I'm Fiona, a single mother of two children (12 and 9) and I have survived Thyroid cancer. I had a severe case, as it was misdiagnosed in 2007 and thankfully found and correctly diagnosed in late 2010. I have had my whole thyroid, 66 lymph nodes and tissue surrounding the back of my tongue removed. I was given a life expectancy of 10 years and i'm now 2 years into that expectancy. All this being said, I am happy with life and like you all, I'm a fighter..and I'm quite the stubborn one at that.
My day to day struggle is maintaining my weight. I work out a minimum of 5 days a week within my local gym and eat rather healthy. I've gone from a small size 12 clothing size, to a large size 18 since surgery. This is mainly due to the fact my thyroid replacement medication needs to remain as a low dose to aide in the unsuccessful return of the cancer. My question is, has anyone in this group had thyroid cancer? And, if so, how do you manage your weight?
I hope you're day today brought many smiles.
I've had that! What do you want to know? It was hell for sure. I am 41 now, I had it early-mid 20s - cant actually define as, with me also, it was diagnosed late. Mind you after going to sooo many doctors and psychiatrist etc, who all diagnosed me with depression. Even though my insistence was that i was not depressed just super, super tired. It was a surreal experience, watching my body and mind just basically breakdown over the years. And sooo tired. There's just nothing like it.
My thyroid was removed around 30. You probably know the story from here :(
Good to hear you doing ok, but still, the hangover is truly a shocker.
Hi Sarah, thanks for your reply. I'm sorry to hear you have had it too, but it's comforting to know of someone else.
How do you manage your weight? Have you had issues with gaining unnecessary weight from it all? I have loads more questions, but these are good for a start :).
Ohhh, weight...?! It was crazy, really crazy.. For years, I was puting weight on, but, and as you might've experienced, it was funny weight, not the type I had ever experienced; I virtually stopped eating altogether, but was still puting it on, but again, the "funny" kind, a kind that I cannot explain, but I'll say i was "puffy" or, maybe it was fluid?
As mentioned, I was not diagnosed so I just thought "oh well, this is what everyone means about puting weight on when getting older". I threw out all my clothes, which didn't fit any longer, and nothing I tried anymore seemed to look right either!! My skin had aged incredibly, becoming dry and chaffed, and I had some awful acne.
Now, I am back to ok as far as weight goes, but I have undertaken heavy and intense periods of exercise for mental and emotional wellbeing, and consequently, I have got to a normal-sized body.
Having said that, I did lose, what could be considered the best years of my life (the physical lethargy and mind damage from loss of thyroxin to brain is like nothing that can be described). Obviously loss too of career, social life, and family opportunities, so pretty sad for me. But, then again, some people have been left with less. Very difficult to measure these things if one was to attempt to do so.
Just reading over your situation again - it hasn't been long (2 years), so maybe more time is required for you until your body settles down? But, on the other hand, you are certainly working out a lot. Though, having said that too, if this weight problem is due to low thyroxin(meds), I would think it will be near impossible to shift. As far as I understand, this would be due to the fact that thyroxin regulates the body's metabolism and no amount of exercise can off-set it, if it is programmed low - as you say is your dose.
Consequently, I would also speculate that pushing your body to exercise a lot when it is otherwise programmed hormonely as without the required amount of fuel might be putting it under strain, and conflicting instructions. Just my thoughts.
That you have been given 10 years is a lot for me to contemplate and I will do so in between posts. I really feel for you.
Well done for getting your body shape back, I understand how hard that would have been and still would be to maintain it. The years leading up to my diagnosis, my weight fluctuated up and down at big rates. And yes, like you, it was an odd sort of weight and shape. My weight now is not decreasing, but increasing, and yes to the low dose of thyroxine. I had an emotional afternoon Friday just gone as my GP is still sorting out a dose that meets the surgeons requirements (to hope to stop the cancer from returning).
I am pushing myself too hard, and that has been out of shear distest for my body gaining weight. It's days like today that remind me that I'm not as energetic as I was before my thyroid malfunctioned. I have dusted and vacuumed my bedroom and helped out (sitting alot and handing things out) at a Camp Quality family Christmas Fun day today and I'm utterly exhausted.
I'm not a complainer in the least, i'm quite the positive soul. But, having someone respond (such as yourself) with so much understanding of how our bodies fail us is such a relief. My friends are either in denial and push the fact that it's all diet, or simply get cross or quiet about the prognosis and in disbelief. You've certainly lost a lot! It is ludicrus how the world reacts over something that is mostly non-preventable. My boyfriend after surgery slept with my than best friend. Having no contact with my immediate family, it hit hard. I bounce back well, and come back stronger in life. My belief is, everything happens for a reason, and I believe I am so much better off with any of them. The hard part is caring for my children on days like today when I am utterly exhausted. They are more the carers than I am, and as a devoted mother, that brings tears.
Thank you again for taking the time to respond Sarah xx
I hear what you say when mentioning that you are not a complainer, neither am I. When I did begin to speak up about my illness however I was certainly labelled as such, family and friends slammed me down as feeling sorry for myself and not getting on with it. It was the most surreal experience of my life (apart from the first cancer I had before that :)), I remember being utterly terrified as the people I needed to support me turned on me very quickly and I was afraid I was going to die.
I recall being just sooo tired.. but, I would describe it at the time that it was in my body; although I had the will and drive, I just couldn't command my body; we were no longer one. It was a really clear illustration for me at the time as to how the mind and body ARE normally one and work together - ie, if the body is tired the mind normally is too. Not so in this case,. they were pulling in different directions.
I remember too being so frustrated and tired. One of these times I recall was after just changing the sheets which took me ages and I couldn't move quickly and was exhausted afterwards. Another time I had to call my friend who lived close by as I just couldn’t carry the groceries home from the shop. The frustration was excruciating, and all the while people looking at me and stating that I was being lazy or *whatever label* they wanted to brand me with. I've never been lazy in my life and they really aught to have known better. I have not had any pleasant experience with family or friends at all. The kindness and compassion I encountered was with complete strangers - doctors and nurses mainly. This reality still traumatises me, and regarding this, I will be starting a new thread on family/social issues on this site soon.
But like I say my mind was another story. I couldn't process things - conversations, a paragraph in a book, information/instructions. Also, I couldn't make any decisions!! Real basic stuff too, like what colour top I was going to wear for the day; it was agonising. My mind simply had no preference - it didn't care, and it had lost all discriminating capacity to make decisions, again, surreal, and very lonely. I remember on occasions getting a friend over to decide what clothes I was to wear to work - I was regularly hysterical from shear frustration and exhaustion, and confusion as to why I couldn’t make basic decisions. That was at the beginning of the illness, and I was going to doctor after doctor to therapist with the diagnosis of depression, which needless to say, made it very much worse as I knew that I was not depressed.
The only way I can describe it is to say that my mind was compleeetely f**kd. But, may I point out that "I" was there, observing it all being always so bored (being unable to do anything), and frustrated from being in a body and mind that just wasn't functioning. Again, a surreal experience, but one that remains with me - I am convinced that there is more to us than just body and mind. That "I" remains with me, still observing the goings on around/in me.
Some years later, after I had moved interstate to be with the one last remaining family member as I simply could not look after myself any longer - the one remaining family member that hadn't grown tired of my ongoing crying and complaining of how tired I was.
Some time after moving, I was pushed through completing my studies. This was from shear determination - pushing myself, and pushing myself. At tafe I was sleeping in the library at lunch from exhaustion. I was simultaneously copping abuse and general disdain from lecturers as I was asking questions that I hadn't retained answers too, so, bullying there too, as by then too, I was very "different" to everyone else - people could probably sense that I wasn't quite right.
During those studies too, my boyfriend at the time began having an affair, complaining later that I just wasn't the same person as he met, that I was always tired.
Anyhow, I excelled at my studies from shear determination and pushing myself. There's nerver been anything lazy about me, something my family should know. However, what I've learned is that if people want to let out their abuse and ugliness that lies within them, one of the best ways is to unleash it on someone close by who is ill and clearly cannnot fight back; (some) people hate perceived weakness, and I have witnessed the hate that people feel for the ill.
So yes, studies were a huge achievement and I was very proud of myself - it being so important to me, as was something to live for as my work gave such pleasure and joy. Later though, after studies I missed opportunities to compete in my field as after studies came the diagnosis, the operation and treatment bringing with it all the more pressing practical and emotional issues associated with such. Omg - the hell of coming of thyroxine for treatment!! 6-8 weeks of nothing but hell. And watching out the window powerless, as your life goes drifting by.. Omg, so painful.. And that for me has been the real price of this illness.
That you have been given 10 years I've been pondering. In my hearts of hearts I think I wont have forever either. From what I understand it is policy (maybe not exactly policy but some kind of process), for meds not to tell patients as to how long they have to live. This is based on thoughts (evidence?) that, it's better for the patient to not know otherwise they wont strive/exist to the full potential. Or something like that. I am sure you know what I mean. Anyhow, I have been trying to get it out of my doctors for years; they just look at me facetiously 🙂 (I love my oncologist btw. Just thought I'd mention :)) I really feel for you anyhow and I'd swap places with you if only I could. I have no children yet you do, and really, I don't care much for this world anymore (without sounding depressed), the pain has broken my heart and I have missed all opportunities. I am so sorry for you to live with that information.
I have also been pondering on your boyfriend and how damned awful that is - I just cannot get over the cruelty of this world lately, and that situation you experienced is a good example of the cruelty that I speak of. I'm sorry and I truly feel deep compassion for you and how it must've broken your heart, possibly your mind too.
Back to your weight - I just don't know what you can do about that, I really don’t see a way that the weight can be lost unless you up your dose. You must still be really tired too - what about your mind? Your mind must be a bit f**kd, no?? I don't understand the dose - I thought the dose was the cancer suppressant, and the higher the dose the more it suppressed the cancer? I don't remember any of it; it's all a blur to me and no matter how many times the doctors explain it to me I never get it, I think its trauma related - my mind cannot take it.
Anyhow, as intended I've written quite a lot here, and it is content-rich and intense stuff, hope it hasn't bored you 🙂 No, you're not alone in what you are going through, it's amazing how we struggle to understand and ask "how much of this is me and how much is the illness?". Reaching out can help with this, it has helped me. I blamed myself for so many years, believing all that people were saying about me, I now stand by myself with a sense of honour and protection for who I am more than ever.
Take care Fiona,
It has been a hectic past week. Aside from being fairly fatigued, would you believe the washing machine decided to blow a part.. which meant a few days of reminding myself how lucky I am to have working white goods. Nothing like a few days of hand washing clothes to remind you to not take electronics for granted ;).
Because I don't let on how I am truely feeling every 'normal malfunctioning' day, when I do finally let things be known to my immediate cirlce of people they find it hard to comprehend, let alone believe. In just the past week I've had people ask how I am and after hearing, they respond with a knowing laugh suggesting that it is just a mere form of aging or that it is a normal response to doing so much every day. It is very disheartening, but not worth the constant battle to correct the misconception.
I've gone from a quick witted, intelligent spoken and energetic bubbly person to this now..a snail brain the majority of the time, and I don't need to fill you in on the rest.. our bodies speak for themselves.
What original cancer did you have? I can't comprehend what that would be like to have had one form of cancer, and than have to work through another cancer form.
My prognosis is based on evidence and I was fortunate enough to have a highly regarded surgeon who specialises in thyroidectomies etc. Here is his website and more information if you wanted further information http://drstansidhu.com/Papillary_thyroid-44.html .
I'm sorry to hear you don't care much for this world anymore. When it all gets too much for me, I like to put myself amongst nature, away from the rat race and human population and just listen. Something I need to do more of at the moment.
As for my ex-boyfriend, it wasn't meant to be clearly. His loss and his guilt to carry in the end, I don't envy him for that!
I have not written for a few plus days as I haven't had the brain power to sit and write decently to you. So, please forgive me if this has gone around in circles from time to time.
I hope you're doing well and looking forward to some form of a Christmas celebration xx
You are not alone with the fatigue problem. I and many others on https://www.facebook.com/groups/45891977828/ (Survivors of Head and Neck Cancer)have the same problem.
Many cancer patients suffer from cancer-related fatigue (CRF) both during and after their treatment. CRF can arise at any point in the course of the disease and can be either self-limited or persistent, sometimes for years. It gives rise to a vicious circle of impaired physical performance, avoidance of exertion, inactivity, inadequate physical recovery, helplessness, and depressed mood. Its hallmarks are tiredness, exhaustion, and lack of energy; it can impair performance so severely that the patient is unable to work. It is associated with increased mortality. Cancer patients are hardly ever systematically asked about the symptoms and signs of CRF. The stress and impairments that it produces are often inadequately appreciated, and the opportunities for treatment often neglected.
Cancer-related fatigue is a serious problem that impairs patients physically, mentally, and socially. Physicians need to know how to recognize and treat it.
If you can connect with like-minded people, I find the ignorant ones become less of a burden.
Warm (((hugs))) Pamela 🙂
Hi Pamela, hi Fee,
Pamela, I think specifically Fee is referring to the (low) thyroxine levels that she is on.
Thank for the link and the info, I'll take a look. It's all very interesting and all helps 🙂
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