Sorry, mine posted same message twice, I'll take this one, edit and repost.
I'm reckoning Hodgkins is beige.. it really was very average and nothing says average like beige (generally, in comparison to other colours I mean, though I do understand it can be used with great versatility and a quite a practical, earthy colour - I don't mean it in this context however).
Yes! Good for you!
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Hey again Jenna,
glad my response gave you something.
The chemo-brain debate rages on (I think the thread on this site is probably called chemo brain if you do a search). I suspect there is reluctance from the medical industry to acknowledge its existence as per maybe under instruction from the (big)pharma companies. Maybe if the cat was out of the bag on the true side effects (big questions around that too) there'd be anarchy and law suits. It's just so suspect the manner it which it is so vehemently denied.
Thanks for saying my post was refreshing, I made a correction here and there, for fear of being shot down somewhere by someone for being "negative", even though I don't see it as so, but rather simply the reality. Again, glad it helped.
I don't blame you for not wanting to go to group, it was years and years before I thought I could face such a situation. Until then, attempts made filled me with fury and my body would shake and my mind would just shut-down. Even just passing the hospital some years later would give me the creeps.
I do believe there are some new and improved efforts and resources being made available at the Peter Mac centre, Bentleigh (at Monash) and East Melb. I understand there is a focus on post treatment support services, if you're interested (maybe their website?).
Otherwise, continue to stay in touch here and explore over time from the safety of your pc :)
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Yes, I can understand your meaning - of course it gets better right, that's because things aren't shockingly and frighteningly terrible anymore. But things are not necessarily great or good.
We wonder about the chances of ever return to who and how we were prior, and obviously this is a huge confrontation when there are physical changes to adjust to from - say - surgery, which of course you can appreciate. My thoughts are that you don't ever get your other self back though, when I think about it, the sarah that was there before this experience is not here now, but, there is another one, and probaably a more authentic one. Perhaps grieving for the loss of the old self is useful? Maybe also though, for the lost years, and lost future that those years might've brought too - eg, if you were young you may have been at uni, or had a family etc that you may be enjoying now, or life may not be a continual difficulty, again - say for example, because you would now be better off financially due to higher qualifications.
There are so many factors, and many potential losses - family, jobs, friends.. travel, fun.. so much.
I believe that my mind will never be the same, that my mind was lost. There is some discussion around about chemo-brain. While the chemicals for therapy that are used are super strong, and undoubtably damage brain-cells (imo), I also believe that the trauma of the event brings irrepairable damage to the brain. Such is the nature of trauma. What the ratio is between the damage of the trauma and the chemical effects cannot be speculated on, but it is my opinion that both elements leave their mark.
I hope you find others here to explore and heal with. It seems you're reaching out now to grow and heal again (from what little I can tell by your post). That's a good and strong step in itself. It's late here, I hope my post helps a bit, if only to encourage you to keep on keeping on! There are silver linings if you squint ;)
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Hey! I am trying to respond to your chemo brain post - it seems youve posted it under an event? This "event" seems to have/maybe has expired and I cannot respond. Or I am doing something wrong.
Anyhow.. just wanted to say that yes, chemo brain is definitely real, hang in there, it gets easier though I don't think one ever returns to normal being forever changed in the brain.
Also, I had non hodgins too - you both had it how strange.
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Any new thoughts about Lance with the recent drug exposure and consequent media frenzy?
I've found it interesting to hear everyone go to town on him, some labelling him as a tyrant, pathological lier and even a psychopath.
I have pondered on the likelihood and degree of mental illness, in particular PTSD, post his cancer experience, that has possessed him, or exacerbated personality tendencies to push to extremes.
In my experiences, once gone through cancer, the world becomes a very strange and surreal place. I can see how it is possible that values, morals, ups and even downs become completely void.
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sorry if it's too late to aswer your question - were/are you asking about high-protein diets?
Why not just good quality meat? From what I understand about cancer, there's discussion that sugar is a no-go, so maybe not any sweets (Sustagen).
Hope you staying strong.
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I just saw your note, I'd like to know how you are going? I am sorry you got no response with your initial post, I hope you ok.
So much for one (two) to cope with. There is no reason (it seems, god knows I've searched) why these things happen, and why so much to some, but nothing to others. Since my experiences I don't like the concept karma, these things - sometimes really terrible things - happen to people.
Wishing you both support and courage on your journey.
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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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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,
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Cancer Council NSW would like to acknowledge the traditional custodians of the land on which we live and work.We would also like to pay respect to elders past and present and extend that respect to all other Aboriginal people.