Steve Freedman - My Cancer Story

I was diagnosed with Low Rectal Bowel Cancer in August 2021.
I was offered what the surgeon called the NHS Gold Standard - A permanant Stoma and free bags for the rest of my life, or die within two years.
I was told there were no options...

Elstree Cancer Centre - February 2022. Just completed five rounds of Radiotherapy and Chemo.

This website is nearly finished being UNDER CONSTRUCTION!

My story begins in July 2021

As part of the UK Bowel Cancer Screening programme, The NHS bowel cancer screening kit used in England is the Faecal Immunochemical Test kit – knoNHS Poo Stickwn as the FIT kit.

You collect a small sample of poo on a small plastic stick and put it into the sample bottle and post it to a lab for testing. There are comprehensive instructions that come with the kit, but it is easy to do.

Late July 2021, I send off my Poo Stick, as I had done evey couple of years since I turned 60, not expecting it to come back and bite me on my arse!

I knew I was more likely to get cancer than normal, a few years ago my cousin found that she had the BRCA2 gene and she suggested that all the cousins and their offspring get tested. My mother died from breast cancer, her sister died from ovarian cancer and her mother (my granmother) died from breast canver.. I had the test done and found I had it, as did my sister, who had already had breast cancer and was now in remission. One of her son's had inherited the gene, and one of my children also.

Four days later I received a phone call to arrange a friendly chat regarding my FIT kit results at Hemel Hempstead Hospital.

I wasnt expecting what followed.

August 9th – We met the screening nurse at the hospital and she talked about the results of my Poo Stick - small traces of blood had been found in it and it needs to be investigated. I need to have a colonoscopy to check it out. Of course I agreed and a colonoscopy was booked for five days time. They are not wasting any time, I thought.

August 12th - I have a colonoscopy tomorrow morning.
Tonight is prep night! - I had to take a very powerful enema, strangely called Moviprep, - not something you want to drink when you're watching a Movie! I spent the next four hours rushing in and out of the toilet. Not the best evening's entertainment I've ever enjoyed.

August 13th - Colonoscopy with Mr Bruce Macfarlane at Hemel Hospital.
There were four or five of us there that morning, we were each given a bed to lay on, and we were each called in one by one. I was last. I dont remember too much about it because I had a sedative beforehand (recommeded!). Afterwards I was still drowsy and dosed off again.

I woke up, looked around and realised the other five guys had gone home, I was on my own.

A nurse came in and asked my to call my wife in, as the doctor needs to speak to us.
This is not looking good.

It's not good news

We were ushered into a private office and the door closed.

He looked very serious and put his black hat on!

He told me there and then that he had removed two polyps in my bowel but had also found what he was pretty sure was cancer in my lower rectum. He showed us a photo of it that was in his notes. He was sending a biopsy off to the lab to confirm.

This really is not looking good.

September 3rd – I had an MRI at Watford Hospital.

We had booked a weekend break prior to the goings on to Derbyshire to visit Chatsworth House, which we had wanted to visit for ages, We went, and while we were sitting in a nice cafe, having coffee and a nice slice of cake, my phone rang. PRIVATE NUMBER. We both looked at each other. I answered. Hemel Hospital want us to go to a meeting there on Monday, today is Friday. We drive back home on Sunday.

September 13th - Meeting at Hemel with Mr Najibullah Daulatzai, a surgeon at Watford NHS Hospital and a nurse. In a short meeting he asked me what I knew. I told him that I thoght I may have bowel cancer. He then told me that the good news was that my tumour had been caught early - it was between stage 1 and 2 (T1 or T2) and less than 3cm in diameter. That's good I thought.

He then went on to tell us the bad news. The bad news was that they were going to remove my entire lower bowel and sew up my anus, and give me a permanent stoma. This would completely remove the cancer. This had been discussed by the multi-disciplinary team (MDT) at the trust as the best outcome, it's a shame they didn't run it by me first.

This was a lot to take in, very scary, and didnt leave me with any options.
It was don't have the the operation and die within two years or have the op and likely be cancer free, but be permantly disfigured and dealing with the major problems of having a stoma (colostomy bag).
Lots of emotions kicking in, Denise was taking this badly too.

The reason being that my tumour was within two inches from my rectum (low), normally they would remove the bad part of the colon that had the tumour, and reattach the good parts. Because of the fact the tumour was low, there wouldnt be enough flesh there to reattach, and for it to work properly afterwards. The outlook wasnt sunny.

You Can Kiss Your Arse Goodbye

He told me that October 14th had been booked for me to enter hospital for five days and kiss my arse goodbye!

When we asked about possible alternatives, he basically said there were none, but, I could get a second opinion if I wished to.

My wife and I were both in complete and utter shock!

I had absolutely no symptoms.

I phone my sister to tell her the news. She tells me that she, too, has seen an oncologist and now has cancer of the pelvis. She'd had breast cancer years ago.
What the hell is going on?

September 20th – We had a consultation with a private doctor
He said in no uncertain terms "have the op, it’s definitely the best solution!"
Not what I wanted to hear.

September 21st – Pre Op assessment at St Albans NHS. Very depressing.

A few days later I received a call from the cancer nurse regarding my upcoming operation.
My wife Denise told me to ask for any relevent information to be sent asap, so I did.

The next day a big pile of pamphets arrived in the post, the main one being a Macmillan book, more like a paperback really.Macmiillan Colon Cancer Book

I grabbed it and started to read the Macmillan booklet. Hidden within it was a vast amount of information which would prove to be the beginning of my mission to “save my arse”!

My immediate thoughts were, if I found the information in this book, then why didnt the doctors tell me about it? Didn't the multi-disciplinary team kow about this?

What I had stumbled upon, amongst the wealth of information contained within this booklet, was the Papillon treatment which is brachytherapy – a targeted contact system which can be used for the type of tumour I had. In terms of position, it was in the right area and, crucially, it was the right size for treatment to be successful, I thought, from what I knew, being a novice on a rapid learning curve.



DONT Just accept what a Doctor tells you.
Look for CHOICES!


Interesting links

From the Daily Mail: The Bowel Cancer Operation that means you DON'T need a Colostomy Bag


Macmillan Cancer Support

Papillon Patient Support

Bright Cancer Charity

Bowel Cancer UK

Buy Mark Davies's Book here!


Online Course

Training World Ltd is a ROSPA Member


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