Largely through her own words and those of her mother, Penny, this week’s Feature tells the story of Emma Golledge, whose most challenging journey began many years after she beat childhood leukaemia with the help of some excellent mainstream care.  While the standard of her later-life care may have been shocking, Emma’s story shows that hope and determination to survive can win out, despite the odds.  Truly, hope springs eternal, even in our darkest hours.

Read Emma's full story.

The unthinkable happens

Every parent’s most primal fears became reality for Penny Golledge on 28th September 1989: “At 4 years old, [our daughter Emma] was diagnosed with acute lymphoblastic leukaemia, but after 2 years of intensive chemo- and radiotherapy, she unfortunately relapsed on the same date: 28th September 1991...Her little brother, then aged 4, donated his marrow and saved his sister’s life.  We were told Emma had to have further chemo- and radiotherapy to her brain at this point, and obviously that destroyed her immune system and damaged God knows what else in the process.”

Strong-arm treatment

Emma’s story shows that the situation faced by Neon Roberts and his mother is by no means unique.  “If we had refused treatment, she would have been made a Ward of Court!   This goes against any mother’s instinct or natural law, but when faced with the option of losing your child to cancer, or of her being taken away from you and given chemo anyway, you don’t really have a choice at all.

“Because of the specialist oncology nursing she received on the paediatric ward...we became used to and then expected that level of understanding and care from everyone.  Also, at that time, I was given a great deal of autonomy over Emma’s medication.  I was shown how to administer the drugs and deal with the intravenous dosing machines, and was generally left to nurse Emma on my own, with a great deal of support if needed – which helped me cope and gave me some form of control.  Emma and I were hardly separated throughout 4 years of treatment in hospital.  I was given complete access to my daughter and cared for her constantly”. If only Neon’s mother was afforded a similar courtesy.

Emma Golledge and friend

A sad legacy

Emma was one of the lucky ones: she survived a bone marrow transplant and beat leukaemia, going on to live a normal life for 20 years.  “She did well at school, became a veterinary nurse, went abroad on conservation projects and did two skydives for charity!” notes Penny proudly.  “She learned to dive and ride, and swam with dolphins and sharks!”  But childhood leukaemia and its treatment by radio- and chemotherapy casts a long shadow.   Fast-forward to 6th December 2011, when Emma herself takes up the tale.  “I had been working nights and was tired, but wasn’t aware of feeling unwell.  I had just been out to clean out my rabbit, and came in to search for a friend for him on the Internet.   I believe I had just been on the telephone when I suddenly blacked out.  My head hit the desk in my room, and I landed face down between my desk and my bed...when a CT [computed tomography] scan showed a 3-inch blood clot in my brain, a craniotomy procedure was performed to remove it.  I had to be treated in intensive care, where I developed complications of pneumonia and a perforated eardrum.”

Tug of war

At this point, Emma’s experience with the UK health system began to descend into grim farce.  The stroke left her unable to move the left side of her body and suffering considerable mental confusion, and her family requested that Emma be sent to a specialist rehabilitation centre for brain-injured patients.  When the hospital refused, a tug-of-war ensued.  “I was told on many occasions that Emma didn’t meet the ‘clinical need’,” says Penny.  “No-one could actually tell me what that need was, but I later found out from the Referral Manager that her condition ‘didn’t tick the right boxes’.”  Although it was a private unit, the local commissioning service often referred patients in great need – such as Emma.

Dickensian horrors

Eventually, Emma was sent to the neurology ward of the hospital that operated on her blood clot.  “[It] was full of acute cases,” continues Penny.  “The night they moved Emma onto that ward, she was placed next to an elderly lady who...was shouting and trying to climb out of bed. [Emma] couldn't understand what was going on, or talk or rationalise. As her Mum, I naturally knew she wanted me to stay with her...I refused to leave that first night, and I was so glad I didn’t.”  Emma’s operation had left her with a ‘floating bone flap’ holding her head together, and the nurses wanted to administer eardrops.  “The nurse leant over, resting her hand on Emma’s bone flap to administer the drops! Thankfully, I was there to see it and stop her pressing down, but of course, after that, I wasn’t going to leave Emma at all.”

Care on the ward didn’t improve after that incident.  “Emma was left catheterised and not bathed for a month, her hair was matted with blood and she became sore,” recalls Penny.  “She presented with Type I diabetes after her stroke...She was given the wrong drugs and the wrong doses”.  The situation eventually became so dire that her parents took Emma home from the ward so that Penny could look after her herself.

Ray of light

And then things began to look up.  “After a week struggling on my own, with no help, someone anonymously donated some money to our preferred specialist rehab hospital, so we could finally get [Emma] in there,” says Penny.  “We never found out who that was, but their act of kindness was completely altruistic and saved Emma and I from going insane.”

So determined was Emma to be well again and out of hospital that she made a remarkable recovery, leaving the specialist unit for home on 6th March.  Now, though, the health service assumed she was a private patient and continued to deny her any financial assistance.

Another setback

But just as the family seemed to have turned the corner, another boulder crashed onto the path, as Penny explains.  “On the 11th May, Emm told me she had a painful lump on her head, where the craniotomy scar was.  She went to see the doctor, who put her on antibiotics.  By the following week, a spot had appeared, and then the top of one of the screws began to protrude!”  Initially diagnosed with a chronic bone infection, Emma insisted on tests to confirm an infection, but the hospital – not the same one that had treated her so badly last time – refused.  “She was abandoned by the mainstream because she chose to question the treatment they were offering.  She wasn't being difficult: she wanted confirmation and proof.  It seems to us that they have a system, and patients are 'commodities' rather than individuals.”

Holistic help

Penny racked her brains for a way to help Emma at a time when her daughter was not only in pain, but frustrated at being abandoned by the medical system and self-conscious about her appearance.  She recalled the help she’d received from the Penny Brohn Centre – formerly the Bristol Cancer Care Centre – during an episode of breast cancer some years before.  “They believe our ability to heal comes from caring about the emotional state we are in, nurturing the soul, being mindful and focusing on positive energy.  Eating well, using natural remedies and allowing emotions to flow reconnects pathways and promotes health.  This process and way of being is known as psychoneuroimmunology, a concept that is gaining more and more ground in ‘alternative’ health circles...After [a] healing session [at the Penny Brohn Centre], Emma chose to take a more natural approach to her care.”

Keeping an eye on the surgeon

Emma continued to insist that she did not have bone infection – “She felt far too well!” as Penny puts it – and the hospital finally blinked.  Although the resulting CT scan showed no evidence of an infection, no date was set for an operation.  Then, in August, the inevitable happened: an infection did set in where the screw protruded from Emma’s skull.  Penny takes up the story again: “[Emma] was taken to the General...her worst nightmare!  This time however, she was able to tell them what she wanted...The doctor agreed not to do anything other than remove the screw, and Emma also made him agree that she could remain awake throughout the whole procedure.  She had a local anaesthetic, and watched that doctor like a hawk as he removed the screw from her head...brave girl.”

Fast forward to today

So after all her trials and tribulations, how is Emma doing now?  Well enough in herself, as Penny explains, although she’s basically on her own: “Emma is cognitively ‘back’: she has devised her own recovery plan without any official help, but no one in the social sector is willing to fund it, so she is funding it herself.  The long-term effects of Emma's cancer treatment have left her with disabilities, yet no-one is prepared to help her.  Because of her age, now nearly 28, she is not eligible for any services.”

At the summit of the Purbeck Odyssey, June 2012

Yet even now, this remarkable young woman refuses to be downhearted or discouraged.  “I walked the Purbeck Odyssey in June 2012 (my parents pushed me in the wheelchair most of the way), but I was able to stand at the summit to prove I had made it to the top.”

“The light you carry is what really matters”

If any individual or representative of an organisation reads this, believes they understand Emma's needs and are prepared to offer her support, please contact us at [email protected] or telephone +44 (0)1306 646 600, and we'll forward your details to Emma and Penny.

As we leave the final words to Emma herself, we circle around to our opening thought: that her story is more about hope and determination, and what can be achieved when someone focuses their intention on recovery, than it is a tale of official arrogance and callousness.

“More importantly, all my family can still laugh, care and love and forgive after everything bad that has happened.  As I am learning, life is a test for the soul and what really matters at the end of everything is the light you carry through: all the good, love, compassion.  Leave hate behind and feel sorry for those without these things in their lives.”