Very Much Alive

5 years on. I am well and have no sign of cancer. I have re-visited my blog, mostly because a friend is about to start chemo. During my cancer treatment, I told my family that if the cancer recurred, I would not have chemo again. I was wrong. during that time I forgot what it felt like to have energy, excitement and expectation.

I have so much I want to do. I have been learning Mandarin Chinese and I am going on a trip to China soon. I have 4 wonderful grandkids, I want to start taking them to art galleries and museums.
I have a new house and want to dig in the garden, sweating with the sun on my skin. Life is great and I would go through chemo all over again, it WAS worth it.

2 Months On

When people ask me how I am, I answer, Fine , still tired a lot of the time. Thats the boring truth of my situation. It is not the overwhelming, disabling fatigue that I experienced while I was on the chemo, it is simply feeling tired and needing to rest most afternoons. I know, I know, lots of people have a siesta in the afternoon and many more would like to but can't. But I don't want to rest, I want to go full speed ahead.
A few weeks ago I asked my doctor how long before this tiredness disappears and she said, up to 3 years. Damn!! It is a depressing thought for me. I know, I know, I am lucky to be alive and healthy and 14 months after the original diagnosis I have no sign of any cancers. I think my grumpiness about the need to rest is that I am worried that this will be the pattern of my life from now on. Yours in grumpiness.

I published this post and then read Doug's blog, Doug was the husband of Jane Eastman who died on June 3rd this year after a very long struggle with bowel cancer. http://dougtaro.blogspot.com/2008_06_01_archive.html
After I read a few of his posts I felt that what I had written above was petulent. This is the rollercoaster that I am. I am now sitting with my 4 year old grandson on my knee while I type one-handed. I have arranged to meet 2 of my sisters for a walk near the beach and to have coffee after.

Grandkids, a great reason to be happy.

Construction site Luca, Pippa In sink , Little Ezri

AOK

It is a chilly, sparkling Saturday morning here, I got up just after sunrise and have been sitting here sipping coffe and contemplating my future. Yesterday after the colonoscopy when the doctor came into recovery, with patient folders under his arm, looking relaxed, I knew. It was the same doctor who, a year ago, gave me the news that I had cancer. He was smiling and said , everything looks good, it's all clear, I will see you in 12 months.

So here I am thinking about seeing my grandkids grow up and hoping I get to dance at their weddings. When I think about all that I have been through and where I am now and I ask myself , was it worth all I went through, and the answer is YES! I have always said that if I had a recurrance of cancer I don't think I would do chemo again, but from where I am now, I finally get it. I finally understand that clinging to life, doing whatever it takes to see one more sunrise.

The view from my kitchen balcony.

Unexpected Rollercoaster

Even though the oncologist told me it would take months to recover my energy after the chemo, I think I had actually expected my life to jump back to normal, like a rubber band when the tension is released. There are periods of real energy now, even feelings of exhileration and joy at being alive, but that's mainly in the mornings. By mid afternoon I am trying to stop myself from lying down and having a rest. Some days I am so tired by dinner time it is a bit depressing, but most days are pretty normal.
What took me by surprise was the overwhelming rush of emotion after my final appointment with the surgeon. I had been holding it all together for the last year, through the diagnosis, the surgery, the bungled porta-cath operation and the chemo. The appointment with the surgeon was a mere formality, we drove to Westmead for him to check the scar from the operation and for him ask how I was. He told me that the operation was a success and he didn't expect to see me again. I thanked him and left. Bubbles of some strange emotion began to float to the surface, I still don't have a name for the feeling. A strange mixture of relief and apprehension, simultaneously feeling belief in the success of the operation and chemo and an unexpected fear. It was a sudden realisation that I can't really leave this all behind me, there will always be the fear that this could return, that I might have to go through that last year again. It was an echo of that day I left the hospital after the operation, the same mixture of relief and fear and I cried for ages, not able to stop and not understanding this feeling that felt like grief but I didnt know why.
Over the next few weeks as my energy returned, that complicted mix of feelings was pushed to the very back of my mind. I started back at the gym, and going for walks by the harbour, started going to movies and plays and enjoying my beautiuful grandkids, until the last few days. I am going for a colonoscopy tomorrow and all the weirdness of feelings is back.

Final Chemo

This is the penultimate day of my final chemo cycle. It has been months since my last post because I am so unsure about how I feel, everything changes minute to minute. I have become more tired each cycle and have not really recovered fully in the off chemo periods. The oncologist shortened the on chemo period and lengthened the off period so that I have been having 10 days on and 10 days off.

To say I am tired is such an understatement that I have been searching my memory for words that give all the nuances associated with this malais. I am torpid, lethargic, exhausted, listless, languid, spiritless, fatigued, drained, run-down, weary, bleary, hazy, done-in, shattered, drowsy, enervated, weakened, worn-out, bone-weary, bushed, sapped, spent, shot, fragile, light-headed, woozy, whacked, zonked, tuckered-out and in a state of ennui.
The fatigue is so all consuming that I began to doubt that energy had ever existed in me, until I found last year's wall calendar. I flicked through the pages seeing appointments for personal training at the gym, dates to meet friends to walk, theatre, bookclub, dance classes, until June. Life as I knew it changed with my diagnosis of colon cancer. As the pages turned the memories of those awful months came flooding back, the testing, operation, pain, recovery and then chemo.
A friend emailed me last week to see how I was because I hadn't updated the blog. I can't recall all I said but I do remember saying that if I had the chance to take back the last 9 months that I am not sure that I would. The idea just slipped out of my mind through my fingertips and onto the email without a lot of conscious thought. I have been mulling over those words these last few days, I told him (in essence) that what I had gained outweighed the pain and illness. In the grip of this fatigue but with the end of it in clear sight, I think its true. This is not a journey I would have chosen or would have ever imagined would be in my life, but now I am on this road it's the only one I know.

Mixed Feelings

Christmas and New Year is finally over, the plastic tree and the decorations are safely packed away and the couch has been moved back to its rightful spot. That felt like a very long holiday season and I seem to enjoy Christmas less each year. I think I would like to volunteer to work in a charity kitchen next year, it would make more sense.
I have had 3 weeks chemo free and I feel almost normal. The last chemo cycle caused more problems. I had the last IV chemo treatment, which seemed to have gone well, the same day I started the oral chemo which was to be taken for 14 days . I was aware of the beginnings of the hand foot syndrome but on day 10 of taking the oral Xeloder, I was putting the clothes on the line and I started to feel an odd mixture of sensations in my hands. It started with an intense tingling in my hands like electric shocks, my arms felt like I had been laying too long in an awkward position and had that dead flesh feeling where you have to shake your arms to get the feeling back. The chemo clinic said to stop the drugs and come see the oncologist the next day. She examined my hands and gave a pin prick test starting at my finger tips and working towards my palms. I couldn't feel the pin from the fingertips down to about one inch into the palm, and couldn't feel the pin prick on my toes. The neuropathy had worsened. I could no longer tolerate the mix of drugs I was being given so I was no longer to have the IV and will continue cautiously on the oral chemo alone. I was given 3 weeks off chemo and saw the oncologist again today.

This is the cause of the mixed feelings. I won't have to sit for 3 hours at a time receiving the IV chemo. I won't have the arm that aches for nearly a week afterwards. I'm not sure about the nausea and tiredness because I didn't know which drug was causing that. But with the oral chemo alone I don't have the best protection against cancer returning. I am drawn to the idea that what will be will be. I am so pleased at not having the heavy duty IV drugs that I am willing to take my chances.
I had never really noticed my energy levels and ability to keep going when tired or sick until I started chemo. It's different to any illness or pain or recovery from operations that I have ever experienced. It is like someone has taken out the bath plug and all your energy and coping ability drains away. But today, the last of my 3 weeks chemo free, I feel good.

I-AM-Not-A-Wimp

Many years ago I started Tai-Chi classes with a friend, she loved it, it frustrated me to the point of great irritation. I gave up on Tai-Chi and enrolled in Aerobics class instead. That's a good anecdote to describe how I have lived my life. Full speed ahead, always doing stuff. I have realized that my big fear with cancer and chemo is not that I will die from it, but that the chemo could cause me to be permanently disabled.
I saw the psychologist, two sessions so far, and she told me two encouraging things. 1. That instead of feeling at the mercy of the chemo process and the medical system in general, I must personally choose, each cycle, whether or not I will have chemo, and 2. That there is no evidence to support the commonly held belief that positive thinking helps beat the disease of cancer. The first helps enormously, doesn't change a thing except for my mindset, yet the decision to choose rather than be passively swept along by the process has lifted my spirits. As to the second, on the one hand it is a relief to feel that by being down or negative about the process I am not defeating the chemicals and letting cancer return. But on the other hand, the one common attitude I have found among cancer patients I have spoken to is the idea that thousands of people, many much worse off, have been through chemo and have managed. Mixed in with this attitude is, I think, along with an abundance of positive thinking, guilt about complaining about the hardships of chemo when they can see others suffering so much more. (see my last Post) You develop great empathy with and admiration for those cancer patients who fiercely cling to life, most often for the sake of their families. Here is a link to a blog I read by a woman whose strength is an inspiration. If you read my blog and you are inclined to pray or believe in the power of positive directed thought please send Jane your most positive thoughts and energy.
http://jaeastonslife.blogspot.com/
So, I am hereby acknowledging that I am not a wimp, chemo is really awful and I hate it everyday I have it and I have every right to complain and whinge about it, but I will choose to continue with it for now despite all the side effects I am having. Be aware, next post will be a big list of problems and side effects.

When It Rains it Pours.

Raining cats and dog, Rain, rain go away, come again another day;

Rain on the green grass, Rain on the tree, Rain on the housetop, But not on me!

It's raining it's pouring the old man is snoring, he hit his head on the back of the bed and didnt wake up in the morning.

And of course, When it rains it pours. On the one hand I keep trying to stay positive, I keep hearing how important it is to stay positive through cancer treatment, but on the other hand, things keep going wrong.

I started this post a few weeks ago when it was raining everyday, I was feeling sorry for myself because yet another thing had gone wrong. I developed the beginnings of a side effect of xeloder, hand foot syndrome, in my feet. It feels like the bottom of your feet are burning and prickling and that there is no cushioning on the bottoms of your feet. It was difficult to walk for about 3 days. The oncology nurse told me to stop the xeloder immediately and to soak my feet every day in a tub of warm water with alpha Keri oil in and to coat the feet with bepanthan cream and put socks on while it absorbed. It worked over the next 3-4 days, though the redness remained for over a week. More than anything it was depressing. I felt that everything that could go wrong did go wrong. But 2 days ago I started my 4th chemo cycle, the IV dose went OK, even though my arm was very painful, a reminder of the the toxic drugs spreading through my veins, but when got home I massaged my essential oil mix in and slipped an old woollen leg warmer (from my 1980s gym days) onto the arm. It worked really well and I have been sleeping at night with the oils and warmer on my arm and the pain is just about gone. My xeloder dose was reduced from 6 tabs a day to 4 tabs a day. The thing that effected me however, was a woman I spoke to the chemo clinic. She was maybe 10 years older than me, she told me how she had been diagnose with bowel cancer, but it had already spread to her lymph glands and liver and she now had it in her lungs as well. Her portacath experience was similar to mine with the pain and she was left with a permanent disability in her shoulder. She had a second port inserted and had been having chemo off and on for over 2 years. She had neuropothy in her hands and had to be careful with holding containers in the kitchen because she lost feeling in her hands and often dropped things. She was so cheerful and hopeful, and looked quite well and it made me feel like a wimp. I started wondering about the way I have been feeling, I know my experience is valid and unique etc etc. but talking to this woman brought to the fore the knowledge that my discomfiture with chemo was more emotional that physical. I can cope with the physical, it is the idea of allowing myself to be pumped full of toxins just in case some of the cancer cells got into my lymphatic system or bloodstream and the fact that I have developed almost every side effect I was warned about that makes me feel so ambivalent and uncertain about the treatment. I felt so well after my recovery from the original bowel surgery but now on chemo I feel my energy draining away, having to lay in bed all day some days instead of being up preparing for Christmas. So now I feel like a wimp and have booked in to see the cancer council psychologist to try and come to terms with what I guess is a post traumatic stress episode after the portacath disaster and with my feelings about chemo.

Third Chemo Cycle

Thank you to all the friends and family for the encouraging feedback about my blog. It is easy to put your private thought out into cyberspace anonymously, but quite another thing to give friends and family access to those thoughts and feelings, so again , thank you.
I recovered quickly after the removal of the port and last week was my off chemo week. For the last four days of that week I felt better than I have since this whole saga began. Still tired but coping well. Yesterday I started my third chemo cycle, the usual process, the 3 hour IV then started on the twice a day chemo tablets. I was prepared for a week of feeling completely wiped out, but I am fine. No nausea, reasonable energy level, I am amazed I feel almost normal. Only problems are disturbed sleeping patterns, but I don't mind being an insomniac as much as sleeping for 12 hours a day, and the electric tingling in my fingers and hands. The sensitivity to cold on my hands and feet has actually increased. Compared to how I have felt the last few months this is preferable for now, but I am not sure how I would cope if I developed a permanent neuropathy, the feeling lies halfway between uncomfortable and painful, I have never felt anything like it before and is hard to describe. For now I am guardedly optimistic

5.15am

I woke today at 5.15am , my whole body clock seems to have gone haywire. I woke thinking of Holden Caulfield. I have recently re-read Catcher in the Rye and it keeps returning to my mind, perhaps because the meaning I took from it is so pertinent to my situation right now. Bear with me while I explain. The central theme of the novel is clearly existential loneliness, nothing at all to do with a longing for company, but rather a profound recognition of each human being's ultimate alone-ness which is at the core of their existence. Of course we have layers of connectedness, love and familiarity in relationships, family, friends, groups or tribes as well as nation or religion etc. But at key times in our lives we become aware of our complete and utter separateness. For example when laying on an operating table as the anesthetist injects a drug into your vein and you become completely helpless. During times of grief and loss; when a mother gives birth and the medical team takes her baby away to weigh and wash her. Your first day of school as you walk through the gate; during adolescence when you realize you must soon make your own way in the world. These examples are within the realm of a normal healthy life, I can't even imagine the sense of alone-ness for the abused and exploited of this world. So this is not me feeling sorry for myself, rather the opposite. I am sitting at my kitchen table watching the sunrise through rain drenched trees and feeling OK.
The port was removed, I was in pain after but it was quite manageable and is now getting better. The port has been sent away for testing to see if it was faulty, I will see the surgeon in the next few weeks and perhaps get some answers as to why this happened, but the anaesthetist suggested that it sounded like a nerve was stitched in with the port. Ouch, and yes that would explain the unusual amount of pain. and the difficulty I was having raising my left arm.

Which Drug is causing Which Symptom?

Suddenly, yesterday, I started to feel somewhat normal. It was so long since I had felt normal that it took me by surprise. I was only slightly tired, more a quiet Sunday afternoon calmness. No nausea or pain, except for this damn port which will come out tomorrow. So in my search for understanding about what is happening to my body I have reassessed the cause of my symptoms and have been very encouraged by my conclusions.
It feels as though the chemo tablets, Xeloder, were not the cause of my extreme tiredness, it feels as though it was the IV elaxitin. If you are not on chemo that will mean nothing, but it means that I will suffer the effects of the IV for some days after the treatment once every 3 weeks rather than every day for 14 days of the tablets. If I am right this is hugely encouraging and I am back to feeling maybe I can get through this. I am aware that today I am pulling back from engaging with this explanation, being cautious, it feels like I am making a chess move where the opponant could easily take my piece but might not for strategics reasons, I am a very small pawn in a very large game.

Port-a-Cath failure

The infection subsided as did the swelling and some of the pain. On Thursday 25th Oct, one of my twin daughters gave birth to a beautiful baby girl, while at the hospital visiting her I picked up my 3 year old grandson and felt something rip in my chest. I had a deep painful bruised feeling for several day and then noticed that the pain began to reduce markedly, I felt for the port but it wasn't where it should have been, it had moved. It had broken away from the bone where it was stitched and moved into the breast tissue where it could not be accessed. At my next chemo session the oncologist decided that the port was useless and had to be removed, my second drug had to be changed to tablets and they would have to use peripheral veins for my IV chemo. I was really angry that I had been through the insertion process, the antibiotic allergic reaction, the infection and hospitalisation to end up being able to use the port just once. She had never heard of a port dislodging like that, they are meant to be robust and for people to be able to work while having chemo.
I have started on my oral chemo, Xeloder. I am now on a 3 week cycle so I have the IV infusion over 3 hours at the clinic and go home with tablets which I take twice a day for 14 out of 21 days. Then I have one recovery week without the drugs. So the one and only positive is I don't go home with the pump around my neck. I am tired all the time, but have found that if I take the drugs at 11am and 11pm instead of breakfast and dinner I can get a few hours of energy in the mornings. I have had no other side effects so far, other than slight nausea which is manageable. The vein in my arm ached after the IV Elaxitan but I made an essential oil mixture which I massaged into the arm and it took the pain away completely.
Here is the mix, I made it up using oils to heal bruising, it worked for me:
In a base of about 20ml of carrier oil- I used sweet almond-
A few teaspoons of arnica cream, 15 drops Hypericum,
10 drops lavender, plus I added a small amount of Lasonil ointment.
I mixed it well in a small jar and massaged it well into the arm.

I Was Being Wildly Optimistic

Feeling that something had gone right, that this treatment is within my ability to cope, gave me a much needed boost, but as has been the case throughout this process I hit a brick wall with a resounding crash. After the pump, was removed, later that day, I started to feel ill and the pain around the port increased to the point that none of the analgesia I had was relieving it. I returned to the clinic and saw the oncologist. She informed me that I had developed an infection in the tissues surrounding the port, I would have to be hospitalised for 5 days for IV antibiotics. Waves of disappointment engulfed me. She told me to go home and wait until a bed became available later that day but if I felt worse to go the the hospital ER.
I did feel worse later and I went to the ER, that was a big mistake I should have just waited at home, better to feel sick at home than to sit for 6 hours in a hospital ER. My doctor had phoned ahead but no beds and then they wouldn't let me leave so I was trapped in the appalling NSW public hopsital system.
Eventually I was found a bed on a surgical ward, a private room thankfully, and IV antibiotics started. Each 500ml bag of antibiotic infusion was followed by 500ml of saline to flush the line. The antibiotics made the veins ache, they had to change the cannula site 3 times due to the inflammation in the veins. The nursing staff and resident doctors were caring and professional, as is usually the case the underpaid health workers doing their best to hold the system together in the face of mismanagement by governments and hospital administrators.
My stay ,while somewhat sleepless, depressing and frustrating was uneventful but I could not bear to stay there for 5 days. On the 3rd day I pleaded with my doctor to allow me to go home on oral antibiotics. She relented and sent me home on a very high dose, I would put up with the stomach upset to sleep in my own bed and eat real food.
The experience gave me the opportunity to look around and really see the plight of people trapped in that system without resources, family or financial. It actually surprises me that the MOST disturbing factor in the experience was the truly dreadful food. I was fortunate enough to have family bring me healthy appetising food but the meals served to patients in public hospitals is absolutely shameful and has given me cause to fight.

First Chemo Cycle

I was terrified for days before my first Chemo session. I was nervous and teary and found it hard to talk to people. The clinic is a small, private oncology day centre, with recliners for 5 patients at a time. There was no waiting when I arrived, straight onto the recliner and a clear explanation given about the procedure. The specialist nurse felt for the port and was annoyed with the surgeons placement of it, The port is below the scar in my cleavage, making access less than easy . She had to feel through my skin for the shape of the port, ascertaining where the piercable membrane was. She showed me the L shaped needle and told me to take a deep breath, I felt a firm pushing on my skin, and then she was taping it down. I didn't even feel it go in. My relief was palpable.
I was given a small bag of saline to make sure it was going into the line, the first injection into the line was an anti nausea drug and then a bolus injection of the first chemo drug, followed by a bag of the second drug.
Again I felt nothing, no nausea no pain just a slight light-headedness. I was actually starting to feel elated and thought for the first time in weeks, I can do this, I really can cope. My husband, who had escorted me to the clinic, left to make business calls and I lay back and listened to my Ipod. All music I know well, quiet friends whispering comforting words into my ears. After 3 hours of treatment the 3rd lot of drugs was attached to the line. This was the pump that I was to go home with to have the rest of the chemo delivered over 48 hours. It was not at all what I expected, I was thinking a battery operated thing. It is a balloon within a bottle, about the size and weight of a small spring water bottle. It is placed inside a mesh bag with a drawstring and that is hung around the neck.
I stood to leave and looked in the mirror, I was extremely pale, a whiter shade of pale. I was light-headed and the bottle pump thing very annoying and visible, but still it was all easier than I had expected. One of my drugs has some very strange side effects and rule.
I can't eat seafood for the days I am receiving chemo, the drugs will react with it.
I can't eat or drink cold foods. No ice, ice cream , no refrigerated drinks, I can't even brush my teeth with cold water. If I drink anything cold my throat will spasm and and I will have trouble breathing.
I can't touch anything frozen, like foods from the freezer without oven mitts on, or bottles from the fridge I must use cotton gloves. I can't wash my hands in cold water. I can't walk on cold surfaces like floor tiles without shoes. The condition that will result in breaches of the rules is called neuropathy , a numbness and tingling in the hands and feet and a change in peripheral touch sensation , it may fade over time but is sometimes permanent.
I take 2 different anti nausea pills each morning for the chemo days. So the resulting no pain and no nausea and vomiting has given me a new lease of hope. I will have to lay around for 3 -4 days every fortnight watching DVDs , could be worse.

Tips:
My husband talked me into going for lunch after leaving the clinic, that was a mistake I really should have gone home to lay down, I was exhausted before I got home.

It is very difficult to pick stuff up off the floor without the possibility of wrecking the needle placement, don't try it. This morning I had to return to the clinic because it had partially dislodged and I was bleeding. So no heavy lifting or bending.

You can't shower for the days you have the pump in so may need help in and out of the bath till you get used to it if you are feeling a bit off kilter.

Any exercise while recieving the drugs. even up and down the stairs a few times has made me feel wonky.

They told me not to cook while I had the pump in, stay away from hot stoves and sharp knives.

Porta-Cath Insertion

I finally had the porta-cath inserted yesterday. I was to have prophylactic IV antibiotics before the operation. One gram of Vancomycin was added to a 500 ml bag of Normal Saline and the drip started. Within 5 minutes I felt like thousands of mosquitoes were biting my back, feeling like an intense itching and prickling, my face went flushed and a wave of "oh, this can't be good" went through my body and I felt like I was going to faint. I called the nurse, she saw me and the medical machine flew into action. She stopped the drip, pushed me into recovery which luckily was next door. There was, also fortuitously, an anaesthetist visiting a patient, so I was given adrenaline, which by the way, feels very weird as you are aware of it rushing through your body causing your heart to thump and makes you want to throw up.
After a bit of recovery time they decided to go ahead with the procedure. I woke to find myself back in recovery, and yes the surgeon was wrong about the post-op pain, I had an intense pain in my chest at the op site. They gave me digesic and told me that I should try and sleep. About 30 mins later, after the tablets had had no effect at all, an X-ray guy arrived to take an in-bed chest x-ray to check the positioning of the implant. He started to raise the back of the bed and I felt like someone had cut open my chest and shoved an implant into it, and threaded a tube up into a major vein, oh wait, they had.
I think it was a combination of severe pain, frustration at being so very immobilised, and the effects of anaesthetic, allergic reaction and the adrenalin shot, but anyway I had just had enough and started crying. The nurses sprang into action as carers and advocates. My anaesthetist was saying that the protocols called for digesic for pain relief and that that should be enough. While one nurse stayed with me making me concentrate on my breathing, another took the anaesthetist aside and talked to him. A few minutes later she was back with an injection of something for more effective pain relief.
So it is the next day and the pain is subsiding and I have been pondering the nature of the way pain is experienced. When I feel strong, pain is manageable, when I am exhausted or disappointed or feeling fragile, pain is less bearable. I think that doctors often don't see how very individual the need for pain relief is, not just from patient to patient, but also from one episode in a patent's history to another.
I am thinking the worst is over now. I have been dreading this foreign thing being implanted into my body, close to my heart. I start chemo next week and I can start to count down the treatments till this is over.
Oct 12th. I am adding this for people who stumble across my rantings when they are about to have a porta-cath in. A few days after and I am just needing panadol for the pain, it settled very quickly, a vitamin B6 seemed to have helped, getting rid of a bit of fluid. Don't be fobbed off about pain relief. Ask the surgeon and the anaesthetist at the first meeting with them, say you want to have adequate anlgesia in recovery and insist on having a script to take home even though you may not need it. Ask when you can shower after the proceedure and how long before you can lift things. I was given far too little information. I am glad I had this port in, the alternative, a pic line, would have been worse for me. Resistence is futile.

Strange Days

I have not started chemo because I have not yet been assimilated into the collective of chemo recipients through the installation of my implant. Yesterday I had my appointment with the vascular surgeon who will implant the portacath. It is placed under the skin of the chest, just left of midline and stitched to the bone of the sternum. (outch) In true detached, male surgeon fashion, when I asked if it will be painful after the surgery, he replied as though he had never been asked that before saying, "no not really, there will probably be a pulling sensation". I will let you know if he is right. He could not fit me into his operation list until the 9th of Oct he said that I could 'technically' start chemo the day following the implantation, but the specialist oncology nurse at the chemo centre said,
" Oh, why don't you wait and give yourself time to heal because that first session will be painful". I like having the truth, I like being given the chance to be prepared and brace myself. So I start chemo on the 15th. I'm dreading that first chemo session.
This week has been strange, I have been quiet and a little distant from people much of the time. A few days ago I went shopping at the supermarket but before I left I mentally slipped into a Scanner Darkly type camouflage skin. I drifted for over an hour through the shopping aisles nearly invisible, pulling my trolley to the side frequently, to avoid eye contact with anyone. I was aware of a sense of - loneliness is not quite the right word but - loneliness. I pulled back my minds eye's camera for a wide overhead view of the supermarket scene and I recalled ant farms my children had when they were little. The ant farms were filled with sand and had tunnels through which the ants hurried pushing and carrying crumbs of food. For the most part the ants ignore each other unless one stops and blocks the corridor, then there is an impatient scramble, all trying to get through the blocked space.
I started back at the gym today, my first personal training session since before my Operation. I am starting slow but I am a bit sore now and I'm tired but I was so buzzy after the exercise, it connects my mind and body like nothing else.

Holding Patterns and CHEMO

Everything seems to have been in a holding pattern the last few weeks. Healing is slow and I am impatient with feeling less than energetic, but I am going for walks and don't have a lot of pain unless I sit for long periods or lift stuff that I shouldn't. I had paused this thought process while I healed and while I was waiting to see the oncologist to find out how bad the chemo was going to be. Well, I had my appointment with the oncologist on Monday and it was a bit depressing. It is all going to be harder than I had expected. Me being me, I insisted on going to the appointment alone, that was a mistake. There was so much information to take in at the appointment I still don't have it all clear in my head. But this is what I recall.
Next week I have to have another anaesthetic to have a device called a port-a-Cath surgically implanted under the skin on my chest, it is a permanent port for the administration of the chemo which I will be having every 2 weeks for 6 months.
http://images.google.com.au/imgres?imgurl=http://www.users.fast.net/~kittenz/portacath1.jpg&imgrefurl=http://www.users.fast.net/~kittenz/Port.html&h=155&w=202&sz=10&hl=en&start=8&um=1&tbnid=YTKNJGbhnTMUxM:&tbnh=81&tbnw=105&prev=/images%3Fq%3Dportacath%26svnum%3D10%26um%3D1%26hl%3Den%26sa%3DN

I will also be sent home each fortnight with another drug which is administered, over a 48 hour period, through the port via a small pump ( I think about the size of a flattish cigarette pack) which will hang around my neck. (I find the image of this hugely difficult, I will elaborate at the end of this post)
The oncologist recommended that I do not leave the country during treatment and even trips within the country will have to be cleared with her. I will have to have, ( I think she said fortnightly) blood tests to check for among other things, white cell count. If I get a temperature over 38 degrees I have to go straight to the ER, tell them my chemo regime and they will give me IV antibiotics. While she said I will not lose my hair, and that nausea and vomiting are rare on this treatment, she gave me a list of possible side effects, the most immediately problematic of which is tiredness, and the tiredness is cumulative, so that by the end of the 6 months I will be pretty much tired all the time.
I should finish Chemo around Easter 2008 and will start to recover my energy within a month.

Having a cancer excised from your body is so much easier to deal with than having toxic substances pumped into your body. Substances so toxic that they can cause other pathologies and suppress your immunity. Each health professional I have spoken to has said something like, people seem to be able to cope ok with chemo. I guess they do, what choice have they got. The oncologist gave me a choice of whether to have chemo at all, or to choose tablets instead, but at the same time gave me the stats on the probable outcomes. With the operation having been so successful, if I have no chemo I have a 65% chance of being cancer free in 10 years, with the tablets I have a 75% chance but with the IV regime I have an 88% chance of being cancer free in 10 years. The up side of this is that with regular testing and CT scans I think that actually gives me a better than average cancer free rate than the general population.
That's where I am at the moment. I have managed to stay positive up to now, feeling this was all going to be ok, having an end point in my head at which time I can resume my life, now that end point looks a long way away. I need to get back to the gym.

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.