Failsafe Precautions

Posted on May 29th, 2008 by Cam.
Categories: Let's talk.

A friend of ours kindly bought us a gift the other day – a 1000 piece jigsaw. It is a time vortex. I have not participated much, as I am usually on my treasured mac, but Elizabeth is ploughing into it.

For my thalidomide treatment regime (which begins next week), the pharmaceutical company requires us to be on two types of contraception. I think between the jigsaw and the laptop, we’ve got it covered.


Back on my feet

Posted on May 28th, 2008 by Cam.
Categories: Let's talk.

Today, I was normal again. I went to the shop for half a day, mainly just to catch up with some people and to do a little paperwork. As I sat there, I found it hard to believe that I have just had high-dose chemo, a stem cell transplant and pneumonia. I don’t know if it is the contrast between my expectations of the treatment or the effectiveness of the treatment and recovery, but I certainly did not expect to be doing this well so soon.

I am regaining strength, and a new sense of excitement about plans for the future. I am ready for this next phase of living. There is a lot I have held back from writing because it hasn’t been related to cancer or how my perspective has been influenced by its presence in my life. I am hoping to write less about this now as I am hoping there will be less to write about.

I need to get back into the frame of mind where I am not dealing with sickness on a day-to-day basis as a focus. Sometimes, there is no choice. Sometimes sickness is the only thing on the agenda that I have to attend to. Now, that is changing, and hopefully it will be different for quite some time. As much as it makes great reading material, being sick is crap. Don’t try it at home.

So I hope I am not jumping the gun with my expectant dry spell of medical monologues. But can I suggest if you need these kinds of kicks, there are many decent and half-decent medical shows on mid-week.

You may take this as a warning also that I may just start writing on other things. Although it is difficult to remember the details, I did have a life before all this started. So there is my disclaimer. I don’t wanna hear no jibber jabber talk making noises about not hearing no cancer jive. There are other things in life that are just as important to talk about and require a lot less pharmaceutical input. There will be, however, more to write on my treatment, the incredible medical profession and the people around me who make life rich during this phase.

Here’s to health. I am looking forward to being reacquainted.


Meanwhile, life goes on.

Posted on May 27th, 2008 by Cam.
Categories: Let's talk.

Life is settling down in the Harris camp. It has been a week since someone has tapped a vein, 5 days since we have sat in a waiting room, 4 days since my last severe headache and about 6 weeks since I last slept properly. Things are looking good.

Libs is back to working half-time and then goes to 4-days a week next week. I can’t say enough about how well her colleagues have looked after us through this whole time. It would have been quite another story if Elizabeth were not working with these people I am sure. So we are incredibly thankful for them.

I am back at Chemo Club gym and it has been great. It is one of those places where no matter how rough your body feels, you come home feeling great for the time spent with the people there and for the good it does your body. I certainly feel that the time spent there has been significantly beneficial for getting me prepared for treatment, getting through treatment, and recovery from treatment. After spending 2 weeks in bed, the muscles start to feel rejected and fade away. Last week, at full pace I was able to do 6 minutes on the exercise bike and 3 minutes of rowing. Today, it was 5 minutes rowing, 30 reps each arm of curls (at 4kg!), 70 reps of seated bench press (15kg), 30 reps on the pec deck (15kg). Hard core.

I am heading into the workshop tomorrow just to get a few things sorted. I am looking forward to getting back into a bit of routine again. The education website project I am working on is making good ground also, so I am looking forward to launching that sometime in the second semester.

The only thing on the treatment horizon at the moment is a PET scan (nuclear scan) and the commencement of the 12-month Thalidomide regime beginning next week. Medical life could get quiet for a moment or two after that, here’s hoping.


Health Professionals

Posted on May 26th, 2008 by Cam.
Categories: Let's talk.

I think Health Professionals are a unique bunch, and they have a unique impact on people’s lives. It seems that they have the goal of making things better for you when you are at your most vulnerable. They are the ones that you can drop your pants for when asked and know they won’t laugh, or they’re not meant to. They are the ones who carry and analyse your body fluids for you more closely than we ourselves ever will. They are the ones who try to find out what it is about your body that makes you uncomfortable and give you things to make you comfortable again. Health Professionals often do this when you are in no state to do it yourself, when you are at your most vulnerable, and when you lack the knowledge of how to get out of this predicament yourself.

So a question came up in the comments about what makes a great Nurse. Great question. In my experience, these things stand out. A good nurse:

1. Uses your name, responds to you personally. This is true of most professions, I believe, but when you feel rotten, hearing that someone acknowledges you by name is a significant entry point to nursing greatness.

2. Pays attention to hygiene. I am bordering OCD when it comes to hygiene, so I take particular notice to this one. I want to make sure that my Nurses wash their hands before handling my medication or conduct any procedures that should be as close to sterile as possible.

3. Act on patients’ concerns or questions. I had one nurse who didn’t know what to do in a particular situation which, of course, is fine. But instead of admitting she didn’t know what to do, she didn’t do anything. It is fine to say, “I am not sure, but I will find out for you”.

4. Make good conversation. When appropriate (ie not during a resuscitation, especially your own) I appreciate getting to know whose hands my life is in. It is just comforting. Some patients may not always want a good conversation however, but I generally do. Warning to patients: no matter how coherent you think you are after a general anaesthetic, or heavy sedation, never, I repeat, NEVER start up a conversation with anyone until you are able to remember your name and address. You will NOT be coherent, you will NOT make sense, and you WILL make a fool of yourself. Trust me on this one.

I am always amazed at the amount of knowledge that Nurses have in order to nurse well. Elizabeth, being a nurse, can reel off masses of information about the human body and it’s treatment – just a huge amount of knowledge and skills. To think that these are the same people that make my bed for me and carry my pee bottles around just seems like the biggest paradox.

So I have the hugest admiration for these people who have taken on this profession. Often it is thankless, always it is underpaid, never is it a walk in the park. There are many other aspects of the health profession, but I have had the most to do with nurses. The things that I have found helpful really apply to most professions, and are based around caring for people in a personable way. Nurses are the main ones who make you feel like a valuable human again, when all the treatment you are receiving makes you feel like a science experiment.



Posted on May 23rd, 2008 by Cam.
Categories: Let's talk.

We were back with Specialist Brad today, albeit very briefly. There was a mistake made with the booking times and so he squeezed us in during his lunch break. It just made the session very short, but we got all our questions answered, so we’re happy.

My bloods are good and showing my kidneys are functioning well (they were struggling quite a bit while I was being treated in hospital due to the anti-fungals). My liver function is still not 100%, but it is getting better. For those who like to keep track of how my para-proteins (kappa) are going, they are hovering around 24. We were kind of hoping they would be closer to 0, but not this time.

A comment that hit me a little hard today was in response to us asking Brad about the implications if we wanted to travel next year. He said, “Of course, you have to live! Cam’s future is uncertain, you have to keep on making plans and live!”

‘Cam’s future is uncertain’. That is what is easy to forget, or what I want to forget. I know that this outlook really applies to everyone, but to hear it coming from a person who has an educated understanding of how uncertain my future is was unnerving. I am still analysing how I have responded to hearing that.

While writing this post just now, a good friend just called and told me of her friend of a friend who has MM for 12 years and is still going strong. I really love hearing about these cases, ones that are specific and encouraging. So the things I have heard today kind of balance each other out.

All this still makes me wonder how I want to spend the next chapter of my life. I feel like I am back in year 12 and struggling to know what to do with the rest of my life. We’ll see.


In brief…

Posted on May 21st, 2008 by Cam.
Categories: Let's talk.

Another day, another blood test. Gearing up to see Specialist Brad on Friday. We’ll know a bit more about how things are going then.

1 comment.

I can’t believe it

Posted on May 20th, 2008 by Cam.
Categories: Let's talk.

When there is a lull in treatment, when there are no tests or procedures for a time, it is easy to sit in amazement and think, “I can’t believe I have cancer! This cannot be real!” I have, on occasion, made the passing comment to Elizabeth, “I can’t believe this is actually happening”.

I guess it is more of an issue when I am feeling okay and have no physical pains to remind me, but overall, it is still very easy to disbelieve the reality of what is going on.

Maybe it would be easier if there were a direct connection with a cause, like smoking and lung cancer, where I could rationalise using cause and effect reasoning – then it maybe easier to accept the reality of the situation. But with no known reason for all this going on, it does make it hard. I suppose it is similar to some tragic accidents where a bad set of circumstances results in great loss. It may be able to be explained technically, but rationally it still is hard to accept.

So the question of “Why me?” goes hand in hand with the question “Why not me?” as there seems no way to justify either of them. I know that I don’t want it to be me, and I don’t want it to be anyone. I have had enough for a time. It is just as well because I have only maintenance therapy scheduled for the next 12 months in the form of a tablet. I think I can handle that.

I am going to try and not think about the future treatments. They are more difficult than the one I have just been through, carry more risk, and are less successful. It is one of those situations that I guess we have all been through where you have to get through something that you just hate. You would do anything to get out of it, but you know you have to do it. It is just soul destroying at that time.

I know that when they tell me it is time for the next batch of treatment it will be an appropriate time for my weeping. Not just for the discomfort and the risks, but also for the toll it takes on those around me who get me through. I dislike watching this as much as they dislike watching me go through what I go through. I hope it never comes to this. I really do.



Posted on May 19th, 2008 by Cam.
Categories: Let's talk.

I am all about trying to get sleep at the moment. For some reason, both Elizabeth and I just can’t seem to nod off at a reasonable time. For me, last night I didn’t fall asleep until I headed to the medicine cabinet at 3:30am. I am not sure what I took, or how many, but it seemed to work for a few hours. We had to get up early (ie, before 11) as we went and had a massage.

I love a good massage, and today was a big help I think to get my neck pain sorted. The afternoon was then spent asleep on the couch, trying to regain what I lost in waking hours last night.

We are doing lots of birthdays at the moment. Sister Carms on the 4th of May, Angus’s literal birthday on the 8th, Sister Rach’s today, BIL Michael’s tomorrow. Good times.

It’s a big effort, but we are going to try and get back to the gym tomorrow. That is all I have the energy to say.

Goodnight to all, and hello medicine cabinet.



Posted on May 17th, 2008 by Cam.
Categories: Let's talk.

This week I have been very cold. It has been role reversal in our house as Elizabeth is usually the one rugged up or under a blanket. These days though she is walking around in summer clothes while I have been in Ug boots, dressing gown and beanie. My bed has been a layer of blankets. I still have problems getting warm.

Apart from that though, things are getting better, albeit very slowly. I still have a bit of a chesty cough and no energy. My headaches seem to be getting less frequent and I have learned how to manage them a little better without having to take tablets.

Things are going to be kicking back into action next week. Elizabeth returns to work part time and I get stuck back into some projects. I have got about 5 appointments over the next two weeks and am going to try make it back to Chemo Gym/Club each Tuesday and Thursday. Life may get back to normal, you never know.


I have a hunch

Posted on May 15th, 2008 by Cam.
Categories: Let's talk.

My ongoing struggle with understanding how faith and belief plays out in healing is, as said, ongoing. I am very thankful that I feel my life is being spared daily, each day is more apparently a gift than the day before, although sometimes it hurts to get up to enjoy the gift.

Being aware of a God who I believe has the power to heal cannot be pondered for too long before having to deal with the aspect of volition. What determines the yea or nay of God’s decision to heal or not to heal? Sometimes I find it hard to be excited about my ‘getting through’ difficult phases of treatment, when I know for every time I have a winning outcome, there is someone out there with the same beliefs as I who loses the fight. I tend to only be quoted the success stories. People don’t want to go down the line of remembering and verbalising the situations where people with faith ended up deteriorating or dying.

At the time of writing, we are getting news streamed from China where thousands have perished in a horrific earthquake. The nature of the earthquake is understood by those rescuers who weep when they pull the thousands of lifeless bodies from the rubble and rejoice when the miraculous sounds of life are heard under the same rubble. As someone who feels like one of the breathing rescued, I am still mindful of those who didn’t make it and I wonder who dealt me the good hand, and why, and when is the next earthquake coming?

Last week I was talking to a lady who was told she had a maximum of two years to live. That was eighteen years ago. She has put her faith into juicing an assortment of vegetables and riding her bicycle. Now that seems to have worked for her. So I put my faith in an omnipotent Creator and she puts her faith in silverbeet smoothies. It seems we may end up with a very similar outcome. I would be stoked to get another eighteen years!

So, without doubting any aspect of a Creator’s power to heal, can you see where my confusion lies? I am beyond accepting only the accounts of miraculous healings, as encouraging as they are and as real as they are. Where I walk, there is the reality of sad outcomes that are too often forgotten.

I have a hunch that there is much to learn about the volitional aspect of God’s nature. A God who makes decisions. A God who acknowledges the grief as well as the glory. A God who demonstrates mercy through the act saying ‘yes’ or ‘no’. A God who allows a life to be long as much as He allows a life to be short.

An illustration. I was on a professional development one day a few years ago at a hotel conference centre. A distressed mum burst into the conference room and cried for help as her baby wasn’t breathing in her hotel room. Myself and two other teachers ran over to the room and we all sprung into action in our own way. One started mouth to mouth, one started praying over the baby to be raised from the dead and I did all I could to check signs of life, of which there were non. No breath, no sign of circulation and a body that was mostly cold. We knew God could make that baby come back, and as the mother stood by and watched, we all just worked to get that baby crying again. The ambulance arrived and declared the baby dead at the scene, leaving a mum in hysterics and us in shock.

I don’t know what went wrong. We had faith, and we had knowledge, and we had skills. What more was necessary to get that baby to breathe again? Someone had made a decision, but I don’t know why the verdict was handed down as it was. This is an example of where the outcome was devastating. I will never forget it, neither should I.

Now of course this questioning and train of thought is based on a particular set of beliefs that form a foundational perspective. It would be easy enough to disregard such beliefs to find an easier answer involving ‘luck-of-the-draw’ that doesn’t involve an all-powerful Creator. But I have had a lifetime of having God making his presence known. For me, that is an unchangeable constant. Everything else needs to be considered in light of this. Thank God! in one way, and Dammit! in another.


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