My name is Pat Williams (AKA Willo). I am 80 and my anal cancer first appeared 40 years ago and I have been surviving bone mets for 35 years (which people have trouble believing). My original tumour first appeared as an anal lesion in 1985 when I was living in Zambia. I was referred to a consultant who dismissed it as haemorrhoids.
I returned to my doctor after the Christmas holiday in January 1986. As the previous surgeon had dismissed my symptoms, my doctor asked a mutual friend (an orthopaedic surgeon) if he would examine me. He kindly agreed to do a biopsy and after receiving the results some 10 days later, said it was cancer and I should return immediately to the UK for treatment.
On April 1st I was admitted to the renown Christie hospital in Manchester, under the care of the now deceased, Dr James, the consultant in radiotherapy. He recommended brachytherapy (10 radium needles inserted around the anus and sewn in situ for almost a week).
I convalesced at my parents house and in May returned to Zambia, but 18 months later the cancer recurred in lymph glands higher in the rectum. I flew back to the UK, where I had an abdominoperineal resection with colostomy in November 1987.
Sadly, I decided I should leave Zambia permanently - and remain in the UK. In order to have a better chance of earning a living I embarked on a degree course the following year, 1988.
Less than a year later it was discovered I had another primary tumour. This time of the cervix, but my local hospital was unable to do the curative surgery (cone biopsy) on account of my uterus having been displaced by the previous abdominal surgery. I was just to have regular smears to monitor the situation.
In 1990, I started being ill again, in particular stress incontinence. The doctors at Christies decided to refer me to the hospital for women and children, St Mary’s, Manchester. The professor’s opening gambit was, "After all you have been through, My Dear, isn’t this possible it could be all in the mind?” I bit my tongue, kept calm and assured him it wasn’t “in the mind”.
After various tests they decided on a bladder repair. The surgeon said “a pocketful of puss erupted” when she made the incision - and my bladder only needed a minor repair. She had no idea what the puss was and said it was “just one of those things!”
At St Mary’s they also discovered the problem with the cervix. I told them I was being monitored at a local hospital, but that seemed to fall on deaf ears. After lots of tests and examinations they concentrated entirely on my cervix - colposcopy etc, even though at each examination I couldn’t lift my left leg onto the bed and was in great pain. In their tunnel vision nobody questioned those symptoms. I could hardly walk and had to drag my left leg behind me.
Finally, on 17 December 1990 I had an appointment to see the professor again. With a grave face he told me I had cervical cancer. I looked at him in disbelief, “I know that - and told you they had tried to do the surgery last year at my local hospital and failed. But apart from that, your doctors haven’t been listening to me!” He asked what I meant and I told him of the excruciating pain and that I could hardly walk - and at the various examinations I had been unable to lift my left leg - and his doctors or nurses had to lift it up onto the couch for me. He looked at me in amazement and asked to examine me, helping me onto the couch.
Examination over, he immediately went off and phoned Christies and returned with the news that there had been a cancellation for Friday and could I go there for a scan? Of course I said yes - and he and Dr James were present. After the scan was complete, they both came into the room to explain. The original tumour had thrown down roots, eroding and fracturing my pelvis. The base of my bladder and both pelvic side walls were also affected. They wanted me to be admitted for radiotherapy the next working day, Monday, Christmas Eve. I said “No”. My eldest son would be over from Hong Kong for just four days and I wanted to spend that precious time with him. They realised just how important that was and so after taking my son to the airport on the 27th I went straight to Christies to start a month of external beam radiation.
The radiotherapy took only a few minutes each day and so I occupied myself with writing my dissertation, as I was then in the final year of my degree. The nurses allowed me to use the peace and quiet of the Interview Room whenever it was free.
Following the last week of radiotherapy I was admitted for surgery for the removal of a lump under my arm (turned out to be negative) another attempted cone biopsy (failed again) and a vaginal biopsy (positive).
Then home to my parents before starting chemo. However, a few days later I started haemorrhaging and was admitted as an emergency to a local hospital, where I nearly died. Three weeks later I started chemo.
Some weeks after finishing the chemo I had a scan and then later, an interview with Dr James. Very gravely he told me they had done everything they could, but he knew me and what I was capable of and then he said, “It’s up to you now!” I accepted the challenge. A short while later I graduated on schedule. My artwork had suffered, as I had spent most of that final year in and out of hospital, but I gained a 1st for my dissertation.
I continued having regular cervical smears at St Mary’s Hospital and as I had been very badly burned by the radiation and had vaginal stenosis, the professor decided he should do some plastic surgery in the vagina and around the perineum. This was a disaster and he had to redo it - and again!
Many years ago I moved to a different town and of course, a new GP practice. In 2015 I discovered that somehow my patient notes were incomplete and so they had no knowledge of my metastases and found it hard to believe me. So - thirty years after my original tumour, I obtained my notes from The Christie, which had been kept on microfiche all that time. A couple of years later I also got my notes from St Mary’s and the letters from one consultant to another make interesting reading. Not least the fact that they hadn’t expected me to survive.
I am now very vocal regarding Anal Cancer and am increasingly dismayed that the major cancer charities in the UK rarely make mention of it. When I was first diagnosed, Bowel Cancer UK appeared to be our umbrella group, but now they seem to have disowned us, refusing to acknowledge World Anal Cancer Day, likewise Colostomy UK and Cancer Research. I am really dismayed by this, given its frequent connection to the Human Papilloma Virus.
A more detailed account with photographs can be found on my blog, (13 episodes): https://willowilliams.wordpress.com/2015/02/08/cancer-me-thirty-years-on-part-one-to-begin-at-the-beginning/
Because of all the vaginal and perineal surgery I developed a pelvic organ prolapse with grade 3 cystocele and also radiation cystitis and bladder stones and I’m now on rotational antibiotics. Not ideal as that is really causing problems with my gut biome.
Over the years I have had various forms of skin cancer or pre-cancers - Bowen’s tumour, BCCs and SCCs on my face and leg, probably all due to my exposure to the sun in Zambia. However, last year (2024) I was treated for a malignant melanoma on my left forearm and had three lots of surgery on the original site and had four lymph nodes removed from my armpit. So far, so good.
