HEALTH UPDATE – THE BALL IS ROLLING AGAIN

Warning – medical details. If you are squeamish, please don’t read.

After everything that has happened (or rather, not happened) over the past 5 1/2 years, it really does now look as if I am going to get my operation sooner rather than later. It’s been a comedy of errors at the Exeter hospital and there have been times when I have regretted the referral away from my local hospital where I have consistently received first class care with no problems. In Exeter, the medical staff cannot be faulted – they have all been efficient, caring and friendly. It’s the administrative system that has let me down every time.

I was recently informed that the second surgeon to whom I was referred is on extended sick leave and I would be seeing someone else. I really was on the point of giving up at this point – the idea of having to start yet again with someone completely new was daunting. However, it was only fairly recently that I saw the second one, and he arranged my CT scan and sigmoidoscopy, the result of which are recent enough not to have to be redone by the new consultant.

I had my appointment with him this morning, at a separate branch of the hospital some distance from the main hospital. He is an Indian gentleman and is absolutely charming and friendly, and was 100 percent on the ball, well up to date with what has been going on with me, and in full agreement with the previous surgeon on the best way forward for me. That is all good news.

He said that because this case is so complex, it is quite a big deal. He will be working alongside his colleague in the operating theatre so two of them will be working on me simultaneously, to do a reconstruction of my abdominal wall and complex hernia repair, releasing of numerous adhesions, tummy tuck to firm everything up which is now pretty floppy and unstable (which will remove my belly button, turning me into an alien lol!) and abdominoperineal resection surgery (removal of my remaining rectal stump – aka Barbie butt surgery). It is going to be a long operation, with a protracted recovery.

A brief summary of events

2013

First bowel cancer screening test when I became 60. Called back as they’d detected blood.

Colonoscopy, which revealed that I was suffering from ulcerative colitis. Ever since my early 20s I had been suffering with chronic diarrhoea, and after various tests, was diagnosed with irritable bowel syndrome (IBS) and was told to manage it with Immodium. I had a respite of a few years just after getting married, but in 2007 I developed ME and the bowel symptoms returned. I was informed that IBS was a common comorbidity with ME, and just to continue with the same management. I believe I was misdiagnosed all those years ago, and so received no appropriate treatment for an inflammatory bowel disease (IBD).

I was immediately referred to a gastroenterologist who put me on medication, which definitely helped with the symptoms. I was told that because of the increased risk of developing colon cancer with an IBD, I would need regular colonoscopies to keep an eye on things.

2015

January – 2nd colonoscopy, revealing a large, very aggressive stage 3 tumour.

Spring – sub-total colectomy surgery (removal of entire colon and most of the rectum, leaving a short rectal stump) resulting in permanent ileostomy.

Summer to the end of the year – 6 months’ intensive chemotherapy. Declared free of cancer at the end of the year.

2016

Developed a parastomal hernia which caused an obstruction. Emergency surgery and inadequate hernia repair. The hernia was back by the summer.

2018

Spring – 2nd hernia repair, with the insertion of porcine mesh. Two weeks after discharge, emergency readmission to hospital with sepsis, the result of a large infected haematoma in my abdomen. Radical intravenous antibiotic treatment, 2 drains. In hosital nearly 3 weeks, sent home with further oral antibiotics for several weeks. The hernia repair failed as a result of this.

December – my surgeon admitted that he was at the end of his skill with this complex hernia and referred me to Exeter to the specialist complex repair colorectal unit.

2019

Saw the first surgeon, who arranged CT scan, which took 4 months to happen. After this, I didn’t hear anything for months, and by the end of the year I was getting desperate so phoned, to be informed that my records had got lost in the system and the surgeon had not even seen the results of the scan.

2020

January – saw him again, and everything looked set to go ahead. The Covid. Full Stop.

Since then, occasional letters offering me surgery elsewhere in the country – not feasible for me with all the travelling, hubby not being able to visit, etc. etc.

2022

Saw the surgeon again after a 2-year gap. Had my pre-assessment and later got a date for surgery at the end of April. This was postponed and we were back to the occasional letters offering me surgery elsewhere in the country. Zilch happening.

2023

Late in the year, was told the surgeon had “disappeared” (no explanation) and I was now being referred to a second one.

2024

January – saw the second surgeon – really on the ball, fresh ideas. He booked me in for a CT scan and also a sigmoidoscopy to examine my rectal stump which he was concerned about – still vulnerable to ulcerative colitis. This test revealed that there was inflammation there and I was still at risk for developing further cancer. He recommended the “Barbie butt” operation (removing what was left and sewing me up completely down there) and also the insertion of a synthetic mesh.

I was told I would have a further outpatient appointment “after Easter” to discuss the way forward regarding the surgery. Nothing happened till July.

July – told this surgeon was on extended sick leave and I was now under the care of the third one, whom I saw this morning.

Now we are here!

This brings us up to date. A lot more stuff happened in between with all sorts of shinannegans with the admin system at the hospital but I am hoping there will now be no further delays and we can get on with it at last.

For full details of my cancer journey, it’s all under the “My Colon Cancer Diary” tab at the top of this blog. In the meantime I have also been treated for breast cancer (3 years ago) and am ongoing hormone treatment as a result.