Wednesday, September 19, 2012

Journey to the other side

The indomitable spirit of Dr Kate Granger
I am surprised how often our conversation is lifted by her laughter. The spontaneous cheerful bursts are unexpected. Dr Kate Granger is terminally ill with a rare and highly aggressive type of sarcoma, yet somehow she is at ease with the prospect of her impending mortality. It is a bleak reality she has had only months to absorb but her adjustment is extraordinarily pragmatic. It’s quite inspiring.

Kate was diagnosed, out of the blue, with Desmoplastic Small Round Cell Tumour (DSRCT) in 2011. She was 29 years old, happily married, with a hectic career she loved as a third year Elderly Medicine Registrar working at Pinderfields General Hospital in Yorkshire.

She describes her cancer journey as horrendous and convoluted. On the advice of an Irishman - one of her bosses, Dr Frank Phelan, a Consultant Physician at Pinderfields - Kate wrote her story down, initially for therapeutic benefit and to fill the countless insomniac nights in hospital. But her personal diary has evolved into a poignant book, The Other Side, which has sold well over 3,000 copies since it’s publication in February 2012 and raised £20,000 for the Yorkshire Cancer Centre.

The Other Side is an emotive, uncompromisingly honest and often harrowing account of a doctor's struggle as a patient coming to terms with a devastating diagnosis, her difficult journey with an incurable disease, and her ultimate decision on New Year’s Day to cease treatment in order to retain some quality of life for the time she has left.

Kate’s book is targeted at health professionals, offering them a rare insight into a patient’s plight through the eyes of a fellow medic.

“I’m a doctor and I love being a doctor but, having experienced the other side of the healthcare system as a patient, I think some of us could learn about how to be good doctors by remembering to be good human beings. I know this experience has made me a better doctor,” says Kate.

“I want doctors to stop and think about what it is really like to be a patient. How our behaviours can have such a massive impact, whether positive or negative, on the people we care for. Little tiny things like when someone holds your hand, or sits beside you, or is really kind to you, or if someone is dismissive of you.

“I hope that, by reading the book, healthcare professionals will have a better understanding and empathy for their patients, and from the reviews I have been receiving I think I may have achieved this,” she says happily, speaking from her home in Wakefield.

At a vineyard the day before Kate was admitted to hospital
Kate was on summer holidays in California with her husband Chris in July 2011 when she started to feel unwell. Within days the niggling right-sided backache turned into a searing pain and she was hospitalised.

An ultrasound identified bilateral hydronephrposis and her creatinine was 485. A subsequent CT revealed several soft tissue masses in her abdomen and pelvis. Kate’s fear was realised: ‘Oh my God, it really is cancer.’

She was in renal failure and in constant pain. Ureteric stents were successfully inserted on both sides by a dashing young surgeon, who Kate sensed was more than a little smug about the whole situation: ‘It feels as though he is giving himself a virtual pat on the back for being such a great surgeon.’ 

She realised of course that this was a temporary solution to her problems and that months of investigation and treatment were to follow.

Back in the UK, she was admitted for a pelvic ultrasound but the following morning she noticed that MRI is written next to her name on the ward white board. She knew that it is a completely appropriate investigation but was fuming that no one had bothered to discuss this with her, not simply out of professional courtesy but because she is absolutely petrified of confined spaces.

She concealed her claustrophobia, not wanting to be a nuisance, but when the MRI technicians finally returned to the scanning room to fetch her, she was a total wreck. The paper sheet was stuck to her with sweat and she dared not open her eyes despite their reassurances that it was over.

At the time, Kate wondered how older people cope with MRI scans, especially if they have some cognitive impairment, and she silently vowed to only ever request really clinically essential scans if she ever returned to work.

The third day of admission brought her an unfortunate example of doctor’s communication skills at their worst under the most painful of circumstances. That morning, a junior doctor who had obviously ‘pulled the short straw’ entered her room and without much preamble blurted out: ‘your MRI shows evidence of spread’.

“I was so devastated,” Kate recalls, speaking so softly her words are almost inaudible. “A gynaecology SHO came to see me and he basically told me out of the blue that I have metastatic disease. There was no groundwork prepared, no exploring baseline knowledge and concerns; there was no warning shot. I wasn’t even given the option of having someone with me. I’m sitting there in a bed, in pain, alone, questioning my own mortality and being told that I have metastatic cancer. I was 29 years old and it hit me like a steam train. Then he left me alone in the room and I never saw him again. That could have been handled so much better.”

Kate also expressed disappointment that her consultant didn’t visit her until the following day. “I still think that the concept of professional courtesy should exist. I’m not saying that as a doctor you should get special treatment, but if you can’t even get special treatment and you’re in the profession, it makes you wonder about the average patient.”

The severe pain Kate experienced in the Sates returned and she feared that her stents were failing. Her creatinine level increased and she was transferred to a specialist cancer centre where she was amazed at the difference in the quality of both medical and nursing care.

Kate, ill in hospital
Kate was scheduled for an urgent nephrostomy. “Being a doctor and having experience of things before they happen to you can be really difficult. I’d seen an elderly man have a nephrostomy when I was a student and it was horrendous; the poor man had been screaming. And there I was on my way to having my nephrostomy done and all I was thinking about was him. This is going to happen to me, I thought. Sometimes ignorance is bliss,” she laughs.

Later that day, a ‘lovely consultant’ dropped by to see her. In the book, she remarked on his ‘very gentle personality’ and that he broke all the infection control rules by sitting on the edge of her bed for a chat.

“I’m not sure anybody has actually ever proven sitting on a patient’s bed is such a horrendous thing to do and I certainly used to do it all the time. Sometimes being closer to your patient to comfort them when they need you is more important than microbiology,” Kate observed.

Within days it became apparent that the nephrostomy had failed and she was scheduled for a return trip to the Interventional Radiology Room – or ‘torture chamber’ as she called it - to have another inserted. Afterwards, Kate wrote about the determined efforts of a nurse, who was distressed seeing Kate in constant pain, to make her comfortable before her shift ended. She inserted a subcutaneous cannula and proceeded to give Kate alfentanil every half hour until she was relaxed and pain free.

“It takes five injections. I cannot believe her effort and dedication, but I am so thankful that for the first time in what seems like forever I can now actually close my eyes and sleep peacefully.”

The respite was short lived, however, as Kate soon has need for the third time in five days to revisit the ‘torture chamber’ for reinsertion of the troublesome nephrostomy and to remove her infected stents. Fortunately, the new nephrostomy was a success and her renal function normalised.

Her doctors had thought Kate was suffering from ovarian cancer but a series of tests confirmed that her cancer fit into the ‘small round blue cell tumours’ – a rare, diverse set of cancers including various sarcomas and lymphomas that usually affect children and teenagers.

Kate jokes that she felt strangely disappointed that despite having a very rare tumour it did not have a cooler name. “Let’s face it not much imagination has gone into ‘small round blue cell tumour’!” she laughs.

She remembers fondly how a Teenage and Young Adult (TYA) consultant, who dropped by to discuss her diagnosis and treatment plan, pulled up a chair, sat at her bedside and explained everything at the right level with amazingly adept communication skills. On the subject of palliative chemotherapy, Kate became emotional and he instinctively reached out to hold her hand.

“This touch is extremely comforting as inside the distress and turmoil of having to decide between spending months of what life I have left undergoing chemotherapy with all its side effects and simply walking away from the hospital to die properly sets in,” she wrote.

Kate was started on ‘baby doses’ of chemotherapy but this changed once a definitive diagnosis was established – Kate had Desmoplastic Small Round Cell Tumour (DSRCT). “This news hit me hard and I was not ready to hear it,” she admits. “All that I had read about DSRCT was that it was an extremely aggressive tumour with poor response to chemotherapy and dismal survival rates.”

The consultant gently questioned if she wanted to go ahead with more chemotherapy given the fact that it was very much a palliative situation now with no hope of cure. She decided to give ‘proper chemotherapy’ a try, more for Chris and her family than for herself.

Each of her five cycles of chemotherapy was accompanied by severe side effects, including neutropaenic sepsis. But just as she was verging on abandoning treatment, test results revealed significant reduction in the size of the pelvic masses and improvement in the bone disease. This gave her the strength to persist.

A friend’s husband - an interventional radiology consultant – suggested getting metal ureteral stents inserted as a means of losing the nephrostomies permanently and Kate took this up with her doctors.
“Lots of people have asked me if I think in some respects it was easier for me being a doctor because I know what I want and I can advocate for myself. Well, this was definitely an example where that was the case.

“After ten weeks with bilateral nephrostomies, the metal ureteral stents changed my life but I had to fight quite hard with my doctors to convince them that this would work for me. They were reserved about the idea and not very receptive initially but I nagged and nagged and eventually I got them in. If I’d been a regular patient I might not even have known about this option and I might not have been able to fight my corner quite as much,” she tells Scope.

Kate’s fifth cycle of chemotherapy ended on Christmas Eve but soon after she developed more complications and once again she found her self in hospital with an excruciating abdominal pain. She had been weighing up the burden of treatment versus the benefits for a number of cycles but that New Year’s day as she lay in her hospital bed, she decided to stop treatment.

Chris and Kate renewing their wedding vows
“I don’t know how long I have left, I don’t want to know, but I’m determined to be positive. I’ve started back at work part time and I have my bucket list. Chris and I renewed our wedding vows in April and we’ve gone to Paris and London and Spain. I’m just doing lots of really nice things and sort of dragging everyone along with me on this positivity trip,” Kate chuckles to herself.

Of late, life for Kate has taken an exciting and unexpected turn. When The Other Side was self-published in February, the initial modest run of 100 copies sold out in three days. Another, larger print was ordered. But then her book was plugged on the enormously popular ‘Medical Registrar’ Facebook page and ever since Kate has been caught up in a blitz of media interviews and invitations to address medical colleagues at workshops and meetings.

She has been inundated with overwhelming support from medics and patients alike, for her remarkable courage as much as her book. Kate decided to write a sequel, The Bright Side, which is her story about living with a terminal diagnosis, the struggle to maintain positivity, and how her experiences as a patient have changed her practice as a doctor. The Bright Side was launched on Sunday 16, September.

With so much to live for, Kate is returning to hospital for more chemotherapy – albeit a lower dose on an outpatient basis.

“Despite me thinking I am all sorted and can get on with living until I die, I don’t think I’m as ready to died as I thought I was,” she confides. “I can only do my best to keep smiling and keep positive. I’m not ready to give up yet.”


The Other Side and The Bright Side can be purchased online at http://theothersidestory.co.uk/ and is also available to download for the Kindle / iPad from amazon.com
Keep up to date with Kate’s news on her Facebook page:
https://www.facebook.com/theothersidestory

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