Diagnosis Murder

So Kylie has breast cancer. Shocking though it is that one so young and so famous can succumb so readily to this terrible disease, she’s not the first person I’ve encountered to develop it so young. I suspect, though, that Kylie will be lucky. She’ll have top medical teams surrounding her, a large amount of money to pay for superlative treatment and keep a roof over her head without needing to work, which in turn will give her time to cope with the gruelling side effects of chemotherapy and recuperate properly. Her tumour, it seems, has also been detected early, which is the key factor in determining cancer survival.

Her prompt diagnosis is the exact antithesis of what my mother endured when she became ill last summer. Even now, almost a year on, my blood seethes when I think how long it took the Princess Alexandra Health Care trust to find out what was wrong with her. The unnecessary delays and chaotic lack of organisation of the various hospitals involved can only have contributed to her poor prognosis of treatment and untimely death.

Mum had been experiencing hypertension for about a year and the doctor had tried prescribing various pills and potions and had stopped Mum’s HRT in a bid to lower her blood pressure. Apart from various nasty side effects from the medication, little change had occurred. Through all this time Mum claimed to be feeling relatively well. But at the beginning of June 2004, Mum caught a nasty fluey cold which she had real trouble shaking off. A particularly stressful and busy term at work and the death of one of my brother’s closest school friends left her feeling both physically and emotionally drained. Her GP took a few blood tests but Mum’s continuing high blood pressure remained the doctor’s top priority. Mum was getting headaches which she attributed to blocked sinuses and migraines and the various blood pressure medications she was on. She also at this time had to have hepatitis and typhoid vaccinations for an upcoming trip to Peru. She cancelled them once because she was feeling so unwell but then reached the cut-off point for them to be effective before her departure date, so went ahead with her rescheduled appointment.

Her vision in her left eye then, towards the end of the month, developed a blind spot. About this time, she had an eye test which showed that her vision had changed substantially in the past few months and she required new glasses. The optician claimed that she could see nothing wrong in the eye but that the new prescription would hopefully help alleviate some of the headaches and visual disturbances. Within a week, Mum’s vision through the new glasses was blurred and the blind spot was growing. She returned to the optician, who did not know how to use her practice’s retinal imaging camera but who examined the eye again and said she could see nothing wrong and that the visual problems could not be coming from the eye itself. By now it was mid-July. I saw Mum for her birthday and a theatre trip to London and she was clearly so distressed that I told her she should go directly to the eye clinic at Harlow hospital so that they could have a look. I hoped she was fussing about nothing, but she clearly was not going to rest until someone took her seriously.

So on the following Monday morning, Mum, uncertain she could do this, telephoned the eye clinic who said that she could turn up as an emergency patient and didn’t need a referral. After a long wait and a few chaotic trips to-ing and fro-ing between the eye emergency department and the main accident and emergency (it seemed you couldn’t go to the eye clinic without registering at A&E first), they put some drops in her eyes to dilate them (which meant that Mum was then unable to drive home for several hours until the dilatory effect of the drops had worn off) and examined the interior of her eye. They quickly determined that there was something pressing on her retina but they couldn’t make out what. They ordered an emergency angiogram, scheduled for two days’ time. It was when I heard this news that it finally hit me that there was something really major wrong, if not potentially life-threatening. My immediate thought was that she had a brain tumour or a leaking blood vessel building up the pressure on the back of the retina. And at this point, the carer-dependent relationship we shared changed forever, as I suddenly had to face my own mother’s mortality.

Mum returned as arranged for the angiogram and was injected with yellow fluoracil dye, only to have an allergic reaction and have to be pumped full of antihistamines. She went yellow from top to toe. After the X-rays were taken, she was given an appointment to get the results when the eye consultant got back from holiday the following week. When she got home, she had received a letter from the doctor’s surgery asking her to telephone to make a non-urgent appointment to see the GP about her blood test results. Mum decided that enough was going on by now to treat non-urgent as urgent and so she saw the GP the next day, who told her that the tests had indicated liver malfunction. The GP prescribed more blood tests and a liver ultrasound. The second set of blood tests revealed such high levels of ferritin (iron) in Mum’s blood that they were off the scale, 50 times the normal amount. The GP had no clue as to what could be causing all these various symptoms, particularly when combined with the eye, so wrote an urgent referral to the local gastro-enterologist, Dr Preston, at Bishop’s Stortford’s tiny, rundown hospital. He was of course on holiday, (never get ill in August) but thankfully his secretary, a friend of Mum’s, was able to arrange an appointment with his registrar, but unfortunately the only day this could be on was the same morning as Mum had to return to Harlow hospital to get the results of her angiogram. With some rescheduling and long waits on the telephone, eventually it was organised for Mum to go early to the Herts & Essex hospital and later to Harlow.

The gastro-enterology registrar suggested a diagnosis of haemochromatosis, a genetic condition which results in high levels of iron in the blood and which if left untreated (by the somewhat medieval-sounding method of blood-letting) leads to liver and or heart failure. He prescribed more tests to check the validity of his hypothesis. Mum then went on to Harlow where she saw the eye consultant, Miss Flay. The angiogram had revealed what seemed to be a blister on the retina of her left eye, of unknown origin. Blisters can be caused by high blood pressure or by periods of stress, but Miss Flay was also concerned that it might be a melanoma and that the liver problems could be a secondary growth from this. She then wanted Mum to see the Harlow hospital gastro-enterologist, who I seem to recall was actually her husband. Mum was then sent for a further liver scan at Harlow before this new appointment. One thing this whole experience taught me is that “emergency” never means “immediately” in the NHS. Though each individual appointment was prioritised as urgent, there was usually a week between each one, which meant that time was ticking ever further by. As it would turn out, we were still a million miles away from the final devastating diagnosis. It’s hard to write this from a vantage point of knowing what that diagnosis would be, and it’s too easy to direct the reader towards specific clues. For us at this stage it was an utterly baffling and frightening mystery.

Throughout all this drawn-out process, Mum’s health was deteriorating and despite it now being the school holidays, she felt permanently weak, exhausted and thirsty. She was getting a lot of back and shoulder pain but when her usual physiotherapist tried to massage her, Mum nearly passed out. The trip to Peru had long since been cancelled. The blind spot eye was also constantly growing. Liver scans require a period of fasting beforehand which is only made more difficult when the ultrasound departments are running hours behind time, as appears to be the norm in Harlow.

When Mum finally got to see the Harlow gastro-enterologist he informed her somewhat bluntly that shadows had shown up on the liver scan. These were potentially very serious areas of concern that required a CT scan and possibly a biopsy. We clutched at the hope that these shadows would turn out to be iron deposits from the high ferritin levels in Mum’s blood. We couldn’t see how Mum could have liver cancer as she didn’t have the right (alcoholic) history, and a melanoma in the eye just didn’t seem possible. Anyway, the CT scan followed the following week, and Mum was then summoned in for a liver biopsy.

By this point, as he had returned from his holiday, Mum had finally been able to get an appointment with Dr Preston in Bishop’s Stortford to get the results of all the tests his registrar had ordered. The genetic test for haemochromatosis proved negative. The ferritin tests were still ridiculously high, so it disproved our hypothesis that they had perhaps simply been thrown out of kilter by the yellow dye Mum had had in her blood after her angiogram at the time. Mum had not developed hepatitis as a result of having her vaccinations whilst in the throes of a virus. The only way forward was the biopsy.

The date of the biopsy appointment came round and Mum went to Harlow. But she was told that they could not go ahead as preliminary blood count tests taken a couple of days before had revealed that Mum did not have enough clotting agent for the test to be conducted safely. (The liver is very prone to bleeding.) They then had to arrange a biopsy as an in-patient in the Princess Alexandra Hospital so that Mum could have a platelets infusion beforehand.

A few days later, a Sunday night, a bed became available and Mum was summoned in to Harlow. She was then left in Harvey Ward for five days before anyone got around to arranging the biopsy. It seemed Dr Preston had ordered the bed without actually telling the ward what it was for. It quickly became apparent why we have such a shortage of hospital beds in this country, since wards are packed full of patients waiting to have tests that no one can manage to organise, for whatever reason, be it a shortage of equipment or just complete lack of communication between medical and administrative staff and their various departments. The lady in the bed opposite to Mum was waiting for a 24-hour heart monitoring test which didn’t happen for seven days, as it took that long for a machine to become available.

No one from the eye unit came to see Mum in this time either, despite a continual worsening of her symptoms. Mum quickly became institutionalised and passive, lacking the energy to kick up a fuss and we were unable to do this on her behalf as no doctor was ever present on the wards during visiting hours. The food was singularly disgusting and we took her in fresh fruit to try and keep up her vitamin intake. Mum was unable to sleep owing to the constant commotion in the ward and one particularly cantankerous lady in the corner bed with a chest-shattering cough, who weighed less than five stone and kept shouting at the nurses and falling out of bed. The doctors then started threatening to send Mum home immediately after the biopsy as they were going to need the bed – which was preposterous, considering that the reason she had been hospitalised was to ensure that she did not bleed to death once the samples had been removed, and that they’d kept Mum in that bed whilst doing absolutely nothing to her.

Eventually, the biopsy was organised for Friday lunchtime. Apart from Mum coming out in hives the moment she was injected with the platelets, which is apparently a common reaction, it proceeded without incident. Thankfully, Mum was not sent home and remained in hospital over the weekend. On the Monday afternoon the following week, the 1st of September, with Mum having felt ill since the middle of June, the doctors came to give her the results. And it was to be the worst possible diagnosis. However, instead of warning the nurses on the ward that they were going to give Mum extremely bad news, they just marched right up to her bed and told her that she had secondary cancer cells in her liver. Mum had no one with her to comfort her as she fell apart.

But it was secondary cells. The horrendous task then remained of trying to find out where the primary tumour was. As the biopsy indicated it was likely to be either a breast or bowel tumour, the eye was then decided to be a further secondary site or a possible result of the liver malfunction. A doctor came and examined Mum’s breasts and could find no discernible lump. Results from her last mammogram 2 years previously were unearthed and checked: they had been clear. A new mammogram was scheduled for the following week, at St Margaret’s Hospital in Epping. Mum had had a hysterectomy a few years previously which had revealed unusual but not cancerous or pre-cancerous cells in the lining of the uterus. The doctors wanted to double-check the lab reports done at the time, but of course these had been mislaid by the Princess Alexandra Hospital in the interim period. It was decided that Mum should have an endoscopy as soon as possible, and so she was kept in hospital. The endoscopy was booked for a couple of days later, but no one told the ward, so she was given breakfast on the morning on which it had been scheduled and so it had to be postponed for another two days. Mum had to have her digestive tract emptied and by the time of the test had a permanent migraine, with her eye flickering (still no sign of an eye doctor) and her head full of blinding lights. The endoscopy, with the added revulsion of having to wait for another doctor to finish using one of the necessary tubes on another patient before it could be carried out in full, was clear.

After her mammogram in Epping, Mum was finally allowed out of hospital (after three and a half weeks) and given an appointment with a general oncologist to discuss options. When Mum arrived at this appointment the following week on September 10th, she found it had been cancelled by Harvey Ward as they had sent Mum home and clearly had never heard of such a phenomenon as “outpatients”. The oncologist, Dr Bridgewater, an extremely kind and understanding doctor, thankfully fitted Mum in. They set a date to start a broad-ranging type of chemotherapy, proposing that the treatment would become more tailored if the primary tumour was traced. The mammogram results still had not wended their way over to Harlow from Epping so she was given another appointment to receive them. The oncologist also ordered an MRI scan of Mum’s eye and brain.

At the follow-up appointment, we found out that the MRI scan revealed that whatever was in Mum’s left eye had not spread outside of it. By the time Mum finally received radiotherapy on the eye five months later, once it had been confirmed as malignant, the cancer was found to have progressed on to the right eye and the brain as well. But - at last - the mammogram had shown up a small shadow: it was the first and only sign of the primary tumour. This then meant that Mum had to be referred to the breast cancer consultant, based in Epping. When she got to see him days later, her notes were still in transit from Harlow so he had no case history apart from the mammogram. He examined Mum and could find no trace of a breast tumour by hand. The shadow was so small that he had trouble believing that the cancer could have spread so far and wide through Mum’s body. He said he would start the process of arranging chemotherapy and would re-examine the results of the liver biopsy as this would indicate which drugs would be the most beneficial. He sent Mum home and encouraged her to try and build up her strength.

There was now the added complication that Dave and I were getting married on September 25th in the Lake District. We had had the worst build-up to our wedding imaginable and it just didn’t seem possible that Mum was going to actually be able to make the day itself. But she was determined to do so, and with some gallant efforts on the part of certain family members, she did. She looked so beautiful and radiant despite everything that had gone before. After the rector had declared Dave and I man and wife, I turned round to Mum, sitting in the front pew. She was beaming at me, a memory that is now one of my most treasured.

After Dave and I got back from honeymoon in the middle of October, Mum still had not started chemotherapy, but she was feeling fitter and stronger than she had for a good while. A preliminary meeting with a chemotherapy nurse had at least been booked at Galen House, Princess Alexandra Hospital’s new cancer centre. I went along with Mum to help her remember everything they told her and to try and keep her spirits up. Yet still Harlow’s staggering incompetence continued. The day before the appointment Galen House tried to cancel it as the head nurse had injured her back. Mum (rightly) got so hysterical (“I’m going to be dead before I get any treatment!”) that they rebooked it for her. The trouble is that the receptionist who made the call had no idea of the background to Mum’s case and the delays it had been plagued with – and she also didn’t explain that delaying this appointment would not have any knock-on effect to the start of Mum’s chemo itself. Anyway, to be fair, the nurse we spoke to at this appointment was calm, thorough and clear. For the first time, we no longer felt alone and at sea in the wasteland of the NHS. Mum’s first chemotherapy treatment was given to her in Epping the following week, nearly the end of October.

I fear it can be no coincidence that the breast cancer screening programme at St Margaret’s Hospital in Epping was recently suspended and 6,000 women’s results queried. With this background, something could well have escaped attention on Mum’s previous routine mammogram. This would have been the error that killed her. Whilst the shambolic process that Mum endured last summer is unforgivable and indicates the problems of the NHS when it has to deal with the unknown and make a diagnosis outside of the routine, the truth is that by the time Mum had started to feel unwell, it was too late to save her. Mum’s type of breast cancer was one of the most treatable – if it had manifested as a lump before it had spread, Mum could have had surgery, chemotherapy for six months and then radiotherapy for six weeks. All of this would have been awful enough but at the end of it she would hopefully have enjoyed a long period of remission, if not a permanent cure.

But now, for us, it is too late. I really do not know what can be done to make the NHS work if faced with a case like Mum’s again. No fault can be found with the individuals who cared for Mum. Dr Singer in particular, the breast cancer consultant, did his utmost to be both available, efficient and compassionate. But a system should not be allowed to nurture a health care trust that does not make its different departments communicate properly with each other, that tries to transfer trolley loads of paper notes between three different hospital sites, that keeps patients in hospital beds for days without treating or testing them, that makes patients chase up all their different appointments themselves, and that allows weeks to elapse before an “urgent” situation is dealt with. If only you could go from appointment to scan to blood test to results to appointment with second specialist within one hospital visit instead of having to spread each over a period of several weeks. If only consultants could be available for more than one afternoon a week for outpatients and one morning a week for in-patients.

In other parts of the UK, things may be better. In any case, I suspect Kylie will not have to cope with any of this crippling bureaucracy. But nonetheless, breast cancer is a foul, despicable disease and its treatment is debilitating and life-ruining for all who suffer from it. There are, thankfully, many happy stories too but so many women are not amongst the lucky ones. If the disease chooses to kill you, it will, and there is, at this current time, nothing we can do to stop it. I’ve seen the end, the hell breast cancer ravages on the human body before its soul is taken from it. It is barbaric. Sometimes no amount of courage or fight can be enough.

REBECCA