"Many Reasons to Feel Lucky": Karen

"Many Reasons to Feel Lucky": Karen's story

Mon 21 March

For Brain Tumour Awareness Month, Karen has shared her story of being diagnosed with a brain tumour in 2021.
My tumour was found after being referred for an MRI in November 2020 after my family were concerned about the effect migraines were having on my life after over twenty years (the doctor who referred me said the MRI wouldn’t show anything!)
The migraines were not connected but it was instead an incredibly lucky time to have the MRI, or my tumour would likely not have been found.

I had and still have no symptoms from the tumour whatsoever. I had no seizures, no problems with my sight, walking or mobility at all. No one could quite believe I was walking around with this very large tumour in my head.
I was called in to the hospital that night and told that they may operate the next day. My older daughter, who was away at University at the time, reminds me that I only mentioned what happened at the MRI appointment at the end of our conversation that day!

They didn’t operate then but I went for my first appointment with my amazing surgeon Ryan Mathew in early January 2021. He said that it needed operating on and quickly as it was too big to leave and was running down my brain stem around my optic nerve.
It probably did sink in then, as I hadn’t been expecting that when I had walked into the appointment. I was asked if I wanted time to think about it; I said no, we just have to get on with it.
I went into hospital on 8th February for the embolisation. I said goodbye to my husband Paul and two daughters Amy and Holly at the entrance to LGI, and I don’t remember anything else until sometime after 24th February when I started to wake up from a coma.

The surgery had been around 15 hours and had gone as well as could be hoped given how ‘bloody’ the tumour was, with just over 50% of the tumour being removed. Unfortunately, I had an immediate pulmonary embolism as I was being turned over from the surgery, leading to a massive heart attack, where my heart stopped for 15 minutes and which resulted in me being a coma.
This had not happened to Ryan in all of his 20 years in neurology and all the team saved my life in different ways that day. I cannot imagine what it must have been like for Ryan having to make the call to Paul in the early hours.
My truly amazing Paul then had to try and tell my daughters what had happened, followed immediately by my mum and dad, brother and mother-in-law.

The next few weeks were the nightmare you would expect and my incredible best friend Rachel came to stay to support the family, travelling backwards and forwards from her young family. Paul managed to keep a group of 60 or so people informed on a daily basis, as things were very precarious for me.
I then started to turn a corner.
My memories from around the time I woke up are very hazy and I can’t pinpoint when I became aware of anything, but I definitely didn’t realise how poorly I was. I was on a ventilator, had a tracheotomy so couldn’t speak, eat or drink. It was during Covid times so no visitors were allowed. A few video calls were kindly arranged between Paul and the Ward Team so I could see my family and they could see me.
Gradually things improved, with Dr Paul Murphy and his team looking after me. I can remember his lovely calming voice to this day.
I had the most awful chest infections which frustrated me, and I missed Paul and the girls and Rosie our golden retriever so much. I had two amazing visits outside the hospital with my family and friend Rachel, which were just amazing. I am so grateful to Dawn, the Ward Manager, for making these visits happen with ventilators and oxygen, and to all the staff who made sure I stayed OK.

My mum, who was a physio, started getting me to do simple exercises as I couldn’t move at all. I knew that this was going to be so important for me to get better.
My physio and Occupational Therapy support on the ward were delayed as I was not well enough to do anything because of my chest infections. One day Ryan came by and told me that I really needed to get up and into my chair otherwise my recovery would slow down. I wasn’t happy with him as I thought he just wasn’t understanding me, but it also made me think ‘right then, I’ll show you’, which I guess he’d hoped would be my reaction. I was so determined to get out of bed, however much pain I was in, as I knew I needed to get some mobility back. So, when I next saw the physios and OTs, I got on with it!
I asked for them to come back every day. They told me they loved coming to see me as I wanted to get back onto my feet (although I wasn’t sure this was possible) and go home as soon as I could. I went from strength to strength, exceeding all of their goals in every session. They also acted as my counsellors, helping me whatever my mood; I had some really down days around this time.

I was in hospital for just under three months and gave my family a shock one day, as we were waiting for a rehab place to become available, when I said I’d asked if I could come home instead of going to rehab and the hospital had agreed.
Paul, Holly and our friend Rev redecorated and configured our downstairs office into a bedroom as I could not do the stairs (14-hour days for them for 4 days solid) and my brother took Rosie out for walks whilst they carried on working!
I can’t describe the feeling when coming in through the front door to my wonderful family. It was all very emotional.
Two days later I started walking without my walker, then outside the front door and haven’t looked back since.
This was of course only the start of the recovery journey. Fatigue has been a massive factor. I’m now registered as partially sighted as I’ve lost my peripheral vision in both eyes to the left. I have lots of ailments that I didn’t have to start with, and lots of mobility issues, so have done a lot of physiotherapy, counselling through YBTC and sessions with a neuropsychologist which I found really helpful to come to terms with things, mainly not being able to drive anymore.
You might wonder why I’ve titled my story “Many Reasons to Feel Lucky”. Sometimes it doesn’t really feel as though it happened to me, but I have the constant reminders of it in the permanent changes that I now live with, the ‘coma nightmares’ that come back most days but don’t scare me now, and my memories of hospital.

I just think about how lucky I am to be here and fighting for my new normal.

I feel lucky for too many reasons to list, but here goes:
  • My family insisted that I ask for a referral somewhere for my migraines as I had been living with them for such a long time
  • I live in Leeds and, from the moment of diagnosis, I have had such amazing care and been looked after by some amazing people in the NHS, especially given their own resource limitations during Covid
  • The most talented and dedicated surgeon, Ryan, and all the support teams who genuinely saved and re-started my life in those critical minutes and hours
  • Paul Murphy and his amazing team in ITU who looked after me during the few weeks immediately after surgery and kept me going and went above and beyond
  • Dawn, the ITU ward manager, and her team, who arranged the precious family visits outside the hospital
  • The ward sisters and nurses across all wards I stayed in, who were being pulled from pillar to post during the peak of Covid
  • Paul, who is in this 100% with me, who is always here for me and all the family
  • Our amazing girls Amy and Holly who continued their uni and college work throughout and who have been such fantastic support, Holly becoming my main carer at home
  • My mum and dad who, despite what they were going through themselves, have been so amazing in their support. I spoke to them every day in hospital once I could and this gave me a lot of strength to remain as positive as possible
  • Rachel and Kev who were and are so amazing – true friends
  • All our close friends who have supported us through this journey, I have realised just how many wonderful friends we know!
  • The plastics team, physio, the Leeds sight loss team, the clinical psychologist, and my OT Nikki who provides so much support in so many ways
  • My workplace team, who have been so supportive and not put any pressure on me. I know I'm really lucky to have this as have read and talked to people who have had such a different experience to me at work
  • I love that I am able to spend precious time with my wonderful friends and family. They never get tired of acting as a taxi service, and some of them have been so kind in giving Paul a break as he continues to run his business and support all of us.
  • Yorkshire’s Brain Tumour Charity, who have given us such a lot of support through counselling, the drop-in sessions, the wellbeing walks, the Christmas dinner and the ability to talk to others in a similar position.

I went for my second follow up MRI in November which showed that my tumour had grown a little bit, so I am now going to start 6 weeks of radiotherapy. I'm looking forward to getting on with that and then moving forwards with the rest of our lives. I will be forever grateful for this second opportunity at life.

Telling your story is a brilliant way to raise more awareness of what life is like as a person impacted by a brain tumour. It helps others to know the signs to look out for, and you might find it therapeutic to write your experiences down or talk them through. Would you like to share your story with YBTC? Please get in touch with alice@yorksbtc.org.uk
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