Pushing Too hard

Oh awful afternoon. I should have had the pain pills earlier. Damn. Two weeks since the operation, I want to be over this.

Ahhhh Coffee

Thoughts of coffee were in my mind as I woke. That's me getting back to normal. I like dark roast coffee made in my stainless steel espresso pot. I like the slight bitter taste of dark roast but have a little milk to smooth out the edges. I've not felt like coffee for weeks and now the desire for it is most welcome. I once, ages ago, wrote a poem about coffee. You may think it an awful, amateurish poem, while I don't care, I promise not to impose further poems on you.
This doesn't have a name, perhaps
"An Ode To Coffee" (laughing here) that too is progress.

Aromatic coffee bubbling
Its fine seductive scent into the air.
Wake up and smell the coffee.
Coffee is as coffee does.
Dark roast, ground fine.
I used to grind my own
but the noise was so jarring
in the morning,
before I'd had my coffee.
When the eruption is almost spent,
open the lid.
The dark rich liquid oozes thick and syrupy.
As the last escapes from the lower chamber
The shiny little dragon hisses
and demands to be poured.


I feel good today, it is warm and feels like spring. I've had no pain pills and my head is clear.

I Survived My First Sunny Day

It was a warm day with a touch of spring in the air and I had chosen to wear a blood red velvet top. It was part of a personal ritual, I think, my coming out of a period of being cloistered. There were masses of family and friends at a party all expressing their concern regarding my illness and wishing me well for a speedy recovery. I think that possibly sounds like many people's idea of a great day out after a crisis such as I have experienced. I was dreading it. Yesterday one of my daughters had a baby shower/ house warming party, with about 50 guests. Luckily I was not the centre of attention and to my surprise not a single person made a stupid upsetting comment.
It was an important step, dismantling the barriers which I had imposed on my friends and family, keeping most of them at a distance, so that I was not forced to deal with their emotions while I was trying to deal with my own. As I looked around at the group of guests, I thought about the different emotional backgrounds they carry with them and what that means as they approach someone, like me, who has an illness that threatens life. Several of the people had lost their own mothers at a fairly early age, I am aware that others have fears for their own health. Still others have survived illness or accident. Most of my family approached me with care and support , most asking the same questions about how I felt and when the next phase of treatment would start, all amazed at how well I looked so soon after the operation. My 80 year old dad, however, sat beside me and asked in conspiratorial tones how I felt when I woke in recovery. Something no one else had asked. I was surprised but amused and said "oh awful" then with a slight undercurrent of humour we swapped operation stories.
The day was exhausting, sitting for too long. I left early and was escorted home to rest. I lay in bed and thought about a book I had read many years ago “Man’s Search for Meaning” by Psychiatrist and holocaust survivor Viktor Frankl . The link below gives a fairly good description of the work. The book impressed me at the time and I recall bits of it mostly with Frankl's determination from the outset that he would survive the concentration camp where he was imprisoned and later his observations and analyses on why certain people survived and others did not. He was able to recognise the survivors quite early on, they had certain characteristics in common. I will get the book again, and reread it.
http://www.paulstips.com/brainbox/pt/home.nsf/link/18052006-Find-something-to-live-for

In the darkness, I only feel the light.

If you think the title means I've found religion, you are mistaken. These are words taken from a song "Everytime," an electronica/dance number by Lustral. http://es.youtube.com/watch?v=GFGyubpbsRg (This is the only clip I could find on You Tube that has the words. The video clip of someone elses Ibiza holiday is irrelevant here.) An Mp3 of the song was sent to me by a friend when I found out about my diagnosis. I was listening to it today and thought about the words, "In the darkness, I only feel the light". So I thought that I would list a few positive elements associated with getting cancer and being forced to spend time recuperating.

I remember my sister saying during her honours year at uni, that if she got cancer she wouldn't have to finish her thesis and everyone would say how brave she was to even think about it. It was just a flippant way of expressing her tiredness and frustration with finishing the thesis. But I have been pondering the issue of how illness can become an escape hatch from the previously inescapable pressures of life. A situation could easily be created where a person could crawl inside their illness and find comfort, not in attention, but rather in the mental solidude.
I am not used to long periods of uninterrupted free time, no matter what I try and do, there are usually people phoning me every 15 -20 mins, day and evening. I woke this morning, put my arms out of the covers and thought, I should get up. It was cold and I pulled myself back inside the thick warm duvet. I had still not got used to the idea that I didn't have to get up. I could lay in bed all day if I chose to. Not only could I choose to sleep or read or write or watch dvds, but it was in fact what I must do, for at least part of the day, in working towards my recovery. I think it is the first time in many many years that I have been expected to stop working and rest. This imposed respite from activity and the pressures of business and family seems part of my destiny now that it is upon me, it was always there in my future waiting, as was this illness.
Ok, so there are not many positives, that's pretty much it, except that, and when I start chemo, I may retract this next as a positive, but right now, I am pleased that I have lost 4.5 kilos without trying.
Sorting through these ideas as I write, I think I am saying that when I recover, I will try to keep some of what I have gained, the space for me, the perspective on what things are important and what things I really do not need to become entagled in.

Feeling Fragile

Not a good day. Just realized I am not super woman and it is still going to take weeks and weeks to heal. Not much to say, it has been raining off and on and it is really very cold. If this was fiction I would think that the correlation between the bleak weather and my mood was a tiny bit contrived. However, I would not want a bright sunny day outside, it would not make me feel cheerful, it would make me feel out of kilter with the world. So the cosmos has conspired to provide me with a day that is in keeping with my emotional state.

Slam !

Going home today! Feeling pretty good, not a lot of pain, just this damn wound drain left to be taken out. It is an annoying thing. It is a thin plastic tube inserted through a small hole in my side, there is about 2 foot of tube that has a plastic oval bulb, a bit bigger than a tennis ball, attached to the end. There is a little cap on the top of the bulb that can be opened to empty the contents. The bulb is then squeezed to expel the air, the cap is replaced and a gentle suction is created to draw fluid from the wound site. As the bulb fills it becomes too heavy to allow it to hang down, so it has to be held by the tube with the bulb attached looking like a bizarre little blood filled bauble.
The surgeon came for his final visit and gave the order for the drain to be removed. I got on the bed and wait for the registered nurse to unpack the sterile dressing kit. I have had surgical drains removed before, they are only mildly uncomfortable. The drain is stitched in, she deftly cut the stitch, says now take some deep breaths, which I do, them Slam! I hear myself I scream so loud, that in that split second I wonder how far away they can hear me. I feel the approx one foot of tubing which has been threaded into my abdominal cavity being yanked out in one go. I gasp for breath. It happened in both a mere few seconds and in slow motion so that I felt the tube move through every inch of its journey. I hear myself say that I am going to pass out, and the nurse saying keep breathing deeply. It's then that I realize, that she too is surprised that there was so much drainage tube left inside me. I try to breath and relax my gut but the pain and the shock are overwhelming. Then for the first time since all this began I started crying, really crying. I sobbed for the next half hour.
She gave me pain killers and finished dressing the wounds while I cried.
She wheeled me in a wheelchair downstairs to the car park. It was a rainy, grey, miserable day and I got in the car still crying.

Is This The Life I Signed up for?

When I woke this morning, in the moment just before I opened my eyes, I had in my mind a picture of my surroundings. My bedside table with clock, lip gloss and a pile of books and beyond that my block out curtains, which make my room very dark. In my room, in my house.
I opened my eyes to see beige walls and beige curtains surrounding the steel framed bed on which I was lying. The operation was over. The surgeon had said he had got all the cancer. I would still need chemo. These words keep going around in my head but at that moment I wondered what they had to do with me. Can this really be my life? My complicated but comfortable life where nothing really bad happens. Today it all has a surreal feeling as if I am an invisible observer watching these events happening to someone who feels like me. I don't feel sad or lonely, I don't feel anything much and I wonder what happened to the stages of grieving that I was supposed to experience. Or is that only if you think you are going to die. I don't understand why I have been fairly calm about this from the start. Maybe I am stuck in the denial stage, maybe I am going to start falling apart and yelling at everyone. Nah I don't have the energy. Hardly any pain today, I'm thinking things are going too smoothly, except I'm very tired.

Pain and Trauma

It is my third day post op. When I woke in recovery, it was as I expected, painful. I had a drip, catheter, wound drain, oxygen and was hooked up to a heart monitor. I am not sure if it was because of my meditation on pain in advance of the operation, or because I had decided to flow with the pain instead of fighting it, but it was not unbearable. Of course the patient controlled morphine drip helped. However the drugs didn't actually eliminate the pain just dulled it. So I started pushing myself to move. my regular exercise and weight training helped enormously. I could lift myself and move. Don't get me wrong, it was still bad but I think the morphine fog was worse. The drugs also made me throw up making the incisions pull. So this morning they removed the morphine part of the drip, the catheter, O2 and ,now I can think clear enough to write.
I have 4 small incisions where the surgeon inserted cameras and instruments. One larger incision which I can't see at the moment but feels about 4 or 5 inches long, and I have a wound drain. I still have a drip and
am only allowed fluids, I have not eaten solid food in nearly 5 days, unless you count jelly as food. So in the end I can cope with this. Chemo is the next challenge.

Tomorrow Everything will change

I will be booking into the hospital this afternoon. My operation will be tomorrow. It is a strange thing waiting for an operation. I remember hearing about a Buddhist practice, but can't find anything written on the web about it, so may have imagined it; of meditating on the prospect of some potential loss or grief. During the meditation, thinking about the grief while distancing the emotions from the image of loss. Imagining how you would cope with and accept the inevitable losses or pain in our lives.
That may or may not actually be a Buddhist practice but that's what I have been attempting to do. So I have been trying to imagine myself after the operation, imagining the drip, feeling like every part of my body is bruised, the pain in my gut if I try and move. I imagine focusing on different parts of my abdomen, running my hand over to find where I am cut and what has been done to my body. And I have been visualising testing different muscles to see which ones can contract without pain. To work out whether I can use my quads and glutes and upper body to move without engaging the abs. Scenes from American police shows come to mind, where there is a guy on the ground who has been shot, and the cops are saying to each other, gun shot wounds to the gut are the most painful. Then I imagine injections of pethidine and drifting out of myself a little, the pain still there but dull and less.
OK, this is gruesome right. But I think the worst that can happen is that I am right, and this is how it will be. And maybe I will drift in and out of sleep for 24 hours and not remember too much about that time. But I want to be prepared and not be shocked by the amount of pain.
So I will tell you in my next entry, not sure how long it will be, exactly how it was.

I started putting all this down before I read the link below, but it may explain why I am blogging about this. http://www.wildmind.org/search/emotions

Support, what does that really mean?

I have found that my reluctance to talk to people has continued. I have talked to my daughters, a couple of my sisters, one close friend and my massage therapist/naturopath and my personal trainer. I have informed most of my friends and the members of my book club, but have done that by email. A few people have tried to contact me by phone, but I have not picked up. My mum and dad have not called me, they know and understand me well, I appreciate the distance they have allowed me. The replies received by email and the text messages from friends have been a great source of comfort, even amusement.
I have always lived somewhat inside my own head, and now I think that is possibly a good thing. I can deal with this if people give me space and don't get emotional around me. I hate when people look at me with sadness in their eyes. It is not helpful, they look like they think I am going to die, and I am not going to.
I haven't even given this link to anyone yet, maybe I won't. I am not even sure why I am writing this. Maybe no one will ever read it. But just in case here is the very useful check list my dear friend Margo sent me for preparations.

Well I've given it some thought and think you should consider preparing for your homecoming as well.

So for when you get home consider:
having ******* come around every other day for an hour for the first few weeks to:
stack, run and empty the dishwasher- you will be too sore I think.
do your washing, folding and ironing
make your bed
do any shopping

Also you could prepare home now by:
Making sure your jug is handy to the sink so you can drag rather than lift- or use microwave
have on bench crockery and glassware you use so you don't need to stretch
Organise things so you don't need to go up and down stairs
make some frozen meals and soups for yourself - not too high fibre or stimulating to the bowel.

Give yourself a pedicure before as reaching toes later will hurt for a while .
It may sound odd but I would rather like the idea of setting up my bed to welcome me home - towels ready etc. Face mask and hot pack at the ready
Think about everything you regularly do and modify where things are to avoid stretching, bending, lifting, carrying including sitting too low.

For hospital
PJs - consider drips and ease of getting on with one and half hand.
Mattresses are plastic covered and so produce static so have natural fibres including underwear.
Slippers that slip on and off
Dressing gown or something so you feel happy walking to a hospital coffee shop or public area
A wrap for your shoulders in your favourite colour to keep your shoulders and heart warmed
Most hospitals have a library with Internet access if you can't access it from your room.
Mobiles are often banned as they interfere with some monitoring devices
Shower gel that is moisturising but won't make you slip in shower- soap slips to floor
To feel good- Mist to keep face moist, lip moisturiser, light hydrating moisturiser to apply regularly - air conditioning is so dehydrating.Hand cream.
Re hair- the hospital may have a hairdresser who would come to you and do your hair if you cannot do it
Herbal tea bags (you can ask for boiling water when they do tea rounds)
MP3 player.
Hope this helps and will be thinking of you.

This is support of the best kind.

The Surgeon

An appointment was made for me to see a highly recommended colo-rectal surgeon on Thursday 2nd August. My daughter and son-in-law drove me to the specialist clinic at Westmead Hospital. It was a grueling journey. Lack of adequate street signage caused us to get lost numerous times, not the extra stress you need while trying to deal with the diagnosis of a major illness. However, the surgeon was running very late, over an hour, so we only had to wait a short time. The Surgeon was friendly and had an excellent manner, I liked him immediately and felt this is the right guy to do this operation for me. He explained that he would attempt keyhole surgery (with an incision of 4-5 inches) but would revert to the traditional method of a large incision if there were complications. He assured me that the cancer was in an excellent position for surgery and that unless there were complications I would not have a colostomy( thank God ) if there was a problem and I woke with a colostomy it would definatley be temporary. This was all sounding better than I had expected and my spirits were high. Then he told me that I was now locked into this disease and the testing surrounding it. I would have to have chemotherapy, something I dreaded. Also yearly colonoscopies, regular CT scans and blood tests. The prospect of cure was good, but I would always have the possibility of another bowel cancer developing hanging over my head. He gave me a run down on the way this cancer sits in the Australian population. It is primarily a Western disease, with Australia and New Zealand being the countries with the greatest number of cases per head of population, followed by the USA and then UK. It is linked to diet, not so much what we choose to eat but what is in the foods we eat.
He said that people moving from countries of low incidence to countries of high incidence were, after 20 years, at exactly the same level of risk of getting bowel cancer as the general population even when they continue to eat their traditional foods cooked in traditional ways.
He booked me in for the operation for a little over a week away, I did not want to have to wait and think about what was happening to me. So it was all set in motion, in a little over a week, I would be lying in a hospital bed with a drip, and an incision, and about a foot of my bowel gone, needing pain medication and looking very pale. I was trying to picture it, but still I left feeling hopeful, I guess that was the best I could expect at this point.

Testing

This is a diary of my thoughts surrounding my being diagnosed with cancer. I am a 55year old woman. I am fit, strong and healthy. I have 2 adult daughters and I grandchild. In Australia there is a free government bowel screening program, a kit is sent to people over, I think, 50 and the test is taken at home and sent away to pathology, the results are then sent to your GP. I did the test when it was sent to me and the results came back positive for blood. My GP said don't worry it could be anything, have a second test, which I did. Then she rang me at home, at night,
and said all 3 samples were positive, that I had to book in for a colonoscopy ASAP. I had mixed feeling about it all. I had been a nurse and knew what the possible outcomes would be if I was diagnosed with cancer, but cancer is not a word that one easily associates with self.

I went for the colonoscopy on Friday 27th July 2007, it was not nearly as bad as I had been told. When I woke after the procedure, the nurse told me that the doctor wanted to see me in his office. I knew. They usually walk around and say, you are fine to go, your test was all clear. They don't ask patients to go to their rooms unless they have bad news.

The doctor was kind and compassionate and professional and I thank him for that. He was careful to make plain that I had bowel cancer but had sent biopsies away for pre-operative testing. I was booked in for a CT scan and an appointment with a surgeon. My CT scan was done just a few days later on Monday 30Th. It was OK, not painful or uncomfortable, but all these tests seem to involve drinking large quantities of liquid. The male nurse /technician who did the scan, bustled around, in a very professional way, keeping his distance, not wanting to make eye contact or connect with the people who might have fear in their eyes, wanting a reassurance from him that he could not give. I liked him, it was just the distance I needed.

The next day, Tuesday, I picked up the scans. I sat in the car, taking deep breaths, not wanting to read the results. I thought to myself that I had never been afraid to face things head on before, so just look at them. All my other organs were clear, the only sign of cancer was the one that the doctor had observed during the colonoscopy. A rare silent prayer of thanks. I could now start to deal with thoughts of the next steps in getting this thing out of my body.

Over the next few days I had to tell certain people about the diagnosis. I had already told my husband, who I don't live with, my daughters and their husbands. I dreaded telling my parents and 6 siblings. I rang my older brother, told him and asked if he could tell all my brothers and sisters after I had told mum and dad. He was very supportive and agreed to tell them. I told my parents, they are strong people and they were OK. I rang my brother and said OK now you can start telling the others, but he said, I think you should do it. He said he would if I insisted but that it would be better for me and for them if I did it. So the calls began. I called them all one after another, repeating the same information and found that by the time I got to the last one, I no longer had a lump in my throat. I was able to explain clearly and without emotion the details of the situation. He was right, in telling my story over and over, it had started to lose power over me. I was going to beat this thing. I knew it with absolute certainty.