Jenny Warren, 34 from London
"I was diagnosed at A&E with stage 4 bowel cancer in November 2016 just as I turned 34 years old. I live in London.
"Earlier in 2016, I visited my GP as I believed I had anaemia and had gut problems. They found I had dangerously low Haemoglobin levels and was prescribed iron tablets, and referred for a colonoscopy. I waited a few weeks and chased the letter through the hospital but was asked to check with the GP. I’m not sure how long they had my booking form, but no one let me know. I was then able to book a colonoscopy but was told the wait was very long due to the sheer numbers but was booked for mid-July.
"I went back to the GP roughly three more times. On one occasion in July my stomach pain was so severe that I was being sick, but the GP prescribed me anti-nausea tablets.
"The next day, I went to A&E at St Thomas’ and had an emergency appendectomy as they suspected appendicitis. This meant that I had to push back my colonoscopy appointment to recover from the surgery. The earliest appointment was the 1 August but on the day the consultant wouldn’t perform one as he was worried about ripping my stitches. I was booked for another one but not until mid-to-late November.
I’m not sure how long they had my booking form, but no one let me know.
"By this time, I went to A&E again with back pain but this time at the Royal London at Whitechapel, part of the Bart’s hospital trust. The nurse told me that I was on the wrong waiting list and should’ve been referred for a two week urgent referral. I did bring this up with my GP but it’s with the health ombudsman now.
"It was in A&E that I was diagnosed with stage four bowel cancer. It had spread to my liver and lymph nodes. I started with chemotherapy at Bart’s shortly after diagnosis but still had a lot of problems with the continuing anaemia which required surgery to remove the primary tumour. The surgeons at the Royal London that operated on the tumour were fantastic, but I had a terrible time on the general surgical ward after the surgery in recovery.
"Because of the problems I had on the ward after the surgery I lost confidence in my treatment in London and didn’t want to repeat the experience I had. My mother is a retired nurse and the old family GP practice round the corner is great. It was easy to transfer my oncology treatment to Oxford. I’ve moved back to my parents’ house, which has some healthcare advantages for me but which separates me and my husband as he’s in our London flat as he still has to work to pay our mortgage.
I just got married and was looking to start a family. This is now on hold. We’re scared, upset and anxious about the future.
"I am usually in Oxford for the chemotherapy treatments and immediate recovery - and in London for the next week of the cycle - or my husband travels up to be with me. We used to joke that WFH meant "work from hospital" but both of our workplaces were very considerate. After a period of time we have worked out a schedule which is satisfactory but it does mean a huge disruption to our family life.
"This has had such a huge impact on my family. I just got married and was looking to start a family. This is now on hold. We’re scared, upset and anxious about the future.
"My oncology consultant advised us to get in touch with hospice and palliative care teams for the benefit of their experience and because they can help in making home life more comfortable. I have made contacts with palliative care teams in both Oxford and London (through a different GP and a different hospital trust than the initial diagnosis). The palliative care teams and the district nursing in both Oxford and London were great.
"In August 2017, my health started taking a turn for the worse and I started to become jaundiced. I immediately started a course of treatment to resolve it because until the jaundice was resolved, I could not tolerate any more chemotherapy."
In October 2017, Jenny learned that her cancer was no longer treatable and after a few weeks of relatively good health, which she made the most of, her health deteriorated quite rapidly in her final month. She was admitted to Sobell House hospice in Oxford on 24 November, and remained there until her death on 6 December.
Read Jenny’s blog: bodyassindex.com
Donate to Jenny’s Star of Hope fund
But we’re improving access to treatment and care for advanced bowel cancer
Nearly 10,000 people in the UK are diagnosed with advanced bowel cancer each year. This is when the cancer has spread to somewhere else in the body, such as the liver or lungs. People with advanced bowel cancer typically have poorer outcomes but access to surgery and drugs can help to extend life and can sometimes be curative.
We are determined to improve survival rates and support for people with advanced bowel cancer. We want to see improved access to high-quality treatment to ensure longer survival and a better quality of life for people, including:
- Increasing survival rates and improving holistic support for patients and their families
- Reducing inequalities in access to potential life-saving liver surgery
- Improving access to cancer drugs based on clinical need and not postcode
- Providing better communications and support for people with palliative and end of life care needs