Recently Pixie wrote about her Cancer , how it felt hearing that she had cancer, living through her treatment and how her nearest and dearest coped with it. This got me thinking about my experience. I have written several times about, being a survivor and how I feel about that but I have never put into words my actual experience. I have not owned my experience the way pixie has. So today I am going to try to write out my experience. I don’t know how difficult this will be as I am not sure what will come out by doing this.
Since my cancer was treated I have encouraged other women to have pap tests (smear tests) and mammograms, to keep themselves healthy for the sake of their families. I have never said anything that would lead anyone to realise how I found out that I had cancer. I am sure the majority of people will think that it was through a routine smear test. This was not the case, I was one of those unlucky few who slipped through the net.
When my youngest child was 6 weeks old I had my routine post natal checks that included a smear test. The test came back with a request for a further test as there were insufficient cells to test. Apparently this is not uncommon after a birth, it takes a while for the cells to grow back. I had a further test which was normal. I was due to have my next test when my son had just turned 5. (In the UK we have routine tests every 5 years although in some places it’s every 3 yrs, I gather in the US it is every year). The reason given for the longer time period here is the lack of resources to examine the tests that are taken.
So this is my story of how I found out I had cancer and what happened next. It was over the Easter period in 2000, I began to notice that I was waking up wet, get your mind out of the gutter, not that kind of wet! I was beginning to leak for no apparent reason. I felt so embarrassed; I figured it must be due to my age and weight. I was 38 and very over weight, I had seen the adverts for Tena Lady, so I thought it must be something natural. I put up with it for a few months, wearing panty liners all the time hoping that no one at work would notice the smell. They didn’t. Eventually after months I was chatting to my mum she was also having problems and on comparing symptoms she convinced me that I might have a prolapsed womb. So I made an appointment to see a lady Dr at our surgery. She referred me to the local hospital to see an Urologist. My appointment came through for early January 2001. By this time I was in a lot of pain and my periods were becoming heavier and closer together. I was put on pain killers for this. By the time I saw the Urologist I was taking double the dose I should have been on.
The day of my appointment arrived and I was called in to see the specialist, we talked whilst I outlined my problems, he then asked me to lie on the couch while he examined me. He told me that he couldn’t do a thorough examination as there was a blockage, he would like me to be seen by a Gynaecologist to get his opinion. A week later I was back at the hospital being seen by a registrar, he tried to examine me but I bled so much that he was unable to examine me properly; he went off to seek advice from the consultant. It was decided that I should have a colposcopy to examine me under general anaesthetic. I was very nervous about this as I had only ever had operations when I had my children. On the day of my day surgery I was all ready to go down to theatre, I had my pre med when the fire alarms went off. We were assured that we would not be affected by this. Time ticked by, until eventually I was advised that I would be going home without my operation as they had run out of theatre time.
A week later I was back again; there were more of us than there were beds, so we all had to wait until a bed was found for us before we could be operated on. Luckily I was one of the first to be found a bed. This time I wasn’t given the pre med whilst still on the ward and when my time came I was walked down to theatre (that walk seemed to take for ever and my legs were feeling quite weak.) when I came round again after the operation I was very sick. My consultant (DJ calls him god) came to see me, he told me that they had found a tumour. I threw up and he scuttled off to find a nurse promising to come back. (He didn’t). Because I didn’t stop vomiting I was kept in hospital for a couple of days. During this time I was wheeled about to have various tests and chest x-rays. It is not easy keeping still for an x-ray when the vomiting won’t let up. Not surprisingly they got me seen and out of the way pretty quickly. Eventually I was well enough to go home. I think I had been there for 3 days by then.
A couple of weeks later I received a letter telling me to go to the Oncology clinic on Friday 9th March 2001. I had spent two weeks wondering about the biopsy results. But I wasn’t worried as I swear that one of the junior doctors had told me I would have a hysterectomy to remove the tumour. So even if the tumour turned out to be cancerous I would be ok as they were going to remove it. On the appointed day my mother drove me to the hospital. We sat in the waiting room with all the older women in various states of ill health. Many in wheelchairs others wearing scarves to disguise the lack of hair. After a time my name was called and I was shown into a side room with instructions to slip my clothes off from the waist down, lie on the bed with the sheet covering me. After about 10 minutes a very smart older lady entered the room introducing her self to me. I have never forgotten her name (same Christian name as mine). She asked me how I was feeling, I told her that I was in a lot of pain. She dismissed this as being normal as I had just had a very major operation. It very quickly became obvious that she had the wrong notes and thought I was someone else. She went off to find someone. I was left there for an absolute age. Finally a lady called Margaret came to see me.
I can’t at this time remember what she said only that I got dressed and we went into the office next door, my mother was invited to join us. God was there, he began talking about radiotherapy and chemotherapy. I asked if I was going to have a hysterectomy but he replied that my tumour was too big to be operated on. Margaret then took me and my mother upstairs to the Macmillan suite where we were shown into a very nice room, given tea and biscuits. Here Margaret explained about my tumour and the treatment they were proposing. I was to have chemo every Tuesday for a month plus radiotherapy every day for a month. I am glad that I had my mum with me as all that was going around in my mind was….oh no that means I have to take time off work!!
I wasn’t worried about my health or my family…..just that I needed to have a month off work.
On the drive home I rang my husband at work to tell him that I had cancer. He kept repeating ‘is it terminal?’ over and over again. He left work early to meet me at my mum’s house. The first thing he said when he saw me ‘is it terminal’ I wanted to hit him. But I told him that it would only be terminal if he continued to say that as I would be forced to get a knife and stab him. Over the next few weeks there were many tests to be done on my kidneys, chest etc. a template was created using three tiny marks tattooed on to my backside so that the radiotherapy machine could be aligned for each of my treatments. I had to have an MRI scan which was the first time I have ever had a panic attack. I felt rather ill after this. Then came the call from Margaret to arrange a hearing test. They needed to know what my hearing was like so that it could be measured as chemotherapy can cause hearing loss. I explained that I have a hearing loss already and had been wearing a hearing aid for a couple of years. It was then decided that to prevent further hearing loss I would not have chemo, but my radiotherapy would be increased to six weeks. I would also have a dose of internal radiotherapy.
I am going to take a break now as this is becoming very long I shall continue possibly tomorrow.
“Doing” a Doctorate – week 11
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