Julie Basleigh – In Hope
Posted on 8th June 2016 by Natalie Dawson in Stories
Julie lives in Redhouse, Swindon, Wiltshire and is 38. Her father, Richard Flippence, was diagnosed with a glioblastoma multiforme brain tumour (GBM4), but it was already too late for him to have treatment and he died four months later, aged 63. Just nine years later, Julie herself was diagnosed with a benign brain tumour. Only too aware of what had happened to her dad, she resolved not to watch and wait for her tumour to become malignant, but to have surgery to remove it as quickly as possible. Tragically, even before she had surgery, Julie discovered that the tumour had upgraded to a GBM4, just like her father.
Here is Julie’s story… “Although I was told I would be fine, I knew that even a low grade tumour meant a lower life expectancy. I already had more knowledge than most people about brain tumours – I had lost my Dad to a GBM4 in 2005 when he was 63 and I was only 28.”
I grew up in Gorse Hill, Swindon, attending Churchfields School and then New College in the town. I gained a Certificate in Business Accounting through home study. My interests include geocaching, walking photography and Photoshop as well as researching family trees.
Back in November 2014, I had no symptoms. My daughter, Ava Rose, was 16 months old.
One day I was in my photographic studio with a client when I had a seizure. I don’t know why it happened then – maybe it was because I was tired, or because of the camera flash? Nevertheless, I had a tonic clonic seizure and became fully unconscious. At first, my speech went and I thought I was having a stroke. The last thing I remembered before I lost consciousness was hearing my client calling for an ambulance.
At hospital they tried to reassure me that the seizure was just a one-off and that I shouldn’t worry about it. I was told that as I was young there was no need for the hospital to do an MRI straight away. I would be referred. However, as I had private healthcare through work, I decided I wanted to see a neurologist as soon as possible for reassurance.
You can only imagine my shock to discover that I had a low grade tumour in the speech centre of my brain – the part which had caused the seizure. Although I was told I would be fine, I knew that even a low grade tumour meant a lower life expectancy. I already had more knowledge than most people about brain tumours – I had lost my Dad to a GBM4 in 2005; he was 63 and I was only 28.
I secured an appointment to see Mr Plaha, a neurosurgeon at the John Radcliffe Hospital in Oxford, and explained that I didn’t want to wait for the grade 2 astrocytoma to become malignant in probably two and half years’ time; I wanted to have it removed while it was still low grade. Mr Plaha agreed to go ahead with surgery if that was what I wanted.
As the tumour was in the part of my brain which controlled my speech, Mr Plaha explained that the best scenario would be for me to have wide awake surgery. In preparation for the operation, I underwent a functional scan to see all the “motorways” in my head, an intelligence test and a planning MRI.
I was booked in for surgery on 6th February 2015, but before this happened, the hospital discovered that the MRI completed earlier ahead of the operation had been lost, so I had to have it done again. It was then that I found out that the tumour had already upgraded and was now malignant. On top of that, it was 10pm before the hospital was able to find me a bed and my platelets were found to be low.
It was a really bad day. All along I had been told I wouldn’t need chemo or radiotherapy, but deep down I knew that this was what I would end up having. I am normally a very optimistic person and not someone who cries – but this was one occasion when I couldn’t help but be really upset.
The awake craniotomy went ahead and surprisingly I felt quite relaxed. For much of the time I was talking to Dr Voets, who had been allocated to look after my speech. Mr Plaha showed me on the monitor the part of the tumour which had upgraded to become malignant. I was comforted to know that I remained in control of my speech and was happy that I didn’t have to have a tube down my throat. This meant I didn’t have that horrible experience of waking up with the shock of not being able to speak and waiting to find out if my speech was ever going to come back.
Four days later, a scan showed that all the tumour had been successfully removed and four weeks later I began a six week course of radiotherapy & chemotherapy. And then a further chemo orally (temozolomide) for six months – five days on and 25 days off, although there were a few issues with my platelets.
As part of my strategy to cope with being diagnosed with the same devastating disease which less than a decade earlier had killed my father, I put together a healing plan. Inspired by the book Radical Remission – Surviving Cancer Against All Odds by Kelly A Turner, I wrote my own nine key principles. My sisters, Emma Pearson and Lisa Drew, made it into a work of art and I keep it on my wall so that every day it reminds me that I can heal.
I also had a tarot reading so that I could feel more comfortable about dying and to try and understand what would happen to me when I go. My tarot cards were good and gave me positivity. I found a great healer and had healing all last year and continue to see my healer even now.
I have become very spiritual and have contacted my dad through a medium. He has reassured me that his passing was very peaceful and that my disease won’t end like his. I have also trained in Reiki, looking to self-heal, along with my conventional treatment and have now completed stages 1 and 2 so that I can now treat other people. 24th August 2015 was a day I will always remember – I got married in Scotland to my partner of six years, Tony Basleigh. We just had close family to the ceremony which included birds of prey and owls delivering our rings! It was such a wonderful feeling to be physically well enough to walk down the aisle and enjoy the whole day. I had been concerned that if I left getting married for even a year, the tumour might come back and I could be in a wheelchair by then.
For his part, Tony then and now continues to hide any thoughts or feelings about the future. He is one in a million and loves and cares for both of the children – Liberty Neighbour, who is mine from a previous marriage and now 12, and two year old, Ava-Rose Basleigh, who we had together.
After the wedding, we went off on a “family moon” and then in October I went back to my job part-time, working as a Management Accountant for the Nationwide Building Society.
I felt I was getting back to normal, having had three clear scans – the last being on the 14th December. At Christmas I felt well enough to even have a drink!
After the festive period, I had returned to work (still part-time), when on 8th January 2016 I had a partial seizure, having not had one for a year. I went to the Great Western Hospital in Swindon and had a CT scan which was all clear, but I was kept in for a few days because I was still having partial seizures when I would lose my speech and my face would droop.
On receiving my discharge notes, Mr Plaha called me in for an MRI to check that I was ok. It was then that I found out that the tumour had returned and that I needed another operation as soon as possible. I was devastated. I had really hoped to go two years before anything happened, but just one month on from a clear MRI scan everything had changed.
The only good thing I could hold onto was that the seizure had acted as an early warning sign – by then I was on three-monthly MRIs. I was only too aware that my dad had died within four months of being diagnosed – too late to have a chance of any treatment; at least I was in a much better situation. However, as my tumour had come back so quickly, it seemed to me that my treatment protocol was clearly not working.
I needed further surgery with the same team and again awake, but this time with a fybogel drink which luminesces the veins and the tumour under ultra-violet light. It helps the neurosurgeon to be much more accurate. Whilst still in theatre, Mr Plaha was able to reassure me that the tumour had been fully removed.
This time the after-effects of the craniotomy were that my face drooped and my right hand was so numb that I couldn’t hold cutlery in that hand and had to have physiotherapy. On top of this, my speech was really affected and I couldn’t talk at all for two or three days. I was really worried that I wouldn’t be able to tell my daughters and my husband that I loved them and that I wouldn’t be able to read my youngest a bed-time story. Not being understood was very frustrating. My husband had to keep guessing what I wanted or needed and all I could do was answer yes or no. Even now I am still having to work to get my speech fully restored to normal.
I am now on six weekly cycles of PCV chemo for eight months in total, but I can’t have radiotherapy again. I am signed off work again and have no idea for how long that will be. I am trying to remain optimistic, but I am realistic that it will happen again. If I go by the average expectancy for a GBM (which is 15 to 18 months), then I could have just two more months, but if I get 5 years that would mean so much more time to spend with my girls and my husband, creating memories.
I researched alternative options and went to the Care Clinic in Harley Street, investigating opportunities with repurposing of drugs. I would love to go on the immunotherapy trial currently being undertaken in London, but it is only available privately and most insurance companies won’t pay for it.
The first time I had surgery, I didn’t make funeral arrangements, but now I’m in the process of doing so as well as sorting out power of attorney. I think it would be such a big help to everyone if it was all planned out. I often hear songs and think: “That will be good at my funeral”, or I find a lovely poem. I think about writing a letter to be read out too, but I am also scared that if I do plan my funeral I am giving into the brain tumour and that if I don’t do any funeral planning then the worst can’t happen!
Last year I started a “hopes and dreams box” in which each member of the family puts in what they want to do short-term and long-term. From all the hopes and dreams, we are deciding what we are going to do this year.
Liberty is in denial. She thinks that because I was fine after surgery last year, I will be now. She doesn’t see me as sick. I worry about not being there for her during her teenage years when her hormones are raging. Ava Rose is so little she probably won’t even remember me!
I try and be hopeful with my husband – I’ve got to hang on until a cure is found…
Meanwhile, my speech is getting better, although it does get worse when I am tired. If the tumour comes back, losing my ability to communicate is the thing that really scares me – as well as not being able to see or hear.
My hobby/side-line job is photography and I particularly enjoy taking pictures of children and turning them into flower fairies like those found in picture books (if you google Julie Flippence Fairytale Photographer, you will find me). For every £30 photograph I sell, I give Brain Tumour Research £5. It’s a really good way of giving back – brain tumours kill more children than any other cancer, as well as adults under the age of 40, and there is no cure. Five year survival rates are just 20%. On the other hand, cancers like leukaemia, through far greater funding into research, now enjoy hugely increased survival rates. I just want to do my bit while I still can to make a difference.
Julie Basleigh, 2016