Clarification

[Jules2]

I just want to clarify a couple of comments i have made lately. I am happy with the clinical treatment i have received since i have been diagnosed. Although there are gaps in provision of service i dont relate those to my clinical treatment. To me these things are simply things that can be improved upon to make life easier for those who are diagnosed with cancer and their carers/family and friends. Leading up to my diagnosis i had seen 6 gps and no one picked up on that i had cancer and in fact one actually told me it wasnt. yes i get angry at times when i think about what has happened to me and especially so when i find out i had 2 classic symptons. However, gps are only human and they have a lot of knowledge to get their heads around. So my anger pretty much dissipates whenver i think logically about the situation. Anyway, i just wanted some clarification as i said recent comments may have people somewhat confused as to where i sit with things. Not that it really matters i suppose. 🙂

[Mrs_Elton]

Hi Julie, I feel that you can rest assured by the 'lack' of responses that no-one else felt you needed to clarify anything!! So....you were right....it doesn't really matter. I have to say that feeling angry that 6 gps didn't diagnose your cancer seems like a pretty mild response to me, and one that is 100% warranted. Yes, they are human and yes they can't know everything, I just wish it had been different for you. Jill x

[Jules2]

Hey Jill You are probably right ... is just me being me and not wanting to sound like a hypocrit. lol Thanks for your wishes. Have just read your last post and am thinking of you lots. It is difficult to try and do normal things when you are surrounded with not normal circumstances. I hope you all enjoy a swim and can just have a small break from everything. :) Julie xoxo

[julie190270]

Hi Julie, I think u r a wonderfully calm specail lady,Alex and I saw 5 different gps and they all kept sending us home telling us there was nothing wrong with him for 7 months,yes they are only human but we trust our lives in their hands so surely they should be updated on the symptoms of different cancers,even if they have to bloody google them like we did ! Anyway hope ur having a good day take care and u know where I am if u need to chat Julie x

[Jules2]

Hiya Julie Thanks 🙂 ... i do struggle at times and yet when i have a more realistic moment i sit quite happily in that they would have done if they could have done. Perhaps its a bit like a surgeon that makes a mistake ... usually dire consequences and yet as humans we all make mistakes. I think the thing that will really help me turn the corner is if i can get some sort of education happening on early diagnosis. Just another thing that has been going round in my head. Boy the cancer council are going to duck when i contact them. lol Just kidding!! Glad to hear Alex was able to go to work. If he can get bits of normal life happening along the way it will most likely make it more palatable to him. Difficult for someone so young thats for sure. Ok you take care and will talk soon no doubt, btw i dont have msn. Julie xoxo

[Mrs_Elton]

Julie, I love and admire your desire to make things easier for those who follow behind us, regarding early diagnosis, PATS etc. The Cancer Council will have a force to be reckoned with!! Perhaps you can draw on some of Sailor's wisdom and experience to maximize the benefit whilst minimizing the effort, meaning (cos I'm not sure that's very clear!), work smarter not just harder to achieve. No use re-inventing the wheel and all that! Go get em girl! Jill x

[Jules2]

Hey Jill Thanks and wierdly/funnily? enough i was sitting here as i got the computer going and watching (half) a program on tv about politicians and my letter started to formulate in my head. Have kind of hijacked sailor already and asked if he would look over the letter first. I am sure the cancer council will take it onboard nd offer their support (not trying to put words in to their mouth ... haha) Who knows where it will go, all i know is that changes do need to be made. When there are instances of people simply not accessing something because its just too hard - its wrong imho!! Thanks for you support ... it is appreciated. Julie xoxo

[oldhippy]

I remember the poster you are using for your avatar - cool. Had this ridiculous argument with a gallery owner in Canterbury Rd over one, signed, numbered etc etc. Cant even remember who did it. Rang up the National Gallery and they told me (very unofficially) that it was overpriced and the artists wasn't known about anywhere cause they looked him up. Or something. Was a long time ago anyway. But I still like that poster, a modern, cooler Daffy Duck.....

[Jules2]

Hey oldhippy I cant remember the name of the painting / avatar? but it was in a gallery somewhere. Someone once emailed me with the info ... chemo brain strikes again perhaps? :) Julie

[oldhippy]

Yep, stuffed if I can remember who did it. I saw the one I didnt buy(?) for $250 in a Gallery in Canterbury Rd, Box Hill, Victoria (wherever you are) There were other paintings of ducks too. Same duck but. - vague, chemo induced haze spreads out before me.......... (Its a great excuse for being vague, isnt it) re Clarification - yes, taking that long to diagnose these things would annoy you - it did me, but that was partly due to my not ringing up and getting the test results (had a good idea what they would show) eventually my lovely GP came round. Unannounced Not a Good Sign. I was up on the roof, fixing a leaky tile (still needs to be done, stuffit) and wasnt all that keen on climbing down to chat. I got no quibbles with care - been fine, oncologist smiles beautifully and as its all a primordial soup anyway, cant expect him to give me a date/time. Went through a real shit time a few weeks ago - felt totally awful, weak as a kitten, sick, totally pissed off cause I didn't know what was going on - woo woo? - whats this caused by? - am I just crook, or is it......(dramatic music here)....something.....else....... (Cant have been the cans of Bundy and Coke, they were on special, ..really, you jest.) My current Theory of Oncologists leads me to think they see you and then decide how your traveling, and try to whack the feral cells a bit. Because the little buggers can further mutate, so you have to do it a few time I think - he DID mention plans B to G Hey Jules, - you probably figured out I aint a computer person, its like something out of bloody Wagner to find out where the any key is, or where my rants should go. Analogue, fine, no worries. If I have breached etiquette - or whatever - let me know.

[Jules2]

Hi Oldhippy I think we all bury our heads in the sand a bit when going through the cancer experience. I think it is a way of our bodies protecting ourselves and only allowing us to deal with things as and when we are more emotionally able to do so. I still suffer from chemo brain at times and mostly when i get physically tired. Chemo can do some wonderful things to our bodies and yet it can play havoc on our bodies at the same time. No wonder our heads have a hard time getting around that. I liked my oncologist and I am quite sure it helped as I have heard of others that have not clicked with their onco blokes/women and requested a change and/or just put up with it. I am sure there is a plan and I think sometimes as a consumer (I hate that word as I normally choose to consume and I don't believe I was given a choice in this instance) / patient that we feel disengaged from the plan or process that we are going through. I hope you are feeling a little better now. I found when I was quite ill from my chemo that I just spoke to my onco bloke and he adjusted things and away we went with me feeling much better. I found it was pretty amazing what they can do to make us feel ok when we are being hammered by chemo. Your GP sounds like a special person. The first time I was diagnosed with cancer (22 years ago now) I had the most amazing gp. He sat me down and was quite frank in his discussion, which I think took a lot of courage on his behalf. Not easy to tell someone with a six week old baby that they might only live for a month. He then told me on the way out to make another appointment to come back and see him after the weekend and we would go through everything again. Which we did and I found was very helpful. As he said to me at the time "you will not remember much of what we are talking about right now and you need to know these things" Going back to see him again was beneficial and I was more able to take in what was being said to me. You will find your way around the site eventually. I wouldnt stress too much about where your rants should go and a lot of people find this site difficult to navigate around. :) Julie

[oldhippy]

Hi Jules, yes, I think we are trying to say the same thing, but it sorta comes out weird sometimes - at least for me, at any rate. There aint a guide book for all this. So saying that - sitting here listening to Bach, more and more drawn to Bach lately - is that a recognized chemo side effect? - I wonder.. You said... Chemo can do some wonderful things to our bodies and yet it can play havoc on our bodies at the same time. No wonder our heads have a hard time getting around that. And your quite right, things get pretty weird, wouldn't be at all be surprised to find Orcs in there somewhere..and the weird thing is, its a bit of an adventure, the whole thing. Not one you would choose, but a Genuine Adventure none the less. Interesting, at least. Horrific sometimes too, stuffit! (My head had trouble finding its way around anyway before this C crap, so, wooooo !!!!) Daughters partner came over, we climbed into the ceiling to check and modify the gas heater thingy - was ok, lowered a drain hose a bit to improve things. Hand Crafted etc etc - (twas, I machined bits of brass (from hard rubbish) for the fittings...)that wasn't all that long ago, really - took a while, last winter the bloody heater was having a good go at coming through the ceiling and rampaging through the house..got a quote to fix it, said "stuff that" so did it myself. Took a while, its amazing what you can do with big sheets of cardboard for a temporary ceiling... you aint got a ceiling...and no heating.... - Involved many adventures, remember dragging home a huge sheet of particle board laminate - had to walk down the centre of the road with it balanced on a trolley - I had waited till 2am, on the premise it would be less noticeable. That made a new floor up in the roof,nice big storage area now. Theres some great timber going to waste down the St. - we live in an area thats being dragged upwards, nice houses being bulldozed to put up a McMansion. So, if your quick and nimble enuff, you can sometimes get into the wreckage at night, grab what timber you can, big old hardwood from the 60's, 4x2, 4x4, 2x1 tiles carry battens are good for soooo much - garden stuff like decent beam poles.. comes up pretty good if you machine it a bit, makes handles, that sorta thing. - good stuff to build with, made tank stands, tables, fixed heaters, braced ceilings -lotsa things- cant remember....... Been doing this all my life, since I was kid. Finally got most of the tools to do it, took a few years to get them. Wont give you the Old Fart rave. Was green before it was spun.... If I am ever arrested for "stealing" hard rubbish, I will invoke the sacred rituals of my tribe, the Anglo-Celts, (alas,now sadly in decline). Some of our Dreaming remains amongst our elders - chief among them the tendency to say "F... Off" to idiot things that get in the way, like...Duh..!!! stealing Hard Rubbish, you Gotta Be Kidding - thats a crime! - this our ancestral custom, it deserves respect. Tread lightly on the earth, it feels your footprints, look after it. Its the only one you got...etc etc.... No idea, really. Just along for the ride. With fellow travelers, who Seem like a nice bunch. Take care, All.

[Jules2]

Hey oldhippy I think what is important is that we can communicate whatever is that is going on for us at any given time. Hope you dont get busted for the hard waste stuff. lol Am sure Bach is very soothing and there has been research done on the effects of music being used as healing and or the effects on the brain in relation to concentration. I cant remember much about it these days. Might have to research it again and see if it jogs the memory. I bet that hardwood is beautiful wood. My dad made a grandfather clock out of 90 year old jarrah. It came (legally haha) from the old wooden jetty in town and it is just such beautiful wood. I have a coffee table made out of 60 year old jarrah and it is not only sturdy but such a beautiful colour and grain in the wood. Ok, time for me to get something happening around here. Julie

[oldhippy]

Nearly heard the tinkle of temple bells, and monks chanting Ommmmm in the background then when I read your opening paragraph. Twas beautifully Cosmic! Bach isnt so much soothing as beautiful in its almost mathematical perfection.(Secret Mens Business, keep it to yourself, OK?) My P doc says that the chemo does muck with your brain chemistry - (Duh! - imagine that, it comes in containers marked bio-hazard, would make good paint stripper, of course its going to stuff with your head.The almost incidental side effect is that the SSRI receptors in your brain get whacked as well (or something like that) so the internal head noise floor goes way down and you can get to work out lots of things. Jarrahs not a bad wood, nice grain and colour - my woodworking involves what I can get and much swearing and cursing and total disregard on how to treat a circular saw....so if I had a nice piece of Jarrah, would try to give it to someone who could use it properly. Got some nice family Australian Cedar stuff furniture, been in the family for generations, the kids dont seem too interested in it. Pity - maybe its a thing that comes as you get older, dont know . Andrew.

[Jules2]

Hey oldhippy Your secret is safe with me and the rest of the site. lol Chemo mucks with your brain for a long time after taking it. I have just returned to working and am struggling a bit. It is difficult as its a new job and I don't want to be making excuses but I can tell you it is impacting on me. The SSRI receptors? Sorry but am not familiar with those. :) I love Jarrah and havea friend that is making some wonderful things out of it. My brother also has been known to be creative with it. Actually my brother milled a large piece of Jarrah in the bush (with a friend) and made a dining room table with it. He used shellack on it and has downlights and it is quite a sight at night time with the light shining on it. I have always appreciated old things, hopefully your kids will become more interested as time goes on. How are you travelling with your chemo at the mo? Julie

[oldhippy]

Hi Jules, had chemo today, start of another round - Not Happy, are I. Did go and see a physio yesterday, was most productive, gave me some simple exercises to help fix up the muscle wastage caused by chemo - (this is greatly simplified, he drew charts and diagrams and Scientific Stuff) I got it in the legs, a real bastard. And stairs and slopes - forget it. Seems its something in the nerve connections thats gone wonky, not making relevant connections. The muscle stuff is almost secondary. Good luck on going back to work, a big effort, hope you can give it your best shot. And accept what happens, whichever way it goes, OK? - hope I dont have to do it, I been self employed the last 20 years, unemployable because of my habit of dropping Raging Socialist rants into conversations. The sorta person you dont let anywhere near customers. Still, was making a living, had lots of older clients, most of the local Retirement Villages - (theirs a doctoral thesis in there about an interesting virtually walled society, where are the bloody anthropologists when you need one. Grrr.) I had stopped advertising years ago, didn't need to. Have had to drop a lot of them, felt rotten, cant do the job anymore. Last night, went up to see one - wanted this big LCD TV mounted on the bedroom wall - nah, not up to crawling around ceilings anymore with big heavy duty power tools, dont have the physical strength, or much motivation to do it. And I had never particularly warmed to them anyway. Bad Vibes. Not good Karma. Fair enuff, just realized I was ranting irrelevantly again. Sorry. Possibly the Chemo' or just random chance, who knows. Been a worker all me life, used tons of chemicals/materials that are now banned. Who knows which one got me. Quack says its not from the smokes, so, whats goin on here? - there aren't any answers, just stagger along as best we can. Or fall in a screamin heap, whatever you like - dont really have to worry about manners much anymore, what other people think, the unconscious social shackles we have assumed all our lives - they are irrelevant now, to a degree. (should be more good looking Sheilas rippin their clothes off, running through the streets)(sorry, its my Inner Bogan) Chemo just might be doing that as well, if we let it - its a bloody powerful chemical, lets face it. Wacks lots of things besides C cells. - thinking differently about situations we had/have, deciding that most day to day stuff is just crap anyway. And the stuff we keep stored up there, the old slights, wounds - all total crap. Chemo seems to strip away layers of interference, of noise. I find it to be so, at least in bursts. You can, indeed, successfully clean out a wardrobe. I Kid You Not. And no, you just check em in the bin, the brotherhood bin if you can be so bothered, or inclined, or even physically up to it. I still have to stop automatically cutting old flannelet shirts into really nice cotton rags for the workshop...got more than enuff now to see me through I thinks. Lower your crap tolerance, take out the garbage, the stuff that doesn't really matter, anymore. Let go. And it never did matter anyway - we just thought it was.

[Jules2]

Hey oldhippy Hope you are traveling a bit better since your last chemo. I always found day 3 and 4 was when my nausea peaked. I talked to my onco bloke and he made some adjustments and I actually felt great on my last one. I felt better on chemo than I had for a very long time ... which is kind of strange I guess. I agree with the crap tolerance ... in some ways we end up with a better life than bc, least that is how I see it and I am sure not everyone can relate to my way of thinking. Just keep talking to those medical people and they can help a lot. They are amazingly clever (imho) and I am eternally grateful to my onco bloke and his team. Even if I did lose a bet with an intern and had to walk to the cafe and buy him a muffin. haha It takes a while to get used to the new normal and I think that is one thing that most cancer patients struggle with at some stage. For myself I figure that we go through a "process" and everyone does, albeit some at different stages. Kind of like the elizabeth kubler ross book on the grieving process. Not sure if that is the correct spelling on that name. Julie

[samex]

Hi Jules and Andrew, not sure how I missed this earlier but your discussion has struck a chord. I wonder if anyone else has experienced the "brain changes" post-chemo? while I am back at fulltime work as a secondary teacher, I often cannot recall names or words for a crossword and I constantly have to refer to my notes about content that I really should remember/know. Is this just old age (I am only 53 thankyou) or does the bloody poison that we have poured into our system muck up our brains as well? I finished chemo in April 2008, but hings are often still alittle fuzzy at times. By the way, what are SSRI receptors? Samex