Cancer & me 35 years on - Metastases and radiotherapy

cancer & me 35 years on written over a sketch of a nurse sitting on a patient's bed while the patient is lying down. There are flowers on the bedside table.
                                           Sketch, and all other artwork, by Willo

Today we are back with the next instalment of Willo’s blog, ‘Cancer & me 35 years on’.  Willo was diagnosed with Anal cancer in 1986 while living in Zambia. In this blog series Willo has been sharing her experience of living through and beyond cancer. Alongside sharing everything she has been through, Willo has also been sharing the amazing artwork she created during this time in her life.

From talking about how she moved back to England after her diagnosis to start treatment, to sharing her experience of going back to art school after her colostomy surgery, Willo has shared with us her whole journey in the hope that it will help others to read about what she has been through. As one Community member commented after reading Willo’s blog, ‘
35 years and still going strong. There is hope for us all.’

Today we are back with Willo as she received some difficult news. After a year of attending appointments, it is confirmed her original tumour has spread, and she is also diagnosed with cancer of the cervix.

Vol 14 – Metastases and radiotherapy

In November I received another appointment from St Mary’s. Meanwhile the pain was getting worse even when lying in bed – excruciating when turning over and equally painful when trying to lie on my back. I seldom went into college, doing most of my work at home with Paul taking me in for tutorials (I had been told I could defer my course for a year, but under the circumstances I wanted to plod on as I may not be around the following year).

On one occasion, I was in such agony that the tutors wanted to take me to the hospital, but I declined as I had an appointment with my GP that evening. Paul almost had to carry me into the surgery. My GP prescribed some strong painkillers (so strong in fact, that the pharmacist said they would kill me and he contacted the surgery regarding the error).

“On one occasion, I was in such agony that the tutors wanted to take me to the hospital, but I declined as I had an appointment with my GP that evening.”

Things went from bad to worse and on the 5th December, I discovered a lump inside my vagina and also experienced problems passing urine. I got an appointment to see my GP the following day and he thought the lump was just a cyst and told me to wait to see my professor at the hospital. But before I could, the cyst burst and discharged a brownish pink pus.  

The discharge continued all night and the following day. I collected some in a specimen jar to take to St Mary’s. Although I knew they wouldn’t be able to analyse it as it would be too old by then, but if I had no evidence then it might be suggested that I was imagining it again!

“I know they wouldn’t be able to analyse it as it would be too old by then, but if I had no evidence then it might be suggested that I was imagining it again!”

I attended my appointment with the professor, only for him to confirm I had cancer of the cervix. “I know all that”, I said, “I told you and your staff I was being monitored for it but nobody is listening to me, I can hardly walk, I can’t lift my left leg, your staff have had to do it for me!” With that he helped me onto the couch, examined me and immediately went to phoneArtwork by Willo showing some goldfish in a bag. Christies. That was Monday, the week before Christmas 1990 – as there had been a scan cancellation he asked me if I would be able to attend.

“I attended my appointment with the professor, only for him to confirm I had cancer of the cervix. “I know all that”, I said.”

The professor came to watch the scan taking place and also present was my previous consultant Dr J. I saw them both through the glass window as I entered the room and thought it a rather unusual occurrence, as in my previous experience the results would be delivered to them later.  

Scan completed, they both came into the room with grave faces and said the original tumour had thrown down deposits; the disease had metastasised.

The tumour had started to erode my pelvis and I had a hairline fracture, which explained the pain and why I could hardly walk!

“The original tumour had thrown down deposits; the disease had metastasised.”

It was December 21st and they wanted me to return to Christies on Christmas Eve to start radiotherapy with a break for the holidays. I said “no”. For months I had been telling their staff that there was something wrong with my pelvis and they had been ignoring my symptoms and pleas for help – and now my elder son, who was working in Hong Kong, was arriving home on the Sunday and would only be in the UK for just four days over Christmas and I wasn’t going to give up that precious time with him. So, after we had taken him to Manchester airport, I would go straight to the hospital.

“They wanted me to return to Christies on Christmas Eve to start radiotherapy…I said no”.

Realising the importance of this, both consultants agreed and so on 27th December I started radiotherapy. It would only be for a few minutes each day, but I remained in hospital during the week, returning home at weekends.

I had to be measured up for the x-ray therapy (as it was called), which included having three small tattoos forming part of the letter X. One dot on each of my upper thighs and one at the centre point – the bulls-eye – right in the centre of the pubic bone.

(As the tattoos are permanent, they are always a reminder and I am very conscious of the two on my legs whenever I am wearing a swimming costume).

“All this was taking place during my final year at art school in Liverpool, which meant that my artwork was becoming sadly neglected”

All this was taking place during my final year at art school in Liverpool, which meant that my artwork was becoming sadly neglected, so I took into the hospital all the notes I had gathered for my dissertation and I tried to make sense of them on the ward. Not an easy task with all the activity going on around me. The amazing nurses took pity on me and allowed me to use the Interview Room whenever it wasn’t in use, something for which I shall be eternally grateful.

Photograph of a statue of a woman wearing a black dress created by Willo.

“I took into the hospital all the notes I had gathered for my dissertation and I tried to make sense of them on the ward.”

Paul (my partner) was semi-retired, still working two days a week, but came to visit as often as he could, sometimes bringing delicious and nutritious food for me. He would sneakily have my hospital food, which was quite good, but I couldn’t face a cooked meal with pudding, and he seemed to enjoy the meals.

“He would then take a walk around the hospital and invariably return with a broadsheet, which he would spread over my bed and read from cover to cover.”

We would sometimes exhaust our conversation, so he would then take a walk around the hospital and invariably return with a broadsheet, which he would spread over my bed and read from cover to cover. Him just being there was such a great comfort and it didn’t seem to matter if we spoke or not.

“Sometimes bringing delicious and nutritious food for me. He would sneakily have my hospital food.”

As the days wore on, I started to feel the effects of the radiation. Regularly I would have to go and sit on the bidet, which I would fill with cool water to try and ease the burning sensation, my urethra taking the brunt of the harm, but also severe burning to everything else in the close vicinity.

“Him just being there was such a great comfort and it didn’t seem to matter if we spoke or not.”

Over the weeks I got to know many of the other in-patients. In the bed just opposite me was a student at Manchester University, the mother of a three-year-old boy. She had cancer of the cervix, much more advanced than mine. Over the weeks I watched her deteriorate (in a cancer hospital it’s usually not difficult to see people very much worse off than oneself) and some months later I learnt of her death; she had just turned 24.

“Over the weeks I got to know many of the other in-patients.

During my treatment I found a lump under my left arm and so Dr J sent me for a mammogram. He also told me towards the end of my Radiotherapy that he wanted me to take a month off and then start a course of chemo. I was horrified at the news, as I associated chemo with vomiting, which is something I have always found really hard to cope with. And what about my hair?

“I was horrified at the news, as I associated it with vomiting, which is something I have always found really hard to cope with. And what about my hair?”

Having had long hair for most of my life, the thought of losing it was almost unbearable, but Dr J said with those particular drugs, 5FU and Mitomycin, there was a chance that I would be okay. I groaned but agreed with his plans for me, as I trusted him without reservation.

“I groaned but agreed with his plans for me, as I trusted him without reservation.”

Before that however, the lump under my left arm needed investigating, so when I was discharged I had to return again two days later for the lump to be removed. The histology report on the lymph node under my arm showed mild histiocytosis, but no evidence of neoplasia – and the results of the mammogram came in and they were ‘satisfactory’.

We want to thank Willo for sharing her experience as well as her amazing artwork with us today. Shared experience is so important here on the Community, and if reading Willo’s story has impacted you today, why not comment below to let her know.

If you want to read more about Willo experience, why not take a look through the rest of the series so far:

Vol 1 - ‘To begin at the beginning’
Vol 2 – ‘Best friends forever’
Vol 3 – ‘The journey home’
Vol 4 – ‘Brachytherapy

Vol 5 – ‘Jolly hockey sticks!’
Vol 6 – ‘The Abdominoperineal resection with colostomy’
Vol 7 – ‘The recovery’
Vol 8 – Lanzarote & Menorca
Vol 9 – ‘The interview’ – International women’s day
Vol 10 – ‘A chance encounter’
Vol 11 – ‘Good news, bad news’
Vol 12 – ‘Hong Kong and Back to reality
Vol 13 – ‘Surgery at St. Mary’s’

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