Jane Daniel was a wonderful woman whose life was cut short by an Astrocytoma brain tumour. She was 27 when she died in May 2011 at the Cynthia Spencer Hospice in Northampton. In that time, she achieved a lot and did a great deal for others. It is amazing to see what she achieved in the 6 years after her diagnosis in 2005:
- A BSc in Maths & Business from Warwick University
- A MSc in Engineering Enterprise Excellence from Warwick University
- Close to achieving a PhD in Corporate Social Responsibility from Warwick University
- Chairwoman of Old Leamingtonians Ladies Rugby
- Secretary of Northampton Fencing Club
- Treasurer of Warwick Pride
Throughout her illness, I, her wife, kept a weblog which turned into a detailed story of her illness. In the last 10 months of her life, she required constant care. It is my duty to make sure all her work is never forgotten. Please send out the link to the website to anyone you think might be interested or benefit from reading it.
Rough timeline of events (with links to blogs although the blogs in between are also worth a read)
Jane gets a knock on her head during a rugby game. She has a seizure in her sleep a day later and is taken to hospital. Several scans later, it is suspected she has a low-grade brain tumour in her right frontal lobe.
Surgery to take biopsy and debulk tumour. Biopsy is inconclusive but the official diagnosis is a Grade II Astrocytoma. No further treatment is needed after the surgery.
After the surgery, the tumour remains dormant for 2 1/2 years.
Scan reveals tumour is active again but growth is so small no action is deemed necessary for another year.
After a series of migraines and episodes of double vision, an MRI scan is done and reveals the tumour is more active and possibly showing signs of a change in grade. We see the oncologist for the first time ever who decides on a course of radiotherapy.
Jane is fitted for her radiotherapy mask and it is decided the therapy will start right after the new year has begun. A stressful Christmas follows.
Jane has 30 treatments of radiotherapy. The side effects are devastating. Hair loss, bloating,memory loss, incontinence, loss of concentration. They wear off only a little bit and she basically does not recover well from it. In the months that follow, Jane gets worse, rather than better.
The first MRI after the radiotherapy shows it has not helped. Instead, the tumour is now becoming high grade and it is clear Jane will not survive this and her time is to be measured in years, rather than decades. She starts taking oral chemotherapy, Temozolomide (Temodar) every month.
MRI scan shows reduced swelling in the brain as well as a reduced tumour area. All parties are happy. Scan booked for June. The June scan is, we are told, also clear with no changes. However, I have noticed considerable deterioration in Jane’s cognitive functions. When she becomes incontinent, we demand an urgent MRI in September.
From now on, the dying starts. It all goes downhill quickly. The Temozolomide is clearly not working anymore and Jane is put on a different type of chemo. Jane ends up in the Cynthia Spencer Hospice for 10 days. We move house, we get home care and a hospital bed. We are given a few months. But miraculously, (and perhaps cruelly) Jane improves enough over the months for us to have a nice Christmas in the sad knowledge that it is likely her last. By now, Jane is incontinent, has a very bad short term memory, is slow in processing conversations and is unable to be left alone. She is like an Alzheimer’s patient.
Jane improves enough for us to go on a ski trip to Scotland. Her MRI scan, instead of the expected improvement, shows new tumours and more growth of the existing tumours. She is given a max of a year to live. We go to Stockholm in February but have to cancel our planned trips to Holland and Paris.
Jane has a seizure and ends up in hospital for a few days. When she comes home, she is clearly worse. No longer able to walk, she needs to be hoisted in to a chair. I care for her at home. The hardest and most beautiful weeks of my life. She deteriorates quickly and by the end of May, she goes back to the Cynthia Spencer Hospice where she dies after 10 days.