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If only brain tumour research could be funded in the same way as leukaemia and other cancers

Louise Edwards – In Our Hearts

Louise EdwardsLouise was diagnosed with an aggressive brain tumour at the end of October 2012 but vowed she would remain positive and fight to survive.  To her friends and even other family members, Louise, who just five years earlier had lost her only sister to breast cancer,  had “a lesion” and was going to get better.  Tragically she passed away in December 2014, aged 50, leaving her husband and children, Lucy 14 and Joe 17, heart-broken.

Here is Louise’s story as told by her husband Anthony…

“I was exhausted both physically and mentally from my constant job of being a care-coordinator.  For months I had liaised with everyone who was helping with Louise’s care, from the nurses to the physios and occupational therapists, while fitting in all Louise’s appointments.  There wasn’t anyone else to do this.”

Louise was a teacher at St Mary’s Primary School in Hornchurch and before she became ill she had already reduced her hours so that she was working a couple of days a week to enjoy a good work/life balance.  She was really healthy and didn’t drink much.

We went on holiday in August 2012 to Portugal and all had a lovely time – Louise seemed absolutely fine and really well.  During the October half-term, however, we noticed that she was starting to slur her words and when she complained of feeling numb down one side, I drove her to A&E at Queen’s Hospital in Romford.  She had not suffered with headaches or had other symptoms.

Louise was admitted to the neuro-oncology centre at the hospital because it was thought she had suffered a stroke, but an MRI scan that night revealed she had a brain tumour.  On top of this devastating news, we were told that the surgeon needed to operate straight away, whether the tumour was benign or not, because it was pressing on her brain.  It was the most terrifying nightmare.  I had to pull myself off the floor and get on with being strong for both of us.

Five years earlier, Louise had lost her only sister, Liz Donovan, aged just 45, from breast cancer – so it felt like we were going through it all again.  It was totally traumatic.  We were in complete shock and disbelief, but felt we just had to pull ourselves together and think about the children.

We went home and waited in complete shock and anxiety for a few days for the impending operation to remove the tumour.  At Queen’s, Louise underwent a wide-awake craniotomy under local anaesthetic because the tumour was on the side of the brain which affects the speech.  We were told that they were able to remove 98% of the tumour.  Louise said she found the experience horrifying, but she spent the time either talking to the nurses or thinking of the children to take her mind off what was happening, and to drive her to get through the operation.   A chemotherapy wafer was also inserted into her brain.

It was traumatising to see Louise after the operation as she was very shaken and in shock.  A couple of days later we returned home and waited for the phone call from the surgeon re the biopsy.  Louise had insisted she was given the news over the phone, rather than going back to the hospital.  We were told that the tumour “was treatable, but not curable.”

Louise left it to me to liaise with the neuro-oncology nurse about her prognosis, who gave us the harsh facts that without treatment she would have about three months and with chemo and radiotherapy nine months to two years, with some patients even living up to five years. We felt that Louise was very lucky to be under the surgeons, oncologists and specialist neuro-oncology nurses at Queens Hospital as they assessed and identified the tumour immediately and were very supportive and always on hand to answer my questions and concerns.

One of the biggest shocks for us though was that the acute sector doesn’t appear to be funded or set up to counsel patients and family at the point of diagnosis of such a shocking and life-limiting disease. Perhaps this is something we all need to campaign for?

I am an occupational therapist working in the NHS, but brain tumours were something completely new to me.  I didn’t know that Louise’s situation was going to be so bleak.  It seemed like we were being served with one bit of bad news after another.

Louise was a very strong character and wanted to fight the brain cancer.  In the back of my mind I was hoping for some kind of miracle.

Louise started combined chemo and radiotherapy treatment – 30 sessions over a three month period.  It began well with Louise declaring that, just like her sister, she was going to fight.  Although she was a quiet person, she was very strong-willed and she not only decided she was going to stay strong and positive, but she was going to survive and beat the cancer.  She stopped talking about what might happen in the future and I learnt to respect that, although she did sort out her will and finances with the children in mind.

She wanted to carry on as normal, but in the beginning I stayed at home for her, until Louise told me she wanted me to go back to work.  I was lucky to have an understanding boss and work for an organisation that had clear supportive polices, so I was able to take Louise to all her treatments, apart from one.  I was astounded, however, to meet other people who worked in the private sector, accompanying partners or family members for oncology treatment, who, to appease their bosses, had to get up at 5am to put in the hours, prior to attending an afternoon appointment at the hospital.

As the chemo really kicked in, Louise would sometimes seem rather vacant and then she fell a couple of times as she began to have generalised seizures.  I remember being in the garden and hearing her fall in the kitchen, banging her head.  I questioned whether it was safe to leave her.  At that time we didn’t have anyone coming into help.  Fortunately I was able to work from home a lot, but I did worry about her when I had to go in.

Louise started to become anxious about the medications she was on – in particular the steroids, which she hated.  She got a bit aggressive and it was difficult to persuade her that she needed to continue on the steroids to control the swelling.

We had booked to go away on holiday in July of 2015, but (unbeknown to me because Louise didn’t want a fuss) she fell in the dining room at home and then a couple of days later when she was at the day centre at our local hospice – Saint Francis, in Havering-atte-Bower, for creative therapy, she couldn’t stand up.  She went in an ambulance to hospital where it was discovered she had a hair-line fracture of her hip.  Because she had to have a hip operation we had to cancel the holiday in an Isle of Wight hotel, which had no lift.

Louise came home and we were provided with a comprehensive care package with attendants coming in twice a day as she needed the use of a walking frame, and couldn’t wash, or dress safely.  St Francis kindly lent us a reclining armchair and a portable ramp at the front of the house. From this point on, we had many dedicated health and social care workers visiting us for treatment and care including occupational therapists, physiotherapists, and district nurses coming in and out.  The children hated having so many people coming into our home, as well as the disability equipment, although we knew it was a massive help.

As the disease slowly progressed, it was so sad to see Louise had become a shadow of her former fit and independent self.  However, Louise still refused to give even friends and family the whole picture and continued just to talk about having “a lesion”.  Even at this stage they thought she was in rehab and was going to get better.

Louise wanted to remain at home and went from being a very independent person to having to rely on loads of strangers, although many become good friends.

She was happy to be able to return to the day hospital, after the hip operation.  She didn’t like me fussing too much so she arranged with the hospice nurses to use volunteer drivers to get her back and forth.  She also returned to her favourite creative therapy sessions at the hospice.

I can remember getting very exasperated, however, at the times when I had to struggle to get a person with a brain tumour and a fractured hip, who could only get around in a wheel chair, to an appointment, for an orthopaedic doctor just to ask how things were – no examination or tests, nothing.  Why couldn’t a phone call have sufficed?

For about 18 months Louise did quite well, but then her mobility deteriorated; the steroids meant she had gained quite a bit of weight and she had become quite agitated.  She had a lot of pain in her stomach and started to struggle, especially at night.

In conjunction with the hospice and Queen’s, we started planning ahead for the future.  They talked to me about dying at home, which was obviously Louise’s wish, and on a couple of occasions I tried to talk to Louise about the realities of this, but she didn’t want to go there.

It was all a nightmare.  I was exhausted both physically and mentally from my constant job of being a care-coordinator, and the hands on care I provided.  For months I had liaised with everyone who was helping with Louise’s care, from the nurses to the physios and occupational therapists, while fitting in all Louise’s appointments.  There wasn’t anyone else to do this; I don’t know how an elderly person would have managed.  I was off sick myself for three months, falling asleep next to Louise on many occasions, so it was very fortunate when the hospice were able to arrange a home team to give me a break.  We were lucky the hospice nurses were very proactive in offering us services and anticipating our needs, as was our dedicated family GP.

In Louise’s final weeks she had some bleeding, probably from the effect of the steroids on her stomach and she was taken in an ambulance to A&E once again.  She was pretty unaware of anything for about four days and then she was discharged home.

By now Louise was bed-bound and unable to speak, so she was also unable to indicate where the pain was.  With a heavy heart I decided that home wasn’t the best place for Louise anymore.  It was at this point that her mother, Maureen Donovan, let me know she wanted Louise to be looked after in the hospice too.  It was such a comfort to know that this lovely lady, who was just about to lose the second of her two daughters to cancer, was on the same page.

St Francis Hospice is such a good place, with brilliant nurses who guided us through the last dark days.  The care was so much more holistic, encompassing not just Louise, but the whole family.  They were able to take away some of our guilt at denying Louise her wish to die at home and they helped her mum who was really struggling.  Our daughter, Lucy, didn’t want to come to the hospice, so they persuaded me that it was important not just to spend time with Louise, but also to go home and spend time with Lucy.  All in all, the palliative care we received both from the hospice and our GP (who had supported Louise through her sister’s death) was fantastic.

Friends visited the hospice and cheered us up.  It all seemed a bit more dignified.  The pain relief was really upped and I could tell Louise was pain-free and content being in St Francis.  I talked constantly to her, although I don’t know whether she was listening or could understand.  I was able to spend quality time with my wife, instead of rushing around organising carers, checking for pressure sores and cooking meals.  When she was still at home, everything seemed very fraught and there were often lots of tears.  In the hospice, everything was much calmer and the decisions about her care were out of my hands.

It was a time for us to take stock and get ready for what was coming.  Surprisingly, we all slept a bit better.

In the end Louise survived two years which surprised the medics who thought she would have just a year.  She passed away quite peacefully on 2nd December 2014.

It was only after Louise died that I realised how little targeted funding there was going into research into brain tumours.  I found the Brain Tumour Research website and read many of the stories, which I often found myself discussing with my bereavement counsellor.  They helped me deal with my guilt about taking Louise to the hospice for her final days.

Since going back to work after losing Louise, and conscious of how little support is available for carers, I have had the opportunity to turn my experience of being a family carer and a health worker into a quality improvement project.  The project aims to improve the assessment and support provided to family carers of patients with mainly physical conditions.  It also provides information and teaching to carers who are expected to carry out a range of skills normally undertaken by trained nurses, such as giving medication, managing falls, pressure care, nutrition etc, as well as assessing and supporting the emotional needs of the carer, and their own physical health.  The project is in its early stages, but is being piloted with carers and staff within my local NHS trust.

Anthony Edwards

May 2016

Brain tumours are the biggest cancer killer of children and adults under the age of 40, yet just 1% of the national spend on cancer research has been allocated to this devastating disease.  At the current rate of spend it could take 100 years to find a cure. 

If you have been inspired by Louise’s story, you may like to donate to this fundraising page in her memory: www.justgiving.com\Anthony-Edwards5

3 Responses to Louise Edwards – In Our Hearts

  1. Debbie jones says:

    It’s hard to read your experiences Anthony as it sounds like we were also going through the same at a similar time. Our son Danny Jones was diagnosed with glioblastoma grade 4 just after he married at the age of 28 4 years ago now. We lost him March last year which feels still like yesterday. My husband and I are both nurses and having had 40 years service each I retired to look after dan, his wife daughter of 8 and new born baby.. We too did not take on board immediately the gravity of this diagnosis and he being young and a fit football coach was pretty determined to fight through it. He battled bravely.
    We too are fundraising for BTR and are on 50000 plus but in addition found many failings in local services but the specialist centres being Walton Neuro and clatterbridge were brilliant. Dan did die at home which he wanted but I would love to target something specific to improve care locally when The time is right for us. Keep strong all of you! X

  2. Anthony Edwards says:

    I was really moved the hear your story Debbie . what an amazing amount you gave raised in memory of Danny. Services do seen very hit and miss across the country. My thoughts are with all your family.
    Anthony Edwards.

  3. Vivienne neale says:

    I found both stories very moving, my daughter is 24 diagnosed with a brain tumour last year.Now in remission and I am beginning to come to terms with the trauma of the last year

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