Showing posts with label owning my cancer part one. Show all posts
Showing posts with label owning my cancer part one. Show all posts

Sunday, 22 February 2009

Owning My Cancer Part Three



It has been a long time coming, I know I promised I wouldn’t take so long before I wrote part three, it just hasn’t been all that easy to put myself into the right frame of mind at a time when I had enough time to do this. Unfortunately I am one of those people who has a need to complete a project quickly. I am not much good at going back to something I started earlier. There are two people who have prompted me to get back to this now. The first, Jade Goody, has been in the news as she makes plans to marry her boyfriend before she dies of cervical cancer. The second is Charlie’s mum. Although DC and Charlie are no longer together they do still have contact.

Apparently Charlie’s mum is finding that her treatment for breast cancer is not going as smoothly as it should. After being told that she would not lose her breast she had a couple of tumours removed but weeks later just prior to Christmas her breast was removed. She is the same age I was 39 when I went through my treatment. Earlier this month she had her first cycle of chemotherapy. There was a problem with this and somehow the chemo leaked inside her as it was being released into her. This has caused damage to her hand resulting in a need for plastic surgery on her hand at a later date. She is such a lovely woman I really wish she didn’t have to go through all this, not that I would wish any form of cancer or the treatment of it on anyone.

Earlier in the week 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.

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 SF asked if I had been shaved I hadn’t.

We fell into a routine where each day SF 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 SF 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 the calories I was piling in. Even now my cancer is still here in my life. I have been cured but I still live with cancer. I still have check ups, I still have hormone treatment, I still have the threat of further cancer hanging over me.

Tuesday, 17 February 2009

Jade Goody

In the last few days there has been much in the news abouts Jade Goody being told that her cancer is terminal, she has only months to live.



I have not followed the ups and downs of her life since leaving Big Brother in whatever year that was. Every now and again I have heard something about her but I can honestly say that she has never been high on my list of must know topics.



I have heard that her diagnosis is bringing cervical cancer to the public notice. Her fight being so much in the public domain could help to save lives by inspiring women to have screening.



Yesterday I had yet another unwelcome telephone call from SF. But he said something to me that hit a chord. He said he had been discussing the publicity around Jade with one of his colleagues. He told his colleague about my battle against Cervical Cancer and the open letter I wrote once I was in remission which was sent to all the parents from the schools my children attended. It was published in a magazine that was circulated around the MOD Agencies in the UK. In the following couple of years I sent this letter to online friends across the world. I would like to share this letter with you now. I know this is not the first time, I am also aware that as my writing style has developed in recent years I would probably have written this letter differently if I was writing it now. But this letter was how I was feeling at the time.



October , 2001

Dear Mothers:

Some of you will know me but many of you won’t. Earlier this year I was diagnosed with cervical cancer. I have just recently been given the all clear, I am now cured. However I wanted to write to you to ask you to do your best to make sure that your children don’t have to go through what my children did.

There has never been any history of cancer in my family I don’t smoke and I am only in my thirties and have never missed a routine smear test. I had no reason to believe that I would get cancer especially not at this age. But I did, I have been very positive all through my treatment and have now come through it with a clean bill of health. When I told my boys that the cancer has all gone away they were all very pleased especially Elliot who announced to everyone within earshot, “I have got my normal mummy back.”

Hearing my son saying this has confirmed what I already knew, it was not only my life that has been put on hold for the last 8 months, but my whole family. We have had a lot of support from a lot of people including the staff at school. Some of you will also be aware that I have made it my aim to make sure that as many women as possible are made aware of just how very important it is that we all keep healthy. It is especially important to check your breasts regularly for lumps and go for regular smear tests. From asking around I have discovered that the general rule at Dr’s surgeries in this area is to call women for a smear test every five years. However the specialists at the hospital are adamant that we should be all tested every three years. If you don’t want to go to your own doctor’s you can get a smear test done at your local pharmacy. Just ask for an appointment although you will have to pay a small fee. It is not important where you go as long as you do get tested at least every five years, but every three years would be better. I know having a smear test is not pleasant, but it is nothing compared to the treatment for cancer.

If you have a smear test that shows abnormal cells you can be treated and like me get better.

For the sake of your children please, please look after yourselves.

Saturday, 14 June 2008

Owning My Cancer Part Two

Some of you may remember when I wrote Owning My Cancer Part One. Over the intervening months I have thought about writing Part Two, I even got as far as starting to write it although I never finished it. A close friend of one of my friends has recently learnt that she has cancerous cells in her cervix. I have offered my support to both my friend and her friend. But this has also reminded me that I didn't finish writing the story of my battle to stay alive.

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. SF was working in The Other City and would start working at 6am. When no one else could do it PB 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 thats what my mum and I told them. SF 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 somthing. 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 nesessary.

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 SF 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 SF 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 SF 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.


I promise you won't have to wait so long for part three