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Radioiodine Ablation

I’m having the first of two injections this morning of a very expensive drug, Thyrogen, ahead of my radioidine ablation this weekend.

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

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).

Up and Down Again

It seems the good spirits of my last blog post were a little premature. A shortish time after I had got through chronicling how well I was feeling, I noticed a letter in the mail box.

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.

What did you say?

“What?” has been Meghan’s favourite phrase this week, as I’ve had a very weak voice but still insist on saying things from different rooms or over noises like the dishwasher or television. Other than that, I’m recovering well. I’ve had some swelling in the last few days, and a bit of nausea to boot, but on the whole I’m feeling relatively fit and healthy.

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:

Pre-Op neck imagePost-Op neck image

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.
    Hospital Flowers
  • 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.

Blergh Continued

Predictably, following surgery I’m feeling even more unwell than I was last week. But there are some immediate upsides too.

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.

Blergh

Blergh. That’s how I’ve been feeling for the last week or so.

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.

Good Cancer

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