Tuesday was the day, when the all too familiar symptoms came back accompanied by the sick feeling in the stomach, the very same one which lead me to have a Hysterectomy to begin with and in turn result a tumour diagnosis. I arrived at the Hospital early Friday morning (yesterday) prior to a Professional Development day scheduled for work. Up to this point I had dismissed the symptoms as inconsequential but "better check it out in case" as I had a system in place and there was nothing to worry about. I had telephoned the day before and had a chat to emerg doctor (to determine whether indeed it was something to worry about) she in turn called down my very thick and substantial file from Onc. and asked me to come in. The conversation in Emergency on Friday morning went something like this: "Its not uncommon for tumours similar to yours to spread however I am confident that it hasn't because of your bHCG blood testing" ( follow up conducted every 4 weeks) "However I will ask the senior doctor to examine and we will run some tests". My instant mental and internal reaction was - "Houston, we have a problem". "Out of curiosity" I replied calmly. "Could you please check my file for the last blood bHCG test prior to the Hysterectomy. One was taken on the day or the next available. I would be very curious to see what the result was." (Elevanted bHCG hormone means you are either pregnant or you could possibly have gynae / reproductive issues such as cancer, abnormal tissue etc - the same hormone marker also present in men with testicular cancer (that's how Lance Armstrong found out he had cancer - bHCG was in the 10's of 1000's) The result of a test conducted in May two months prior to surgery came back "normal". The tumour that was found in biopsy two months later went undetected. My mind busily started to make very rapid calculations: So, if the bHCG two months prior to Hysterectomy was less than 2 (which is normal), it didn't pick up the tumour as the biopsy and immunohistochemistry and pathology reports would indicate... Then, the million dollar question: "If there has been a spread (mets) between Peter Mac PET Scan conducted in September and now, February 2010 (5 months) - would the 4 weekly bHCG blood tests pick it up?" A quiet pause then her response: "That is a very good question." and "I am glad you are seeing your Oncologist on Tuesday" Not exactly the answer I was looking for. She hastily responded with "it doesn't look like a tumour so I don't think there is anything to worry about. I am worried that you will go home and spend the weekend worrying." No I am not worried. Quietly furious? A little. Outraged? just a smidge. Somewhat in disbelief - very likely. Of course, we like to speculate because we humans must have the answer to everything and my mind is far too busy, hence my blogging and virtual chat to you. We don't like gaps and we like the jigsaw puzzles to fit together. Life somewhat is never that neat is it? The other possibility was that the tumour indeed was not present in May, two months prior to the Hysterectomy. However, if it was not present and it grew in two months, it could be suggested that it is rather aggressive for it to 'grow' so quickly. My feeling is that it was not aggressive as the PET Scan @ Peter Mac would have detected mets back in September. In my mind, the arrow is pointing towards the fact that it may have been missed by the very blood test that is being used to detect recurrence. The Oncology appointment with the leading Professor on Gynae Onc is on Tuesday arvo, in three days. Is the current monitoring for recurrence sufficient now? (methinks not). Is Adjuvant Chemotherapy (Chemo used as a preemptive strike) now a possibility? What other tests and treatments are available for this very rare tumour? These are the questions that I am currently asking and will be asking on Tuesday. I did go to my professional development day on Interactive Digital Media and made it it time for the 10am start. I was proud that I lasted until 2:30pm before my mind was more interested in thinking than listening. "Such is life" said Ned. Looking back, through the earlier stages of my cancer journey one initially wants to sell up everything and take the kids to Disneyland. This time around, you want to quietly pack your suitcase with every piece of arsenal you can find to fight the sometimes unseen enemy and to stick around for a while longer. My journey continues, one step at a time. No regrets. Grateful that I am allowed to grow both in mind and spirit. My soul is intact. The climb may be steep and seem somewhat insurmountable, but its not impossible. Finally, Happy Valentine's Day to everyone - not a day goes by without giving thanks for the wonderful people in my life. You. Teach. xxxxx
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Frequent Contributor
Teach This is a good read for a lot of reasons. I like the way you have spelled out your natural curiosity about whether the monitoring regime is actually doing the job it's supposed to. I have those thoughts too. But, unlike you, I haven't had any evidence to suggest that Santa doesn't exist. So I keep believing. "You keep telling me I'm in remission, then I'll keep believing you. Deal?" I like the reasoned approach you are taking to following up your disquiet. Get on their territory and use their own arguments. Great way to go. It reminds me of Stephen Schneider's "The Patient From Hell", which you might be interested in if you are comfortable with the scientific discussion. I like your forceful but calm approach. One thing, though. You might consider taking someone else with you to the meeting. I don't know you, so it might not be an issue. It would be for me. That's why I'm mentioning it. Let us know how it goes if you feel like it. H
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Hi Harker, My DSH (Dear Suffering Husband) comes along with me to these meetings to pose questions we may have discussed and I may have forgotten to raise or to ensure that I have all the information I need. I always ensure that there is someone else with me besides myself, my notepad and pink fine liner. Thanking you for your feedback. Its really interesting as I posted it on my social profile page and now there seems to be a confession from others of sorts. Humans are funny creatures, but very lovely. Teach P.S I will most certainly let you know how it goes! 🙂
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Teach i wanna hugssya first but also tell youy that you are incredible! I just love the way you think. It is interesting how our reactions change in time, i wonder if that is because we change or whether we just have more time to allow logic to jump in. I am getting close to my first scan so starting to get a bit toey and wondering, wondering whether these problems i am having is any sort of indication or not. Trying to keep the mind in some sort of order to prevent chaos and panic from occuring. I really think having cancer is just bloody hard work, getting through diagnosis, treatment/s and anything else in between and beyond. My saving grace is for my mind to jump to the "other" side of my mental argument. The "what if" is balanced by "it could equally be" and i wonder if that classes me for a special benefit. lol I will be standing with the boot polish for you. I try and polish my boots often even if i am not using them. :) Julie xoxo
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Teach, Wow! your writing is powerful. I don't have the eloquence of phrase or the clarity of thought that Harker and yourself have, nor do I have the experience of Julie........ I just want to say you have a huge load on your plate right now and I wish you all the strength you need to get through it. I hope you can have some moments of relief from the mountains of questions that are likely to go through your head between now and Tuesday. I hope you have clear thoughts and the calmness required to process what is raised in the appt with your oncologist. My thoughts are with you and sending hugz too, Jill
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oh geees Jill ... you reckon you dont have those things?? Try being in my head!! lol I really wish i could write and express myself how people like Harker and Teach and Samex and Sailor and and and can do ... butttttt alas it is just not one of my talents. I think you express yourself very well actually. :) Teach ... am a muddle headed wombat today ... if i am not making sense you know why :))))
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Thank you for the beautiful feedback, it is sincerely appreciated. Jules you are funny he he 🙂 I am sitting here wondering what it all means, of course those nearest and dearest and attempting to reassure me and not 'think negative thoughts as they can cause cancer" I do believe the horse has bolted. :) Steady as she goes 🙂
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I have a theory that diagnosis causes cancer.
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Just caught up with this guys. Firstly Teach, how on earth were you able to concentrate on something so intrinsically boring as Interactive Digital Media on your PD day? I have enough trouble with all of that stuff at my age on a good day. So well done there! Secondly, I had a session with a counsellor yesterday and one of the things she left me to ponder is how we like to control what's happening in our lives and that when we get cancer we lose that control to some (or quite a significant) extent. Hence the difficulty in coping at times. ( Me in particular at the moment - but that's another story). She gave it a name but I forget what she said. Somehting about dissonance and disorder. Thirdly, Disneyland sounds wonderful. The dollar is good. I went to New York last year. Seriously, I hope all goes well next week. Thinking of you. Samex
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Me again, Harker I think my husband would agree with you on that theory. hence he is always telling me that i think too much. Me may be right!! S
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Certainly there are practicalities with regards to 'death'. The thought has not crossed my mind at this stage, should it arise I will cross that bridge when it comes 🙂
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Teach, just do and be whatever you need to be. 🙂 We have to be mindful of the "other" side of things and yet it cannot be our only focus. It is tough trying to keep the mind on track but you will do it. Roll on your appointment and get some results, then you know what or if you have to deal with anything. Julie xo
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DIether ... or whatever your name is ... why dont you go spam some other website ... really!!
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Hi Teach I admire the fact that you can face your fears and go and have the tests you need to have and ask the difficult questions that need to be asked. I have some worrying symptoms and I am too scared to do anything about them .....I went to my oncologist and he suggested another scan .....I took the request slip home with me and have done nothing with it. I can't face the thought that all my treatment and suffering was for nothing and it is back again. For now I am going to just go with the thoughts that I am cured. It is easier. You are a very strong determined person and I wish you well. Good luck for Tuesday. I will be thinking of you.....Take care, Kind regards, Willow xo
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Oh Jules you have given me a bellyache from laughter this morning he he 🙂 God bless your cotton socks. Willow I promised my husband that I would do what I can to be around as long as I can. He is Bi Polar and my son is autistic and m daughter we have recently discovered is gifted in expressive language so we are a fruit salad! I have or perhaps I would like to think that I am the glue which keeps the family together. Speaking of glue, my husband made me a cardboard heart with bits of broken plate that were strewn across our acreage from the goldrush days and put them all together with Selley's No More Gaps he he 🙂 How awesome is that 🙂 I think its steady as she goes, being present in the now as we cannot control the past or the future and being happy with what we have I think. Today I am feeling great - about to engage in cleaning up the kitchen, still thankful I can do that whilst the kids play outside in their enclosed playground that hubby made for them whilst he chops up wood for winter. I owe it to myself to take care of me I think then to others. But firstly to honour myself and decide yes, I am worth it. The climb may seem insurmountable but its not impossible and should the inevitable come, that is death and dying well thats ok too. Death is a natural part of life yet it seems to be the last taboo - something we avoid discussing because it is so confronting. If there is a little fear perhaps its how we go about dying - but thats an experience in itself and its a journey we all need to take. My idea of death and the other side is much like Christmas past 🙂 all your old friends and family members gathered together in a celebration and they welcome you as though you have been on a long distance trip and they are waiting with placards at the airport 🙂 Sure you will miss your family that you leave behind but you know they will be joining you later down the track 🙂
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Teacher Mum, I have told you on other occasions that I think you are a strong and remarkable woman - I do more so now. I will be thinking of you on Tuesday and I hope and pray everything goes well for you and whatever the outcome - you will cope. xxx meeow (my sensitive little cat sends her love too).
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G'day Teacher Mum You left off the next two lines: Wild horses couldn't drag me away Wild, wild horses, we'll ride them some day. I reckon there are times when we are all riding the wild horses and struggling to stay on. Harker reckons that diagnosis causes cancer. The corollary of this is that: monitoring causes recurrence. However, it is something we all have to live with - that fear that the shadow has got out of its room, turned into a monster and threatens to overwhelm us. Monsters are things that used to be under the bed when we were kids, but to us they were real. 'Childhood living might be easy to do', but as adults with cancer we are afraid of the monster returning. As you say death is part of life, but the problem is that we live in a death denying society, we all act as if we are immortal until something inconvenient like cancer comes along and reminds us that we are mortal. So we have to confront that and so many of the people round about us do not want to do that and our confronting it makes us uncomfortable to them. It is said that in ancient Rome when a victorious general was given his 'triumph' or victory parade through the street, a slave was commissioned to whisper into his ear "memento mori" - 'remember you must die', I think cancer is like that slave, reminding us that we are mortal. I think the previous line of the Rolling Stones song is also important: "I have my freedom but I don't have much time." It is up to all of us to make the most of the time we have. To use a latin phrases again "Carpe diem" – from Horace 'Seize the day, trusting as little as possible in the future'. I was somewhere recently and I saw written up on a whiteboard in someone's office - 'remember the past/live for today/hope for tomorrow'. So good luck for Tuesday - ask the oncologist those questions you want answered and do not leave without good answers, answers that you understand. Cheers Sailor Ah to throw off the shackles and fly with the seagulls To where the green waves tumble before a driving sea wind. Eric Bogle, Safe in the Harbour
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Hi Teacher Mum, We don't know each other yet. Wishing you all the best for you and DSH for Teusday also sending big (((Hugs))) Lyn xo
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Thank you!!! I have woken slighty tired and feeling a bit under the weather. I shall be attempting to take it easy at work over the next 24 hours until I have this all sorted out. Hope you all have a beautiful Monday 🙂 Teach
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hi Teach, Good luck tomorrow. thinking of you. Samex
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Hi Teach, Hope you managed to get some sleep last night. Am thinking of you today. Jill. xo
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Had very interesting and vivid dreams last night. Getting ready to head in...hopefully the test results will be ready! (they are currently being chased up) Will keep you posted! Teach.
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Brilliance comes in the form of a 60 year old Irishman with 30 years experience in Gynae Oncology under his belt and a wicked sense of humour. He can deliver bad news and make you laugh about it. That is the definition of brilliance. He warmly greeted me with a “Hey, I finally get to meet you! You are famous, but boy what a way to be so!” and the bantering commenced as though we were long lost friends. He climbs the Andes to raise money for research and splits his time between the Women’s and Peter Mac. After he introduced me to his medical student / intern, the first question asked was with regards to the bHcG and the tumour prior to the Hysterectomy. His beautifully educated answer with a dash of wit was: “We don’t know”. That is the upshot of it. “We don’t know how this tumour is going to go. We don’t know how it behaves, we don’t know how it will react.” Currently it is what the doctors call “pre-maligant” and at any stage and any time it can become metastatic. Will the bHcG tests pick it up – “that’s the plan but once again, we don’t know how it will act.” If the tumour turns into a choriocarcenoma the bHcG levels will technically rise. In addition to the tests there will be an MRI scheduled every 6 months. If the bloods don’t pick up any mets, then the MRI will, well, should. Technically. Currently, the issues are more “Hysterectomy” related rather than tumour based, for now. When I asked the difference between the MRI and the PET, the simple answer was “radiation”. “Oh medear, you are up for a long process of testing and monitoring, the less radiation we expose you to, the better.” Oh and your pregnancy test came back negative :) I left his office with a big bear hug. Sometimes we don’t always have the answers, sometimes it isn’t always a open and shut case and sometimes we can be pleasantly surprised. Slowly, I am becoming prepared. For the longevity of the testing process, for the 1000’s of injections for MRI’s & blood testing I will endure during this process, for the frequent trips and the monitoring. Because sometimes, we don’t always know. We don’t always have the answer to the questions. As my wonderful Oncologist said “You would like me to tell you that we have a cure, that we have the answers and that we can treat this trophoblastic disease satisfactorily – I don’t know. We don’t know.” So what happens when 30 years of international study, work experience and research, not to mention countless hours of reading journal articles, published work and years of anecdotal evidence, the most wonderful, brilliant, expert in the country “doesn’t know” and no matter where you turn, what you Google, there is no answer. You have run out of information and of experts What then?
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Deceased
Hi Teacher Mum, Welcome to the world of 'we don't know' and regular testing. Next bloods are due in three weeks and if they are up another scan - as my radonc said 'it's about time you had another scan, I'll write the order but wait to you see (medonc)" At least you got a bear hug - I'm envious. As the song says: 'I have my freedom, but I don't have much time' So go ride those wild horses and enjoy it. Cheers Sailor ...Every master and pilot prided himself on knowing exactly how much way his ship was making. He knew the ship, he considered the wind, he watched the sails, he watched the water. In fact, it was a matter which just could not be explained to the landsman. A good sailor knew his ship, and that was all. E. G. R. Taylor
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Hi Teach (et al) Perhaps that is what we learn to cope with. We learn not to demand (or often expect) definitive answers. When people ask me "Will it come back?", of course all I can answer is "Don't know. I hope not." My thoughts go to you with the knowledge that you face this continuing barrage of tests. As we all know, it isn't the tests per se that cause us problems, we are all used to them, but the waiting for the results. Take it easy, S
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Teach It does get easier!! hugssya Julie xo
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had a really good cry in the car. A deep, sorrowful wailing old italian woman at a funeral cry causing DSH to pull over off the highway and hug me. A good cry, good laugh and a good vomit. Always makes you feel better afterwards 🙂
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*hands you a bucket and flannel* ya poor thing!!!! Hope you feel better after your upchuck and cry. Is always good to get rid of stress. Wish i could give you a hug, obviously i cant so sending you cyber hugsss. Julie xoxo
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Teach you are brave and please keep on being brave. There will be a light at the end of the tunnel. Tests are the pits I personally HATE them especially the ones where you have to drink a litre of this muck then 2 litres of this abominable crap, then an injection of some colourless liquid - but be sure to drink 20 litres of fluid to flush it out even though it's harmless- yeah sure pull the other one!!! A little bit of humour to break thus up - a friend of mine emailed me and said how proud she was of me going through all of this, then she said 'you are in the tunnel'. I thought "what". What on earth did that mean? in the tunnel - she thinks my time is up! Then when the old chemo brain dissipated slightly I realised she meant I was in the tunnel nearing the end - where there is light!!!! Bugger me - I would have to be the world's worst panic merchant - it even brought on a bout of - yes you guessed it- diarrhoea!!! I hope that made someone laugh or at least smile or grin!!! Anyway Teach all the best and don't do a me - worry 'till you get sick. Thinking of you and yes I have to say it- my 'sensitive' cat sends her love too.
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