thyroidandroid-blog

[thyroidandroid-blog]

glass shards

[thyroidandroid-blog]

From Far You Wouldn't Know

I see my reflection in the mirror about ten steps away from me. At this distance, you can't see a glimmer of the scar on my neck. There are two straight lines across the front. One is shorter than the other. It's from the oxygen tube used during the operation. It's not a wound. Just... a mark. The other, a longer cut just underneath it, is from where they cut me open. But at this distance, they don't exist. It's like they never happened.

At this distance, I'm a woman with her thyroid intact. A woman who never walked through horror. A woman who isn't feeling down without knowing why. A woman who doesn't have to take medication every day to stay alive. A woman who's neck doesn't still feel numb and sometimes hurt. A woman. Just a woman without a story.

[thyroidandroid-blog]

Woooooohoooooooo!

Finally, some hope.

After the fear, paranoia, and worries, I finally feel better. Blood test results were great. My thyroglobulin is lower and my tsh is a lot lower. Getting to a normal range now. 😊

It's so easy to lose hope when dealing with cancer of any kind. I found myself thinking: If I got cancer, then anything bad truly is possible. But there still is hope among the darkness.

Thank you, God.

[thyroidandroid-blog]

Coincidence?

It's funny how things happen but you might only make sense of them after a while. For me, it's almost two years. I never thought much of it, but I went through a period when my taste buds and sense of smell were shot. It seemed to happen overnight. One day, I'd love the taste of fried chips or the smell of a Givenchy fragrance, and the next day they'd be all wrong. The tastes and smells were like poison. This happened on and off. Until recently, just after my thyroidectomy, when I smelled the fragrance again and it was what it should have been! Is there a link between thyroid cancer and smell/taste problems? It's so weird.

[thyroidandroid-blog]

Does the fear ever stop?

I thought once I faced ugly cancer head on - with the op and radioactive iodine - I wouldn't be afraid of things like blood tests. I mean, I've had my freakin' thyroid taken out and had a drain put in after the surgery that was super gross, for crying out loud. And yet, I'm still shit scared. Perhaps even more afraid of doctors and more of a hypochondriac than before. I'm always afraid of getting the cancer again. Will that ever go away????

[thyroidandroid-blog]

I've been dreading talking about this

I’ve been dreading talking about my experience with radioactive iodine (RAI), but not because it’s such a scary thing in itself. It’s just a tablet that you swallow with a gulp of water and it travels through your body, killing thyroid tissue and cancer cells. This is important after a thyroidectomy because it’s impossible for the surgeon to remove 100% of all thyroid tissue cells - they’re microscopic.

But before I could get my RAI, I had to have a RAI scan to see if there was any thyroid tissue. I was so scared if this full body scan. Just the thought of lying there and being in a machine. I’ve been terrified of things like this.

But it wasn’t that bad. For some reason I was so stressed the day I went for the small dose of RAI I had to ingest as a tablet in order to have the scan 2 days later. (This is important so that it highlights any thyroid tissue so the scanner can pick it up.) I was crying on my way to the hospital. It was all catching up with me: I’d gone through an op, had my thyroid taken out, and now was facing scary RAI. But on the day of my scan, I became so chilled. It was so weird.

Again, I was lucky to have such a great doctor tending to me. The scan was only frightening when it came really close to my face. I had irrational fears of it getting stuck, but then I reminded myself my hands were free on either side of it and the doc’s assistant could just lower the bed I was on.

There was thyroid tissue found in my neck, nowhere else in my body, and luckily it was superficial so a small dose of RAI would work to zap it.

Despite info on Google, I wouldn’t have to undergo a low-iodine diet prior to receiving the RAI. It happened fast - 3 days after the scan, I was booking myself into hospital for 3 days of isolation.

Google told me I’d be handed my RAI from a doctor wearing a protective suit. Um, no. My doctor walked in and watched me swallow it, then told me to think of my time in isolation as a holiday. I could have personal items with me to pass the time.

I hardly read the books I brought or used my laptop. I was lonely - since I was radioactive I couldn’t have visitors. I was bored. I wanted to get out. I wanted to be with my boyfriend in the beautiful garden at his house, surrounded by his gorgeous cats. Time dragged on.

Luckily, I didn’t have symptoms from the RAI. No nausea and not much pain in my neck. It just felt a bit tender. The doc told me to eat a lot of sucking sweets. This is to protect the salivary glands which can be affected by RAI.

I realised that I’m not the type of person to become all zen in situations like this. I am anxious and I am ruled by my emotions.

But you know what? That’s okay. That’s who I am. I am not zen and I’ll never be. It’s just not me.

I had another RAI scan when I came out of isolation, to check how the RAI would work over time. Apparently it stays in the body for weeks. I can’t get pregnant for about a year because it’s dangerous for the unborn baby. The doctor gives me a script for eltroxin. I’m going to need this hormone for the rest of my life. But she says, “You’re going to be just fine.”

I hope she’s right.

The world looks amazing when my boyfriend picks me up and takes me home. Different, as I know I am.

[thyroidandroid-blog]

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[thyroidandroid-blog]

How to treat someone with cancer so they don't feel like the pink elephant with two heads in the room

When you have cancer, the last thing you need is people around you denying it. And some will. I get that they’re in shock but what’s worse than having cancer (besides for nothing)? People who claim that the doctors are wrong, the biopsy was wrong, it’s not cancer it’s just an infection…. o.m.g.

My family was (and still is) in denial about my thyroid cancer. Recently, I burst into tears about how shocking it is to think I’ve had cancer at such a young age, and one family member said “But the doctor didn’t say the word ‘cancer’.”

What???!!!!!! YOU WERE THERE WITH ME!

I get that people want to make you feel everything is okay but nothing gets on my tits more than someone trying so hard to pretend everything is fine and nothing bad happened, move-along-nothing-to-see-here. It’s infuriating! I didn’t want cancer and I’m not sobbing every minute, feeling sorry for myself, but don’t take the experience away from me. That makes it worse. I know I’m not defined by the cancer, but the experience of it brings a lot of emotion with it. Duh. By saying I never had it, you’re saying that I don’t have a right to feel what I do. That’s fucked up.

Then, a different family member heard about the symptoms I had when I wasn’t on any thyroid meds (more on that later), and said, “I have the same things and I have a thyroid! They should just take mine out as well!”

Yeah, really sympathetic. Way to go. Want the cancer too? Yeah, I didn’t think so. Because I guarantee if you did have it, you’d be crying all the time about how shitty it is to be diagnosed with cancer and how horrible it is to feel like your joints are stiff and your whole body is tensing up. You’d bite my head off if I wrote off your feelings then.

Phew, sorry for that rant.

I’m going somewhere with this, dear reader. And it��s here: cancer makes you see what people can really be like. I had some denial from people, as I’ve shared with you, but then on the other side of the spectrum I also had a friend who acted as though I were dying. His messages to me were filled with doom and gloom. I felt like he’d already written me off as dead before I’d been given a chance! Creepy. The best was when he suggested that my treatment plan (surgery, followed - perhaps - by radioactive iodine, yes more on that later too) was too good to be true. Um. OK. First of all, how can that be good???? I think he was expecting more drama, fireworks, maybe some lynching. It was like pitching a story to a movie producer and him telling me it wasn’t “out there” enough so he didn’t call me back. Although this friend stuck around a bit, he went awol during my treatment and now has gone back to our normal interactions pre-cancer. Yeah, just wipe it out as though it never happened. The scar on my neck? Don’t worry; we can just pretend I’m moonlighting as a pirate.

I’m not saying I want people to ask about my thyroid all the time, of course, but just to respect and try to understand - no, they can never understand, but just try to listen. FFS! Be a decent human being! Do you go to someone who’s had a car accident and tell them it didn’t happen or that they’re dying? No! So? Be normal with people who have cancer.

But it’s not just loved ones who do this.

It’s scary how the word “cancer” can even make medical professionals weird around you. I swear, there’s such a social stigma when it comes to cancer. I remember a woman working in the hospital where I’d tried to get authorisation from my medical aid for the op looked at me with shock when I told her I had thyroid cancer. Her face bore the same expression as if I’d called her a bitch. Then, another doctor’s receptionist had given me a tip for what to say to the medical aid and when she mentioned my cancer, she whispered the word like she was afraid other people in the waiting room would be able to catch it. SMH.

Can everyone stop doing shit like this? Can people just say the word “cancer”? It isn’t going to make it a greater epidemic if you speak about it. You’re not going to catch it. You’re not going to protect yourself from getting it, either. But you will make the person who’s going through it feel like a normal human being instead of a delusional alien.

[thyroidandroid-blog]

Sometimes we need someone to simply be there. Not to say anything but to let us know they’re on our side and that they care for us.

Unknown (via thoughtkick)

[thyroidandroid-blog]

The "best cancer to have?" Yes.

Papillary thyroid cancer has a really great survival rate, so it's often called the best cancer to have. That always makes me think of myself out shopping for cancer and choosing thyroid cancer because it's better. What a joke. It's still cancer and scary and you still have to go through treatment. Like removing your thyroid gland. I never thought much about what my thyroid gland did - so many functions are boasted about on its CV, like controlling metabolism and regulating heart function - and now it was going to be taken away. My thyroid function tests revealed my thyroid was healthy! (I mean, besides for the left part of it being slapped with a cancerous tumor). That made me feel worse; I would have felt better about having it removed if it hadn't been working properly. But I had no choice. It was either me or my thyroid. The surgery was a weird experience - my first time under general anaesthetic and as a control freak I'm still freaked out about that strange sensation of disappearing into dreamless blackness. I had to have what's called a total thyroidectomy instead of only removing the cancerous half. This prevented any cancer from returning and attacking the part of my thyroid left behind after surgery. I certainly didn't want that, so out with the whole thing! After the op, I was a little sore on my neck and it hurt where the drains were placed. Yeah, nasty drains coming out of my neck that hurt like hell when the nurse removed them - really, it felt like someone was driving a thick needle through my neck. It's strange how the mind is kind. For the majority of my time in hospital I didn't really pay attention to the drain. Only when it came out did it really hit me that I had had a drain sucking out excess blood from the op. Eeeuw. It also hurt when I laughed and I felt a bit... like I wasn't anchored to anything. It's weird. Sort of like feeling dizzy but not really. But otherwise, I was OK. The surgeon was happy with the op he called a clear excision and there were no surprises, like cancerous lymph nodes that needed to be pulled out. After a day and a half, I got discharged! I knew it wasn't over. I would be given no thyroid hormones for a while so my TSH levels could reach 30, enabling me to have a full body scan with radioactive iodine to check if there was any microscopic thyroid tissue left in my body. Not having a thyroid scared me. But the doc reassured me that I might just feel fatigue. I researched on the net that my brain's pituitary gland would be compensating for my non-existent thyroid gland, throwing hormones into my blood. It's incredible, but I still wanted those thyroid hormones - that I'm going to be on for the rest of my life. This felt weird to me, a person who hates meds and always feared chronic medication. But on the other hand, I'm also grateful that there are synthetic hormones to make up for the loss of the thyroid gland. I can survive without it! Thank God. OK, so maybe this is the better cancer when looked at like that. I was so glad to go home! I couldn't stand on my feet much - I felt weak and easily tired - but otherwise I was on the mend. It was time for days spent watching TV in bed and not working. Me, who never takes a break! But I knew it was time to be a little selfish and do what I needed for me.

[thyroidandroid-blog]

[thyroidandroid-blog]

God works in mysterious ways

I pray so much for a miracle. I pray that my tumor will disappear. It doesn't. Instead, I find myself sitting in the ENT surgeon's office, waiting to hear what is going to happen to me. He's the first doctor to actually ask me what symptoms I experienced with the lump in my throat. He's the first to actually touch it properly to see what he's dealing with. He's an amazing doctor. He tells me this is not serious. He says people hear the word "cancer" and think it's serious but this is curable. He schedules me for an op in a week or so. I cannot believe it but I leave his office smiling. I feel there's hope here. God might not have obliterated my tumor but he's definitely given me a different kind of miracle: he's placed the right person in my path. I can't insist enough on having a surgeon you feel you can talk to and who really listens and cares. It makes all the difference.

[thyroidandroid-blog]

Sometimes when I say “I’m okay”, I need someone to look me in the eyes, hug me tight and say “I know you are not”.

Unknown (via thoughtkick)

[thyroidandroid-blog]

Regrets

So I had cancer. I was scheduled to see an ENT specialist in a few days and I tried to stay as calm as I could. Who was I kidding? I was stressed. I cried. I worried I was going to die. I discovered that papillary thyroid cancer is treatable and five-year survival stats were promising: 98%. Thank God. Still, it's cancer. Don't get me wrong. I was so relieved it's what people call "the good kind of cancer". An op is the most common treatment, followed by radioactive iodine. There's no chemo. Thank God. I didn't really start questioning my life, meditating or ticking things off on a bucket list. But I did slam headfirst into my regrets. Wasting time. Being bored. Not appreciating health. Worrying about losing health. And most of all: Wishing for death. There were times in my life when I'd wished I could die. I even used to say I hoped I would. And as for birthdays, I always hated getting older. Now that I was faced with an illness that kills so many people, I just wanted to live! I didn't want to die! Getting older is a blessing. I promised myself I'd see each birthday as one, instead of being such a grouch. Just the thought of getting another year now seemed to me as priceless as gold. I wanted many more years, with the wrinkles and everything thrown in. Old people looked so interesting to me, so lucky. I wanted to be them. The week before my diagnosis, I'd been stressing about the fact that I'd put on a few kilos. What a fucking joke! Now I was facing the scariest time of my life that no stress I'd experienced in my life could ever match.

[thyroidandroid-blog]

Nothing prepares you for the "Big C" word. Nothing

So in my previous blog post I told you that I’m a hypochondriac. It’s true. I’ve been one my whole life. When I was 12 I thought I had breast cancer. (Turns out the “lump” I’d felt was really just a rib.)

But no matter how often I freaked out about various illness and disease, nothing could prepare me for hearing the words “you have cancer.” Even though I’d feared it for years.

OK - to be honest, I wasn’t told like that. My doctor didn’t sit me down and tell me I have cancer. He told me in the most HORRIFYING WAY possible. He called me with my FNA results the day after my test and asked if I was nervous. I thought, “oh yay, if he’s asking then I’m probably fine!” I said I was dying with nerves. He replied, “it’s not good. You have a papillary carcinoma. You’re going to have LOADS OF TESTS! Then they’re gonna take it out! Then TREAT YOU FOR IT!” All I could say was “oh my God. Oh my God.”

I dropped the phone.

I started running.

My mother’s voice could be heard as she’d picked up the phone and resumed talking to him. “Doctor, is it bad? Is it bad? But it will be okay, right?”

Her answers didn’t sound reassuring. I was running out the house. Running in the garden. I realised I didn’t know where I was running to and I couldn’t escape.

I have cancer. I have cancer. What? That’s crazy.

I looked up at the sky. It was going to rain. Perhaps it was the shock, but I thought how perfectly the sky matched my mental state.

My mother ran outside and said I looked like I was going to faint. She said I must calm down. How?? I was so scared and mad. All I could think was: I can’t believe I have cancer. I’m healthy. I don’t smoke. I don’t drink. I’m vegetarian.

But I do stress a lot. And I do have an anxiety disorder. But still. Cancer - and specifically thyroid cancer - isn’t in my blood. All the things people have told me about life is wrong. Random things do happen. I can’t control my health. I can’t control what my body does. I’m freaking out.

I do the one thing I know will keep me from ending up in the ER from shock and panic (and I must avoid this as I know I’m going to be getting hospital time soon enough). I call my amazing boyfriend who rushes to my side, God bless him, and manages to calm me down.

I’m so scared I’m going to die. I’m only 35?! I’m too young to die.

[thyroidandroid-blog]

Frog in my throat

I’ve self medicated a lot in my life. I gargled salty water for excruciating toothaches, i avoided hard foods for months when my jaw was so painful and wouldn’t open instead of going to a dentist for a steroid shot. I drank lemon and honey water when I had a sore throat. I applied watercress paste to the lump in my neck because Google told me it was probably a goitre.

Only, unlike the stiff jaw and cold symptoms, it didn’t go away.

I was a self-diagnosing Google doctor, but nothing could prevent what I realised had to be done, two years after first noticing the lump (yes, I waited two years) and after buying enough watercress to make a smelly carpet out of it: going to see my doctor.

Now listen, I hate doctors. Or to be more precise: I’m afraid of what my body will reveal to them. I’m also a hypochondriac. I blame this on my mother’s thick medical books I used to pore over as a kid, convinced I had all the life-threatening diseases within the pages.

But something happened to me quite randomly on a Wednesday afternoon. I had waited two years to see a doctor but now suddenly I had to see him. Now. Something was pushing me. Waiting another day was too much for me to bear. I phoned the doc and his receptionist said he was out doing house calls but would be back. Yes he was very busy in the afternoon(receptionist’s always act as though the doctors are rock stars on tour) but could squeeze me in. It felt like God was pushing me.

It was the quickest appointment ever. He took one look at the lump in my neck and barely touched it, then said I had to go to have an ultrasound and FNA immediately. While I asked him questions about my lump which he ignored, he was phoning a hospital and booking me for these tests and asking why I waited so long to check it out. “Because I’m an idiot,” I said.

I couldn’t believe this was happening. I thought he would have starred slowly, like with a blood test to check my thyroid before we entered the realm of needles and prodding. Medical foreplay before we reached the point of no return. But no. He went for the jugular - literally.

I was in a bit of shock as I drove to the hospital and minutes later was in a pale blue gown waiting for the doc to see me, tears in my eyes and a racing heart in my ears. I would never had dreamed up my day turning this way.

He did an ultrasound then said he had to do an FNA. A biopsy. They were testing for cancer. I had read about the test online and it had frightened me. My father had had a lung FNA once which left him weak and risked puncturing a lung. But thankfully, a thyroid FNA is nothing like that and much better than I expected. Yes, he stuck needles into the lump in my neck (I closed my eyes when he did that) and yes, he told me not to swallow - but only while he was driving the needles into me to prevent them from wiggling. All the Google research I’d done had been so incorrect. Fuck. The local injection was more painful than the needles. It felt like being at the dentist, only better because there was no numbness afterwards, and no drills. I told the doctor this and we laughed. I’m the type of person who finds humour in the worst situations and begs it to save me.

The procedure lasted about 10 minutes and then I was done. The results would be in in a few days. How would I cope? I was told I’d have a nasty bruise but I actually didn’t have more than a slightly blue patch. “Try not to Google anything until you get your results”, the kind doc said, after I confessed my Google addiction. “If you need us to recommend you to a specialist, we can.”

Only afterwards did I realise he already knew what was happening in my neck but couldn’t tell me.

I entered the purgatory of waiting for my results. Amazingly, I was able to sleep and work. I helped my father who was discharged from the hospital after a nasty bout of pneumonia. The distractions were good. “What is that?” My father asked, pointing to my neck. I’d ineffectively wrapped a scarf around the big plaster, grateful for the chilly weather in spite of spring’s advance . “They had to test the lump in my neck.” “You’ll be fine,” he said. I hoped so.