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Jeanette was a loving Wife, Mother, Daughter, Sister and Friend. Anyone who had the pleasure to know her would describe Jeanette as kind, caring and selfless at every opportunity... Maybe this is what has made our loss so much harder to bear.
Keep reading below for the story behind our reason to start this charity, and why it means so much for us to ensure other families are provided support that is so desperately needed. |
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In early 2020, in the middle of the first lockdown due to the COVID-19 pandemic sweeping the nation, Jeanette received an NHS letter inviting her for bowel screening - aged just 55 at the time. Due to her Father having being diagnosed with bowel cancer previously, it was a no-brainer that Jeanette would take up the screening.
Upon attending the screening (a sigmoidoscopy) the medical professionals found a higher number of polyps than expected and therefore referred for a full colonoscopy to be completed. This was carried out a couple of months later, and again a higher number of bowel polyps were founded than would have been expected for someone of Jeanette's age. Multiple polyps were taken for biopsies to be completed and a referral then made to the Genetics Team in Birmingham. With this being in the midst of a pandemic, all appointments were attended by Jeanette alone. A full family history was required, and then taken to a meeting with the Genetic Counsellor in Lichfield and then bloods taken for Genetic Testing. These results came back and showed positive for a variation in the APC gene; the variant known as Attenuated Familial Adenomatous Polyposis (AFAP) which if left untreated will lead to bowel cancer and can also increase your risk of stomach cancer. Jeanette was then referred back to the Gastro Team at The Royal Derby Hospital for further decisions to be made. Two were given - either a right hemicolectomy, or panproctocolectomy with permanent ileostomy and pouch. Being Jeanette, and being told that having the lesser option would just mean more surgery in the future, she opted for the full wack - this decision being made on Christmas Eve 2020. The surgery was scheduled for February 2021, and again due to being in another lockdown, meant Jeanette had to face this alone. Surgery went very well and within a week Jeanette was home and on the way to recovery. In April 2021, a routine gastroscopy was carried out in order for Jeanette's stomach to be checked for polyps (as the genetic mutation also causes high number of stomach polyps, thus increasing chance of developing stomach cancer.) The stomach was found to be 'carpeted' but with no polyps looking to be dangerous - which is common for someone with AFAP. It was agreed that annual gastroscopies would be carried out, in order to keep an eye on the polyps. Fast forward to 2022 and in August, Jeanette had an appointment for her annual gastroscopy. With this being routine, we all expected for nothing untoward to be found so had no worries. At the appointment, the consultant found what was described as a 'deep set ulcer' and an urgent CT scan ordered - at this time no further details could be given to us, and we were advised to wait for biopsy and CT scan results. Finally, in September after weeks of chasing and extreme anxiety/worry, a letter was received for a surgical appointment of 27th September. The appointment was attended, with an expectance of surgery being required, but how wrong we all were. At the appointment, the surgeon advised that the 'ulcer' was in fact a 2cm cancerous tumour in the stomach, which had spread to surrounding lymph nodes, pancreas and bones. We later found out the boney deposits were mid-lower spine and pelvis. Surgery was unfortunately not an option due to how the cancer had spread, and the only treatment that could be offered was palliative chemotherapy. The only catch, we would need to wait for further biopsy results to be received before the best course of treatment could be decided. After several weeks of chasing and by this point multiple prescriptions for controlled drugs due to the pain, an appointment was received with the Oncology Consultant. Again this came with a catch, as the biospy results had come back inconclusive for a second time, the samples had then been sent to Nottingham for testing, in order to determine the best treatment. On Monday 24th October, Jeanette attended this appointment, accompanied by Peter and Hannah, and due to rapidly deteriorating health had to be wheeled into the Special Outpatient Department. Nurses took one look at Jeanette and suspected anaemia, resulting in being admitted for full blood tests. Anaemia was confirmed that day, along with dangerously high potassium levels meaning Jeanette was admitted for these to be treated with medication and blood transfusions. Fast forward to Thursday morning, which is when our world came crashing down around us all. A CT scan in the early hours of the morning confirmed the cancer had spread to both lobes of the liver, the small intestine and caused gastric perforation. With immediate effect all active treatment was ceased and a visit was received by the palliative care team at the hospital. As of 11am on the Thursday morning our dearest Jinny was moved to End of Life Care. Jeanette took the decision to be moved to the MacMillan Nightingale Unit and would spend her final hours being cared for there. Will chose to stay overnight and at 2am on Friday 28th October, we were called to Jeanette's bedside. At 06:40am on Friday 28th October Jeanette slipped away peacefully, surrounded by her loving family, finally pain free. |
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A mere 4 weeks from an unexpected diagnosis, to losing our Jinny was all we had. From no obvious symptoms, to being in pain on a daily basis.
We strongly feel that there is not enough known surrounding the risks of being a carrier of AFAP, nor is enough known around the screening required. As a family, we cannot bear the thought of someone else going through what we have, which is our reason for starting this charity. If this can help one person, one family, have a better understanding and the knowledge needed to ensure they receive the best treatment possible then we have achieved what Jinny would have wanted. |