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.


Fire Byrd said...

MY God, I had no idea that your treatment had been so drastic.
Must make you cross when you hear daft people saying they'd rather not have any treatment... life is so precious, we get that don't we!!
It seems such a no brainer... life or death.
And the spectre of cancere is always lurking in the background isn't it.
Huge hugs

Mei Del said...

you're a true survivor lady, but i nearly stopped reading when you mentioned that celeb name at the top - which is my reaction these days as it always has been.

Trixie said...

I'd want to batter that colleague of yours for saying that! How SELFISH! I bet she doesn't have any kids.

Mel said...

It's hard to understand the choices some folks make, huh? I struggle to wrap my head around it sometimes, myself.
I just figure it's a life choice for each of us to make. And frankly, there was a time when I told the oncologist that I was done with treatments, done with chemo cocktails and done with all the 'ick' that came with the diagnosis.
And really, I was at peace with the decision when I made it. I wasn't angry -- just filled with an overwhelming sense of peace about letting it BE where it was.

Now--circumstances and people got tossed in my path to disturb that peace.....and the decision was changed.
But I really think that being able to decide and be at peace with the decision was something that was suppose to happen.....yaknow?
Probably not. LOL But I know!

And nope, cancer doesn't vacate the premises even with remission or earning a 'cured' status. It's always in the house.......for me, it's just a piece of my existance--not the whole deal.

(((((((((((( LiR))))))))))))

Geeze you had to walk in some very hard places....I'm proud for the you you are today, yaknow?

nitebyrd said...

As Fire Byrd said, your treatment was drastic. Your story is definitely a good reason for regular checks.

I'm experiencing the same thing with my daughter, she's cured of cancer, but still living with it. Actually, anyone who is close to or loves a survivor, does.

Anonymous said...