Hello all. The last time I was here, months ago, I had great hopes for the future and a general upbeat nature. Since then, it has been a bit of a whirlwind of ups and downs with some amazing highlights but some serious low moments too.
A few days after my radioactive iodine treatment it was pretty easy to feel ready to get my life back. There was certainly an adrenaline like feeling flowing through my veins of regaining control of my life and body. It’s the sort of thing we hear from people recovering from all sorts of illnesses in real life and on TV; it made me appreciate living so much more and I want to make the most of every second.
But being told we are cancer, or illness, free doesn’t magically make everything better. For some there are changes that will take time to get used to seeing in the mirror or waiting for them to change again; hair loss, weight gain or loss, breast removal, scars and so much more. Even the smallest scar can leave people pausing in front of the mirror, running their hand over it and trying to find a way to cover it up. For others it isn’t a change in appearance, at a glance the person looks average and healthy, but having to deal with their whole body system and routine needing to change as a result.
Thyroid issues are easily missed unless a specific set of bloods are done and get sent to the right specialists. Symptoms can be linked to so many other things and without looking at them all together, usually a challenge with time restricted doctor appointments, they are easy to miss. Fatigue, depression and weight changes can all be linked to environmental factors and almost everybody could attribute it to some form of stress or general mental health issue. They can go on so long that a person slowly becomes a shell, unable to function and when the problem is found end up feeling a bit lost in trying to locate their normal and healthy again. Even when the problem is identified it is hard to know where thyroid issues end and other issues begin.
If you go to a doctor saying you feel sad, depressed, fatigued etc they are unlikely to do bloodwork to see if there is an underlying problem. It gets taken as a psychological issue and you get given medication and put on an extraordinarily long list for therapy. But when a thyroid problem, in my case I discovered I had (or you could still say have because it never really goes away) Hashimoto’s an autoimmune disease that attacks the thyroid and causes it to act in irregular ways, gets diagnosed and it turns out that mental health can be impaired as a result it becomes impossible to wonder how much it actually impacted.
Sadly, discovering this during biopsies of my thyroid during it’s two stage full removal didn’t magically solve my mental health or a stream of other issues and for some things made it worse. I might technically be in the clear of cancer but the ghost of it stills lingers on my shoulder as it does with many survivors.
It turns out your thyroid is sort of like the battery of your entire body. Without it and the right level of hormones it would normally produce you feel exhaustion like never before. Think not sleeping for a week, running a marathon and not sleeping for another week. Waking up in the mornings feels like an assault course; having the medication and being all hazy and in and out of it for a good hour after taking it and not being able to have coffee to keep you going means you basically have to fall back asleep until it kicks in. This is one thing for people with no other health conditions but throw in something like Marfan Syndrome where you need beta blockers to slow things down before you can get on with your day and they take an hour to kick in, and you can’t have them within an hour of your thyroid tablets kicking in, it makes getting up not only feel like an unwanted chore but absolutely impossible.
At least you are getting a lot of good sleep right? Catching up for all those late nights and early starts over the years. How very wrong you are. You will never feel rested again and instead will wake up from night sweats and vivid dreams, often nightmares, and often more exhausted than you were to begin with. Your mind desperately starts to fight the urge to sleep because you can’t put your sleeping brain through all that for another time. It reaches the point where you get down to sleeping two or three hours split through several naps because the fear of what happens when you go to sleep becomes so huge. And even if they do get you on that right medication dose it can change over time and start it all back up again. You need to magically overcome all your fears and past trauma quickly or thyroid induced sleep delusion will kick in very quickly. Goodbye another inch of sanity.
Do not have an 8am start job that is over an hour away as it means you have to set your first alarm at 4:30am just to start taking medication and trying to wake up. You will sleep through and turn off all ten alarms and miss work or be late several times. You will try be clever and change your start time to 9:30am but your body still struggles just the same to function. If you weren’t already depressed before diagnosis or during treatment the feeling of not being able to function like the most average of humans will at the very least crush your soul.
Remember that even when that hour has passed to enjoy that coffee you still need to wait another three hours to enjoy a bowl of milky cereal because, even though you need calcium supplements after your parathyroids got damaged during surgery, you have to wait four hours after the thyroid medication for high doses of calcium. If you have those low calcium tingles in the morning, the sort that cripples you in pain and makes you stumble on the way to the bathroom, well tough luck. This is your life now, you are just going to have to chew those horrific banana flavoured things like there is no tomorrow for the rest of the day and hope eventually it offsets the morning pains.
Suddenly having to go through a low iodine diet for a while around radioactive iodine treatment seems like a breeze because we all told yourself that the diet was just temporary to get ourselves all fixed up. Now it’s just a list of rules of when things become acceptable to eat and drink but if you still have something like the hashimoto’s in your system then there’s further recommendations to follow again. You can’t just nip out for breakfast, you have to check menus in advance and watch everything you touch. A nuisance for the average person, a further soul crushing experience for somebody that was previously soaked in foodie things.
Even if you do go out for breakfast you will feel like you look awful. It will take the doctors ages to get the right level of medication so weight changes, usually weight gain through under medicating, are likely and with under medicating comes dry dull skin and brittle hair and nails. You will go to brush your hair and end up with never-ending strands of it all over the place and a mystery as to how any is left on your scalp, you will catch yourself in the mirror and see a dry peeling patch of skin on your ear whilst running your hand over the other to discover discoloured dry patches, you will rub your nails from your anxiety and they will splinter down the middle and no amount of dewy foundation and highlighter seems to bring your puffy dull face to life. Most people wont be able to see the changes but to you they are huge and sadden you and make you hate your body more than you already did (something you never thought was possible).
In a months time I need to resume being an average functioning adult with a job and needing to make funds to have a roof over my head etc but four months later I’m more drained and struggling than the days after surgery and after treatment.
There is one thing I can be thankful for though. At the end of my last post I said “I just hope there are some people along the way to nurture and protect me” and there really are. There are some real gems in my life that I am thankful for that support and help me every single day.
The above is a snapshot into the reality of struggles post thyroid cancer and how it impacts on daily routine and ability to function. Each person is different and each recovery is different but this is my story; one of frustration, disillusionment and sadness that I have become a shell of the already depressed shell I once was.