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Keeping Up With The Walk Beside.
Posted on October 13th, 2008 by Cam.
Categories: Let's talk.
You never know what is going to happen with the internet these days.
Firstly, some of you may have realised if you have done a google search for ‘The Walk Beside’ to get to this site, then you may have been greeted by The Walk Beside heading, but with details underneath of how to buy various pharmaceutical products for a firm body, or parts thereof.
A friend called me months ago and said that The Walk Beside had been blocked due to inappropriate material, and he listed a few words (I blocked my other ear) that were coming up that I remember getting punished for saying when I was a child. I went through the site and confirmed those words weren’t on the site at all, and besides, I didn’t even know how to spell the words he listed.
Anyway, Guennadi (who knows everything about computers) sorted it out this morning. It seems I was hacked into and words were hidden in the header of some posts, but not displayed, so they were there, but not visible. Whenever a search was done, the words would appear. Sorry to families with young children who have may have spent some time having to explain, or deny any knowledge, of some words and phrases.
On a positive, I was contacted last week by a lady in California who has co-authored a book on the effects of chemo brain with a Doctor at UCLA (University of California, Los Angeles). A cancer survivor herself, she asked if she could use the post I wrote on Chemo Brain the other day in the book. The manuscript gets sent to the publishers at the end of the month and I will score a free copy.
Keep your ears to the ground for my book signing tour.
Looking back, looking forward
Posted on October 10th, 2008 by Cam.
Categories: Let's talk.
There has been an amazing change that has come over me in the last two weeks I think. This latest scare with the finding of the mass in my chest started with breathing difficulties, pain in my hip and all over weakness only about six weeks ago. Now I can honestly say that I have almost forgotten what it is like to feel sick. It is an amazing difference.
Looking back, it has been eighteen months, maybe two years since I felt this good. I literally feel like I would feel the same if I was a perfectly well 34 year old who had been a bit sedentary for the winter months. My muscles are still trying to find their memory and my bones may creak from time to time, but no more than they did before all the hoo-har began.
While I was in Albany the other weekend, I was challenged to run. I thought, “I actually feel I can do this” so run I did. The first 30 meters or so would be very loosely defined as ‘running’. The first 3 meters were spent realising that my body had forgotten how to move forward at a rapid pace, and the remaining 27 meters were really just throwing my feet out in front of my body while it laterally fell. I ran about 300 meters without stopping, so I was quite surprised how quickly I have returned to my usual peak fitness level.
Now I am riding each day to work. It is one kilometer away - an intense one kilometer. I imagine it won’t be long before I can remove the training wheels and get enough speed to overtake pedestrians. It is good to have goals.
My excitement is building with getting into some full-time work again. I went to a workshop on business management, have worked on promotional material all week, and have worked on some design development for the silver work. I think the biggest problem I am going to face now is how to divide my time between the workshop, the education website and the filming of documentaries. I will explain all these projects a little later down the line when the websites are up. But for now, looking forward, I am pretty amped.
Chemo Brain
Posted on October 8th, 2008 by Cam.
Categories: Let's talk.
I am quite amazed actually how my body has returned to such a healthy state so quickly. I literally feel like I have a normal mid-thirty year-old body. Absolutely amazed. I am riding every day into work, having no problem at the gym and feel like I could do anything at the moment. In the midst of my body being okay, it highlights the effects of the chemotherapy on the brain. This is often called chemo-brain.
I was chatting with a lady at the gym yesterday who is a vet but has headed back to work in a support admin position as her thinking capacity had been altered after chemo. She specified that her ability to grasp concepts had been severely affected, and she found herself making errors in simple calculations.
For me, it has been just as much of an issue. My ability to find the right words, remember conversations, follow directions etc. has been really hindered. I’ve realized I forget specific details, repeat myself, or forget specific details. I am hoping it gets better over time, but it has been a more significant factor than what I would have thought before.
Peripheral awareness has also been affected and I notice this mainly when I am driving. I drove on some days when my body felt energetic and capable, but I genuinely lost interest in checking my blind-spots, looking in my mirrors, indicating and taking off or stopping gently. It was as if I had actually refined my driving skills, rather than lost them. And it is not as if I became completely useless behind the wheel - not everyone can say they’ve driven themselves to biopsies through oncoming traffic.
It has been six months now since my last lot of chemo, which was the high-dose proceeded by the stem cell transplant. I feel like my chemo brain is improving over time, but the improvement seems erratic rather than consistent. These days, I can’t play chess, do complex mental calculations or remember words to songs. But these are a few of the things that I couldn’t do before the chemo anyway. I consider this consistency is a positive thing.
Any comments indicating nothing at all in me has changed will be spammed.
When news ain’t welcome
Posted on October 3rd, 2008 by Cam.
Categories: Let's talk.
Very mindful tonight of a friend I met through the chemo gym who has Hodgkins Lymphoma. Her name is Anne and she has been in Melbourne for the last couple of months on a trial drug regime. Her autologous stem-cell transplant was not very effective, and she has decided to go on a trial program before the next stage of transplant.
Thankfully, she was accepted into the trial program that is only being done in Melbourne at the moment. It makes her quite lethargic and nauseous in the recommended dose, so it has been reduced to a manageable amount. Today she got the results back from her CT scan and it shows that a nodule in her lungs has increased in size.
Anne has dealt with her situation in an amazing way ever since I have known her (and I am sure before that!) and she seems to be able to remain level-headed through what she has been through. When results come through that are not expected like this, I begin to realize what it is like when friends look on and feel a sense of helplessness in the situation. As Anne put it today, “it is not the worst news ever…”
So here’s to you Anne, Graham and Fam, I am hoping your good news comes swiftly.
The Best Year Of My Life!
Posted on October 2nd, 2008 by Cam.
Categories: Let's talk.
I was in my hometown last weekend and I ran into someone who used to teach me in high school. We were chatting for a while, catching each other up on what has been happening in our lives. This lady knew of my predicament, and had been following my progress over the year or so. She was recounting how she had been told that this had been the best year of my life. I was quite shocked by this, and still am.
I am sorry to disappoint. But on all accounts it sounds like I should have had the most wonderful of years. To be honest though, I have had better.
I had to apologize to the lady and tell her the truth. I said I have actually had a terrible year. “Thank goodness, you are real!” she laughed with a sense of relief.
There is a train of thought that I don’t relate to at the moment. It involves thinking that something like cancer is the best thing that happens to someone. Now I am not saying that I may not get to that point, but I am honestly not there yet, I don’t expect to be, and I don’t want to be. I liked not having cancer - true, I really liked it.
There are a few reasons why I think people try to perceive nasty situations as being great. Sometimes, it may be due to the pressure placed on people in some circles to smile in the face of tragedy, fearing that a quivering lip may show a lack of faith, strength, certainty, hope. Of course, it may also be a way to protect oneself from the harsh realities of life – if it is talked up as being positive, there is no need to deal with the traumas that we come across in this life. When I think of this response in relationship to how God would see it, I am convinced he doesn’t need us to talk up tragedies so that he doesn’t look as bad.
I am very wary when people immediately reflect on a terrible situation and declare how much good came out of it. This is not to say that good things can’t happen in the midst of trauma, but it doesn’t help me personally to see them as cause and effect. I am sure most people completely understand that the year has been difficult, and I am not interested in reiterating the struggles - I think we’ve all had enough, but I feel it is important to make things clear all the same.
I remember hearing of someone’s funeral where the friends and family were ushered prematurely into a time of celebrating the life of the departed. In an attempt to lessen the sad reality of the situation, the gathered were led in triumphant songs and the mood of the service was kept light. Days after the service had taken place, they repeated the service for those who needed to engage in a time of grieving. They had endured a devastating loss, and they were ballsy enough to let the loss wreak havoc with their spirit for that time. It was time to respond honestly.
For me, there have been so many things happen over the year and a half that make me very happy, and I wouldn’t want to give them up. It has been a chaotic mix of highs and lows. There are still many things to be thankful for and there have been fantastic times throughout.
My perception on this may change in the future, I am not sure, but for now I am happy I am alive and experiencing an extension of time thanks to a terrible year of treatment. I never want to do that again.
Farmocology
Posted on September 30th, 2008 by Cam.
Categories: Let's talk.
I was really fortunate to be able to grow up on a little farm in Albany. Although I ain’t a farmer, I do love being on a farm and pretending I know what I am talking about. One of the brotherhood, Steve, has folks who live on a farm just outside of the hometown and so for a few months now we have planned to go down to set up camp in the bottom paddock.
Three couples (Steve & Leanne, Muz & Katie, Libs and I), one baby (Muz & Katie’s Asher), one fetus (Steve & Leanne’s ‘No Name’), camping gear and farm boots headed down on Friday arvo to Albany ready to escape the comforts of civilization. Sometimes you just need to strip everything back to the bare essentials to appreciate life – no electricity, no showers, no flushing toilet, no tv, no phones – just people and paddock.
We got down pretty late Friday night, so the Pyles (our camp parents and hosts) had kindly set up beds in the farmhouse for us all. Superb! After hot drinks, catching up and getting settled into our camping experience, we headed to bed.
Woke up to Muz’s Birthday, and so we all went into town for supplies (except Muz, who kindly babysat). The nation stops around the end of September for the Aussie Rules Grand Final. When I say the nation stops, me and a few other non-sport-watching Australians usually have the rest of the nation to ourselves for 3 hours while supporters tune in to the game. So being Grand Final day, the television took care of the afternoon and I was able to get whatever else done.
The rest of the day was dedicated to setting up tents, meeting cows, preparing meals and having communication breakdowns. The rain was always going to be threatening the weekend, but it ended up being a perfected first night in the great outdoors. Much to the delight of the women, we gentlemen spoke with Russian accents the whole weekend. As expected, the novelty never wore off and I know that our wives are disappointed we men are no longer feeding off each other’s comments.
In the moment.
I told my usual Ghost Horses story, which is actually a true story. Those of you reading whom I worked with in the summer of 97 in the Blue Ridge will know what I am talking about.
The bottom paddock campsite.
Cowboy Asher
That was the only night we really camped. I guess the combination of possible rain and a warm farmhouse just made it clear it was the right thing to do. Thanks Ma & Pa Pyle!
(l-r)Steve, Leanne (and No Name), Diane, Asher, Muz, Katie, Colin, Libs, Cam.
Apologies to hometown locals who we didn’t get to catch up with. Looking forward to seeing you around the new year though when we are down with time to do so.
It has been another special time of marking the beginning of this next stage of life. I live in constant amazement at the friends and families I have the privilege of walking the same patch of earth with at different times in life. The battle to get through this sickness is not a battle to keep my body in a world that I know – but to keep it with the people I know. This is when it becomes the fiercest battle of all. If everything I have experienced in the last year only got me to this weekend, I would have done it smiling, wondering what to pack.
Bloody Nuisance
Posted on September 26th, 2008 by Cam.
Categories: Let's talk.
Actually forgot to call pathology yesterday to get results, so I called this morning and we picked up the envelope. The nominees were tumor or a blood clot, and the winner is… blood clot.
We were driving out of the hospital as I opened the envelope, pulled off to the side briefly to read the report, then continued on driving. It was as if I had just pulled over briefly to read a map. “Well, that’s good” I said, then drove home. Other info included that it has reduced in size by about half. Nice.
So another saga over with. I guess I could get all reflective about it now, but I am happier just to take this one at face value and be happy. I am so grateful for everyone’s support during this time.
We are heading down south for the weekend with friends. Really looking forward to it.
It will be nice to be without cancer for a while.
Indifferent, almost.
Posted on September 24th, 2008 by Cam.
Categories: Let's talk.
I think the approach, or the resignation, is being quite effective. I haven’t really thought about getting results back, haven’t been anxious about the findings, and I feel kind of indifferent to the outcome. I expect that would change if there is anything to worry about medically. I may have mentioned this before, but my feeling after the last biopsy was, “I couldn’t really care about what you find. just get that thing out of me!” I am overreacting maybe. I don’t want to make out that a procedure like that is close to child-bearing, but if you had to bear a child 7 times in just over a year, the novelty would wear a little thin. I imagine that if this were to happen, on the seventh time you would be forgiven for thinking “I couldn’t really care about what you find, just get that thing out of me!”
I have been postponed again insofar as radiation treatment. I am meant to start next Tuesday, but I doubt that will happen.
For now, we prepare to go camping with some friends over the long weekend. I am really looking forward to that. It is the perfect time of year and a chance for a little bit of relaxing.
I feel like I have done my fair share of relaxing. It seems I have spent a major part of the last 18 months in bed, hospital or on the couch, relaxing. Time to get moving.
Above all, I am so thankful for the support and prayers during this time. This has been a real ride, something I wouldn’t want anyone to go through, but people have chosen to and I am grateful, yet sorry for putting people through this (yes I know, your choice, but the feeling remains). I am honored, nonetheless. No one likes this kind of waiting. It is not exciting, not conclusive, not soothing, not peaceful. Just a reminder that things can certainly be very uncertain at times.
Lala
Posted on September 21st, 2008 by Cam.
Categories: Let's talk.
Stella Rose, affectionately known as Lala, had Auntie Rach come over with the camera yesterday.
She is dainty, beautiful and peaceful (the times I have seen her).
Those who are keen to see more can click on this:
http://picasaweb.google.com.au/LaLaBain/Stella12Days
and choose slideshow.
Ok, that’s enough.
Posted on September 19th, 2008 by Cam.
Categories: Let's talk.
The biopsy is over and the preliminary results (observations) are favourable. The sample today again looked like just blood drawn from a hematoma. The cytology report should be ready in a week. I don’t know what I was happier about- the biopsy being over or the news that the mass is likely a blood clot.
For those who may want to know the details of such a procedure, read on. I know it can sometimes be helpful for people to have some sense of preparedness if you are going through this. Some may choose to not find out if it adds to their anxiety.
I have now had four samples taken from my sternum area. Of these, hang on, let me count… none have been enjoyable. I think it is more to do with the fact that someone is working quite close to the core of your body with sharp implements. Every part of your body’s instinct is to protect the core of your body, so to allow such violation is a real discipline. I would imagine similar feelings occur with procedures to the head.
I gowned up in a two-tie exposing little number today. Being fairly tall, the gown tends to be more of a shirt for me, leaving my legs and upper thighs as temporary highlights on the ward for staff and other patients. I need to be careful not to drop anything on the floor as bending down to pick anything up can be awkward.
After a chat with the Specialist, consent forms were signed and I was taken into the CT room, as the CT scanner is used to provide guidance as the needle goes in. They did a few diagnostic scans first up which involves injecting a contrast dye into the cannula. This moves through your body pretty quickly and gives you a warm rush, you feel like you need to take a leak, but it passes (the sensation, that is). They then marked on my chest where the entry point would be and then prepared me for the biopsy.
They didn’t give me a sedative like I hoped for, as I needed to be fully awake to respond to the instructions of breathing. Local anesthetic is injected around the entry point, and for me this was just left of my sternum. Once the site is numb, the biopsy needle is pushed in a little way, and a scan is taken. The Specialist makes sure the needle is following the right line into the mass.
A guy from cytology was standing just outside the door, and as soon as a sample is drawn, he views the cells under a microscope and gives immediate feedback on the nature of the cells in the sample. In my case, it was to determine whether they did a full biopsy or just the aspirate. In the end, they just left mine as an aspirate, as there were no suspicious cells observed.
The most pain was felt as they punctured through cartilage. It is just uncomfortable, but then the needle reached a place that did give me a bit of pain, so I let him know. I did this with a pitiful wincing expression and a groan that spoke a thousand words – mostly expletives.
I realize how tense my body is during the procedure, as it is exhausted when I relax afterwards. After about 3 hours of monitoring, I was allowed to head home.
I don’t want to have to do that again. I have had enough for now, and am looking forward to getting back into my normal routine. I have decided that it is easier for me this time to live as if my results are benign while we wait for cytology. It is a lot easier than living in limbo. If the results are not favourable, I will deal with that then.
Innocent until proven guilty.
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