Owning my cancer -part three

Ages ago now, I emailed all my female colleagues the open letter I had written back in October 2001. This resulted in a discussion between myself and my colleague, who was very forceful in stating that some people just don’t like Drs and should be left alone, she says that if she suspected that she had cancer she would rather not be treated but be left alone to die. I happen to disagree, we all have at times to do things we don’t like. I don’t like needles in any way shape or form but I put up with them because I have to. As I have said before cancer affects not just the patient but all the family. I can not even begin to contemplate what life would have been like for my four boys if I had not had treatment for my cancer.

Talking of treatment that is what I want to talk about this time. On looking back now I guess when I was told I had cancer and would need chemotherapy every week and radiotherapy daily I thought it would be simple. I would lead a fairly normal life except that I would go to the hospital every day for 5 minutes of radiotherapy. But on Tuesdays I would be there for hours for the chemo treatment which I did realise would make me feel ill. But I could cope with feeling ill once a week for a month if it was going to get rid of this growth.

What I hadn’t expected was the weeks of tests before my treatment could be started. There were chest x-rays, nuclear x-rays to test my kidneys, MRI scans to check for cancerous cells in other parts of my body most importantly to make sure my lymph glands were clear. There was the measuring to make a personalised stencil for the radiotherapy machine. Three tattoos to mark the spot so that the stencil could be lined up accurately for each treatment. All the time I felt as though I was fading away I was becoming weaker and paler by the day, the pain was increasing, but I was not going to let this get the better of me.

Eventually and it did feel as though it had been a life time although in reality only a couple of weeks, my treatment was to begin. I think I even felt a little excitement mixed in with the anxiety. This was after all the start of getting better. I had always been a fairly patient person (laid back) but these weeks were when I really learnt to be a patient patient. There were two radiotherapy machines in use in the clinic, often one or both would break down causing a backlog of patients to be treated. It became more the norm than not to have to sit for two hours waiting for my turn. But going back again to that first treatment day. Having waited an hour or more among the other people who were very ill some terminal I was called into a cubicle. Here I was given a leaflet listing the foods I wouldn’t be able to eat during the weeks of my treatment. I hadn’t been prepared for this. Because my tumour was situated so close to my bladder and bowels I would need to be careful not to eat any foodstuffs that consisted of fibre. That meant a blanket veto on fruit or vegetables, brown bread, potato skins, baked beans and very many more. There were times it was difficult to find much that I could eat. It seemed that any food deemed to be healthy would be unhealthy for me. So I began a diet of stodge, eating lots of pastries and pies, things I would normally try to avoid. Now in 2019 I am still not able to eat much food that contains fibre. I can only eat small amounts of fruit and vegetables. I love nuts but have t be careful how much and when I eat them.

But it wasn’t just the food issue, there were other rules too. No hot showers or baths, no bubbles in my bath, nothing on my skin that could react. I had to learn to have daily luke warm baths of plain water using only the minimum of things like shampoo. It was during these baths that I made the awful discovery. Because I wasn’t having chemo I wasn’t in danger of my hair falling out of my head, I wasn’t about to go bald. But to my horror I was finding that with no bubbles in my bath I could find hair floating in the water. As the weeks passed this was becoming more and more irksome, I couldn’t understand it but put it down to being normal but I wouldn’t normally notice, it was only because the water was clear. But then one day I realised why I was finding hair. My pubic hair was falling out, so much so that on one occasion my husband asked if I had been shaved, I hadn’t.

We fell into a routine where each day my husband would head off to work early, then return mid morning to take me to the hospital on alternate days. My mum did the other days, we worked it out so that one week my husband did three days and mum two then the following week they swapped. Both had incredibly understanding bosses who allowed them the time to do this for me. Each Friday my appointment was earlier so that I could attend clinic afterwards to check my progress. More opportunity to practice being patient. There were blood tests and more x-rays. I was still weak but the pain had begun to ease. I was very anaemic and required a blood transfusion the day before my 39th birthday. I did suggest they choose the blood of someone who had been partaking of gin or vodka.

Weeks passed and I knew I was beginning to feel better. My six weeks of daily treatment were coming to an end and my consultant told me that they wanted me to have a few weeks break then I would be admitted for a few days while I was given a dose of internal radiation treatment. I wanted them to forget giving me a break and just get on with it, lets get this out of the way. They wouldn’t do this, my body had taken a real battering even if I didn’t realise it. My body needed time to get stronger before the next stage of my treatment. It wasn’t long before I realised the wisdom of this.

Even now I don’t understand this but my treatment had made me so sore down below that each time I passed water it burnt so badly as though I had an open wound. One of the worst experiences there are. Then weeks later I was admitted onto one of the oncology wards. I had a single ground floor room with a tree outside my window. My room was very basic but I did have a tv although as I was to discover the remote didn’t work which meant every time I wanted to watch something I had to get a member of staff to do this for me as I was near enough immobile on my bed. The next three days were possibly the worst of my life. I was taken into theatre where three nuclear rods were inserted into my vagina whilst I was under general anaesthetic. With these rods inside me I couldn’t move much as their presence caused me a great deal of pain. For the duration of this treatment I was effectively radioactive. Visitors were at a minimum and those who could come in had to stand behind a large lead screen so I could just about see their head above it for the allotted 5 minutes. My boys were not allowed on the ward. Staff could only be in my room for a maximum of 10 minutes during any one shift. The constant sickness caused by the anaesthetic didn’t help this situation.

Finally the prescribed time came to an end and on the third evening I was given morphine so that I would be better able to cope with the pain as the rods and the accompanying packing materials were removed. What a relief that was to be able to turn over and sleep on my side. Next day I was told I would be able to go home providing the sickness had stopped. It had diminished but not cleared up completely but I managed to hide it from the staff so that I could be discharged.

That was the end of my treatment but not the end of the agony for me. Our life was still in limbo as we waited for more tests, more scans, another operation to examine my cervix to determine if all the cancer cells had been eradicated. Finally after months I was given the all clear on 19th September 2001. I thought this would mean that my life would no longer be affected by my cancer. I was wrong. The cancer itself was gone but now there were the Dr’s appointments, hysterectomy clinic appointments, hormone implants 3 monthly check ups at the hospital. I still couldn’t get back to a healthy diet. I couldn’t go anywhere without knowing where the nearest toilet was and that I could get to it quickly and easily. Before I could go anywhere I needed to take precautions which often left me doubled up with constipation. I was left with very little control over my body functions, when I needed to go I needed to be quick. But gradually over the months it did begin to improve. I still find that eating fruit can be unwise but I am no longer afraid of it.

The weight I had lost at the start of my treatment soon piled back as I continued my non fibre diet but lacked the energy to do much so didn’t burn off. Now all these years later I still have bladder and bowel problems. The cancer has not returned for which I am grateful. It took six years before I was officially signed off from hospital checks. There have been a couple of occasions when I have been ill and had to under go tests to make sure it wasn’t cancer back again. 

I am fully aware that I was very lucky to get the treatment I did when I did. My tumour (which at the time was described as being the size of an orange) I later learnt was 7cm x 8cm x 7cm. No wonder I was in pain. Others were not so lucky. If I had been given a smear test sooner maybe I wouldn’t have had such invasive treatment. Please please be vigilant and get any changes in your body checked out.

Owning my cancer -part two

I don’t remember whether we made a joint decision not to tell the boys that it was Cancer or if we just didn’t tell them. We told other people though, I needed to tell people. I needed people to know that I would need help with school runs, lifts to football those sort of things. To me, it felt necessary to explain to people what was wrong with me as I didn’t feel that I appeared to be ill. There were no outward signs, no wounds that people could see, it felt like an invisible illness. I didn’t want anyone thinking that I was being lazy not taking my children to school etc. Especially as my children did not attend one of the schools nearby. There were not many other pupils going to their schools who lived near to us. I drew up rotas for the school run. My husband was working in Southampton and would start working at 6am. When no one else could do it my neighbour would bring them home for me even though her own son attended another school. (During this time she moved him to the same junior school, later when I was well again I took her son and mine to school on the way to work and she picked them all up on the way home as she started and finished work earlier than I did).

I think in the beginning all we told the boys was that mummy had something wrong with her tummy. OK that’s what my mum and I told them. Their Dad told them that…….’mummy is going to die’. I can’t even begin to understand how that made them feel. Aged 13 the eldest of the four I relied on DC to help me by being here for the younger boys when I needed to sleep, or go to the shop for me when we needed something. He had other ideas, (I thought at the time that he was being a selfish teenager, but I later learnt from some of his friends that he was really worried about me and his way of coping was to avoid me as much as he could). Friends did that too. One of the things that I didn’t expect was that the people I thought would be supportive would avoid me, but other people who I didn’t know so well were really supportive.

It is at times like this that the differences in my children becomes more obvious. DC avoided me, OJ aged 10 became my number one carer, not just caring for me, making sure I was comfortable seeing if I needed anything to eat (even learning how to make me a cup of tea) but looking out for ET and JA too. ET would look at me as though I had grown a second head, I was a stranger a monster as far as he could see, he had just turned 9. But my baby JA had just started school and was struggling with that, it wasn’t fair on him to have a poorly mummy who might die. He would just say things like mummy has a ‘poorly tummy’ then go and head butt my tummy. He was too young to realise what was going on. He just wanted his mummy to be like other mummies. I told all the schools so that they were aware of what was happening so they could support the boys if it was necessary.

Something else I hadn’t expected was how it made me feel being told that I had Cancer. Until that time I had been in a lot of pain and was very embarrassed that I was often leaking from my bladder like an old woman, but apart from that I didn’t feel ill. There was nothing wrong with me that couldn’t easily be put right. But within a day or so of being told that it was Cancer I found that I went right off food, even my favourite foods I couldn’t stomach. I became very weak, I would fall asleep at the drop of a hat, one minute I was wide awake the next completely drained and asleep, it didn’t matter where I was. I don’t know it that was a physical symptom or purely psychological. It was this weakness and lack of appetite that alarmed my husband the most. Resulting in him having to get sleeping tablets to help him sleep as he was so worried about me. I always had this feeling that he wasn’t so much worried about losing me because he loved me but because he suddenly found out how much I actually did for him and the boys………’how will I cope with four children on my own’ became like a mantra for him.

I spent a lot of time with my mum, I know it was very hard for her, she hated seeing how ill I was and the worry that her beloved daughter might die was very tough for her. There were times when she had to just walk out because she wanted to cry but didn’t want me to see her cry. There were also times when she wanted to smack my husband for thinking about himself more than me or the boys. It was as if me having Cancer was to make life hard for him. Both my husband and my mum carried on working but took it in turns to take a few hours off to take me to the hospital for my treatment. Collecting me at around 11.30am to get me to hospital for my daily appointment with the radiography department. Finally getting me home again by about 2.30 -3pm and back to work while I waited for the boys to be brought home.


Owning my cancer part one

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.