In Our Hearts
Less than 20% of those diagnosed with a brain tumour survive beyond five years
The diagnosis of a brain tumour is devastating for the patient, their family and friends.
For these people life will never be the same again.
These very brave people will remain in our hearts for ever and it is because of them that we are fighting to find a cure so that no other family should have to suffer in the same way.
We thought of you with love today, but that is nothing new.
We thought about you yesterday, and days before that too.
You are forever in our hearts.
Mike and Jenny Parry
Their daughter Charlotte tells their story …
My dad ran his own wine merchants business in Stoneygate, Leicester and when he visited the doctor to complain about severe headaches he was told he was probably just stressed and run down and should take a holiday. Shortly after he had a minor car crash, clipping some parked vehicles. He couldn't understand how he had done it and just felt he hadn't seen them.
A trip to the optician showed he had lost his peripheral vision on the left hand side and he was advised to return straight away to see the GP. Having private medical insurance, he quickly obtained an appointment for an MRI scan. As we got ready to go for the scan, I can remember trying to help him as he struggled to find where his arms went in the coat. I had a sense of dread that something was really wrong.
After the scan we weren't told anything and were sent home. However, in the next few days dad had excruciating headaches. I phoned his doctor who I think must have already had the results because he said he was sending an ambulance and was on his way over to us.
My strongest memory is at the hospital. The consultant was sitting on dad’s bed and holding up the film from the scan. Even now that image is still with me. I could see an area which seemed like the size of an orange lit up in his brain. I knew then, even without being told, dad would not survive this.
We were told in September 1998 that my dad had a glioblastoma multiforme (GBM) brain tumour, the most common and aggressive type. The only option was to have surgery to remove as much of the tumour as possible but it was inevitable that it would grow back. They just weren't sure how long that would take.
Dad underwent surgery at Queen’s Medical Centre in Nottingham fairly soon after. Going to visit him after the operation I wasn't prepared for how horrific brain surgery can be. I can remember thinking: "What have they done to him?” His head was double its usual size and he was still very drowsy from the anaesthetic and medication. I had to leave the room as I couldn't bear it. A nurse followed me out and rather than comfort me, simply said: "What do you expect?" That was the whole point, I had no idea what to expect!
Dad moved from the hospital in Nottingham back to a hospital in Leicester, nearer home, to convalesce from the operation. It was while we were visiting him there one evening that my mum, sister and I were called to see the specialist. They told us that the tumour had already grown back and unfortunately there was nothing more that could be done. The prognosis was just six months. My dad had already been told. Going back to his room after, I don't think any of us wanted to admit what we had heard. We needed to be strong for him and so the prognosis was never discussed. Dad’s attitude was that he would beat this but, as much as we wanted to believe him, we all knew the reality.
With mum and dad in the midlands, my sister Justina living in Hove and me on the Isle of Wight we would travel up and spend as much time as possible with him. We enjoyed Sunday lunches at the local pub and a few bottles of his favourite wine. It was after returning home from visiting him one weekend that I had a call to say his condition had declined rapidly. I rushed back up to Leicester and was by his bedside when he died at home three days later, on 28th November 1998. Dad was just 56.
After dad died, mum moved to Stamford in Rutland where she had grown up and close to where her three sisters lived. However she longed to be nearer me, my sister and my two children. She made the move south, buying a lovely apartment in Shoreham by Sea. She soon settled and made a new life for herself. Mum had great faith and became a member of her local church as well as regularly attending St Peter’s church in Brighton as the vicar there had connections with her old church in Stamford.
Mum was very fit, health conscious and always doing something active. She joined a gym where she did line dancing, pilates and swimming, making many new friends along the way.
One day in June 2013 she collapsed and was discovered by her neighbour. Although it was someone mum knew well, she didn't recognise him. She couldn't even recall having two daughters. An ambulance was called and she was taken to Worthing Hospital. She lost her memory for four hours. Initially it was thought she might have had a stroke (but all the tests were negative) and was kept in overnight; complaining of a strong metal taste in her mouth and shooting pains down her leg. She was white as a sheet and felt ghastly. My sister asked for an MRI to be done but her request was dismissed.
Mum was discharged the following day which was a Friday. My sister and cousin, who is a paramedic, had to physically carry my mum out of hospital. Again, my sister spoke to the doctor to say that there was a serious problem and it was ludicrous allowing her to go home in such a condition. Over the weekend our mum was very poorly. Justina researched the symptoms and discovered something called Melisa, a condition caused by an allergic reaction to metals such as those used in dental surgery. My mum had recently had dental implants and we wondered if she may have had a reaction. Looking back, before she collapsed I realised she had been getting a few things wrong. For instance when she came to visit me for her birthday on 21st May she had asked me how to get to my house. I can remember at the time asking if she was joking as she had been coming over to the island for over 15 years.
On the Monday, Justina took our mum to her GP and explained everything including the metal taste, pain and cramp in her leg, her collapse and memory loss. He said he was referring her to the stroke clinic. Justina highlighted that the tests from the ambulance and A&E records didn't show any signs of this so we needed to look at another diagnosis. Once again, our request for an MRI scan was ignored.
Justina took mum for the Melisa test in Harley Street, London. It showed she was highly allergic to the metals in her new implants and this could have caused her to collapse. We had an immediate referral to a holistic dentist who slowly started to remove the metal. They did say there could be another underlying problem and advised us to go back to mum's GP with the Melisa test results. We saw a different GP at the practice who took on-board these findings and the recent events and mum was referred to a neurologist.
The neurologist said she didn't think anything was that abnormal but, for peace of mind, she would send mum for an MRI, ECG and Cat scan. The MRI appointment came through for a Saturday morning in early September 2013. Half-way through they stopped to give mum an injection and this concerned Justina. That weekend after speaking to my mum on the phone and her getting words muddled up and forgetting things, that same feeling of dread which I experienced with my dad came over me. Justina and I had been becoming increasingly worried about mum as, despite getting the metal removed, she was getting worse. We decided if we hadn't heard back about the scan by the following week we would chase it up.
There was no need as, by 8.30am on Monday, my sister phoned to say the hospital had called mum and told her to come in the following day with her family. Crying to my sister, I said: “We can't go through that again.” I just knew what it was going to be.
The appointment the next day confirmed my worst nightmare. We could never have imagined though it would be exactly the same as my dad’s. Mum calmly said that her husband had died of a glioblastoma multiforme brain tumour and was this the same? She was told they suspected it was and that we would be referred on. Having been through what we had with my dad 16 years ago we knew straight away what the diagnosis entailed. Mum was adamant she wasn't going to go through surgery and suffer like he had. Her words as we left were: “”We're off to have a party." She wasn't joking but we didn't know whether to laugh or cry and the specialist’s face was a picture!
We did look at treatment options and a visit to Hurstwood Park Neurological Centre in Haywards Heath only served to compound mum’s fears. We met for our appointment in a place where patients were recovering from brain surgery. We thought this was unnecessarily upsetting and were moved into a side office instead. Mum also had the option of radiotherapy but she said she would rather take her daughters away than get sick and lose her hair.
Mum asked the surgeon if he thought she was stupid turning down what was offered. He replied: “No, you’re brave.”
Mum just wanted to spend quality time with her friends and family rather than on trips to the hospital when she knew there was no chance of a cure. For us, it was probably worse going through it a second time as we knew too much.
Although mum was put on steroids and anti-seizure tablets, we felt we were walking round with a time bomb which could go off at any time. We had been told that mum should be in no pain and would gradually become increasingly tired. But, after seeing how things changed for my dad, we just didn’t know what would happen.
My sister took compassionate leave from her job in London and moved in with mum. I would take over from her a couple of days a week as we didn't want mum to be on her own. Having lived alone since my dad died she struggled with losing her independence but we were just too worried about what might happen. We also wanted to spend this precious time together.
We tried to take her out and do something nice everyday but this became increasingly difficult. Ironically, at this stage, it was the steroids which started to impact her quality of life rather the tumour itself. Being fit and active, mum weighed less than eight stone but rapidly put on four stone. She also had nasty wounds on her legs which needed dressing twice a day by district nurses as her skin became so weak. Just before Christmas, my sister phoned in horror to say they were on their way to Brighton Eye hospital as mum had rubbed her eye and it had haemorrhaged.
Mum’s goal after her diagnosis was to spend Christmas together but none of us knew if she would make it. She was adamant not to have an early Christmas.
We did manage to spend it together at my home on the Isle of Wight. Mum was becoming increasingly tired, as we were told she would, and I think she was cross with herself that her body was letting her down. She told us on Boxing Day that she was ready to go to Jesus and be reunited with my dad. We were all crying as it was so real and sad.
From the moment she got back to her house after Christmas she seemed to decline rapidly. Emotionally, getting to her goal was all too much and this affected her speech. She found it really difficult to get her words out and it was as if there was a loose connection.
It was at this stage that we started to struggle to look after her by ourselves. We were too scared to sleep in case she didn't wake and anxious that she might have a fall trying to get into, or out of, bed on her own.
We arranged for her to have a hospital bed at home and the occasional night carer or Macmillan nurse came so we could get some sleep. Mum contracted a bladder infection which left her delirious and in a lot of pain and it was decided she should go to St Barnabas House Hospice in Goring by Sea. It would be good for her to have respite care and to get her medication under control. While mum wanted to get back to her own home, it soon became clear to us that this wasn’t possible. We just couldn’t cope on our own any more.
While she was at the hospice, mum contracted a chest infection and we were told they didn't think she would pull though. She surprised us all when, two days later, she was back to her knitting and drinking a gin and tonic.
While the hospice felt mum’s condition had stabilized and she was ready to leave, we felt differently. When she first got there she had been able to walk. Now she was bedbound and had increased to a size 22.
Despite her weight gain, mum was always so glamorous. She would wear lipstick each day and a lovely matching outfit. She became increasingly fearful about dying and even though she had the hospice team there for her, she didn’t want to be left on her own. She often made distressing late night phones calls asking us to go to her.
Knowing we couldn't take her back home on our own, we found a nursing home in Worthing. The move took a lot out of her and, within a few days, she had contracted another chest infection. After another bedside vigil she pulled through. However the brain tumour symptoms were gradually catching up with her and, three weeks after moving there, she passed away on 26th February 2014, aged 67.
Charlotte Venables July 2015