Another year under my belt :-)

Today was my annual check up at the oncology clinic. In September it will be 8years since I was told my cancer had gone.



Today's appointment was a bit of an adventure compared to previous times. A month ago the clinic had moved from the old inner city hospital I was familiar with to the new impoved 'Super Hospital'. I have been to this hospital many times, but in the last few years it has under gone major changes. Many departments have transferred to the new hospital.



I gave myself plenty of extra time to get parked and find my way to the new clinic. The main entrance has moved, which although I was expecting it was still a suprise. Entering the building at the north west corner on level C I found a desk where there were maps and a nice lady giving directions. Along the corridor were people in pink t-shirts emblazoned with 'hospital guide'. I made my way to the far end of the corridor to the lifts going down to level B.



It seems like a strange decision that the oncology clinic shares the waiting room and reception desk with haematology clinic. I had only just opened my book when an older lady sat beside me. She was keen to chat, it seemed we both had the same appointment time with the same Dr. It wasn't long before the two of us and another lady were led away to a sub waiting area. we continued to chat, mostly about her daughter and son in law. They live in Essex not far from where I was born. We talked about places where my grandparents had lived, her daughter has lived in the same area for years. Then she told me about her son in law, he is very like my ex, she couldn't believe the similarities between them. We had quite a good chat before she was called away and I settled to reading my book. Eventually my turn came.



I had quite a good chat with the registrar, probably the most frank discussion I have had with a Dr. She then examined me assisted by the nurse. She agreed that my cervix has been greatly affected by my treatment leaving it both tight and short. Due to my concerns that my efforts to lose weight have not been successful and eating just the smallest amount leaves me feeling bloated I am being given a CT scan, mainly for my peace of mind but also because it hs been 8 years since my last scan. We both agreed that it is probably my body adjusting to my diabetes that is causing the bloated feeling.



I am also being referred back to my consultant (who DJ calls 'god') for a discussion about the possibilities of reconstruction surgery. Unfortunately it has been too long for my mechanical problems to be reversed easily by other methods. I am not sure if I would go as far as surgery for this but I feel I should investigate all avenues if I am to have a successful sexual future. One of the reasons I feel there is little future for me with Plumber.



Whilst the Registrar was completing the scan request form I found that for the first time I could see written in black and white (more than once) the dimensions of the tumour they found 8 1/2 years ago. At the time I was told only that it was the size of an orange (which didn't really tell me much). But now I know that it was 8cm x 7cm x 7cm and extended from my cervix into my womb. No wonder they were concerned that I might later develop cancer of the womb.

Although I go back in 3 months for the scan results today's appointment was good.

Owning My Cancer Part Three

Part One Part Two

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.

Life after Cancer

Life after Cancer

Tomorrow I have an appointment at the hospital. It will be my yearly check up, hopefully I will continue to be told that everything is fine and I can now be signed off their care list. For those of you who don’t know the history of this I was diagnosed with cervical cancer on 9th March 2001. That day and that date are indelibly etched on my memory. It’s odd how I can remember the date I was told I had cancer but the date I was told I had the all clear is somewhat hazy. I remember it was late September 2001 I had an appointment in October for the results of the most recent tests but it was brought forward.

So it is almost 6 ½ years since I was told that my cancer had all gone and my body is now clear of all traces of cancerous cells. Great that must mean the end of my cancer. But no, that was just the start of it all. My daily trips to the hospital for radiotherapy had long ago ended. My three days of isolation in the contamination ward unable to move, being sick at regular intervals, all that was over. The invasive exploratory operations to see what was going on inside my body had ceased. I was clear. I could get on with my life without cancer, couldn’t I? It took a few months for my body to recover my strength sufficiently to start getting back to some semblance of normality.

My body continued to suffer the effects of my treatment. The radiotherapy had been so close to both my bladder and bowel that I had side effects in that my control over, both these organs were severely hampered. For a few months I had such little confidence in my body behaving that I rarely left the house. On those occasions when I did I had to be certain that I knew where the nearest convenience (rest room) was. I had to continue the diet I had been on during my treatment which meant very little roughage. I missed my fruit and vegetables, wholemeal bread, anything with fibre in it. I only had to eat an apple and I would go running to the bathroom. My kids took to saying


‘mummy only runs when she needs the toilet’.

No matter where I go or how long I am gone the very first thing I do when I get to my destination is rush to the bathroom, all my family are used to that now. Gradually over the last few years this situation has improved but I do still have some problems. I don’t have time to decide to hold on until later, when I need to go I need to do so very soon, its like being a toddler again (not that I remember being a toddler myself).

When I took the last of the many tablets I was on during my treatment I thought that would be the end of the drugs. It wasn’t. Now it’s the hormone replacement drugs to prevent the lining of my womb from growing. I need this to reduce the chance of getting cancer of the womb. When I first learnt that I had a tumour I believed that I would have a hysterectomy the cancer would be removed along with my womb. Apparently my tumour was too large, too advanced for surgery, hence the 6 weeks of daily radiotherapy followed by 3 days of continuous internal radiotherapy. (3 radioactive rods inserted into my cervix for 3 days). I wouldn’t recommend anyone try this unless they have to. So I started having 3 monthly appointments at the menopause clinic (I was 38) so that I could have oestrogen and testosterone implants. Then finally I began a course of progesterone tablets. The menopause symptoms like hot flushes were short lived once I started the HRT.


So here I am in my mid forties, knowing that I never have to go through the awful pain I had endured since my mid teens every time I menstruated (I can’t say monthly as I was not regular it could be 2 weeks or several months between menstruation, it always caught me by surprise).I also know that I have been through a sort of menopause, I have had my hot flushes etc. I no longer have a working womb, although I had been sterilised when I was 33 at the time of my third caesarean section when my fourth son was born, so that didn’t make any real difference to me.

Initially when I was given the all clear I was to continue with a series of hospital checkups which would be every three months for a couple of years then it became every four months then 6 months. By the time 5 years were approaching I was convinced I would be discharged from care of the hospital. But no they wanted to keep me under their care for a little longer, at least by this time it had become yearly checks.

So my cancer was removed from my body more than 6 ½ years ago but I still have the hormone treatment, the bowel and bladder problems and the check ups. To anyone on the outside the cancer is forgotten but for me it is ever present in my life, as is the threat of a recurrence of this all too often devastating disease.

Perhaps tomorrow I will get an early birthday present and be discharged by the hospital. One more link with my illness cut from my life.








UPDATE

after waiting for an hour in the Oncology clinic it was my turn. a very quick eamination and I was told everything looks good and I should come back in 12 months time. So I know exactly where I shall be at 10am on tuesday 10th March 2009