The Walk Beside

Where in the world is Guennadi?

Posted on September 13th, 2008 by Cam.
Categories: Let's talk.

There are few people that I can call up at 10,11, or 12pm to see if they want to go for a drive or have coffee. Guennadi is one of the few who I know will be awake usually, and tonight would have been a great night to go for a drive.

Guennadi is, again, one of the few people I know who really knows his place in this world. A lot of people go on epic journeys or self-awareness weekends to ‘find themselves’. But Guennadi knows who he is, and where he is. Now you can too, as Guennadi is on the move and carrying a personalised GPS. You can follow his movement here (hit the satellite tab and zoom right in)

and keep up with his experiences at guennadi.com

Safe travel brother.

2 comments.

Great Aspirations

Posted on September 12th, 2008 by Cam.
Categories: Let's talk.

Today we had a consultation with Dr Brad. He was not content with the aspiration that was done the other day (I have been calling it a biopsy to avoid having to explain it, but really it was what is called a FNA or fine needle aspiration). It is just too out of the ordinary to have a large hematoma pop up for no reason. Great news, nonetheless.

So I am being scheduled for a biopsy under camera guidance. This will mean making a small incision up near my collarbone and sending in the camera to have a look. The samples can then be taken from various parts of the mass as well as being able to visual observe. This will be of course a more thorough biopsy, and hopefully be able to provide some clearer results. I will be under general anaesthetic for the procedure, so at least that makes it less traumatic.

In the meantime, I was scheduled for radiotherapy to start this coming Tuesday, and a simulation is booked for Monday. I am still going to go ahead with the simulator, but the radiotherapy is being deferred until results are back.

Physically, I am feeling pretty good. I have walked to work the last two days and my chest is less sore. My headaches are generally consistent but we are going to leave checking that out until this chest thing is sorted. I am feeling pretty healthy really, and all my bloods are in good shape. Nothing else really is affecting my day to day, and having energy back since stopping Thalidomide has been fantastic.

Libs has been taking the brunt of this though. She has had a particularly busy week at work, is still recovering to some extent from the flu, has only been sleeping with the help of sleeping tablets and has not been able to catch up with people much for lack of time and energy. This has been the area where I have felt helpless. I have not been able to work more than a week or two straight in the last year or so, and this is incredibly frustrating. Now, I need to have a clean run so work can get started. I am really excited by it all, and when the time is right, I will show and tell more about what I have been working on during the last 18 months or so. It will be good to bring a bit of balance back to the force.

I think I would really struggle if treatment needs to continue in the next few weeks. It would be very disheartening.

5 comments.

Details

Posted on September 9th, 2008 by Cam.
Categories: Let's talk.

I am frantically running in and out of the house so not able to go into great detail. Firstly, we are very pleased that no cancer cells were found in the sample that they took. But I also have to make it clear that because of the nature of Myeloma, it is very difficult to be certain of this.

The report looks good at first, saying no malignant cells are found, but it doesn’t rule out the need to keep looking. It states the possibility of there being a tumor that may have been missed and there being a blood clot around it or in it. And there are still a few other things to check out around the site and still in the sternum.

As with all the results I get from tests, we have been getting used to not getting too excited, as it is just too unpredictable. So this good news comes with a warning, in that there are still things to look into. To be honest, I am very relieved this information points to a great outcome, but only because the results are inconclusive. It basically says we didn’t find anything in this sample, but it could be this or this, so test this.

So it will be more clear when we see Dr Brad, hopefully in the next few days.

Until then, I am calmly grinning cautiously, knowing that it is a good result, but there is more stuff to check out.

6 comments.

Results are in.

Posted on September 9th, 2008 by Cam.
Categories: Let's talk.

No cancer cells detected.

Will be letting this sink in a bit and providing details later.

My sincere gratitude for your prayers.

6 comments.

Look! If it’s red, it’s blood!

Posted on September 9th, 2008 by Cam.
Categories: Let's talk.

It used to be so much simpler in the old days. Doctors could tell just by sipping someone’s urine whether they needed castor oil or not. I called pathology this morning and they said still not ready. Maybe this afternoon. Sigh.

Anyone want to go to the beach? It’s a beautiful day outside. I think I might head to City Beach around lunch time.

Talking of meeting, we will be starting a regular get together at the Brisbane Hotel, on the corner of Brisbane and Beaufort in Perth. If you are interested in just coming down and hanging out, tonight, 7:30.

1 comment.

It’s a girl! (no not the tumor…)

Posted on September 8th, 2008 by Cam.
Categories: Let's talk.

As of earlier this morning, we became Uncle and Aunty again with the birth of a healthy baby girl for Carms and John! It was quite a long labour, but everyone seems to be fine. So all that is very exciting, and to have a little girl join the fam is a great surprise as there seems to have been a flood of baby boys recently in our town.

I have just got off the phone to pathology and the results are not conclusive yet. Some results are through, but the report is yet to be finalised. We are expecting to wait another day.

We are honestly running on vapors at the moment. We had quite a full weekend on top of our unwelcome habit of not falling asleep until 4am on average. It is ok for me as I have no commitments the next day usually, but Elizabeth heads into a week completely frazzled on every level.

It will be good to have this time pass.

UPDATE

Introducing Stella Rose Bain

4 comments.

Oh well, while we wait…

Posted on September 7th, 2008 by Cam.
Categories: Let's talk.

So backtrack with me a little, to about 9:38am on a Friday morning, just over a week ago. Doctors must dread this kind of morning, when they have to convey bad news to someone. It was one of these mornings for Dr Brad.

I guess we make it a little easier for him, as he knows we read the scan reports ourselves before we see him. Between Elizabeth’s brain, our medical dictionary and my habit of breaking words down to their Latin or Greek roots (often completely made up on the spot), we tend to have an idea what the report is trying to say. For example:
“There is a large multi lobulated ovoid mass located posterior to the manubrium and upper body of the sternum located anterior to the ascending aorta and pulmonary outflow tract extending to the superior aspect of the aortic arch and the origin of the great vessels” (and another 20 similar sentences following) could simply read “Something’s in his chest, best get it out”.

Dr Brad was moving swiftly arranging our next movements and drug authorisations. I couldn’t help but wondering if he felt let down by the seemingly poor results of my stem-cell transplant – like something under his control didn’t go according to plan.
I know there must be patients out there who do see the Doctor as being responsible when courses of treatment aren’t successful. They may feel like they need to blame someone, or find a valid reason for unfavourable results. I have heard such bitter stories.

I hope my Doctors never feel this way, because there is nothing further from my mind. I think this is an important aspect where faith pays up in the here and now.

My approach to my sickness and the healing hoped for is not just about science. For me, I can’t escape the affects of a broken body in a broken world, the power of prayer, and a merciful and all-powerful Creator. This is mixed in with the science of human anatomy, chemical/radioactive responses, diet, lifestyle and the involvement of the mind.

If I relied purely on science, or the known, I think I would be justified in demanding logical reasons as to where unexpected tumours came from and wondering whose fault it is that it is there, again. But my response the other day was nothing like that.

I ultimately believe that God is in control. I am not talking about the god of popular belief who seems to be included in conversation just to blame for suffering or thanked at the Grammys. I refer to the God who doesn’t just show up for humanity’s extremes, but who presides also in the day-to-day, in perfect control of a broken world. What goes on inside my body and outside my body shows the characteristics of this broken world, not a broken God.

As yet, I have had no reason even consider that things not going to plan are due to a situation being out of this control. While Doctors do their best to work with what is scientifically known to control my body, I believe there is more going on behind the scenes.

If there is one thing that all my specialists would agree on, it is that I have been one patient who has flipped every expected outcome on its back. At every step, and usually at every consult, we deal with something out of the ordinary of ‘the known’. People have given up trying to predict what my body will do next (I tell them I’ve struggled with this all my life). But I am learning that it is in this chaos I can feel a profound sense that I am being looked after, and looked after well.

7 comments.

No News

Posted on September 6th, 2008 by Cam.
Categories: Let's talk.

The results are still not back from pathology yet, so we will not find out until at least Monday.

7 comments.

More to the biopsy

Posted on September 4th, 2008 by Cam.
Categories: Let's talk.

As I mentioned in a previous post, we are particularly keen to get the results back from this biopsy. I will keep this brief, as there is a lot of detail that could be mentioned now but I will get back to that later.

When I had the biopsy this Tuesday, something happened which took the Specialist by surprise. When he drew back for the aspirate, it drew blood. “Hmm, vascular” he said, with a noticeable element of wonder. He repositioned the needle and took another sample and it drew blood again.

He finished up the biopsy and said that the sample taken looked like blood. “Now there is the chance of course that the cancer cells are mixed in with this blood, but, to be honest, there is a chance that this tumor is actually a big blood clot.”

Thankfully, I was laying down already when he said this. It needs to be said that although the sample taken was different enough to indicate this possibility, we have not received the results from pathology. It was enough of an event though to make me grin. The hope that this situation would get better was alive and well.

So for the last two days, we have been having to wait in eager expectation for these bloody results, we hope. For the last two days we and few others have been contemplating the possibility that this may be the break we are waiting for. For two days, I have felt great, as I have probably gone too far in letting myself believe that the tumor is just a blood clot. The devastation we felt last Thursday and Friday will be repeated again if it is not a blood clot. It is for this reason we have been quietly waiting for some confirmation of outcome.

I am acutely aware that by having people walk beside means a willingness to go through the emotional ups and downs of this disease and I am hoping that the time between me posting this and the time we find out results will be short. But it literally felt unfair to put people in the emotional washing machine that has been the last two days – longer than we were expecting to be here ourselves. I was hoping to find out the results soon to present it in one hit. But the wait continues. Hopefully there is only the spin cycle to go, and we’ll find out before the week’s out.

Aside from this, I am actually feeling really well. My energy is returning very noticeably as the Thalidomide wears out of my body. My thoughts are still quite cloudy, there is an ongoing headache and pain in my chest. But they are all improving, and I am moving spritely throughout my day. I met with a close friend today and he was surprised at how well I looked and functioned, so I am conscious that those who read these posts may get the impression that I am quite sick or something. I am hoping to be back dancing to early eighties classics in the privacy of my own living room before too long.

In the meantime, there is a far more exciting waiting going on for us at the moment, and that is for the arrival of a new niece or nephew due this Saturday for sister Carms and John. It was Dad’s birthday yesterday, a baby may come over the weekend and Fathers’ Day this Sunday. So we are looking forward to a good time with family.

3 comments.

Gowning around

Posted on September 2nd, 2008 by Cam.
Categories: Let's talk.

I was reminded today how significant the humble hospital gown is. Its power is amazing.

There are two kinds of gowns I am familiar with. One has three arm holes in it – yes, three, and yes, arms. I am not sure how many other people have embarrassed themselves trying to squeeze their head through the middle arm hole, wrestling about half-naked in a change room with the flimsy floral curtain does little to contain the frantic gasping breaths that accompany claustrophobia. But I know a friend of mine has. Um, then there is the other kind of gown – the one that if you do happen to put it on back-to-front you get to the lowest and final tie before thinking, “Hang on, that can’t be right! Surely?” It happened to another friend of mine.

There are few things in this world that have the power to annul social standing, economic welfare, education achievements, professional accolades or culture affiliation. The hospital gown, with it’s mysterious powers, seems to achieve such disarmament with incredible ease.

After many frustrations experiencing what a hospital gown allows to be revealed to the world, I think it is not recognised enough for what it can hide.

Day-surgery patients, whose conversations rarely get to the next level of conversation after hospital food and the weather, may be in conversation with others they would never know how to relate to in the real world. Every attempt to identify yourself in society has been left behind.

You can’t even vary your garment. You can’t roll up your sleeves to say you’re relaxed at the end of a day, you can’t unbutton your shirt to say you loved the 70′s, you can’t roll your skirt up to show off your legs. It is how it is. You become refreshingly un-categorical. People’s response to you then has to rely on your countenance and the words that you speak. You come away feeling more connected with people than you expected, and all without having to present your identity through what is worn or adorned.

Such is the power of the hospital gown.

6 comments.

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