In Hope Stories
Just 1% of the national research spend has been allocated to this devastating disease
Jim started to experience symptoms after the UK went into lockdown during the coronavirus pandemic. He was staggered to be told that - like his wife 18 years previously, whom he has cared for ever since - he had a brain tumour. Despite the burden placed on the NHS as a result of Covid-19, Jim was diagnosed, underwent surgery and started treatment within weeks. He is sharing his story of optimism to bring hope to others.
Jim tells his story …
My wife Gill was 29 when she was diagnosed with a low-grade brain tumour. She had surgery and follow-up treatment and 18 years on and after three brain tumour operations is doing well. Now, all these years later, I have been told that I have the same disease. What are the chances of that? You just couldn’t make it up, could you?
In 2009 Gill was told her tumour, initially classified as a benign oligoastrocytoma in 2002, would shorten her life as, when it re-grew again it had transformed into a high-grade glioblastoma multiforme (GBM), the most virulent form of brain tumour there is. At that point she was told she had 12 months at worst or four years at best so should go home and get her affairs in order. The good news is that this was over 10 years ago and she is still here and staying healthy.
“It seems unbelievable that I have now been diagnosed with the same type of tumour - a glioblastoma. I take great comfort in the fact that there are options open for me that simply didn’t exist for Gill all that time ago and that technology has moved forward tremendously too especially in the surgical procedures to remove tumours.”
Since Gill’s diagnosis we have raised almost £90,000 for Brain Tumour Research through our fundraising group Circle of Hope as we both strongly believe that the only way that a cure for brain tumours and improved treatment options will come about is through increased investment in research. We had other reasons to support the charity too as, many years ago Gill’s grandad and my best friend died of brain tumours.
Having held my wife’s hand for 18 years to every single appointment and over 90 MRI scans sitting by her side whilst she endured these claustrophobic moments and various other medical events along the way, it’s now her time to be there for me. Her body may be battered and bruised along the way however her mind is still as determined as it was on day one to beat this dreadful illness. I have thus been inspired by her brain tumour journey, the fact that she has battled throughout and that she is still here now gives me great hope that I can too!
Remarkably, although the world was on the verge of declaring a global pandemic when I first experienced symptoms - including a tingling sensation in my arm - which were initially thought to be symptoms of a trapped nerve and felt like I was having mild heart attacks, I was diagnosed and admitted for surgery very quickly. Thanks to private healthcare through my employer Asda, I had consultations including scans and other tests. On Thursday 30th April I had an MRI scan at the Nuffield Hospital in York and once the tumour was discovered I was handed into the amazing care of the NHS at Hull University Hospital and quickly scheduled for surgery which took place on 13 May 2020.
“I was advised that the best chance of removing the greatest amount of the tumour possible would be to undergo an awake craniotomy. This meant the terrifying prospect of being awake when the tumour was being extracted.”
By being conscious the team of surgeons would be able to test my mobility throughout - the tumour was pressing along the crucial motor cortex, meaning that removing too much of the tumour risked leaving me with permanent paralysis, or if too little was removed the tumour would soon grow back and infiltrate new areas of my brain.
The other options were to do nothing and see what happened or to have as much of the tumour removed as would be possible asleep under the general anaesthetic. For me, there was only one choice …to be awake to help guide the surgeon away from the critical parts of my brain. I needed to know more facts about what I would be signing up to. I asked all of those ugly questions, you know, those that you need to but don’t really want to hear the answers to; what would it be like, what were the worst parts of this experience. What would an awake craniotomy feel like? What were my chances?
Despite the difficulty in asking these questions, I believe that it was so important to know what to expect before the operation; I didn’t want any unpleasant surprises on the day. I had a lot to do to prepare myself for the operation, and therefore did a huge amount of research with the rigour that I use in my job. One of the things that they informed me that wasn’t pleasant was the environment and noise in the operating theatre such as the noise from the equipment used to either keep me alive whilst they were operating or the sound of the equipment used to open up my skull.
Understanding these things beforehand helped me get my head around them and build up mitigation strategies, again like at work, to minimise these impacts and, for example, allowed me to take my phone in to theatre so I could listen to music to distract me. This was a big tick in the box for noise mitigation which made me feel I was making a difference to the way I could step up and deal with the ordeal ahead of me. This not only helped me whilst in the operating theatre but right from the moment the team came to my ward to bring me downstairs for my surgery as I just popped in my ear plugs, closed my eyes and focused on nothing but my music – it worked a treat and helped disperse all those pre op nerves!
Coincidentally they confirmed the day before the operation that the environment had recently got that much more scary as I would also see the surgical team wearing full PPE to protect us all from Covid-19. I say coincidence because in the first few weeks of working from home I’d been frantically sourcing PPE equipment to safeguard Asda colleagues and customers in our stores.
As part of my planning and preparation process I made use of my connections at Brain Tumour Research who knew more about the advances that have been made over the last 10 years, advances such as the SonoWand which uses ultrasound to distinguish damaged from healthy tissue and the 5-ALA pink drink helps distinguish healthy from damaged tissue under UV light.
My research confirmed my gut instinct to go ahead with an awake craniotomy as this offered the best possible and, for by being brave for four or five hours of the operation, I would gain in the long-term. Who knows how many months or years it might add to my life expectancy – it was a no brainer (no pun intended).
Because our children were just six and five when Gill first went through treatment we didn’t tell them about what she was going through. That was a big decision but, looking back, I’m glad we did it. We also made the decided we would tell them everything when they were older and that time came last year as Gill had been doing so well. Thank God we did and they coped with the news extremely well and they even admitted that they had begun to piece some of this together themselves.
When we then told a few weeks ago that I also had a brain tumour they coped with this very well because, after all, as far as they were concerned Mum was doing so well so why shouldn’t Dad? This time, we were right up front with James, 17, and Charlotte, 16. I asked them both to be strong for me and their Mum over the next few weeks and I’m pleased to say they all really stepped up to the mark for me even though they must have been struggling at times which really did help me stay on point!
In the run up to my operation I prepared myself as much as I could by researching online and even watching YouTube videos of patients undergoing the same procedure. The analogy that I like to use is that it’s like watching a horror movie: the first time, it seems terrifying because you have no idea what will happen next, but watching it over and over again and again there are no more surprises. This helped me to prepare for the surgery ahead and what to expect on the day.
“I was awake for five hours of the operation and during that time I listened to music to help drown out the noise of the surgical instruments, and even sent selfies of me in theatre having my tumour removed via WhatsApp to my friends and family.”
At first my family and friends just couldn’t believe it but then they were chuffed to think they were involved in some way and were frantically messaging me back things like “OMG are you being operated on now? Wow that’s amazing Jim”. This also helped to take my mind of what was happening. Hopefully my experience and images can demystify the process and what’s involved in the procedure as well as acknowledge the people who do this fantastic work.
In a bizarre way I really enjoyed the surgery; it was like a team meeting at work, where I was one of the key decision makers, evaluating the options put in front of me (by the surgical team in this case) however the final decisions were all down to me. I felt like the three weeks of research I put in beforehand were great preparation, that I was able to take some sort of control back over what was happening to me to help give myself the best possible outcome, whilst still taking guidance from the experts.
Having been through the experience my view is that an awake craniotomy sounds far worse than it actually is. There are no pain receptors in your brain but you don’t feel it and in fact, the truth is I found it less scary than going to the dentist!
One thing I wasn’t expecting and it’s something I’ll never forget is that when it was over the whole surgical team put down their tools and gave me a massive round of applause. It was such an extraordinary moment and right up there with when Gill and I got married and when I held out babies in my arms for the first time.
The operation was successful in removing 100% of the tumour and I really could not have asked for more. I made a rapid recovery and was back home in Cawood, North Yorkshire, (near York) two days after my operation. I have suffered with some fatigue which comes after neurosurgery but, apart from that, I feel as if I have emerged unscathed with no major symptoms, no loss of either my mobility or eyesight, just some minor weakness in my left arm which can hopefully be resolved by physiotherapy.
Despite the excision of the tumour being so successful I will still need both intensive radiotherapy and chemotherapy treatment which is likely to be with the drug Temozolomide, which my wife has been on for 10 years in order to ensure that the tumour will not begin to re-grow from any tentacles or cells that may have been left behind in the margins around the cavity where the tumour was removed.
My parting message is just to say that being brave for just a few hours of your life can have a massive effect on the rest of your life. I was told that because of the location of the tumour the surgical team’s expectation pre-op was they would only be able to extract 85 - 90% of the tumour. I firmly believe that because I took control of my own treatment plan and helped to guide the surgeon and his team away from the critical motor strip by staying awake, they were able to remove so much more.
Enough said… if you are offered this life changing option, it is within your gift to take this, and will most likely benefit you hugely long-term. If you are not offered this surgery - ask why not?
I feel very fortunate that I have been able to get such wonderful care during the coronavirus pandemic and know that if my wife can beat this thing, I am going to do as much as I can to beat it too.
Brain tumours kill more children and adults under the age of 40 than any other cancer, yet just 1% of the national spend on cancer research has been allocated to this devastating disease.
If you have been inspired by Jim’s story, you may like to make a donation via www.justgiving.com/fundraising/Fluffycloudandco or leave a legacy in your will via https://www.braintumourresearch.org/legacy
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.