Hi Fiona,
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,
Sarah
