. "I told Andrew categorically that I wanted to go straight from the consultation, back to work. I had a young man to teach, and I just wanted to do normal things whilst I got my head together. But there were then three or four dreadful days when I couldn’t stop crying. My hairdresser, who works at the Prince of Wales hospice in Pontefract on his day off, suggested I see a wonderful hypnotherapist there. As someone who would always rather take ginger than an anti-sickness pill, I was drawn to the idea of complementary treatment. Andrew dismissed the idea as ’witchcraft’ but I went, anyway, for about four sessions. It was brilliant - the woman I saw worked mainly on visualisations with me. She had me walking deeper and deeper through a wood until I came to a bridge over a little stream. I had to pick up a handful of leaves, which symbolised my major worries, throw them into the water and watch them float away. I found this extremely helpful and often did it at home. With her help I stopped crying, most of the time, though there were still tears whenever I told anybody about my illness."
I wanted the cancer cut out yesterday
Within days of her diagnosis, Sheena was seen at St James’, Leeds, where her specialist, Mr Geoff Clark proffered two options. "He said that they could cut this tumour out for me, or he could put me on a clinical research programme which put surgery back three to four months. I rejected that idea straight away - I wanted the cancer cut out yesterday. So then the specialist wrote something down and passed me the paper on which he’d written ’Excising the tumour, we can offer you five years.’ I just looked at him and said ’I’m not accepting that. What else have you to offer?’ He wrote again and this time I read ’Do the research trial and we can offer you 20 years.’ So the choice was no choice at all. But then Mr Clark warned that the treatment was very aggressive and the reason my operation would have to wait, was that there were loads of tests to undergo, measuring exactly how much toxicity I could tolerate. I had to have bone absorption tests, liver and kidney function tests, tests for blood, weight and urine output. In the trial, chemo and radiotherapy came first, which I think is the way to go. By the time surgery came round, they told me my tumour was shrivelled - like a dried-up pea. So there wasn’t any risk of affected tissue being dropped back into my body during surgery itself."
I intend to be 100 per cent me, doing everything I do now
Sheena admits that the prospect of 12 weeks continuous chemo through a Hickman line terrified her. "Apart from having my three daughters, I’d never been in hospital before. The process was explained to me in the greatest detail and seemed quite dreadful. The last five weeks I would also have daily radiotherapy, then a six-week break followed by the big op." At one point the specialist asked Sheena how she expected to be after all the treatment was behind her "I’ll tell you how I intend to be" was Sheena’s characteristic answer: "I intend to be 100 per cent me, doing everything I do now." He gave me a quizzical look and said "You don’t half have a big ask, do you?" "I’m telling you now what I expect" I said. " I’m giving you my life to sort out and I want it back in fine order." Facing treatment, Sheena says she felt "as if I had a monumental hill to climb. I didn’t know if I would get to the top, but if I did, I thought I’d then be all right. And that’s what happened. I made the summit and my hopes came true."
Otherwise preoccupied, Sheena had no inkling that her worried family was planning a surprise 60th birthday party for her on December 4, 2000, two days before her treatment started. "There was an audible gasp when Andrew told some 70 of our friends that they might not all know that I was about to have treatment for cancer of the oesophagus. I was very moved when he went on to say how well I was coping and how it took a very special person to come home from being told she had cancer and go straight off to work. I hung on to that - and the party after-glow. So I began my treatment on an absolute high."
They all said that I was a very fit person, still quite young and with the right attitude
Sheena’s intensive pre-op therapy took place at Cookridge Hospital, a specialist cancer centre in Leeds under the guidance of Dr Crellin. Continuous chemo was delivered through a machine the size of a small audio-cassette recorder with adjustable controls. "One group of students thought I was taping their lesson! I explained, which I think was useful, given that that there were eight of them, so statistically, one will end up having cancer too. I’m still teaching them, so at least they’ve seen somebody go through the mill and recover which is pretty positive." Aware from the start that hers was a particularly nasty cancer to get, Sheena was reassured by the positive medical prognosis from medical staff. "They all said that I was a very fit person, still quite young and with the right attitude. Here too the hypnotherapist helped by telling me to envisage the chemo as fighting the cancer within me, and marking the start of my return to health. In my mind, chemo became like Fireguard on my computer software - only instead of blocking spam and viruses from my PC, it stopped the cancer spreading."
Although Sheena lost most of her finger and toe nails towards the end of chemo, she kept her hair and felt unexpectedly well throughout. "I had to stay in overnight only once every three weeks for an infusion of an extra drug - 5FU. The Cookridge staff were wonderful, and there was one specified nurse, Paula, I could phone at any time if worried. When I developed very sore lip ulcers they simply lowered the drug input for me. I kept working throughout, drove myself everywhere and went on as normal." It was radiotherapy that made her queasy: "It generally left me feeling that I was walking through custard. Just moving from the sofa to put the kettle on, I had to sit down on every available chair I passed."
Sheena’s three grown daughters, Kirstin 34, and twins Lindsey and Amanda, 32, did all they could to rally round, though none lived close. "Andrew also did more than his best, but he’s never going to be a new man and he’s a dreadful cook." Here the village stepped in. "Everybody was amazing. I couldn’t open the front door without finding a pot of nice yoghurt or strawberries and cream on the step. Sometimes a casserole or a fresh-baked cake."
Losing my spleen has left me with an immune deficiency more inconvenient than any other after-effect
During her six weeks treatment break, Sheena began to feel "fabulous, totally normal. I could swallow anything, even lumps of meat which had begun to get stuck before treatment began. I was sure the tumour had shrunk. I felt so good that I even rang to ask if I really had to go ahead with surgery. "It’s part of the deal" they said. So on April Fool’s Day, 2001, Sheena checked in for the operation she now knows ranks as the biggest in the medical textbook, short of a heart transplant. "They did say that it was a very big op" Sheena acknowledges "but to me that meant it was maybe in the league of a hysterectomy." Which is a massive underestimate, as Sheena now confirms: the process of removing an esophageal cancer is twofold and takes 10 hours: "First they strap your right arm above your head and cut you from the breast bone to the navel. Five inches of the oesophagus is removed. They then take part of the stomach which is apparently shaped like a round ball and staple it into a tube to make a new oesophagus. The stomach is then obviously higher than it was and now shaped like a long balloon. To clamp it into place they then make a 14 inch cut from under your breast right across the back. Mine looks just like the Nike sports logo tick. They take out a rib, deflate your lung and somehow some surgeon gets his hands into the tiny space and joins the intricate handiwork together in the right places."
Sheena is not normally a scared person, but her biggest pre-op fear was that she would not wake up. Discovered in floods of tears the night before surgery, she was consoled by the head sister of intensive care (who also happened to be the wife of her overall chief consultant). ’Sister Gioullou took me in my dressing gown and slippers to see the operating theatre. She introduced me to the anaesthetist and all the people who would have care of me in recovery. Back in bed I thought "Yes, I’m kind of OK about this now, and I slept through the night only to have my pre-med at 7.30 the next morning."
Sheena awoke again in intensive care "with no wound pain whatsoever thanks to an epidural, but 13 tubes in various places and my daughter Lindsey’s little face swimming reassuringly into view. My immediate problem was that the arm they had strapped up really hurt but that soon ebbed. I also discovered they had nicked my spleen whilst operating and been forced to remove it as it wouldn’t stop bleeding and they didn’t want to prolong surgery further. They did apologise, but I do wish this hadn’t happened as losing my spleen has left me with an immune deficiency more inconvenient than any other after-effect.. I have to take penicillin all the time.’
Sheena reckons it took a good year for her to feel human again
Twenty four hours after her op, Sheena was moved out of intensive care ("They said I wasn’t supposed to be talking!") first to a high dependency ward and then into her own little room. "I probably had this privilege because I’d had the most serious surgery with two wounds to recover from and because I still had the most bottles and jars to accommodate." For eight days she was fed directly into her stomach, and then given "a cup of vile chalky liquid" to drink before being x-rayed to ensure there were no leaks in her new pipework. Only then could she have sips of water: "I lost a stone in hospital, and never thought about food. After three weeks they said I could go home, but I honestly didn’t feel ready. I was too scared. So they kept me in another seven days."
Sheena’s best friend stayed for a while when she came home - a much needed helper. "The hospital had warned that I could have explosive diarrhoea after the op, that I’d feel sick and deeply tired, but I had far more problems than I really expected. It was just as well I’d had my cheino and radiotherapy before the op, because I certainly couldn’t have faced them afterwards." There is no way to present the facts delicately: Sheena’s diarrohea lasted for what seemed an eternity. "You’d duly take something for it, and then you’d be bound up for days. Then it would start again and you wouldn’t dare leave the house. It was a total nightmare - you have to laugh now, but it was bloody awful at the time. I just wanted to live in the bath. Now I’m helping to launch a local support group of the Oesophageal Patients Association and, talking to other people who are facing the same op, I tell them just what to expect."
Although Sheena reckons it took a good year for her "to feel human again", she started swimming in June - just two months after surgery. "The hospital said ’brilliant - if you feel you can."’ A year on she swam a mile to raise money for Macmillan Nurses and was thrilled to make about 200.
I was soon competing again, proving the specialist wrong
After her hypnotherapy, Sheena had vowed that if she got better, she would give some time to the Hospice that helped her. So half a day a week now, she works on their reception, greeting visitors and taking messages for staff. "A year on too, I went back to tennis, although my consultant had warned my serving days were over. The club had given me a specially light racket for my 60th and I was soon competing again, proving the specialist wrong." Sheena is not in the least whimsical by nature, but during her recovery period she says that she had a powerful sense of support not only from family and friends, but from people close to her who were no longer living "especially my Dad in the RAF who was killed when I was three months old." Sheena is a committed Christian and it made her smile to sit in church and hear herself prayed for six months after surgery: "I think you can stop now" she told the vicar. "I’m back."
But there is rather less of five foot nine inch Sheena these days: once 11 stone - and 12 just before surgery - she is now a willowy eight-stoner. "I’ve never been a great foodie but since surgery I no longer experience any appetite. I’ve certainly never touched French bread again! I was told that as I’d now have less capacity I must eat six small meals a day rather than three decent ones, so I tried having a bit of cereal for breakfast, then toast for elevenses, a sandwich or bowl of soup for lunch, then yoghurt and something small in the evening. But once I went back to work, this diet was really impractical, so I now try to eat a bit more at each meal (including at least five fruit and veg a day) topping up between with a little cheese or a handful of grapes. I have to be careful because just one forkful too many leaves me feeling really sick and bloated, though luckily this wears off after 20 minutes. Besides my CoQ10 and multivitamins, I take old-fashioned Virol every day and cod liver oil in orange juice with vitamin D, straight from the bottle. At my last, six-monthly, check-up the consultant told me I was one of the only people he’d seen whose blood had returned to tip-top condition within two years of the operation. He also said that after nearly three cancer-free years, I am probably out of danger."
In brilliant health for daughter Amanda’s country wedding
This news is just one of the very good reasons Sheena has had to celebrate following her ordeal. She’s also delighted in the birth of a new grandchild, Amelia, now one, and the splash country wedding of her last unmarried daughter, Amanda, in July last year. "When you’ve had a grave illness and then something good happens, it does feel like one more step along the road to recovery. One of my worries had been that I wouldn’t be around to see Amanda married. So that was a very special day. ’Wow!’ you think. ’I made it. I’m here!"’