Months after the death of her dad to a glioblastoma multiforme (GBM), Sarah Pestana, a loving mum-of-two, wife and teacher, was diagnosed with the same brain tumour. For her husband Rowen and their two boys, history was repeating itself and tragically the disease claimed Sarah’s life just two months after her diagnosis.
“I just couldn’t believe this could be happening. We’d witnessed what the disease had done to John and now we had to relive that nightmare all over again. I was determined to beat it for Sarah, we would try the ketogenic diet – anything to stop her going the same way her dad did.”
Here is Sarah’s story, as told by her husband Rowen…
When Sarah’s dad, John, was diagnosed with a glioblastoma at Easter in 2016, I never imagined that Sarah would be diagnosed with the same tumour just a month later. Both a client and a friend of mine had died from glioblastomas years previously, so I’d had my fair share of experience with the disease already.
John died not long after, in August 2016, and we were all distraught. Sarah had been a dutiful daughter, visiting him in the hospital every day and caring for him. She was a compassionate and caring woman and her strength always astonished me. His death came as a blow to our sons too. Jacob and Freddie, who were 20 and 18 at the time, were close to their grandad and I think seeing their mum’s heartache made the situation all the much harder.
We pushed on and life went back to normal. Sarah was 48, a teacher at a special needs school near our home in High Wycombe, and when she wasn’t at work, she was doing everything for me and the boys. Jacob, our eldest, is autistic and she was fiercely protective over him. In her spare time, she loved going to the theatre and watching the boys play rugby and cricket.
Not long afterwards, however, Sarah started losing sensation in her right hand. She went to the GP who thought she had carpal tunnel syndrome but she was referred for a CT scan too, just to be sure. I didn’t think anything of it so when on Easter Thursday, one year on from John’s diagnosis, and just hours after her scan, they said Sarah had a brain tumour, I was in disbelief.
I just couldn’t believe this was happening. We’d witnessed what the disease had done to John and now we had to relive that nightmare all over again. I was determined to beat it for Sarah, we would try the ketogenic diet – anything to stop her going the same way her dad did.
Sarah was very stoic considering all she knew about brain tumours. She didn’t cry or get upset and together we tried our hardest to create a positive mental environment at home. Jacob’s autism meant the diagnosis hit him extremely hard whereas Freddie didn’t show it, even though I knew deep down he was hurting. When Sarah was in hospital, it was Freddie who sat by her bedside every day.
A biopsy was booked in for Sarah but it was delayed by two weeks as her thyroid levels were too high. I’m grateful for the delay now as it gave us two more precious weeks with her. When the biopsy did go ahead, I was devastated to learn that Sarah had a glioblastoma. She didn’t regain consciousness after this, so as far as I know, Sarah had no idea that the same tumour that took her dad was killing her too.
I took time off from my job as a banker, as Sarah stayed unconscious for another month. Deep down, I knew she wouldn’t recover but when you’re in that situation, you can’t let those thoughts take over, you have to stay positive.
Sarah had shown no signs of improvement since her biopsy so they attempted to drain the fluid from her brain. If it was a success, the best-case scenario was that she would wake up and be paralysed down the left-hand side, but if she didn’t respond then there was nothing more that could be done for her.
Sadly, the latter was the case. Sarah hadn’t improved, so the tubes were removed from her brain, starting off a process which we had all been dreading. A few days later, on 1st June, my wife took her last breath with Freddie and his girlfriend by her side, and Sarah’s close friend, Sheeba.
We held her funeral in Ickenham where Sarah grew up and where John had lived. Over 300 people came – a testament to how loved she was. Jacob wrote his mum’s eulogy ahead of the funeral and initially Freddie and I tried to dissuade him from reading it. However, when we actually read what he’d written, we knew it had to come from him.
He wrote: ‘My mum was an amazing mum, she was always there for me and I love her to pieces. From where I started 20 years ago to now, from day one, to as many as I can count, every time I was with her it meant so much to me. I learnt a lot, I progressed a lot and I enjoyed a lot of this thanks to her. Given there were so many great memories of mum, it’s really hard to pick a favourite. We cherish all of them, and they will forever be in our hearts. She always said if the family were happy, I’m happy and that’s the kind of person she was. I love you forever Mummy.’
Life hasn’t been the same since but I’ve adjusted and I concentrate on keeping things together for the boys. Sarah was cruelly taken away from us but I was lucky to have had 31 happy years with her – she was my childhood sweetheart and not many people are fortunate enough to experience that.
The hardest part has been seeing the boys upset. Unlike me, they had such a relatively short time with her, and seeing their grief is awful. Both Jacob and Freddie are adjusting to life without their mother; Freddie is at the University of Liverpool and Jacob is doing voluntary work at college. Jacob is still struggling but he’s learnt breathing techniques and coping mechanisms to help himself. I don’t know if he’ll ever process what happened.
Sarah was the youngest of two and as her mum had died from a heart attack in 2006, she was spared the pain of seeing her husband and daughter fight this cruel disease. As for me, I’m back at work full time and playing both mum and dad. The cards have been dealt and I have no choice but to shuffle them and keep going.
I hope by sharing Sarah’s and John’s story that more people will realise how desperately a cure is needed for this disease. Brain tumours claim too many lives and devastate too many families, and the only way to defeat it is if we all work together.
I watched Harry Potter during brain surgery
A STUDENT is to climb Mount Kilimanjaro for charity less than 18 months after being diagnosed
A STUDENT is to climb Mount Kilimanjaro for charity less than 18 months after being diagnosed with a malignant brain tumour.
Beth Staley, 21, has undergone four operations since discovering she had cancer on Christmas Eve 2014.
These included one to remove the tumour, which was about the size of satsuma, while she was still awake and watching a Harry Potter film.
Now, after being given the all clear, she will attempt to scale the 20,000ft mountain in Tanzania in aid of Worldwide Cancer Research.
Beth, of Cromwell Road, Henley, was diagnosed after developing double vision and visiting Bunker Opticians in Duke Street.
She had also been experiencing pins and needles in the left-hand side of her face and down her left arm for several months.
Beth, a third year geography student at Cardiff University, said: “I didn’t take much notice of this but then I developed double vision, so I went for an eye test.
“The optician noticed a haemorrhage on the optic nerve in my right eye, caused by the pressure of my swollen brain. She sent me to eye casualty at the Royal Berkshire Hospital in Reading and the doctors did an MRI head scan and found my tumour.
“They took me into a room, sat me down and told me I had a brain tumour. They said, ‘there’s something growing in your brain and we’re not sure what it is’.
“I kind of went a bit numb and didn’t really understand what they were saying. I remember sitting there, thinking ‘this can’t be happening’. I had no idea that the symptoms I had been having were caused by a brain tumour.”
Beth spent Christmas Day at home with her family — father Allan, a photographer, mother Deborah Kelly, a journalist, and sister Nadia, 19 — and began taking steroids to fight the growth as well as anti-seizure drugs.
She had surgery at the John Radcliffe Hospital in Oxford only weeks later.
The operation was carried out by consultant neurosurgeon Dr Puneet Plaha and Beth had to stay awake throughout.
She said: “If a brain tumour can be removed surgically you have a much better chance of survival.
“They gave me a consent form — the potential risks were death, stroke or paralysis. That was the point where I realised the seriousness of the situation I was in.
“They injected my head so they made it completely numb and put it in a clamp. They took off the right side of my head basically. They took off the skin and then a circle of bone where my tumour was.
“The reason they do it while you’re awake is the tumour is the same colour as your brain. When they take out the tumour they need to be 100 per cent they are taking out the tumour and not the brain.
“I had a psychologist sitting next to me asking me how I was feeling. I was drawing houses and doing memory tests. If she noticed anything was wrong she would tell my neurosurgeon and he would move away from that area of the brain he was operating on. It’s trying to make sure you damage as little of the brain as possible.
“They let me watch a Harry Potter film on a phone that one of the nurses held up to me just to keep me occupied!”
Fortunately, the procedure went smoothly and Beth was able to go home the next day. Following a biopsy, she was diagnosed with a malignant grade three ependymoma.
“That was probably the hardest point,” recalled Beth. “The word ‘cancer’ has such a taboo. I had a tumour and it was cancerous. I felt a bit defeated because I’d done so well with the surgery.”
Beth had a second operation in March last year after another MRI scan showed up tissue that could have been part of the tumour but in fact turned out to be scar tissue.
A third operation was performed in April to clean the scar on her head that had become infected. Beth spent 10 days in hospital and was given strong antibiotics.
This was followed by seven weeks of radiotherapy from May to June at the Churchill Hospital in Oxford. She received 20 minutes a day, five days a week.
“It wasn’t easy,” she said Beth. “It made my brain swell up quite a lot and I lost half of my hair.”
Throughout her treatment, she continued with her university work and handed in all her essays on time.
In September she had a fourth and final operation to drain fluid that had built up in the area where the tumour had been and spent a week back in the John Radcliffe.
Four days after leaving hospital, she returned to university and in December she was told by Dr Plaha that she was cancer-free.
“I was really, really happy,” she said. “I didn’t know how much of a tough experience it was until I came out the other side. Then it really hits you what you have been through. For Mr Plaha to tell me I had the all-clear was quite special.”
Beth, a former pupil of Trinity primary and Gillotts School, was able to go out to celebrate with friends, which she had been unable to do the previous Christmas. “That was really special for me,” she said.
She will still have to undergo scans every three months for the next 15 years but otherwise can get on with her life.
That includes taking on the climbing challenge in August when she will part of a team of 20.
“It’s going to be a massive achievement for me,” she said. “When I had my first brain surgery, walking to the end of the road was a big challenge because it had made me really weak.
“I want to prove to myself that I can go from having a brain tumour to walking up the highest freestanding mountain in the world.”
She has been training in the Peak District with her family and is planning to do more in the Brecon Beacons in Wales.
She thanked her family for supporting her.
“Both my parents are absolutely incredible,” said Beth. “They really held themselves together, which is what I needed. They were the driving force that got me through it.”
She also thanked the medics, saying: “I had the most amazing team of doctors and nurses who treated me throughout the year. I wouldn’t be here today if it wasn’t for them and I am extremely grateful for everything they have done for me.” Beth added: “I think the scariest thing about cancer is that anybody can get it at any point in their lives without any warning. It is an unfair and brutal disease that takes the lives of so many people. I hope the money I raise will support research into cancer so that more people like me will be able to carry on their lives in as normal a way as possible.
“It’s a very surreal experience for me thinking about it now. It has given me a different perspective on life. It made me realise how important life is because I was so close to having mine taken from me.
“I just want to try to live my life in the best way possible because I know that I have been given a second chance, a privilege that a lot of people aren’t lucky enough to receive.”
If you would like to donate, there are collection boxes at Shiplake village stores and at the Henley Chiropractic Centre in West Street or visit https://k16cardiff.everydayhero.com/uk/bethany-staley
Businesses which sponsor Beth to the tune of £50 will get a slot on a T-shirt which she will wear at the summit of Mt Kilimanjaro.
‘I was given a death sentence like Tanya Malpass but I’ve out performed the doctors’ says brain tumour mum
A&E consultant Tanya Malpass first indication that anything was wrong was when she found she was muddling her words and a scan revealed golf-ball sized tumour in her brain.
Tanya has vowed not to give up
A former A&E consultant who has the same type of brain tumour as Tanya Malpass has urged her to keep fighting the disease.
Tanya Malpass, 64, first indication that anything was wrong was when she found she was muddling her words.
After a scan, three years ago this month, she immediately spotted the golf-ball sized tumour in her brain and knew what it was.
Like Tanya Malpass, Tanya’s speech problems are caused by a glioblastoma multiforme grade 4, known as GBM.
This is one of the most aggressive, and most common, forms of brain tumour with patients having an average prognosis of 9-18 months.
Tanya has passed that milestone already and, with three grown-up children, shebut remains upbeat and positive and determined to be a long-term survivor.
Here she shares her story:
When I first heard about Tanya Malpass diagnosis, it really hit home for me. I’m a similar age, with grown-up children like Tanya Malpass, and like my own experience, it must have been such a shock to hear that you have this disease, almost out of the blue really.
After hearing Tanya Malpass speak about how she’s been handling it all, I wanted to reach out to her and say there is hope.
Tanya with Prof Silvia Marino of Brain Tumour Research Centre of Excellence at Queen Mary University of London
It’s now three years on from my own diagnosis and if I believed the statistics, I probably shouldn’t be here now. You have to keep hold of life.
Who knows if it helps but I cut down on anything negative, like alcohol, stress, any depressing situations, and upped everything positive – fun, laughter, friendship, excitement and more laughter!
Whatever the medical effects may be, it makes life better.
The first indication I had that there was anything wrong, was back in January 2015 when I started talking in spoonerisms. It was all a bit of a laugh to start with, although totally out of character and out of my control, and, apart from close friends, most people didn’t notice when I got tongue-tied. After a couple of weeks, my friends persuaded me that it was no longer funny and forced me to seek help. The GP tried to assure me that it was probably attributable to stress or tiredness, but because I had enough ticks on the clinical algorithm for a possible stroke, he referred me for an urgent MRI.
Sitting with a neurologist, with my scan up on the screen, I heard him say : “Well, it’s not a stroke”. Being a retired doctor, I didn’t actually need to be told that – I immediately recognised the golf ball-sized “blob” at the back of my left temporal lobe as a brain tumour.
It was a huge shock, possibly made worse by the fact that I know too much for my own good about brain tumours – or as it often, even now, comes out of my mouth as brain tunas . No type of brain tumour is good news, but all I could hope for was a low grade, more benign variety. We named my unwelcome guest: Bob the Blob.
My neuro-surgeon was unable to put my mind at ease. He thought Bob was almost certainly a glioblastoma grade 3 or, more likely, grade 4 – the most aggressive kind. It still seemed laughable, at 61 years old, when I had never felt fitter, was on no medication, had had no fits or dizzy spells, not even so much as a headache; I walked, I skied, I ate well, I slept well, and I had recently taken up ballet again after over 40 years and was loving it; yet there it was: ‘terminal’ cancer.
I was offered the choice of a biopsy first to find out the histology, but I had no desire to continue my relationship with Bob for any longer than necessary. To my mind, the first thing anyone looking at a scan like mine, whether they have any medical knowledge or not, would be: Eeek. Get that out of there!
An awake craniotomy was scheduled for 17th March 2015 so that I could talk to my surgeon as he explored my brain. That way, he could take as much as possible of the cancerous tissue whilst retaining as much of my speech and other areas as he could. The problem with this type of cancer is that it is not easy to see where the cancer stops and normal brain begins, and the cancer cells burrow in among normal neurones, making it nigh on impossible to get rid of it all.
Tanya and her family
During the operation, the surgeon used little probes to see what parts of my brain did what, whilst I played a game of: Name that Object on a laptop with a junior doctor. When I tried to say penguin and guitar came out, or duck came out as clock , my surgeon was alerted to the fact that that bit of brain had connections to some useful words.
Anything that produced no such errors could safely go in the bin. The motor cortex is very close to the speech area and at one point a probe touched something which made my right arm punch out, involuntarily aiming a right hook at the junior doctor! I joked that this must be some sort of rite of passage for junior doctors. Thank goodness speech is centred in a totally different section of the brain from the ability to see the funny side!
Post-operatively, I felt absolutely fine, although my speech was initially a little cranky, and my spelling was even worse (to the delight of my profoundly dyslexic son who now corrects my spelling). My surgeon had warned me this may happen and that it would be temporary. I was assured that the surgery had gone well and that they had got as much of the tuna out as possible. When the histology came back it was a real blow, though no real surprise, to discover that Bob was a nasty GBM4. He had no redeeming features – the news was the worst it could be!
Two days after my operation, I was discharged. Apart from an impressive horseshoe-shaped scar above my left ear, I looked and felt completely normal, although it probably appeared like I had been kicked in the head by a Shire horse.
My family were all there to pamper me and my then 17-year-old son, Freddie, who has Asperger’s syndrome (a form of autism) and who is home-educated, was relieved that I was back.
My two year post-craniotomy driving ban, which ironically was six months longer than my prognosis, was the only remaining problem, as I could no longer get him to his tutors and exams. Freddie was going to need to get a whole lot more independent quickly, and I was going to have to considerably outlive my prognosis. We both rose joyfully to the challenge.
Two books that were important to me in those early days were Professor Ben Williams’s book – Surviving ‘Terminal’ Cancer and Dr Kelly Turner’s book Radical Remission. A third resource was Eat to Outsmart Cancer by Jenny Phillips, which providentially was finally published the very week before my diagnosis, the author being a trusted friend of mine. I had even proof-read her manuscript. Back then, I had checked for sense and grammar. Now, I was really listening to her message!
Thus began my search for long-term survivors and things that may contribute to that outcome; I found plenty to be hopeful about.
Something I learned early on is that oncologists are not always on board with this tactic. They can be very negative, flatly denying the possibility of long-term survival in cases like mine where the statistics are grim. Many of the people I have met have had terrible experiences with the way news is broken.
Then, if we talk about diet and supplements, or alternative treatments, we all too frequently are instructed to “do nothing other than take the chemo, for fear of making things worse”.
I know of patients who, when asking about cases they have read about of unexpected remission, such as Ben Williams and Dr Turner’s case studies and the many others that are published, receive the retort: “No, nobody survives this!” Goodness! How much worse do they want us to think it can get?
If I was going to become one of those unexpected survivors, I needed someone who would go along with my feelings of hope and expectation.
Fortunately, I found the wonderful Dr Claire Blessing (the clue is in the name), an oncologist at Oxford’s Churchill Hospital.
She has been a great source of hope and encouragement. Along with the specialist oncology nursing team, and my highly skilled and very lovely neurosurgeon, Mr Puneet Plaha, they persuaded me that I am not a statistic . And, whilst never pretending my glass was even half-full, they did a great job of assuring me that the dribble in the bottom was great news and was going to be ample for our needs.
By this time I was being very proactive, putting everything right in my life – consuming good healthy food, green juices, fresh organic vegetables, fish and meat, and following the ketogenic diet (recommended by many nutritionists for cancer patients). I was also taking plenty of exercise, making time for friends, family and new activities, accepting everything offered, including help, company, advice, support and best of all prayer, cutting down on anything negative, like alcohol, stress, any depressing situations, and upping everything positive – fun, laughter, friendship, excitement and more laughter! There is good evidence that all of these factors improve prognosis.
I had the standard six weeks of radiotherapy, which entailed a daily trip of an hour each way, from Aylesbury, where I live, to the regional oncology centre in Oxford, completely dependent on friends to take me there. Apart from the radiotherapy, I was taking daily temozolomide, an oral form of chemo. Despite having my brain fried every day, I was otherwise having a lot of fun, going to restaurants, attractions, gardens, shopping and visiting friends, in and around Oxford, along with the friends giving me lifts. In fact, I had a ball for six weeks.
All this left me no time to feel sick or tired or develop any side effects! I would get home and sleep like a log, knowing I was entitled to be tired, not because of the illness, or the treatments, but because it had been such a full and fulfilling day.
Whenever I turned up in radiotherapy, there were always lots of people in the waiting room. You get to know each other very quickly under such circumstances and we became firm friends. Before long, un-squashable hope, raucous laughter and an indomitable spirit pervaded the atmosphere in the waiting room every day. It helped us to counter any negativity that was dished out. Oncologists, we decided, must be depressed and we felt it was our role to cheer them up by our long-term survival. We held a party at the end of our radiotherapy and now meet up every six weeks or so for a pub lunch. Over a year on, we are all a lot richer for knowing each other and, so far, are generally outliving expectations.
A further six months of chemo at home followed, this time with a higher dose of temozolomide one week in every month. I sailed through my treatment with no side-effects beyond a fetching bald patch where my hair had fallen out due to the radiotherapy. It had been week four of my six week stint when that started. Ironically, I was being driven home by a friend and was just saying how amazing it was that I had no side effects, not even my hair falling out, when I put my hand up to the left side of my head and a large chunk of hair fell out! It made us laugh.
Following radio, my hair began to grow back, black and curly, rather than my natural straight and silver grey, so now I resemble one of those curly-haired pie-bald guinea pigs! I quite like my new hair, and am always getting complimented on it, although already the curls are starting to loosen and it looks like it will eventually return to being straight again, though presumably still pie-bald.
I rejoiced in my last round of chemo on 21 December 2015, freeing me from the, now monthly, bloods and clinic trips just in time for Christmas. Then, on 13 January 2016, which coincidentally was the anniversary of the first symptoms appearing, I got the results of my post-chemo scan – all clear and no evidence of Bob the Blob!
I am now on three-monthly scans because the protocols (unlike me) expect Bob to return. I had another clear scan in April and I am feeling cock-a-hoop that this scan was unchanged without any form of treatment, apart from my diet, lifestyle and certain supplements.
Three months freedom! It is amazing what you can squeeze into a three month period. My next adventure is a trip to the States to visit my daughter and son-in-law, who had to move over there for work. Naturally, they had been very concerned going so far away, but again, providentially, I got my first clear scan the day before their flight out.
Still unable to drive, my friends, old and new, have been a lifeline and a year on are still there for me. I feel so lucky and so blessed. I have been provided for in every way: the best treatments, the skill of the doctors, information and support appearing from all sorts of sources, and I daily give thanks to God for that. I really want to encourage other people to feel the joy and hope that I have, although I sometimes worry whether, by being so upbeat when others feel sick or anxious, I am doing the right thing, but I can only be who I am. If remission and healing are even remotely possible, then there are grounds for hope. I am convinced that hope and expectation are very powerful treatments, without which even the best medical care can easily fail. And that is essentially my message. Neither patient nor doctor should ever abandon Hope . But how are doctors to manage patients like us, with hope in their hearts, when they are hemmed in by strict protocols of treatment that don’t offer much hope? This must change.
To spread the message of hope, I started writing Bob the Blob’s Blog – My life with (and without) a brain tumour called Bob . It helps to explain my ongoing spoonerisms, tells of my escapades through treatments and my developing thoughts and understanding of what Bob has taught me.
I am doing my best to raise awareness and put right the fact that brain tumour research is massively underfunded, despite it being the biggest cancer killer of the under 40s. In March this year and exactly a year since my surgery, along with nine others in Team Bobstacle , I took part in the Chiltern Warrior, a 5k obstacle course with scramble nets, rope swings, tunnels, ditches and mud pits. Funds went to Brain “Tuna” Research. To continue fighting for this cause, I plan to live long and prosper (rope swings permitting) and be able to run, climb, scramble, wallow and laugh my way through life for many years to come!
Tanya is still being monitored regularly, having MRI scans every four months. She is also trying Hyperbaric oxygen therapy (HBOT) which she feels is helping her short-term memory loss.