What we will doing:

Over the last weekend of April 2023 - Emma's family and friends will be taking on varying aspects of the Isle of Wight Ultra Challenge in memory of our wonderful mum, friend and wife. We will be raising money for the Tessa Jowell Brain Cancer Mission. Mum followed Tessa’s journey whilst going through her own treatment and the Foundation's mission resonates with our experience and mum's own values, offering a supportive and collaborative approach. 

I (Fiona) will be taking on the full 106km, running the full way round the IOW coastal path over two days, whilst my family and some of mums friends will be taking part in variations of 25 and 50km distances of the event – whether it be walking or running! The Isle of Wight 106km Ultra Challenge seemed fitting because of memories of a positive last family holiday there, and the totally coastal route - mum’s favourite landscape. It also happens to fall a couple of days after her birthday. It will require some of mum's attitude throughout her treatment, which I so admired - her determination to be positive, her resilience and her bravery when there was a lot against her. I think she would smile at the thought of people coming together (although I think be a little alarmed at the distances...!).

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Our experience of brain cancer:

Looking back now after a few years, our family’s experience with brain cancer is a bit of a blur, to be honest. Everything changed in December 2017. Mum froze vacantly and began speaking incoherently, unable to finish sentences. Whilst waiting in a&e, mum had a grand mal seizure and was rushed to the resus room (which was terrifying). The initial CT scan was normal. We seemed to be clear. A further MRI scan was requested ‘just to be sure’ which showed what the doctors believed to be a high grade glioblastoma. We were told to go home and enjoy our Christmas together and await surgery early in the new year. 

The surgery went as well as could be expected and the surgeon believed he removed all the tumour. Although, as we now know with a glioblastoma that is never the case. After the surgery, life gathered a slight routine with chemotherapy and radiotherapy. Dad and Mum created a large, complicated spreadsheet to track the various daily medications and went to radiotherapy Monday to Friday. Our focus was very much on the everyday, getting through the treatment and remaining hopeful.

We were always on edge, looking for symptoms or a spike in mum’s temperature requiring a phone call to the hospital and sometimes a trip to get urgent blood tests. It was mentally and physically exhausting for the whole family. Once, towards the end of the radiotherapy course, I was driving Mum back from seeing my sister’s music concerts which she loved to do. Mum began feeling odd and talking nonsense so I pulled over in a lay-by. Feeling stressed and helpless, I  called for an ambulance and we ended up in hospital. The radiotherapy had made her brain tissue oedematous. Mum returned home on even more treatment, steroids. This and/or the radiotherapy made Mum delirious and shortly after returning home she was admitted to our local hospital and spent a month on the ward.

Mum seemed to have responded well to the treatment and life returned to a bit more of normality. Although, there was always anxiety with scans every 3 months to check whether the cancer had returned. Mum kept track of any potential worrying symptoms and we all tried not to overthink them. Then lockdown hit and we were all at home together again. Despite everything going on we did spend some good time together as a family. 

In August 2020, we got the news that the worrying symptoms this time were indeed regrowth of the cancer. Multiple wagging dog tails, squiggles in visions, pain down her nose, fumbling over words - just some of the symptoms mum experienced as the cancer returned and grew. A re-operation seemed possible and so after a telephone appointment with the surgeon, Mum was booked in. 

With hospitals struggling to cope with the COVID pandemic, the surgery was delayed. When we finally got a date, Mum spent all day waiting at the hospital to be admitted but was sent home and told to come in early for surgery the next day when a bed would hopefully become available. After arriving early in the hospital the next day, the surgeon took my parents into a room and said the cancer had spread too much since the last scan and an operation could no longer go ahead. For me, I never truly let myself understand what this meant. 

We tried chemo again, however it became clear that treatment options were limited. We had a final telephone call with the oncologist in December 2021 where another form of chemotherapy was mentioned. It wouldn’t suit mum. Things all went downhill from here and Mum died in March 2021.

Googling and looking into mum's diagnosis was tough. The prognosis was never great. Both Mum and Dad are doctors so they always understood the severity of the situation but I never really let myself think beyond the near term. We were following seemingly the only treatment method available (unchanged in almost 20 years) so all we could do was just sit tight and hope for the best. We did manage, through a friend, to send some of mum’s tumour for sequencing in America, but nothing really came from that. 

Throughout her illness Mum was always determined to give herself the best chance to fight it. She researched more holistic views, modified her (already good) diet, kept active and prioritised daily walks in nature alongside seeing family and friends. She was determined to be there as a mother, daughter, wife and friend for as long as she possibly could. She was determined not to let cancer take over her life. In the words of Tessa Jowell, determined to "live well with cancer".

I really hope our story highlights the importance in the Tessa Jowell Foundations work, focusing on the need for further training and knowledge sharing for this devastating cancer and the importance of all rounded care for the person, not just the patient. We miss our mum everyday and still question why this happened to her, when she lived a very healthy life. The disease seems to be becoming more prevalent and in younger people, yet no real cause for this is known. Development in cancer treatment is improving all the time, yet brain tumour treatments are getting left behind and in real need of some energy and funding.

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A bit more about what where the money will go:

Tessa’s Brain Cancer Mission was has brought together more than 60 key national stakeholders including; the DHSC, NIHR, the NHS Cancer Team, doctors, nurses and all the national brain tumour charities to create a national strategy to systemically improve and innovate NHS brain cancer services. This will then serve as a blueprint for improving services for other rare and hard to treat cancers.

Brain cancer treatment requires highly specialist healthcare professionals, especially in surgery and palliative care. The Tessa Jowell Brain Cancer Mission identifies national areas of need and works collaboratively to create change to improve brain cancer services for every NHS patient, on a national scale.

In particular, we have chosen to support the Tessa Jowell Foundation raise funds for a project which focuses on;

• the sharing of knowledge between healthcare professionals from all specialities to learn from each other
• promote open clinical trials across hospitals through a bespoke clinical trial finder, highlighting interventional novel drug trials in NHS centres which are recruiting patients nationally
• support research and funding of members
• promote interdisciplinary networks
• address the gaps and challenges in the service and care pathways

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Previous journey to IOW ultra:

Previously, to start this fundraising journey on Sunday 18th September 2022, I will be taking on a 50k race around the Peak District, covering 1900m+ elevation. Claire and Hamish will also be kicking theirs off by taking on the Oxford half marathon16th October 2022.

Thank you from all of us xxx