Hi Fiona, 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. ... View more

Hi Fiona, 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. Sarah ... View more

Hi Rubes1984, As likely you know, going through it is unbelievable, there's just nothing like it in the world. "Sometimes I looked at the world through naive eyes but now I am clearly seeing the world as it truly is and there are parts that frustrate me, excite me and plain confuse me." This statement reminded me of another thing about cancer - the experience takes away your innocence, the "veil" is lifted and you are exposed to things that you didn't ask to be exposed to and weren't prepared for, so the unveiling is very sudden. There are so very many layers to the experience of cancer affecting all areas of life, I guess why it is indeed so harrowing. And, you are (pretty much) alone to process the experience. I share my experience like everyone else here: to find commonalities and uncover fundamental truths, and to articulate my own experience in search of meaning and empowerment for myself. Hopefully we are less alone through the sharing. Sarah. ... View more

Hi all, I was pondering this last night in a dreamy state while nodding off.. What I came up with is this: when people say/said that I looked well it was painfully invalidating and denying of my experience. It also served to shut-down any discussion of my experience that might've supported my coping (via verbalising), because it made them feel uncomfortable. The comments - say - came from people that knew or heard that I was unwell, yet they would insist that I looked well - surely they knew that looks aren't everything I spent my time wondering. It is for this reason that I began fantasising about the difference having something on the outside of me that represented my experience might make. I imagined that this would prevent others challenging my experience as it was all out there in the open for all to see and undeniable; I was already so tired and traumatised, I didn't have the energy to stake my claims with people that hjad more energy than me so I guess the reasoning was that maybe having something on the outside would have helped to alert others of my condition. You know, like some animals change colour to warn others of their internal processes. I need to stipulate here that, I did not wish for validation mind you, it was my experience that people went out of their way to invalidate my experience. I found this utterly insulting. exhausting and confusing. A simple analogy might go something like "Oh, I heard you bought a car. Well, I don't see it so I don't believe you did". This would be a bizarre statement right? That's what I felt I was dealing with. Additionally to this, it was often delivered with a tone of superiority that I had come to expect from people that were well. In that case the analogy would go something like "Oh, I heard you were unwell. Well you look ok, and as I actually am well, I have authority over you and what you are experiencing so you must be in fact well, as you look well" Please note, I am pondering these things over time, and, as time has gone by and I have moved out of the stress and anxiety of survivor-mode, my brain is recovering its normal discriminating faculties and I am able to revisit and dissect my many experiences with cancer. I have without a doubt concluded that the trauma of the cancer experience was not only the premature face-off with death and the existential crisis that came with it, a great part of the trauma (for me) came from seeing a side to people and humanity that I previously hadn't. Finally, I'd like to stipulate too that, I am not being negative in anyway, I am simply relaying my experience and perceptions. I of course know that people don't know what to say and that they only want to help and they feel uncomfortable and they want me to be positive and... blah blah blah.... Yes, I am aware of these points of view. Cancer is such a complex experience and it affects all areas and levels of a persons life and soul, I find it helpful and more to the point, interesting to explore the experience in all it's depths pains and lessons. ... View more

Hi lnvs, hi all, this has been an area of special attention for me. I have wondered continually about the connection, and have viewed many a paper and article to support this connection. The connection goes something like this: Trauma=disruption/interference to nervous system=breakdown/exhaustion of immune system. Cancer begins as a virus, something that lives as a potential for all people. It is the immune system's ability to fight the virus that is key to "getting" cancer. If the immune system is in some way challenged in cannot do this. But, there are other things that can compromise the immune system too, such as digested toxins - ie poisons (food), electrical charges (wi fi and the like), microwaves... etc, etc. These all, in someway, provide the same results to the nervous system as a traumatic experience - essentially they are all traumas, all disturbing the nervous system, and thus immunity. Please keep in mind that this is a simple explanation of something more complex. ... View more

To all you poor darlings out there suffering the fear of losing the battle, or watching a loved one struggle on, it's too much for a person to bear, too much for the soul, it is understood. I am sure I am not going out on too much of a limb when I speak for others here but, we feel your pain, we really do and we are sorry, very sorry for your pain. God bless, may we be reunited with our loved ones again. ... View more

Yes! Yes! Yes - Sailor and Rubes. Exactly what I was trying to say. Then, when I say well, I feel like shit, they take it as having a negative attitude and no wonder I have cancer. HA HA HA!!!! Truly nuts 🙂 ... View more

Pamela - "I think we should all follow our gut instinct with this and say what we really feel we want to say." I agree with you in the ideal; however the practical was/is just not that simple. I lost friends, I didn't get jobs, I lost jobs, I was bullied at work, by family.. The analogy of being the weakest or sickly chicken in the pen being pecked to death, was a reality for me. If I wanted to avoid this experience, I learned to keep quiet. ... View more

Pamela - "Only one person asked outright at first sight." Your experience here really touched me, I do understand just what that blatant honesty can do; it's refreshing bringing relief, and it's normalising - yes you had been in the wars and experienced all the internal secondary challenges that being in the wars brings with it. In that one statement your experience was acknowledged on equal ground, from one human to another. I have found that some people are averse to extending that acknowledgement (for various reasons), and this is salt in the wound. You know what? When I went through the worst of it I actually had an amount of envy for those that had physical evidence of their experience. In my mind it was like a sign to those around that read on my behalf "careful of me, I am fragile and dealing with stuff", some kind of pin of that recognition. Not sure what I am trying to say here, I am still processing it. What I can say though is that my illness was like a deep silent scream, it was impossible to communicate my agony to the outside world, probably from trauma and maybe being quite young. Not that I ever wanted sympathy understand, I was simply broken and dealing with normal life would've been more accessible with allowances made for me - like they might be for any dis-abled person. I suppose, in my fantasy world, having an external symbol of my internal trauma might have communicated that to the world around me because I simply didn't have the tools otherwise to do so. ... View more

Harker - "They asked me why I was not at work during the day. I said I have some health issues at the moment and left it at that." Yes, that's where I leave it too these days. But still, in the past I have been bursting inside because of the principle; that it apparently cannot be talked about is wrong. I have felt that it should be up to me, having gone through the experience, to advocate for our group by standing strong and openly announce my experience; keeping silent being another way that the "defective" are repressed. Or so it seemed/seems to me. It was a battle though that often I could not fight in my condition, and I was often quite in need to be part of normal social events, consequently my principles were often forfeited and I kept silent about my condition for the sake of being accepted by the group and to rest in the experience of normality, if only for a few hours. When the query arose as to "why I was not at work during the day", or anything else that left me cornered to answering that I had some "health issues", I noticed that it was left up to them to make their own assumptions about what was going on with me, and and they did - mental health issues (depression or whatever) was often assumed (it being quite a popular illness at the time/moment). They would never, in their wildest imaginings, thought of cancer. After all, I "looked so well". So again, damned if you do or don't, a frustrating and painful quandary in my experience. Why should I be kept silent so as not to upset the illusion of perfection that their social event aimed to uphold? Wasn't my human experience just as valid as theirs - as anyone’s? I was younger at those times, and deeply affected by being isolated from my peers and what people thought of me, whether I belonged impacted me greatly and frankly compounded my trauma. Now in my 40s, I have come to terms with living on the fringes and can sit with society's imperfections, although sometimes still a little uncomfortably. However, I'm still not one to announce my experience for fear of judgement, isolation, or workplace complications when maybe I'd like too for the principle of awareness raising and morale advocacy. Sarah ... View more