The C-Word

There are a couple of ‘C-words’ that are pretty taboo in society, but one of them in particular has a lot of power to cause ongoing angst, lack of sleep, and some off-the-wall reactions in people.

I was diagnosed with thyroid cancer on March 25 following a series of tests including an ultrasound, x-rays, a biopsy and blood tests. It is likely to be a medullary carcinoma, which is a less easily treated form of thyroid cancer than the more common papillary or follicular thyroid cancers. To confirm the diagnosis (ie, which type of cancer), I have more tests to come. Interestingly, however, there is some slight chance that it isn’t cancer at all, but the only way to be sure is to cut it out.

The context to this is that my grandmother (Nan) passed away last year after two years and two cancers, a lymphoma and then leukaemia. Nan’s illness and death had a huge impact on most of my family, including and especially her children (my mother, aunt and uncle) and my cousins on Nan’s side. We are a very close family group. Therefore, only a very few people knew about the tests I was having as I didn’t want to get anyone overly worked up over nothing.

This post is a collection of my thoughts and feelings gathered up over the last fortnight or so.

The thyroid
The thyroid

My Eyes are Up Here
I’ve made some interesting observations about the way people react to news like this.

Following the diagnosis, which I had steeled myself for, I decided to resign from a bunch of voluntary positions I hold in order that I may concentrate on my health, my PhD and my upcoming wedding. But I also wanted to get in contact with a number of people and tell them in person. This is the first observation I was able to make: nearly everyone reacts the same way. It might seem obvious, but I still found it interesting that almost everyone went quiet, averted their eyes, and whispered something like ‘oh God’ or ‘oh no’. Everyone I have spoken with is as supportive and as kind as they could be, and I couldn’t ask for a better group of friends and relatives to face this with, but this is how everyone reacts.

As I have been talking to friends and relatives about my cancer diagnosis, many can’t seem to keep their eyes of my neck. It is as if all of a sudden they can see the thing growing in there. In truth, I became much more conscious of it when the diagnosis was confirmed. It was almost as if I could suddenly feel the whole outline of the tumour without even needing to touch it, and it seems warm, so I can understand why other people think it’s obvious to them too.

Honesty is the best policy
I think a lot of people were quite unsure as to why I’m happy to be so open about this whole mess. Part of my reasoning is that following my surgery, there will be a noticeable scar in an obvious place. So there isn’t much point trying to hide the cancer from anyone I intend to see ever again.

Secondly, I want to help draw a bit of little attention to cancer. Despite the various high profile activities of the Cancer Council, the McGrath Foundation, et al, it still seems to be such a tough topic for people to discuss. It’s not something that, in 2013, should be suffered in silence by those with the disease and their families while everyone else thinks “I’m glad it’s not me.”

I’m not after any sort of sympathy or sorrow from anyone, but I recognise that I will need support from my family and friends. Perhaps most importantly, I need them to support my fiancee, as she will be my main line of support. So part of my reason for blogging this whole process is to acknowledge that I will need a lot of (mostly emotional) support in the coming months.

Finally, blogging is cathartic. For me, it has always been a good way to organise my thoughts, rant, get feedback, and generally help me deal with stuff. I’ve rarely been as personal in a blog post as I am in this one, but as mentioned, there isn’t much point trying to hide any of this. I see this post, and the ones to follow, as part of my treatment.

There are a lot of people worse off than me
I am a relatively healthy young adult, so I have a natural advantage in taking this on as compared with other groups of people who might have cancer. It is older people like my Nan, and their partners also, who need the most support financially, emotionally and physically. I have found kids to be surprisingly resilient in the face of something like this, but it can often affect their growth and development. They too need as much help as can be mustered. Someone like me, with the mental and physical strength of early adulthood, can be more focussed on recovery than other people might be. Another reason I’m fairly confident of successful treatment is that I live in a country with one of the world’s best health systems. Even without private health insurance, I know that I will be able to get access to high-quality treatment and professional support. This is a much better situation than the vast majority of the world’s population.

Coincidentally, I had committed myself to a new fitness regime and begun changing my diet before the diagnosis. Over the past few years, I have put on a significant amount of weight and I had virtually stopped all non-incidental exercise. As a result of this, in January I finally set my mind to getting fitter and healthier so that: 1) I look good for our wedding; and 2) I am generally better able to live a long and happy life. While I haven’t achieved anything like my goal weight or fitness levels, the new regime and diet is paying dividends already, with an 8kg weight loss since January. I am much more aware of my base fitness and my limitations than I would have been a few months ago, so I am much more equipped to tackle the cancer than lots of other people would be. Additionally, it was partly due to the exercise that I came to recognise the lump in my neck. The thing feels like it is putting some pressure on my airway, but I would have been much less likely to pick that up if I wasn’t jogging most mornings.

The Good Cancer
All over the web are references to thyroid cancer as “the good cancer”, because it has a very high survival rate. My GP told me that if you have to be treated for cancer, this is the one to be treated for, which seems to be a common statement from GPs.

I already despise this description, but not just for the obvious facts that thyroid cancer: 1) can still be lethal; 2) is treated with major surgery, radioactive iodine and chemotherapy; and 3) is followed up with daily lifelong medication. I also reject any description of thyroid cancer as “the good cancer” because it puts thyroid cancer and its sufferers in an oppositional binary to all other cancers and other cancer sufferers. It says that you are more likely to survive than everyone else (which is a good thing, unless you’re ever trying to be supportive of other people with cancer) and that, simultaneously, you won’t suffer as much as everyone else (after all, what kind of “good” disease would cause suffering?) Finally, as described earlier, thyroid cancer has multiple variants, so any description of a ‘good’ cancer might unrealistically raise expectations in people with more difficult cancer.

Another reason I hate this tag is that Nan was also told by her GP that lymphoma was “a good cancer”. The Cancer Council says, of lymphoma:

prognosis is generally good, with a five year survival rate of more than 87% in Australia

However, Nan reacted badly to her treatment and the lymphoma was shortly followed up by leukaemia, which may have been caused by the original treatment:

Chemotherapy drugs are effective in the treatment of many cancers, but these powerful drugs also pose the risk of causing leukemia in some patients. In fact, the risk of developing leukemia is higher when taking chemotherapy drugs than with radiation therapy. Also, the risk grows as the length of treatment increases or the dose of the drugs gets higher. ((University of Rochester, 2012. See here)).

So, after weighing that all up, I intend to very strongly reject any mention of a “good” cancer. The prognosis is positive, but there is no need to introduce needlessly emotional, misleading, and blithe phrases into the conversation. And I told my GP so.

The Road Ahead
With apologies to Robert Frost:

Two roads diverged in a yellow wood,
And sorry I could not travel both
And be one traveler, long I stood
And looked down one as far as I could
To where it bent in the undergrowth

It is difficult to see too far down a path sometimes, whether something is obscuring the view or whether it’s just difficult to imagine what might be around the bend. However, my GP and endocrinologist are confident this can be quickly treated, though the GP did warn I would have to “take some time off”. A bit of surgery and I could be good to go, so long as I take my two pills a day for the rest of my life.

I have a surgical consultation scheduled at Royal North Shore Hospital for April 11. Thereafter, a four to six week wait for surgery, which will also be at RNSH.

I am pretty confident of the long-term prospects of successful treatment. And I intend to keep blogging about it whenever I have something interesting or insightful to say.

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