In Hope Stories
Just 1% of the national research spend has been allocated to this devastating disease
When Karen Bucknall underwent a full hysterectomy in 2015, she thought it would mark the end of her health problems which, up to that point, had included fibroids, cysts and a low-grade tumour on her uterus. However, the worst was yet to come for the former holiday rep and air hostess. The following year she was diagnosed with a low-grade brain tumour and in 2019, Karen was discovered to have stage 3 bowel cancer. Doctors have since found another low-grade tumour in Karen’s brain, which is likely to need removing with surgery. In spite of her poor health, the 51-year-old has managed to fulfil her lifelong dream of moving to the Cotswolds and she has just completed a diploma in travel writing and journalism.
Karen tells her story…
I started my professional life working as a ‘Haven Mate’ in 1989. I went on to become a holiday rep and worked in various overseas locations including the Costa Blanca in Spain, the French Alps, Bulgaria and Romania. Closer to home, I’ve also worked as a visitor assistant for the Shakespeare Birthplace Trust and I’ve been a coach courier and had various jobs in airports, including a stint as cabin crew. I am proud to have spent 35 years working in the travel and tourism industry but sadly, that chapter of my life is well and truly over, since my health problems have forced me to take a different path.
“In 2015, I had to have a full hysterectomy after doctors discovered fibroids, cysts and a low-grade tumour on my uterus. At the time, I thought it was the worst thing that could possibly happen to me.”
I had to have the operation because they were worried it would turn into cancer, so I knew it had to be done but it was traumatic and I was relieved when it was all over. After that, I recovered well and was able to go back to my job working as cabin crew, which I loved. I had a good few years of feeling well. Then, in 2017, I started getting headaches, which led to me being diagnosed with ocular myasthenia, a rare long-term condition that causes weakness in the muscles that control the eyes and eyelids. Not long after that, I was diagnosed with a low-grade brain tumour in the nape of my neck, having been sent for a brain scan. I’ll never forget the look of death on the face of the young female consultant who had the unenviable task of breaking the news to me.
Although my doctor said immediate treatment for the brain tumour wasn’t necessary, my diagnosis meant that I had to leave my cabin crew job and pursue another avenue. In September 2017, I began a BA Honours (Hons) degree in sociology at Coventry University, having gained a place on the course through clearing. Not long after starting my degree, the symptoms of the ocular myasthenia worsened and were affecting my whole body, leaving me with muscle weakness in my face and neck, problems with swallowing, double vision and breathing difficulties. But far from letting it affect my studies, I was determined not to give up and managed to complete my first year, as well as becoming a course representative and even finding the time to do student radio and training to teach English as a foreign language.
It was a great achievement finishing the first year of my degree in spite of my health problems but it wasn’t an easy ride. In 2018, I blacked out one day at uni and doctors couldn’t find a cause. But the worst was yet to come when, in 2019, I was diagnosed with stage 3 bowel cancer.
My cancer diagnosis came in April that year, when I was roughly halfway through my course. It took several months to reach the point of diagnosis; I’d been suffering from bleeding, which I thought was piles, but I was worried because my family has a history of bowel cancer. I also started to develop a crippling pain in my tummy and I had loose bowels. When I was finally diagnosed, my oncologist explained that he thought my body has a tendency to produce tumours.
“I had surgery, radiotherapy and chemotherapy to treat the cancer and now have to use a colostomy bag.”
It was a traumatic experience, especially as I was in and out of hospital during my chemotherapy treatment. The chemo started in January 2020 and from February, I began suffering with debilitating headaches – so bad that I had to lie down in a dark room to manage them. The doctors said they thought they were a side effect of the chemo but I wasn’t convinced, as the pressure in my head was immense and my mobility and balance were also affected. In spite of all of this, I did my dissertation, mostly whilst having chemotherapy on the cancer ward (I also had mobile chemotherapy at home) and in August 2020, I finished my course.
“On 25 September that year, I graduated from Coventry University. The lecturers, the disability and administration teams were all there to help me get over the finishing line. I always tell people that the morphine got me through it!”
Meanwhile, I’d also fulfilled a lifelong dream of moving from the West Midlands to Cheltenham in Gloucestershire, to move in with my sister Alison and start a new life in the Cotswolds. I loved my new home and the beautiful area but, unfortunately, I was still experiencing regular headaches, as well as problems with my colostomy bag. Because I’d moved house, I’d got a new GP and when I spoke to him, he said that I shouldn’t still be having headaches two months after finishing chemo. He said I needed to go straight to Gloucestershire Royal Hospital in Gloucester, where I was sent for an MRI scan.
“The upshot of that scan was more bad news; they said I’d suffered a stroke and they found a second low-grade tumour in my brain.”
The good news was that the original tumour wasn’t causing any concern but the new one was more of a worry. It was spreading into the membranes and blood vessels. I think the consultant genuinely felt sorry for me, as he delivered the results. ‘Poor girl’, he said, ‘you’ve been through so much’. He asked if I’d been having problems with my memory, concentration, mobility and mood swings and whether I was experiencing vertigo. I said: ‘yes; all of the above!’. My main concern was that I would need brain surgery, which I was really keen to avoid. I said to my consultant that whatever happened, I didn’t want to lose my hair. It is long, thick and brown; my pride and joy.
The thought of having any of it shaved off to enable an incision was horrendous. Luckily, an operation wasn’t on the cards and they put me under the care of consultant neurologist Mr Roswell Martin at Cheltenham General Hospital, who decided the plan of action would be to ‘watch and wait’ with three-monthly CT scans and annual MRI scans to monitor the tumours.
“On Friday 19 November, I had a routine appointment with Mr Martin. I wasn’t looking forward to the meeting; I had a feeling of dread which was causing anxiety and making it difficult for me to sleep.”
When I got to my appointment, I explained to Mr Roswell Martin that I was overdue my annual MRI scan. It had been 15 months since my last one. I also told him about my severe headaches, which I was experiencing most days. He listened and was very kind and supportive. I explained that my mobility and balance were getting worse, that I would often feel ‘drunk’ when I walked and that I couldn’t walk in a straight line. Stairs and escalators were becoming unbearable, as I was so frightened of falling down them. He also listened intently and took notes as I told him that my ears kept ringing and my hearing was deteriorating. My family often commented on how loud I would have the TV. I could no longer wear my Alice bands or headphones over my head, as they would cause too much pressure. As well as this, I was getting extremely tired, having to go to bed at 8pm.
Mr Roswell Martin pulled up my most recent brain scan images from July 2020 and explained to me in a very sensitive way that the second tumour, situated on the left side of my brain, was negatively impacting my mobility, hearing and balance. It was going right across the hearing line. The smaller tumour in the nape of my neck, which I named ‘Bertie’ was still not causing any issues but the bigger one, ‘Big Bad Bert’, was the problem.
The plan was to have another MRI scan, as he agreed that I was long overdue one. I was referred to the hearing centre at the hospital for tests and told there is a possibility I will have to wear a hearing aid. I am still waiting for that appointment. I am also being transferred to the neurosurgery department at Southmead Hospital in Bristol, where I will be under the care of Mr Nikunj (Nik) Patel. Surgery to remove the tumour is now very likely and further investigation will have to take place, to determine whether the tumour has spread into other parts of the brain. The idea that it may now be cancerous is really upsetting and frightening.
“If it does turn out to be a high-grade tumour, then I will also need radiotherapy and chemotherapy, which could lead to the hair loss that I fear so much.”
I came home from hospital in total shock. I felt completely dumbfounded and numb. Thankfully, my sister was there to comfort me and I have great support from my parents and friends too. There’s a real sense of ‘here we go again’ but I am also relieved that a plan is being put in place to treat the brain tumour. I’m confident that I can and will be well again. I’ve obviously been a bit down with this latest news but I’ve cheered myself up by putting the Christmas decorations up and have been watching festive films to lift my spirits.
Another thing that has given me a reason to be cheerful is that I recently passed my National Council for the Training of Journalists (NCTJ) Level 3 certificate in Foundation Journalism. I am so very proud of myself and pleased to be a qualified trainee broadcaster and journalist. I have dreamed of this moment for such a long time. The course got me through some very dark days and I am forever indebted to my tutor, senior BBC radio journalist Audrey Tinline, for her continued support and belief in me. I was also awarded a university gold award for my media work and won ‘Student Placement of The Year 2020’ for my work experience with ITV Central News.
I am now enrolled with the British College of Journalism, where I’ve just completed my Level 3 Certificate in Travel Journalism and Travel Writing Course. In January, I will embark on a sports journalism course with Sunset Vine to work in the media production for the Birmingham Commonwealth Games 2022. It’s such a wonderful opportunity and I’m excited to be involved. One day, I will return to NCTJ College to do a diploma in Journalism.
I have to keep busy. I don’t want to mope around feeling sorry for myself. When I’m not doing my remote learning, I attend Going the Extra Mile (GEM) Project sessions at Gloucester Adult Education Centre. It’s a scheme which helps people to overcome challenges to employment and move them closer towards or into work, including self-employment. It’s allowed me to do cookery and arts & crafts sessions, which I really enjoy. I’m currently on benefits and make good use of my disability bus pass, coach and rail card. I like the freedom it gives me; I travel all over the place, exploring the South West and discovering places in Cornwall and Devon I never knew existed. I’ve gone from being an intellectual sociology graduate to someone with additional needs but I try to focus on the positives and feel grateful for what I have. I am very fortunate to have a lot of love and support from family and friends, as well as some wonderful charities including Maggie’s Cancer Centre and of course, the NHS.
“I am frightened and have a sense of fear and the unknown about what lies ahead on my cancer and brain tumour journey but I’m digging deep to find the strength to get through it.”
A few days ago, I had my MRI brain scan, with a canular and contrast dye. It was very distressing and I am anxious waiting for the results, which I should receive within the next few weeks. I am trying not to focus too much on it. I plan to really enjoy Christmas and all the wonderful things I have planned for the festive season with my friends and family. I will continue to count my blessings for as long as I can.
Brain tumours are indiscriminate; they can affect anyone at any age. What’s more, they kill more children and adults under the age of 40 than any other cancer... yet historically just 1% of the national spend on cancer research has been allocated to this devastating disease.
Brain Tumour Research is determined to change this.
If you have been touched by Karen’s story, you may like to make a donation via http://www.braintumourresearch.org/donation or leave a gift in your will via www.braintumourresearch.org/legacy.
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