In Our Hearts Stories
Less than 20% of those diagnosed with a brain tumour survive beyond five years
Penny and I met in 2004 – she was a lovely-looking lady and an excellent dancer. We had lots of fun going to dance classes together until, following her diagnosis with a brain tumour in 2009, she went on to experience dizziness and had to stop.
Early in 2015 Penny started to have mobility problems, which by October 2016 had become particularly pronounced. The last year was a nightmare as we looked everywhere to find a way to extend Penny’s life. In the end there was no more treatment available and she passed away.
“It is disturbing that there aren’t more potential drugs in clinical trials – brain tumour patients generally don’t have any time to waste, yet palliative care and support is very costly. I am passionate that we need to do significantly more to stop patients getting to this stage because the lives of whole families and their friends are completely devastated while they wait for the inevitable to happen.”
Here is Penny’s story as told by her husband Glenn Karpel…
I first met Penny in November 2004 when I went to my local Salsa club to see what it was all about. Penny was there with one of her daughters. She was a lovely-looking lady and an excellent dancer. We got chatting and really hit it off. There was synergy between us when we danced and I discovered that she was a former dancing instructor herself.
Over the years we went to lots of dance classes together, often four classes a week. It was very enjoyable - sheer heaven. We also enjoyed watching dance competitions on the television like So you think you can dance!, as well as Strictly Come Dancing in the early years when it was more of a dance competition.
We also both loved walking and visiting places, especially going on holiday to Egypt for some winter sun.
In 2009 Penny had a blackout and was diagnosed with a low grade glioma. She was treated with radiotherapy (but we were told that she wouldn’t be able to have any more radiotherapy in the future). Her hair fell out on the left side, which she found quite upsetting.
Thankfully, Penny recovered well and was remarkably free of problems, although very rarely she felt tingling in her fingers.
Around the time that Penny was given her diagnosis of a brain tumour we got engaged, although we agreed that we wouldn’t marry until her two daughters from a previous marriage were married themselves. We each had our own houses, but we would meet up often. We had realised that we couldn’t take anything for granted anymore and that we meant a lot to each other.
We continued to go to dance classes, but Penny started to complain of being dizzy at times. It was sometime in 2011 when the dizziness affected her doing rotations, so we stopped going dancing. It was pretty sad. Penny continued to live a normal life and was still working, but she found that even when turning to look left or right, she could feel dizzy.
In April 2014, Penny was involved in a major collision at a tricky junction, where it seemed that she lost concentration. Her car was written off and Penny had to be cut out of the car. Fortunately, she was ok, apart from breaking her right knee cap, which required surgery.
From then on she didn’t have the confidence to drive and retired from work too. I suspected that the accident might be something to do with the glioma as she was a very experienced driver and always very safe.
Early in 2015, Penny started to find that her right leg was difficult to control – she thought this was because of her car accident – and she started walking with a stick, more for balance than anything.
However, by February of that year she was experiencing problems with mobility in her right hand also. A scan revealed three new growth hotspots. Penny was given daily chemotherapy in the form of lomustine, which seemed to stabilise her condition.
In October 2016, we were on holiday in Egypt – this time in Hurghada because of the recent incident in Sharm El Sheikh where we normally went. We were walking to the beach in the heat and Penny was finding that her legs had slowed down remarkably.
When we got home we discovered that that her mobility had become significantly worse due to increased hotspot growth. We trusted the Royal Marsden Hospital to put us in touch with an approved trial, but the drug proved useless. As it was a phase 1 trial, and Penny was in the first cohort, she was started off on the lowest possible dose. Penny’s symptoms continued to worsen with her fingers becoming very difficult to control. Shockingly, she was given just a few weeks to live. I was horrified.
Around this time, Penny and I started a low-carb, high-fat, zero-sugar diet which did seem to stabilise her.
Having left getting married for all those years, we decided that now was the time. We needed to go ahead while Penny was still able to talk and sign the register – she was already having trouble writing. Our wedding took place on 1st February 2017 at the local registry office in Bracknell, with my brother and Penny’s best friend as witnesses. It was a lovely occasion – very special.
During February 2017, we got Penny into the Churchill Hospital in Oxford where the chemotherapy drug of choice was temozolamide. She had one cycle over six weeks and seemed a lot better and less lethargic. She still needed a little help getting up and down stairs, but she was able to get out a bit, using a stick.
During April and May, Penny’s general condition improved such that she could walk around at home with a little assistance.
Then in June 2017, some weeks after the end of Penny’s chemotherapy treatment, various blotches and bruises appeared on her skin. Penny’s GP was concerned and referred her for blood tests. We were told that her bone marrow had been seriously affected and that her red blood cell count and platelets were low.
Penny had a couple of blood transfusions – she was in a bad state and couldn’t talk. The consultant came to check on her and said that she had some haemorrhaging in the brain which was affecting her speech. Penny was very strong, determined and fit and remarkably she recovered from this setback.
Penny’s medical team looked into the possibility of putting her on a second cycle of temozolamide, but on a reduced dose. However, the decision was made that no further treatment could be offered. Penny was given two months to live and was discharged from hospital.
We looked around for other potential trials, including in the US, but most of these were still very much in the early stages. We also got in touch with neurosurgeons Kevin O’Neill and Babar Vaqas (who was still then at Charing Cross Hospital). Kevin organised a multi-disciplinary team (MDT) meeting as he felt there was a possibility of being able to do something. It was our last great hope.
Penny was by now in a wheelchair, so we had to get hospital transport. Her speech was also a little bit compromised. We met first with oncologist Matt Williams who reviewed her scans. The new tumour hotspots had grown significantly. We had a conversation in the corridor with Matt and Kevin who thought there was a slim chance that iKnife surgery or avastin might be helpful.
Devastatingly, as part of Penny’s review consultation, Matt decided, that on reflection, there was too much risk involved with further surgery and that no further treatment was possible. Until this point I had held out the hope that something could be done.
We discussed as a family whether Penny should have any more interventions, bearing in mind that she was saying that she didn’t want to. Matt explained that the drug avastin, which was very expensive (£4,000 for just a month), might alleviate some of the symptoms, but wouldn’t stop progression. Matt advised that it also seemed to result in haemorrhages for 50 per cent of people in a similar condition, with only 20 per cent experiencing some improvement. We all agreed that it was too late to pursue this avenue.
It was at this stage that we decided that Penny might as well enjoy herself as much as she could and if she wanted to eat cake or Cadbury chocolate bars, steak or biscuits, then she should have exactly what she wished for. We no longer controlled her diet. We knew that the progression would continue, but letting Penny eat what she wanted gave her some enjoyment and temporarily put a smile upon her face.
Penny had lost her father from cancer. He was cared for by the family at home where he stayed right up until his death. Penny had always said she wanted to die at home so I was prepared to do my utmost to fulfil her wish.
By June of 2017, Penny’s speech and mobility had deteriorated so much so that it was causing us all distress. The fact that all my searches for something to give us a glimmer of hope proved fruitless added to my distress.
I was having to help Penny get dressed because her right arm was numb, but she could still get up and down the stairs with my support. During July, Penny lost the ability to stand, so I had to carry her to the toilet and back and we made the lounge into our bedroom. To start with we used the sofa bed and sat in recliner chairs and on the sofas during the day. The GP visited regularly and carers came in the evening to help get Penny to bed and in the mornings to help wash and dress her. We stayed together all the time.
Penny’s ability to swallow was compromised, so I had to help her with her food. Her speech declined and she spent more time dozing. By the end of July, Penny lost the ability to speak completely – it was heart-breaking for us.
1st August 2017 was Penny’s 66th birthday. It was a blessing and an inspiration that she had the inner strength to be able to enjoy it. Later on during the month, however, Penny choked on a small piece of melon and had to be taken to hospital. She recovered from this incident, but I made extra sure that she ate safely.
By the end of August, Penny was sleeping most of each day and making no vocalisations at all. It was very distressing for us all.
On 3rd September, Penny fell asleep whilst I was feeding her dinner. The following day at 6am, her left hand had visible tremors so I held it tightly and Penny pulled it to herself, which relaxed her. I got up at 7.30am ready for the carers, but Penny didn’t wake up. Not ever. The GP arrived to confirm she had fallen into a coma. Her daughters and I sat with her in the lounge every hour of every day, making sure Penny was comfortable and that someone was talking to her and holding her. During the night-time, we set up a rota so that someone was always with her while the others got some sleep. It was our pleasure and honour to do this, but it did have a huge emotional drain.
We didn’t expect her to live long without food or water, but 11 days and nights went by with Penny’s breathing becoming more and more strange. It was scary and hard to keep going. It’s awful for families and friends seeing patients suffer like this – you wouldn’t let your pets continue in this way. The nightmare of it all still affects us all today.
On the 12th day, the three of us became aware that Penny was making a rasping, panting noise. We switched off the movie we were watching and rushed to her. The noise stopped so I rubbed her diaphragm. We watched as Penny’s jaw dropped, there was one more gasp and that was it. It was 9.30 during the evening of Friday 15th September. We were all devastated and hugged each other, but also relieved that Penny wasn’t going to suffer anymore…
Penny had been through so much suffering – as indeed had all her family and friends over a long period of time. It was hugely distressing for me to find that there was so few options in terms of treatment. It was also quite alarming to find that you couldn’t necessarily take it for granted that medical specialists were fully up to speed and knew the best practice. I discovered that many had their own pet views on what were the best actions to take. This came to a head when Penny was put on the gravely inappropriate phase 1 trial which, because it was in such early days, meant that she was given the minimum dose of the drug, even though her prognosis was by then so terribly limited.
Sadly, there seemed to be more investment and research into novel anti-cancer therapies happening in Europe, the United States and in Israel than in the UK.
It is also disturbing that there aren’t more potential drugs in clinical trials – brain tumour patients generally don’t have any time to waste, yet palliative care and support is very costly. I am passionate that we need to do significantly more to stop patients getting to this stage because the lives of whole families and their friends are completely devastated while they wait for the inevitable to happen. Indeed, the cost to society is also significantly more than an upfront investment in stopping the disease at the outset. It makes good sense to convince the UK government to significantly increase its investment funding in brain tumour research – and to cut the NICE lag time to authorise the NHS to make use of new therapies.
Let’s work together to make this happen in 2018.
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 Penny’s story, you may like to donate to this fundraising page in her memory: www.justgiving.com/fundraising/glenn-karpel
Together we will find a cure.The views or opinions expressed within are not necessarily those of Brain Tumour Research. This content has been shared for information purposes only. Brain Tumour Research does not recommend or endorse any particular treatment. If you have or suspect you may have a health problem, you should consult your doctor or other suitably qualified medical professional. Our member charity brainstrust can provide additional information on treatment options.