Chris Harris, Maidstone
My wonderful fiancée, Fran, was diagnosed with bowel cancer in July 2019 at the age of 31.
Fran experienced various symptoms over many years which led her to see her GP on a number of occasions. Like so many young people, she was told she was "too young" to have bowel cancer, "it'll be irritable bowel syndrome (IBS)" and to "eat more fibre and drink more water" (this advice was given despite Fran being a vegetarian with a healthy, high fibre diet and a significant family history of bowel cancer).
At the start of 2019, in addition to irregular bowel movements, constipation and general abdominal discomfort, Fran started to notice feeling fatigued and she could feel a lump near her left hip. This time her new GP finally requested some blood tests, which showed mild anaemia and raised inflammation markers, and she was sent for an ultrasound and a colonoscopy at our local hospital in July.
The colonoscopy showed a large mass in Fran's sigmoid colon, large enough to mean that the colonoscopy was aborted after some biopsies were taken. Even at this point, Fran was told that it's likely to be inflammatory bowel disease (IBD). A few weeks later, Fran was called to come into hospital urgently, and our world was changed forever. She was informed that the biopsy had shown moderately differentiated cancer cells, which later also showed to be both KRAS mutant and mismatch repair deficient. Along with the history of bowel cancer in her family, meant it was highly likely Fran had Lynch syndrome – genetic testing later confirmed this. While she was waiting for the results of an urgent CT scan, we arranged for a private consultation with one of the consultant surgeons from St Mark's Hospital in Harrow (the national centre of excellence for bowel disease and an international referral centre). At this point, I think we were all in shock and the gravity of what has just happened hadn't really sunk in, or maybe we were just naïve and didn't really know what was to come.
The CT scans results were available when we met with the consultant from St Mark’s, and he broke the news that Fran had a very large tumour in her sigmoid colon (at least 10cm), involvement of her left ovary, several enlarged lymph nodes and there appeared to be a nodule on her peritoneal lining. To say we were scared and devastated was an understatement. As it happened, the consultant was joint lead of the complex cancer clinic at St Mark's, specialising in pelvic and peritoneal disease, and he immediately had plan. He told us that Fran would need some chemo, following which he would look to undertake Cytoreductive surgery with HIPEC (the removal of all visible disease and the infusion of chemotherapy directly into Fran's abdomen). He was very clear that this is a big operation, but it was what Fran needed. Fran immediately agreed, she just wanted the cancer out! He arranged for Fran to see an oncologist, who then arranged for Fran to have a Port-a-Cath fitted and the commencement of treatment (this all happened within 10 days). In the meantime, we saw the consultant at our local hospital who had no surgical plan and said she would refer Fran to the oncologist but he was on holiday and so it was unlikely that any treatment would commence for between four to six weeks. She also counselled against moving Fran’s care elsewhere. Needless to say, we didn't think this was good enough and, looking back, it appears to be another example of someone suspected of having stage 4 cancer being treated like a second-class citizen.
Fran commenced FOLFOX treatment in August and, after two cycles Avastin was added. In late September, after four cycles, Fran had a CT scan which showed an excellent response in the bowel tumour, unremarkable lymph nodes no comment of peritoneal disease. While the left ovary mass had grown, we were warned this may happen prior to treatment. Fran was then booked in to have a diagnostic laparoscopy prior to planning surgery. Unfortunately, shortly after the scan results, Fran woke up on a Sunday morning doubled over in pain, it was obvious something was very wrong, and we rushed to our local A&E. Fran had suffered a bowel perforation, and we arranged for her to be transferred via ambulance to St Mark's where (after a few days of antibiotics, pain relief and IV fluids) her surgeon drained Fran's abdomen and placed a loop ileostomy to bypass the perforation while undertaking the pre-planned exploratory laparoscopy. After five days of hell, I’ll never forget walking onto the ward just after Fran had returned from the recovery room to see her smiling and eating biscuits! Not long after I arrived, the surgeon popped his head around the curtain to tell us that, amazingly, the laparoscopy showed no peritoneal disease. However, given the perforation and risk of peritoneal seeding, it was agreed that Fran should still have HIPEC treatment. Fran was sent home to recover, and a planning MRI was arranged.
We had just received the letter from St Mark's confirming the date of Fran's surgery when she had a phone call while her consultant was away, the MRI had shown that Fran's tumour was pressed against her iliac vessels on the left side of her pelvis which meant that surgery had to be cancelled, another frightening turn of events. When Fran's surgeon returned, the vascular team were consulted and it was agreed that the operation could proceed but Fran would need vascular surgery first, where a Fem-Fem Crossover graft is placed across the pelvis, bypassing the left iliac vessels and using the right-side vessels to supply blood to and from her left leg - we had a plan!
From late October, Fran spent four weeks in hospital. It still blows my mind that, in those four weeks, Fran had five-hour vascular bypass surgery (following which she had to learn how to walk again), and an 11-hour pelvic exenteration surgery which included the removal of roughly a third of her large bowel, some of her small bowel, a total hysterectomy, the stripping of her peritoneal lining and 90mins of her abdomen being washed with heated chemotherapy. During this surgery myself and Fran's mum were wondering around the corridors at St Mark's hospital when her surgeon appeared. mHe was taking a break while the chemotherapy was being infused and seemed confident that they had managed to remove the disease. I’ll never forget the expression on his face as he commented that, given the size of what he removed, he didn't know how Fran had manage to carry with that inside of her.
Fran recovered exceptionally well and, in mid-December, she walked into the consultant's office (I still remember his jaw dropping at how well she looked) and he confirmed to Fran what he had already told me on the phone. There were good margins around the tumour, no sign of metastatic disease, and pathology confirmed that all 42 lymph nodes removed were clear of cancer, so the disease was actually stage 2. There were tears all round, even the consultant began to well up as Fran thanked him for what he had done for her. There were, however, risk factors (the perforation, the size of the tumour - which had growth through the bowel wall and enveloped Fran’s left ovary and started to invade the back of her uterus - and cancer cells were found in vascular, lymphatic and nerve pathways) and so Fran would need mop up chemo. We ended 2019 on a high, Fran made me the happiest man alive as she said yes when I proposed to her on Christmas day and we turned our attention to getting through chemo and back to some normality. But the universe had other ideas.
Fran started eight cycles of adjuvant FOLFOX in January 2020; the last few of which were very tough, we were warned this would be the case given the cumulative nature of the side effects. Of course, COVID also happened which meant that I couldn't be with her in the treatment suite, which I found really difficult, and we were forced to shield. Shortly after the final cycle in May, Fran had a post treatment scan which showed no evidence of disease. However, our celebrations were sadly very muted as shortly before receiving the scan results, Fran's father passed away from COVID. This was emotionally an incredibly difficult time for Fran as not only was she was grieving the loss of her father, she finally had time to start coming to terms with her cancer diagnosis, the treatment side effects, and long-term implications such as no longer being able to have children and being plunged into the menopause. COVID distanced her wider support network just when she needed it the most. Despite this, Fran was always so positive, and she continued her recovery; spending lots of time gardening, we went on long walks together and she even manged to start to go running again.
In July, Fran started to experience subtle pain in her left hip area, which we thought was most likely due to her over doing it so soon after such a massive operation. To be on the safe side, her oncologist requested a PET scan, and a subsequent MRI, which confirmed the devastating news that Fran's cancer had returned in three places in her pelvis - the left lateral side wall, the pre-sacral area and next to her rectum. The disease was also causing a blockage to her left ureter. We were frightened at what this meant, the recurrence had come quickly after such extensive treatment, but once again we had a plan. A stent was placed to preserve function in Fran's left kidney, and she commenced FOLFOXIRI (which is widely regarded as just about the most brutal chemotherapy regime there is) with the plan to do repeat HIPEC surgery with her surgeon at St Mark's.
A PET scan was booked after Fran's fourth cycle in late September, but while we were waiting for the results, Fran started to feel nauseous, her ileostomy had largely stopped working, there were loud bowel sounds and she was bringing up lots of green watery vomit. We took her to our local hospital where she stayed for a week and was treated for suspected chemo induced enteritis (a source of anger to us, given what was to come, and something that we still can't understand, was that at no point did the hospital perform a CT scan). While an inpatient, Fran received a call from her oncologist detailing that her scan had showed a mixed response to treatment, with reduced activity in the pre-sacral area but the other areas having grown slightly.
While we waited for St Mark's to review the scans, Fran was discharged from our local hospital despite no real improvement in her condition, and she endured a further few weeks at home with the same symptoms and was rapidly losing weight given she could not keep any food down. It was at this point that she spoke to her surgeon, and within a few minutes of Fran telling him what she was experiencing he said that he thought she was obstructed.
A few days later, while she was in St Mark's having a pelvic MRI, the radiologist arranged for her to be admitted as she was clearly too poorly to go home. Sure enough, the scan confirmed a multi-focal malignant small bowel obstruction which to resolve required six-hour salvage surgery at the start of December, involving the removal of over 75% of Fran’s small bowel and the placement of a venting colostomy. We can't help but feel that had she had a scan when she was admitted to our local hospital with these symptoms almost two months earlier, Fran would not have had to suffer for so long, and the operation required would have been significantly smaller. One of the hardest parts about this for me was that Fran spent three weeks in hospital on her own due to COVID, it broke my heart being apart from her while she was going through this.
Given the mismatch repair deficient nature of Fran's cancer, she was a good candidate for immunotherapy (Nivolumab, which had just been made available on the NHS) and this started in January 2021, still with the hope of a good response and a curative operation. Despite some promising early indicators (such as falling tumour markers), Fran suffered another multi-focal bowel obstruction in February. There was suspicion that this may be pseudo progression (where immunotherapy causes immune cells to infiltrate the tumour, causing it to increase before it is killed). As the obstruction couldn't be surgically resolved it was managed conservatively and, in March, after another month in hospital on her own, Fran was sent home on TPN (being fed via IV fluids overnight) to continue Nivolumab. Fran loved her food, she loved to cook, and it was really hard to comprehend that she could not eat anything and could only take sips of water for comfort. This also involved her having an NG tube to drain her stomach and nephrostomies for both left and right kidneys - as her both left and right ureters were now being blocked by disease, to add to her ileostomy and venting colostomy. Fran required regular medication to manage her pain and nausea. You could see from the looks on the faces of the nurses that visited Fran that they felt out of their depth, and they often didn't really know what to do.
Devastatingly, her subsequent scan in May showed that the suspected pseudo progression was, in fact, actual progression. The disease was now filling Fran's pelvis and there were also two new tumours in her liver. The MDT team at St Marks, along with the MDT team at Imperial (the lead consultant there often works with Fran's consultant on very large cases) reviewed Fran's scans but sadly the disease had grown very aggressively and gone too far. In early June, while she was again alone as an inpatient at St Mark's being treated for an infection, she was told that there was no longer a surgical option for her. At least this time we were allowed to be with her when she received this news and stay with her in a side room until she was discharged. Fran came home and we looked after her until we could no longer manage her symptoms and she chose to go into hospice in early July.
Fran fell asleep for the last time in the evening on Saturday 24th July at the age of 33 with her loved ones around her in our local hospice. She suffered far too much and was taken far too soon, the pain of which is made all the worse by knowing that this could have all been avoided had she not been turned away so many times by GPs over the years!
Fran was so brave, selfless and positive to the end, and she always retained hope. Despite all that Fran endured, she never complained, there were never any "why me" outbursts, she was never short tempered and was always more concerned about everyone else. I am so proud of her, and I will forever be truly humbled by her and I miss her every day. Fran did not lose her battle, she never gave in but it wasn’t a fair fight. She was not just a cancer patient, Fran was a daughter, a sister, a best friend and my fiancé. Although her life was too short, she lived it to the full, gave so much love and touched so many people in the process. She was the most amazing person, with the purest of souls and the biggest of hearts. She will be forever loved and missed.
It's now been just over a year since Fran passed and, in that time, inspired by Fran’s strength and the pain of such immeasurable loss, myself and Fran’s loved ones have become even more determined to do what we can to raise awareness in the hope that others don’t have to go through what Fran went through. We have raised funds for cancer charities and our local hospice, we have taken part in clinical research and are looking at other way to make early diagnosis in the young the expected standard of care, not just the luck of the draw!
In the past year, in the online community, we’ve seen time and time again young people with so many hopes and dreams, so much life to live and so much to give, go through life changing treatment and/or lose their lives because GPs have dismissed symptoms. This has to stop.
