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.

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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.

 

My Decision

My Decision

This morning I read a status on Facebook which reminded me of piece I wrote about 7 years ago following my divorce from “The other parent”. Life has moved on since then and I am now remarried. My sons have all left home and gone to university. The two eldest have graduated and live in London with their girlfriends. Third son has just graduated and will be doing a masters in September and youngest has just completed his first year of Uni.

For me the healing process is still ongoing but I have come a long way in the last 9 years.

MY DECISION It has been a couple of years now and I don’t have any regrets.

Some time ago, I think it was the middle of last summer my mother asked the question.

‘If you had known how hard it was going to be would you still have done it?’

I consider this carefully before replying. I am not sure why as I knew the answer, there was never any doubt in my mind.

‘Yes most definitely, it was the best thing I could have done.’

Indeed it was the only thing I could have done. I had given it my best shot. 19 years of my life I had given to that man. But the day had come when I realised that enough was enough. He couldn’t understand it when I told him I didn’t want to continue living with him. He couldn’t work out what was wrong with me. We had a good marriage didn’t we, we never argued did we? He was right in a way, as until the last few months we had very rarely had a row.

Firstly he was never around to have a row with as he was always either at work, pub or asleep. (the perfect marriage in some ways). Secondly we never rowed because, when he was around he made me feel so useless and weak that I never dared to argue with him and on the occasions when I tried to vent my anger on him he would turn it around to be my fault. Like the many Saturday mornings when he came home from shopping. (I wasn’t allowed to shop I spent too much, whereas he always bought bargains – you know the deals where if you buy this you get that free or the end of date things). We had a freezer full of things we would never use and a fridge full of things that had to be eaten in one day but nothing for the rest of the week.

He often came in with a mood on, this would make me grumpy, (no one likes to be moaned at for no reason). Because I was now grumpy he would complain about my mood and stomp off to the pub.

During all these years he would tell me that I was ‘fat, ugly, useless with a brain like a sieve’

Now after so many years of being told this it becomes hard to believe otherwise.

I believe that if you get married you should try to make the marriage work. I was not going to give up easily. I had to try to make it work. Besides I had nowhere to go and 4 children to consider. Because I had done such a good job of trying to make our marriage work he had no idea that it wasn’t working. The end of our marriage came as a big shock to him. For me it never really was a marriage. I had never been in love with him. We had never courted as such, just fell into a relationship as when we met we were both getting over broken hearts and needed someone to turn to. If I hadn’t got pregnant the marriage would never have happened.

Now, though we are divorced and I have never been happier. Financially we were never really solvent as a couple. Does anyone know a solvent alcoholic? But we did have two wages coming in, his full time wage and my part time wage (part time!! I worked longer hours than he did for half the money). Now it is just me and the boys, I am the only one bringing any money into the home. It has been a struggle and there are days when we have to keep our coats on because it’s too darn cold and I don’t have any spare cash to buy gas. (Yes I have had to get a key meter for both the gas and electricity). There are days when we have just 2 slices of bread and no milk. But we manage, I have not killed any of them off yet.

Are we better off now? Financially no we are worse off but I can see the light at the end of the tunnel, it isn’t going to be like this forever and now that I have a full time job that I enjoy things can only get better. However we as a family unit are much happier. Gone are the days of dreading the door opening, wondering if he is in one of his soppy drunk moods or in a nasty bad tempered mood that has everyone either cowering behind a cushion or hiding away in the bedrooms. Gone are the days where everyone had to be silent or risk his bellow of ‘Stop that noise’ or ‘be quiet’ In the past two years there has very rarely been a cross word spoke between any of the five of us. It took me a few months to realise that he was never going to be here again chastising me for staying up late or reading when I should be doing something else. I can have friends here if I choose. (visitors were forbidden when he was here).

Our house rings with the sound of music (not always to my taste, teenagers!!) and laughter where before there was only silence broken by shouts of ‘silence’. There is an air of confidence about us all that was not there before. I have learnt that I am worth so much more than I ever knew. I am happy, I laugh, I joke, I feel sexy, I feel worthy, I have finally come to love the person I am.

Confidence

During the week we had our Christmas get together for the writer’s group that I belong to. Whilst there, one of the other members was telling a new member that I am very self-effacing, unnecessarily so. I was quite surprised by this, but I shouldn’t have been. I do tend to keep quiet during our meetings, not offering many comments on the work of others. Timid about reading out my own work. Partly this is due to being eternally shy.

Today I was having a chat online with someone about life in an abusive relationship. She commented that these relationships knock your confidence and it can take years to get that back.

My first marriage was not violent in any way, shape or form. Yet the emotional abuse that I lived with for so many years took away all my confidence. Years of public put downs and insults take their toll. Being told frequently if not daily that I am.

“Fat, stupid, ugly with a brain like a sieve, nobody else would ever have you.”

Did nothing for my confidence other than to batter it down time and time again.

When I began divorce proceedings he began repeating the popular children’s nursery rhyme.

“Sticks and stones may break my bones, but words will never hurt me.”

Well actually, when said often enough words may not just hurt but they can cause lasting damage.

After my marriage ended I went off the rails a bit, a friend of mine told me I was running around like a headless chicken. I began blogging and dating. I can see now that both were confidence tools. I needed to know that I was desirable, and worthy of friendship. I gained enormous validation through my blog and the friends I made there. Through my dating experiences I learnt that not only am I good enough for the men I was dating, but some of them were not good enough for me.

Gradually I learnt to like myself as a person. My confidence began to build. I started a new job, I have been there for seven and a half years now. They tell me that I have grown so much since I first started there. (I know they don’t mean in weight, although that increased over the years I have been there).

One thing I have tried to keep through out everything has been my sense of humour. For a long time after my divorce I would make jokes about myself. I would get told off for putting myself down, but that wasn’t what I was doing. I was showing that I don’t take myself seriously, that I can laugh at myself not just others. Maybe though there was a touch of laughing at myself before others get the chance.

All my life I have been shy, introverted. I do have my moments of bravery. On occasions when I feel confident that I know what I am talking about, then I can come out of my shell.

As for being self-effacing, I believe that is just a matter of confidence. I say very little at our writing group because I am so in awe of the talent I am surrounded by. Maybe in time some of the knowledge and skill will rub off on me too.

Coercive Control

Eight years ago I was going through the process of divorcing my then husband. I divorced him on the grounds of unreasonable behaviour. I had spent many years subjected to his emotional abuse. I was lucky that on the number of occasions that I had to call the police to the house or I went to the station to report a particularly nasty incident. The police were very understanding and didn’t just dismiss my complaints against my husband. Even after our divorce, when he was no longer living at the marital home (by court order) he was still subjecting me to harassment.

I am glad to say that he no longer behaves that way towards me. I don’t have much contact with him, for which I am glad, but when we do speak on the phone it is usually very civil. He is in contact with our sons which is as it should be. They are young adults themselves now, they don’t need me to make arrangements for them.

In recent days there have been reports in the news that The Home Secretary is about to announce new powers against non violent abuse. In theory I can only say that this is a good thing. However I have mixed feelings about all this.

I guess I should be jumping for joy that now (or at least soon) it won’t just be the people who use their fists to control their partner but also those who employ mental abuse, who can be convicted for their actions. Don’t get me wrong I am really pleased that mental abuse is being recognised as damaging to those subjected to it. You no longer have to wait for the abuse to turn physical, you don’t need to have bruises as evidence of suffering.

I know that those in authority want victims of this kind of abuse to come forward. Nobody should suffer the way so many do. I have been hearing and reading that this could lead to abusers receiving up to 14 years in prison. This is what worries me. I wonder to myself, will this encourage victims of abuse to come forward? I am not so sure that it will.

My own feelings about this are that when I was going through the misery caused by my then husband, I wanted him to stop, I wanted to escape from the whole situation. What I didn’t want was for the father of my sons to be put away in prison. I wanted a better life for myself and our children. I wanted peace, safety and my sanity back. That didn’t mean that I wanted my husband behind bars, I just wanted him to leave me alone.

Today I had time to think about all this and I asked myself the question. If at the time of our divorce, the police had had the powers that reports state will be vested on them in the next few months, would I have wanted my husband to be convicted of Coercive Control? I am not sure I can answer that. I was in a very desperate state and needed things to change. If that had been the only way to escape, to give my children a more peaceful life. Maybe. Maybe not. I was already depriving him of our home and our children. Would these new laws have encouraged me to report the abuse, I don’t think so.

We already have laws regarding physical abuse but that doesn’t mean that every victim of physical abuse will report it. Why would this be any different? What we want is protection from our partners, we want to stop looking over our shoulder, waiting for the next punch, insult, controlling device. We don’t always want our abuser locked away. Our children deprived of their other parent.

I do want the victims/survivors of emotional abuse to be given the same protection by the law as those who suffer physical abuse. I just don’t think that the promise of a jail sentence is an incentive to persuade sufferers to report their abuse.

Where did my dad go?

On our recent visit to London to see Statto and Miss Effervecence, I was standing on the pavement with Skater, whilst our host and hostess made a few purchases from a store near to the station.  We were chatting about this and that when the peace was broken. Inside the shop a man was being abusive to a member of staff. His stream of abuse was uncalled for and a security man did his best to usher the man out onto the street. It didn’t take long for this man to return to the store only to be ejected once again. At this point a couple of obviously homeless people were passing and the woman persuaded the ejected man to follow them. Her partner was busy picking up dog ends from the pavement. (This action amazed Skater more than the abusive guy).

A few moments later Statto and Miss Effervecence emerged with their shopping. To my amazement Statto asked.

‘Where did my dad go?’

Now I know exactly what he was really saying. His dad was not in London at the time (as far as I am aware). However the abusive guy who was obviously drunk was behaving in a way that Statto had witnessed from his own father many times over the years. I had also recognised the paranoid behaviour of the drunk, believing that they were being insulted when they weren’t. It reminded me of one particular summer evening years ago.

I had dutifully collected my drunken husband from the local pub, bundled him into our car and driven him home. Our house was not situated directly beside a road, we had a public footpath to negotiate before reaching our own garden path. The public footpath ran along the side of my friends’ back garden. It was a hot summer evening and our friends were sat in their garden with other friends having a laugh. Considering that the garden in which this group of friends were enjoying their evening together, has a 6′ brick wall around it, they would not have been aware that we were passing by.

However on hearing laughter my husband in his drunken state believed that they were laughing at him. This led to his agitation, causing a string of curses and threats to beat up anyone who was laughing at him. Now I know for a fact that his presence had gone unnoticed by the group within the walled garden. Although I am sure that had they seen the way my husband was stumbling all over the place including falling into the rose bush at the side of their driveway, then they would certainly have laughed.

In his drunken state my husband was convinced that he was being insulted and was determined to punch anyone who was insulting him. No amount of cajoling could convince him that nobody was either laughing at him or wanting to fight him.

I have noticed over the years that it is not unusual for someone under the influence of drink to imagine that someone has insulted them. Now that I am aware of my current husband’s drink problem, I can see that this has been part of the problem when he has imagined insults by family and others, where no insult was intended.

Drink has a lot to answer to.

I am just grateful that my four sons have all grown up to be, not tea total, but moderate drinkers. They all enjoy a drink from time to time but none of them are heavy drinkers.

 

 

Life in a mirror

Recently I did something that I couldn’t believe I was doing. It was a Wednesday evening and I had just arrived at a meeting of the Writers Circle that I now belong to. The meeting hadn’t yet begun, the last few stragglers were taking their seats. It was announced that due to personal reasons our Treasurer was resigning after 15 years. A request was made for a volunteer to take up the mantle.

That was when I heard it. It was my voice, and the words, not unfamiliar, were not what I expected to hear coming from my own mouth.

‘If nobody else wants to do it I will.’

It didn’t make me feel good, I had misgivings about this. Although I had done it before, twenty years ago I was the treasurer of our local Playgroup. I was worried about having other people’s cash in the house whilst we were struggling financially ourselves. Over the last couple of weeks since we sold our car, our own situation has become more relaxed. I began to feel better about my new role.

This weekend I called round to visit my predecessor for the handover of all the Treasurer’s paraphernalia. We chatted for several hours. We didn’t spend much time discussing the Writing group. Instead we talked about our own lives.

I had never imagined that I would meet another person whose life was such a mirror of my own life. She has lived my past, she has lived my current life. She is living my future.

It is strange but the revelations that came about through our conversation are both scary and at the same time comforting.