Heather Warren, 68 from Oxford
I remember only too well the events surrounding Jenny's diagnosis with bowel cancer. It was on a Sunday evening and I was relaxing after having my brother and his partner to lunch when the phone rang. I was aware that Jenny had been suffering from back pain that weekend and had had ongoing bowel problems for years. She was in fact waiting for a colonoscopy. Nothing could have prepared me for what happened next.
'Hello' said Jen 'I have something to tell you. The pain in my back became so much worse so Steven took me to hospital where I had a scan. The results Mum are that I have bowel cancer, which has already spread to my liver.' I was in such a state of shock that I dropped the phone and could not speak. Jenny kept saying 'Mum, mum are you ok?' I somehow finished a kind of conversation and put the phone down. What seemed like moments later the doorbell rang and it was my friends Jo and Julie who had been at a party and Jenny had contacted them with the news. They came to see if I was alright.
As a retired nurse I knew that this was the worst possible news I could be hearing. I had been worried about Jenny since the Christmas before when I noticed she was eating ice from the freezer. In the back of my mind I thought this behaviour indicated a low haemoglobin and I urged Jenny to get a blood test. However it was in March when Jenny finally presented herself at the GP for a blood test. Jenny's Hb was very low (7.2) but the GP sent Jenny away with iron tablets. Apparently the GP attributed the low Hb to the fact that Jenny didn't eat much red meat. I was very alarmed with this news and told Jenny to go back. She did this and was put on the ordinary waiting list for colonoscopy. This was further complicated by the fact that by the time Jenny's name came up for colonoscopy Jenny had had an appendectomy so could not have the colonoscopy. She had a further appointment booked for November of that year, in the event after the diagnosis had been made.
My friend Jo stayed with me that night and I travelled down to London the following day with a sense of dread. My son Ian and my bother Bill joined us in London on that day and we heard what was to be the plan for Jenny in view of this dreadful diagnosis.
I think we were all aware that this could be Jenny's last Christmas. We all made the most of it but all the time there was an underlying feeling of dread.
We all tried to be a bit upbeat and I remember we went to the pub and Jenny was determined to fight for her life. I stayed down in London for quite some time, I can't remember exactly, but soon afterwards the hospital visits began. Emergency colonoscopy, specialist nurse and appointment to see a surgeon. The plan was to try to shrink the tumours with chemotherapy and at a later date to operate.
Following the surgeon's appointment I left London for a bit but was back and forth as Jenny was not too well. We had Christmas but I think we were all aware that this could be Jenny's last Christmas. We all made the most of it but all the time there was an underlying feeling of dread. The day after Boxing Day Jenny had a port-a-cath fitted in readiness for chemo and Jenny received a blood transfusion through the device plus first dose of chemo. Soon afterwards Jenny was admitted to The Royal London Hospital with severe abdominal pain. After opiate pain killers and nil by mouth etc it was decided that Jenny would need surgery to relieve bowel obstruction. Jenny recovered well although the aftercare (I struggle to call it that) was appalling. She was discharged on 13 February. Three weeks to the day of the operation Jenny restarted the chemo at Barts but we really had lost confidence in the care in London. We were told the equipment that produces the chemo had broken down and that the treatment would be haphazard. We decided to move Jenny's treatment to Oxford and Jenny came to live with me. The care in Oxford was so much better: the chemo was well organised and Jenny had six more rounds of chemo.
I have to say having Jenny back at home took some adjusting to. I have been a widow for many years and have lived alone. It was difficult to feed Jenny too as what she enjoyed one day she didn't like the next and it felt as though we were on a constant rollercoaster. Steven, Jenny's husband, used to visit at weekends. I was glad because he seemed to be more able to cook her food she enjoyed. It certainly was a stressful time for all of us. I would go and sit with Jenny while she had chemo and when she felt well enough she would go back to London on the train. I was obviously very distressed with all of this but managed not to let her see me upset. I tried to remain as positive as I could and we had a few little outings.
I think it was in May Jenny had a scan to see if the chemo had had any effect on the liver tumours and, sadly despite chemo, the disease had progressed. The team decided on second line chemo but they had to stop one of the drugs (cetuxemab) as it had not been effective and was very expensive. I recall Jenny was very upset, as was I. It seemed that no matter what was done it didn't make any difference as the disease progressed. Jenny had also developed a pulmonary embolism and so had to inject herself every day with anticoagulants. The practice nurses here in Kidlington were wonderful in teaching her how to inject herself.
I was obviously very distressed with all of this but managed not to let her see me upset. I tried to remain as positive as I could
Jenny started the second line chemo and after one cycle we were thrown another life line: SIRT. SIRT is a targeted therapy whereby radioactive spheres are introduced into the liver directly, the idea being to shrink the tumours. This was carried out in three procedures: the first to block off areas that the spheres are not to go; and the following two for each lobe of the liver. Jenny tolerated all of this very well and with good humour. A little while later Jenny and Steve went on a little holiday to Cornwall which they enjoyed. After returning from Cornwall it was noticed that Jenny had become jaundiced. The hospital thought this may be a reaction to the SIRT and put her on high dose of steroids. After being on steroids for a few weeks it was noted that the jaundice had become worse and after blood tests the consultant told Jenny that this was progression of the disease and that there was nothing more they could offer. Apparently it was noticed after a scan that the cancer had appeared on one of Jenny's lungs but the clinicians didn't tell her this at the time.
After hearing this news Jenny insisted that we all drink champagne. I have never felt less like champagne in my life. Jenny and Steve went on another holiday and Jenny was quite well, but on returning from holiday it was obvious to me that Jenny was unwell and in more pain. Despite this, Jenny managed to celebrate her 35th birthday on 9 November and we managed to go out for a meal. Jenny became more and more unwell and was admitted to Sobel House Hospice in Oxford toward the end of November. Jenny remained there until her death on 6 December.
I am writing this account in the hope it might be useful. Jenny's brother Ian and myself are totally devastated at her loss. A very beautiful woman wrecked by a very aggressive and hideous cancer.
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