Thyrogen costs $1901.52 for two doses, but is fortunately on the pharmaceutical benefits scheme (PBS), and so only costs the patient (me!) $36.10. We were given a prescription for the Thyrogen on our last visit to Royal North Shore, and told that some pharmacists found it hard to get, so we should fill the prescription at the pharmacy in the nearby private hospital. We did, and the pharmacist subsequently said that it had to be kept cold, so how far was our drive. She wasn’t impressed when we said two hours. She put it in a foam box with some ice packs and we took an early trip home with no extra time to enjoy the city.

My two vials of Thyrogen

The radioiodine ablation is being used as a way of cleaning up any remaining thyroid cells. Interestingly, radioiodine is often used in diagnosis of thyroid cancer in other patients, which is yet another reason to think I should have had more pre-operative tests. It could’ve given me a correct diagnosis before the surgery and all some of this waiting might have been avoided.

Nonetheless, on Friday I’ll visit North Shore Hospital again, and stay until Monday morning. The treatment is said not to have too many side effects, but I do have to avoid close contact with people for a period of time afterwards so that I don’t unnecessarily expose anyone to radiation. While I’m in hospital, visitors are only allowed to stay for fifteen minutes, and afterwards I have to sleep in a separate bed from Meghan for a little while and avoid contact with kids or pregnant women.

We have been unable to get any straight answers on a few questions, and often the literature differs from what doctors relay verbally. This is getting very frustrating, but I guess it’s part of dealing with a busy public hospital system (which, for the most part, has actually been excellent). However, we one doctor did confirm that, despite the insular carcinoma being an aggressive type of cancer, the treatment program is still considered curative, not palliative.

Following the treatment, I’ll have a scan which ought to show up any remaining ‘hotspots’ of the cancer for further treatment, which could still involve further radioiodine or something else (chemo or more traditional radiotherapy).

The letter was from my surgeon to my endocrinologist, CCd to me, and included my pathology results. Radioactive iodine is definitely happening but, more than that, the firm diagnosis was of insular carcinoma, an even more rare and aggressive form of thyroid cancer than the medullary carcinoma originally diagnosed. So, that sucks.

I chose the title ‘Blergh’ from one of my favourite TV shows, 30 Rock. For a blog that will mesh my interests in academia, pop culture, digital media, government, democracy, politics, participatory culture and more, I think this is the perfect title.

You can access the new site at www.blergh.org or follow it on Twitter @BlerghOrg.

Here are a couple of photos of my neck before and after for comparison. The before shot focusses on the left side of my neck because I expected the incision to be about 1/3 longer than it is, with the additional section going up toward my ear. However, that turned out not to be the case, thankfully, due to the altered diagnosis:

Over the last few months, I have received so much support and love from my extended network of friends, way beyond anything I ever expected. When I set about making this all very public, the last thing on my mind was what people would do for me. I have been overwhelmed and touched by each of the hundreds of messages on Facebook, Twitter and LinkedIn, comments on this blog, gifts, phone calls, text messages and visits, and I cannot thank you all enough. Following is a selection of nice things that have come my way recently.

• While in the hospital, I received a wonderful bunch of flowers from the District 9710 Rotaract Committee.
  
• My work colleagues at the SMART Infrastructure Facility sent me a very sweet gift of flavoured teas and a glass cup from T2.
• I have had quite a few visitors, including Meghan’s work colleagues and dear friends. It has been really great to talk and laugh with so many people, though the physical action of laughing can be quite painful at the moment.
• I have had touching Facebook messages from people whose family members have been through (literally) the same experience.
• Many people have been contacting my mum for daily updates.

Thank you to everyone who has shown me this support – it has helped tremendously to keep my spirits up and my interests alive, despite everything else that has been going on.

In the next few weeks, I’ll begin sorting through my life and getting it all back in order. I’m due back from sick leave with the uni officially on May 20, and I have to visit the surgeon on May 23 for a checkup. I have at least four visits with my GP to monitor and reduce my calcium supplements depending on what my calcium levels are doing, and one with the endocrinologist for a thyroid hormone test. There may still need to be some radioactive iodine treatment but we will deal with that as needed.

Aside from the pain in my neck, I have a pretty nasty cough and apparently my left vocal chord isn’t working because the laryngeal nerve was “stretched” to give room for the tumour to be removed. It should heal in a month or so. The anesthetic didn’t treat me very well and I was quite nauseous for most of yesterday until about 1am this morning, when I suddenly woke up feeling quite chipper.

The upside is I’m already breathing easier. I can lay on my back to sleep without feeling like I’m choking. And, about half an hour before the surgery, my doctor gave me the news that it appears I don’t have medullary carcinoma after all, but one of the more treatable types of thyroid cancer. They’re just not sure which one yet. I will probably need the radioactive iodine treatment, but from most accounts, that is better than chemo.

And this, too: Can’t sleep but always tired. Can’t concentrate. Feel like I’m going to be sick after eating. Getting light-headed. Heavy breathing. Just generally feeling crappy. 7 days to go.

It started on April 14 when I received a notification, addressed to ‘Todd Holland’ with account details for my new Kohl’s account, which I didn’t create. At first, I thought it was spam or phishing, but the store is legit and the email seemed to be so. Shortly afterwards, I received order confirmations and then shipping notices for the same account, but this time addressed to ‘Patti Holland’, and displaying her postal address in Escanaba, Michigan. At this point, I sent an email to Kohl’s advising them that the email address associated with this shopping account was my address, and should be changed.

Their response:

Dear Travis,

Thank you for taking the time to contact us about your email request. I am sorry that you are continuing to get sales alerts and do not wish to receive them any longer. I would be happy to assist you.

I am sorry for any inconvenience regarding your messages that you have been receiving from Kohl’s. I would be happy to provide you with the link to unsubscribe to our Sales Alerts. Please click on the following link.

http://www.kohls.com/upgrade/registration/sale_alert_unsubscription.jsp

I hope this was useful and has resolved your issue. Please remember once you unsubscribe you will no longer receive Kohl’s great deals promotion codes, and or discounts for future purchases.

We appreciate the time you took to contact us and look forward to serving you again at Kohls.com.

Sincerely,
Mark G.

As you might have guessed, I wasn’t trying to simply unsubscribe from their email alerts. I was trying to get my email address removed from their database, and the shopping account returned to its rightful owner. Nonetheless, I did unsubscribe so as to reduce the volume of emails until this was sorted out. I replied to this email, spelling out my position more clearly, telling them that I now intended to mark their emails as spam in Gmail, and suggesting they contact their customer to deal with this situation.

I continued to receive marketing emails from Kohls, and decided to self-delete the account since they were obviously not interested in being of assistance. I simply went to the sign-in screen and told the system I forgot my password, so it promptly emailed a new one to me. It turns out you can’t self-delete Kohl’s accounts, so I emailed them again:

Hi again,

I have gained access to the account in question and note that users cannot self-delete their account, but are instructed to call Customer Service at (855) 564-5705 for assistance to delete the account. I do not intend to make an international phone call to deal with this issue.

You have 24 hours to completely remove my email address from your system or I may think it appropriate to find more creative ways to make use of the account.

The ‘creative’ activity I was thinking of is simply changing the account email to be Kohl’s own customer service email, which would cause their system to email itself repeatedly. If I wanted, I could order some new stuff and have it mailed wherever I wanted, since details of the credit card attached to the account were visible, as is the customer’s phone number.

The response:

Dear Travis Holland,

Thank you for taking the time to contact us regarding your request to delete your shopping account. I understand your frustration. I am committed to resolving this issue.

I am truly sorry that you were unable to call to request to delete your Kohls.com shopping account. Although I am unable to remove the account from our records, I have deleted your personal information from our online registration at Kohls.com. Please be advised that you may need to call Customer Service at (855) 564-5705 for assistance to delete the account. It is not our intention to inconvenience you in any way. I sincerely apologize for the disappointment that you have experienced due to this shopping account removal issue.

We appreciate the time you took to contact us and look forward to serving you again at Kohls.com.

Sincerely,

Janice B.

I don’t even know what to say about this email. It’s like banging your head against stupid. Needless to say, my “personal details” haven’t been deleted from the system. I’m still receiving requests to fill out the Kohl’s customer survey, with which I intend to have quite a bit of fun. I’m also changing the email address attached to the account to a Kohl’s customer service account – community.relations@kohls.com.

One final note of delight: Kohl’s has a standard email disclaimer saying the information is solely for the people to whom it is addressed, etc, and imploring anyone who receives it in error to let them know. So, I have followed their procedures exactly. It is a pity they can’t do the same.

I am committed to resolving this issue, but it will be on my terms, since Kohl’s is completely unable to do so.

The head surgeon, a Professor of Surgery at a Sydney university who has reputedly done 14,000 thyroid removals, was first there. He asked if I had seen “a female doctor” yet that day. I hadn’t, so he went looking for her. On their return, the Prof and the other doctor took turns feeling my neck and asking about my clinical history. Then came a knock at the door, and another young female doctor entered the room, and shortly started poking about at the tumour too. A few minutes later, this process was repeated by another doctor – four in all. Lucky there weren’t any more because the room wouldn’t have fit us all.

Then they explained the surgery to me and said they wanted me in there as soon as possible. The incision will be about 5-8cm across the front of my neck and then up to the left hand side toward my ear. The thyroid and all the lymph nodes on the left will come out – a thyroidectomy and a lateral lymphadenectomy. Apparently they try to do it so it fits neatly into the neck folds, but I don’t have very obvious neck folds so I don’t know how well that will work out.

Afterwards, I completed some paperwork and headed off. Then we took advantage of being in Sydney for the day and went to Margaritaville in Darling Harbour for lunch. Here are our drinks:

Today, I got a phone call from the hospital to arrange admission for my surgery on May 1st. It’s a strange thing to be happy about, but I feel like that was the best phone call I have ever received. If only I could follow up that visit to Sydney with some margaritas.

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

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.¹.

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.

1. University of Rochester, 2012. See here

For me, the term participatory media has always encompassed and been greater than the term Web 2.0, which I find reflects old paradigms of thinking about technology and, perhaps more importantly, human interaction with technology¹. For starters, Web 2.0 is technological determinism in its most bizarre and insidious form. Whereas it might seem Web 2.0 puts emphasis on the social aspects of the web, to me it places the emphasis on the medium (the Web) while deliberately attempting to obscure that fact. Take, for example, this definition of Web 2.0:

a collection of Web tools that facilitate collaboration and information sharing. (Casey and Li 2012, p.204)²

This clearly places the primacy on the technology in use. Such a construct is insufficient for the nuances of participatory media as I imagine it.

Participatory media needs to include aspects of shared knowledge making, where the users are in dialogue with each other. Penman describes it as being a situated interpreter, or “to engage in sense-making in our relation with others” (2000, p.45)³ This is very much a Bakhtinian sense of dialogue, which recognises the essential joint (or social) nature of human relationships and language (Penman 2000)³⁴. This understanding of dialogue is important also for conceptualising how I see participatory media articulating with existing structures of Web 2.0. Participatory media is in a dialogue with Web 2.0. As such, without a solid understanding of what Web 2.0 is and where it comes from (the topic of another blog post), participatory media cannot be fully articulated. Suffice to say that Web 2.0 is both too restrictive and discursively destructive to play too great a role in underpinning understandings of participatory media.

Aside from being a shared process of knowledge making, mediated though it is, participatory media is also in a superior dialogue with theories of participatory culture. Indeed, it would be plausible to argue that participatory media are absolutely integral to the modern participatory culture. Here’s how Henry Jenkins describes participatory culture:

(Jenkins 2006)⁵

If this is a participatory culture, than we can assume participatory media to be those electronic tools that are used (as opposed to ‘enable’) to participate. In my research, the method and form of participation is that enabled by local government authorities. For Casey and Li, this is only effective if it is “sought early, often and ongoing and utilized at multiple phases of the decision-making process.” (2012, p.198)²

The implications of participatory media (in a participatory culture) include the rewriting of old concepts like citizen, consumer and audience. Clay Shirky puts it this way:

Just as social tools are creating members of the former audience, they are creating legions of former consumers, if by “consumer” we mean an atomized and voiceless purchaser of goods and services. Consumers now talk back to businesses and speak out to the general public, and they can do so en masse and in coordinated ways.” (2008 p179)⁶

The citizen too was “atomized and voiceless” but now has the ability to “talk back… and speak out”. How local governments respond to this, and whether/how they use participatory media to do so, is essentially the core of my research.

1. See my post on The Human Internet for some of my thoughts on that aspect.
2. Casey, C. & Li, J., 2012. Web 2.0 Technologies and Authentic Public Participation: Engaging Citizens in Decision Making Processes. In K. Kloby & M. J. D’Agostino, eds. Citizen 2.0: Public and Government Interaction Through Web 2.0 Technologies. Hershey, PA: Information Science Reference, pp. 197–223.
3. Penman, R., 2000. Reconstructing Communicating: Looking to a Future, Mahwah, NJ: Lawrence Erlbaum Associates.
4. See also Bakhtin on Wikipedia
5. Jenkins, H., 2006. Confronting the Challenges of Participatory Culture : Media Education for the 21st Century, Chicago. Available at: http://www.macfound.org/media/article_pdfs/JENKINS_WHITE_PAPER.PDF
6. Shirky, C., 2008. Here Comes Everybody, New York: The Penguin Press.