On the 14th November I received an appointment from St Mary’s for 17th December. 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 exams for a year, but under the circumstances I wanted to plod on as I may not be around the following year). On one occasion, 23rd November, 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 and I begged my doctor to try and get my appointment at St Mary’s brought forward, but he couldn’t as Professor Tindall was away (I didn’t know why someone else couldn’t see me as I had only seen him at my very first appointment). My GP prescribed some strong painkillers.
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 the prof when he returned, but on the 10th the cyst burst and discharged a brownish pink pus, which was very similar to the ‘pocketful of pus’ that erupted during my bladder repair. The discharge continued all night and the following day. I collected some in a specimen jar to take to St Mary’s, although 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 again it might be suggested that I was imagining it!
I attended the appointment with the professor, only for him to give me the news I had carcinoma in situ of the cervix. ‘I know all that’, I told him, ‘I told you and your staff I was being monitored for it at Ormskirk Hospital where they tried to do a cone biopsy last year, but nobody is listening to me, I can hardly walk, I cant 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 phone Christies. That was Monday, the week before Christmas 1990 – and there had been a scan cancellation on the Friday and he asked me if I would be able to attend.
He came to watch the scan taking place and also present was my previous consultant in radiotherapy, Dr James. I saw them both through the glass window as I entered the room and thought that was rather an unusual occurrence as in my previous experience the results would be delivered to them at a later time. 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 damage my pelvis and I had a hairline fracture, which explained the pain and why I could hardly walk! (I have recently obtained my hospital notes and discovered the scan results read, ‘Appearances are those of recurrent necrotic anal carcinoma involving the pelvic floor, base of the bladder, and both pelvic side walls, with extension through the left pubis and superior pubic ramus into obturator externus’).
It was December 21st and they wanted me to return to Christies on the Monday, 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 on Thursday, I would come straight to the hospital. Realising the importance of this, both consultants were in agreement 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 when the radiology department was closed.
I had to be measured up for the x-ray therapy (as it was called), which included having three small tattoos forming part of an X. One dot at each of the bottom legs of the X (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 Liverpool, which meant that my artwork was becoming sadly neglected, so I took in all the notes I had gathered for my dissertation and I tried to make sense of them on the ward and rewrite them with some sort of structure. 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.
Paul came in as often as he could, but he was working two days a week, so it wasn’t every day. He often brought delicious and nutritious food for me and 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 – and would otherwise not get a cooked meal if he were with me most of the day. We would sometimes exhaust our conversation, so Paul 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. I would sometimes have a read too – get on with my dissertation or do a bit of drawing in my sketchbook. Him just being there was such a great comfort and it didn’t seem to matter if we spoke or not.
As the days wore on I started to feel the effects of the radiation, not least realizing my internal organs were being damaged, especially those behind the bulls-eye. I would have to regularly break off from my dissertation or leave Paul 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 in the close vicinity.
Over the weeks I got to know many of the other in-patients. There was one little old lady in the bed right at the far side of the ward from me, so I didn’t know her very well. One day I was lying on my bed waiting for the bathroom to be free and she walked past, having just returned from her few minutes of radiotherapy, so I greeted her and she came over to talk to me. We compared notes and she showed me the little finger of her left hand where she had a squamous cell carcinoma on the top segment. She told me a bit about herself, she was 80, what a wonderful life she had, lots of children and grandchildren and her husband was still alive and in fact there he was at her bed, waiting for her, with four of their daughters. She went on to say that if the radiation didn’t work she would have to have her fingertip amputated and she didn’t know how she was going to cope with that. I asked if she was left-handed and she said no! I quietly sympathized with her and told her she would soon adjust if amputation was necessary, but really wanted to say, ‘look around you; many of the women on this ward will die – very soon. Just opposite me is Sharron, a student at Manchester University and she has a three-year-old boy – and you are complaining that you might lose the tip of your little finger!’ Aargh! (Not very compassionate of me, but in a cancer hospital it’s usually not difficult to see people very much worse off then oneself).
Some months later I was to learn that Sharron had died, she had just turned 24.
During the course of my treatment I found a lump under my left arm and so Dr James sent me for a mammogram at Withington Hospital, explaining that I (again from my recently acquired notes) ‘had a previous history of cancer of the cervix and was currently having X-ray therapy to left pubic ramus for a long metastasis from a squamous cell carcinoma and wondered if the axillary lump represented a third primary tumour or mets from the SCC’.
Towards the end of my treatment Dr James told me 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 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 James said with the drugs I would be on there was a chance that I would be okay as hair loss usually only occurred in about 10% of people – or did he say there was usually only about 10% of hair loss? That was one of those occasions I didn’t take everything in. I groaned but agreed with his plans for me, as I trusted him implicitly.
Before that however, the lump under my left arm needed investigating, so when I was discharged on the 18th January I had to return again two days later for the lump to be removed the following day. At the same time the professor attempted to do a cone biopsy (as the previous one at my local hospital failed, due to displacement of the uterus. A cone biopsy can be used as a test to diagnose cervical cancer or as a treatment to remove pre-cancerous cells). In doing so he also spotted suspicious tissue in the vagina and so removed it, stitched me up and had the tissue analysed. That confirmed ‘partially necrotic squamous cell carcinoma’. Again, the cone biopsy wasn’t possible. On the plus side, 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’.