Follow up oncology appointment....a colossal waste of time.
Apologies for the monologue in advance. So yesterday was my 18mth post chemo appointment. That's two hours of my life I won't get back. What a flipping waste of time. I have zero raport with this man. Bearing in mind that this is the bloke who told me at the beginning that we are basically wanting hormone therapy to "castrate me"...LOL....Yes those were the words. I could write a book on the dumb shit people have said to me along the way. Prior to now he's told me that things will get better over time. Well I think that 18 months is enough time so I went in with a list. There are various things that I attribute to chemo and rads, the others to Tamoxifen and a couple due to surgery. Sun & heat sensitivity is one of the big ones right now as it affects my income. I have just about had to give up teaching riding as I can only tolerate being in the sun for about an hour or so in summer. I overheat badly and that makes me nauseas and dizzy. Apart from the fact that I love teaching, (my specialty is riding biomechanics and overcoming fear which has proved quite useful throught BC) nobody needs to lose a few hundred dollars a week. No answer for that one it should have resolved by now. I made the mistake of saying I had been able to improve some of the Tamoxifen side effects. "Well that's good" Next subject. No interest in what had improved and what hadn't. I asked whether or not we should be doing hormone testing or something to see where that's at. Apparently that's not useful until about the 3 year mark and gives no evidence of the eficacy of the drugs. By this time I had zoned out and didn't bother asking anything else. The ho hum of changing to letrozole after then just buzzed in my ears. Blah blah blah... I have come to the conclusion that once active treatment is over, you didn't die, and have completed the suggested steps the team (apart from the surgeon for followup scans etc.) has pretty much done their job. "Next please" "See you in six months." Why, what for? So I can sit in the waiting room for an hour or more for a 10 minute appointment. From now I will go in to check the boxes, grab my script and stay in the loop just in case I need it later. They have new patients to worry about which is what they should be doing I guess. To be fair, what can they really do? What's done is done. What am I really expecting from them anyway? There is no magic potion to reverse things just time, perseverance and never giving in to it. I have no more tears for this thing these days so I just get annoyed. Luckily I do annoyed very well. Annoyed keeps me searching for ways to improve things and make the best decisions for myself and the quality of life I find acceptable. No less than 99% I might add. I can take care of the 1% with wine ::wink: Steer your own boat lovelies, you are the best captain for it and nobody knows you like you. Thanks for listening as usual. Hugs to all, xoxoxoxoxo
and now I am a survivor ?
5 years - 5 years of tests, treatment, scans - everything to eradicate this alien from my body. Now I have had my 5 years scan and nothing !!! nothing at all !! I am clear again. It's weird. My surgeon said goodbye, I hope we never meet again. I see my onc in a couple of weeks and I am hoping she says the same. I watched Kym's video on fear of recurrence, and I know it will always be there for me too. Every cough, every twinge, sends me scurrying to the doc for an xray or a CT. She doesn't mind, she is happy for me to be reassured. Bless them all. I have been fortunate, mine was found early by Breastscreen Tas - they saved my life. I have known some brave and wonderful people over the past 5 years, I have lost some friends. I know all of them are thrilled that I am a survivor. Without my family I would not have got through with any sanity. They have been here for me every step. For all of you lovely ladies who are just starting out, or who are in the middle, or struggling with secondaries - my good wishes are with you all. May more of us be survivors.
Isn't it weird what makes you feel better?
I had my oncologist checkup today. Some of you may know that I quite like my onc - he's always been supportive and honest with me and never disparaging. At the checkup today he was, as usual, asking me questions about how I'm faring with the Letrozole and he was pleased that some things have improved, less pleased that some things are worse, and commented on how little people realised the impact of hormones on the body. He did say, however, that he noted the side effects of the drug were so hard on me that he had thought I wouldn't see the first year out (it's been nearly 2 1/2 years now). Now, he has never given me any reason to think that he didn't believe me - completely the opposite - but that statement of acknowledgement has made me feel so much better.
Hi from mum2jj...16 years on.
Hi all, Firstly I don't get on to the main forum discussion much these days, between work and being a group leader of the Choosing Breast Reconstruction group. I've been meaning to pop on for days and share some good news and hope to those newly diagnosed. It was my birthday last week, and the day before it suddenly struck me. I was about to turn 63 and was not sure how I felt about it, and then it dawned on me. That very same day 16 years ago (day before my 47th birthday) was the day I first heard the words "you have breast cancer". It's amazing that I am now at the point that i don't think about it all the time, and I had almost slipped into feeling sorry for myself that I was getting "old". I very quickly changed perspective to gratitude! I now have 2 adult children who were primary schoolers at my first diagnosis. I did not think I would get there. I really have much to be grateful for. My breast cancer story was not always easy. I had a recurrance 18mths after first diagnosis. Yep got to do chemo twice and radiation. Along the way I have lost some beautiful friends and had others go through second diagnosis and mets. It really is a lottery. However I know how l have been lucky up until now and wanted to share a good news story for those recently diagnosed and those going through a recurrance. My heartfelt love to all those struggling and I hope my story can encourage those newly diagnosed. I vow never to whinge about my age again. much love Paula xxAnyone ever get sick of being their own science experiment?????
I really get the shits with overthinking every so often. Things that "before" you would never have thought twice about doing, eating or cleaning your house with now make you second guess a lot of things. Obviously I am not the only one considering the amount of conversations that go on here regarding the do's, don'ts and what can we change that might help to stop it coming back. Looking for answers on what we did to bring it on. Self blame and guilt is still rampant no matter how much it shouldn't be. BC is not your fault. That fucker broke in you didn't invite it in by living a normal life like millions of other people do. I don't think anything I did brought it on, nor do I seriously think that anything I eat, drink or do will have much of a bearing on whether or not it reappears. I am a believer of dodgy genes, mutant cells,bad luck and not everything was nuked if it comes back. Will the tablets work? Maybe they will, maybe they wont. "May the odds be forever in your favour" Mostly I ignore the over analysing thoughts, but every so often they creep in uninvited. I conduct clinical trials on myself to see if things help with side effects. Should I be doing that, I really have no knowledge of what interferes with what apart from what I can google which can have 10 different answers to the same question. I had a cold...do I take vitamin C or not? Should I take any kind of vitamins or supplements. How the heck would I know. My levels are good so what is the point. Don't eat this, don't drink this, don't rub that on. Will that interfere with the drugs? OMG I drank a bottle of wine, that shits definitely coming back now. Eat soy, don't eat soy, not that I really care about soy, quite frankly I think it tastes like crap but you know. Sweet potato is good for you, sweet potato is high in oestrogen, best not. Nuts are good for you, nope not today. Kale (gross) celery alfalfa, tofu, olives, olive oil, red wine. Great for your heart, nope, high in oestrogen. Eat meat, don't eat meat, don't dare grill it if you do. Flax seed and tumeric is awesome, uh oh, no not for you it isn't, too many phytoestrogens. Oh but hang on, in normal people they might help prevent cancer. Freaking strawberries and peaches are on the no no list. The list is endless, confusing and mostly without any kind of definitive answers. Might, maybe, could do, possibly, we don't know. Pick any subject or food and you will find people raving about how fantastic it is and on another page how it gave you cancer. Don't you drink that chamomile tea and don't you even think about smelling that fucking lavender :) Blah. Ok I'm done. Hugs to all. xoxoxoOncologist Response to Fear of Recurrence
I went to my checkup with my oncologist on Thursday and I thought it worth sharing. I like my onc and trust him to be doing the best for me but I know that to a large extent, that's on faith and recommendations from other health professionals. He's a fairly quiet and reserved man who I have come to know more over the last 11 months and in all of my dealings with him, he has shown concern and care. Some of you might remember that a few weeks ago I had my treatment review with my surgeon (another one I really trust) and he dropped a bombshell on me that my cancer was pleomorphic and that it quite possibly had only been there for 12 months, maybe up to 2 years, prior to diagnosis. Now, this may have been told to me early on and I just didn't take it in. I still didn't really take it in when the surgeon said it recently but it has played on my mind since and of course, I looked at Google for pleomorphic lobular and didn't like what I read. Anyway to get to the point, this, in my words, is the gist of what my onc told me when I asked questions on Thursday: Firstly, they can only estimate how long the cancer has been there - there is no test that works backwards. My prognosis is good and the numbers are on my side against a recurrence. With Letrozole, it is even better. Obviously, these are statistics and while statistics tell a story, they don't help the individual. He said that he knew for me, there is only "cancer" or "NED". But at this stage, I have to believe in NED until it is shown to be otherwise. Because living, thinking every twinge or pain is a recurrence, is no way to live. And between him and my surgeon, they will be monitoring me closely. He also said that he knew that trying to live without anxiety of recurrence wasn't an easy thing to do but that it was really important for my mental health to try. His final words on the topic were that the best thing I could do to help prevent a recurrence was exercise and fitness but at this stage I had done everything I could do and that now it was time to try to get back to living. Before anyone gets upset with this, if I haven't imparted the tone of the discussion properly, that will be purely my fault. At no time was my onc suggesting that I was being foolish or that my feelings were unfounded. And these are my words because my memory is terrible (something he is aware of and understands!). This was all said in both a very professional and considerate fashion. I hope this helps someone who has gone through treatment and is trying to deal with the anxieties of living afterwards. While I know that I won't stop worrying immediately, I do hope it lessens. I was dealing with a pretty dark whirlwind of emotions prior to my appointment and what he said has certainly calmed that significantly. I have to try to live with what has happened to me. I don't know how much time I will have - 1 year or 40 years - no-one does, BC or not. But I do know that I don't want to live them under a constant cloud of anxiety.
New Normal
We often talk on this network about creating and adjusting to a 'New Normal'. Nearly every day I walk up to the top of a hill near my house and always walk around and admire this Iron Bark gumtree at the top. It was blown over in a wind storm more than 15 years ago. There are enough roots in the ground that it has kept on growing; in a completely different way - New branches have grown up from the horizontal trunk, and what was the top of the tree has changed direction. It even has its own mistletoe growing in the top. How is that for slugging it out and creating a 'New Normal'!Year 4 done and dusted woot woot !!!
Soooooooooooo...Halloween was my 4th year anniversary NED!!!!! (A bit of a late post I know) One more year and I get to be on the official stats :wink: Finally, after seeing my BS the other week I get to have a whole 12months off before the next lot of scans! Which I am quite happy about given the last 18 months. I am baulking on changing to the letrozole, actually, I am just not going to. I am hoping there will be a new doctor next time so I don't have to explain my "non compliance" to her. Lol It's been a pretty good year (all 2020 catastrophies considered) and surprisingly I am keeping up with my "say yes to all invitions" which has obviously been a bit interesting with the whole COVID thing. Anyhow, I just got back from Fraser Island, which is one of the most stunning places to visit in the world I am sure, even if I did get mauled by sand flies at one campsite (bloody camping)! I've had an interesting kind of restlessness over the last few months. Whilst I feel well and strong, apart from my toasted brain which is a bit concerning, I now find myself bored shitless with the sameness of everything, the mundane day to day. I guess it's still that mortality slap in the face hanging in there, looking for something more kind of thing. It's more frustration at not really knowing what to do about it. I've taken up painting which I am enjoying. I'm renovating my bathroom (eek,,,huge job) and all the usual farm work, so I am busy but I'm missing some kind of something (not that I'm the kind of person that wants to go juming out of a plane or anything) In the words of Bruce Springstein, "I'm just tired and bored with myself" hahaha Anyhooo, I guess I'll work it out at some stage. I hope everyone is managing ok with whatever stage of this shit fight they're at and the train wreck that is 2020. For those just starting out, keep breathing, keep going one foot in front of the other, you've got this, and you'll find a strength inside you never thought you had. Although you probably wont' realise it for a while. For those in the midst of treatment, hang in there guys and keep those goal posts firmly in sight. Your getting closer every day. For those that are beginning "survivorship".....this is what they didn't warn you about and they should have. I'm going to split this into another post so this one doesn't become a "war and peace" and it's the long haul so I've found there's much to be learnt. Lots of love to all and thank you to everyone who has listened, helped and guided over the last four years Hugs to all xoxoxo
Our 'New Normal' - a thought provoking article
A friend of mine shared this recently .... Author unknown— I had no idea how much cancer sucks. The worst part of cancer is that so many people confuse it with so many illnesses like pneumonia or maybe even the sudden trauma of a broken hip. Although these diseases are acute, painful and sometimes dangerous, they are brief insults to the body and soul. Once the immediate danger is gone from the body, they usually do not recur or spread. You survive! You heal! They do not become a permanent burden in our minds or lives. You go back to your normal way of life, with no real misgivings. Cancer is not like that. Yes, it can be sudden, painful and debilitating. Yes, most of us survive and it is most unlikely that our cancer will return. BUT the difference is that our minds and our lives will never heal. Cancer in remission does not leave. The person we were before cancer ... will never be the person we are after cancer. Family and friends do not expect to see this change in us and are baffled as to why our lives will never get back to "normal". It is hard for all of us to accept that a cancer survivor is, and will somehow, always be a cancer patient. First, there are the obvious and common physical effects on our body and soul. Aches and pains may persist for years. Scars and permanent surgical changes will always be there. Chemotherapy injuries such as loss of hearing, heart damage, vision or nerve damage may follow us. We may have slight shortness of breath or decreased endurance. Our skin, nails and hair may change. We may taste or smell things differently. Or altogether lose our appetite and enjoyment of food. Or worst - lose our sexual drive or satisfaction. Our memories may never be as sharp. And sleep may become erratic. Our innocence is taken away - we lose our 'soul'. We may always be tired, even after a good night's sleep. We may become weak or our mental awareness may be lost. Loss of concentration may make it hard to work or enjoy something simple like a reading book, watching a movie or visiting with friends or maintain a job. We may not have the energy, the excitement. Life may be drained of fun, satisfaction or purpose. Perhaps the inescapable change is that you may have the "never leaving, always just around the corner", deep mental pain, that reminds us that today or tomorrow, the cancer may return. Every discomfort we get will seem to be some kind of sign that cancer has come back. Something as simple as a winter's cold, a toothache, or heartburn after a spicy meal, can scream at us! It is very difficult to "put cancer behind you" when it is always in the back of your mind. The clincher? None of this will be obvious to anyone else. No matter how much our family or medical caregivers try to empathise, to comfort, connect to understand - surviving cancer is a deeply changing and highly personal experience. With that being said, the cancer transformation is different for each person and each patient. None of us were the same before the disease, and none of us experience this disease the same way. There is no "NORMAL", it all becomes the "NEW NORMAL" Cancer sucks, and keeps on sucking. Deep healing requires the understanding that things are not the same. It requires communication and space, counseling, support and patience. It requires time to find the person you have become. Author Unknown
2 year all-clear, 2 year all-fear.
I've just had my second year check-up scans. It's always going to be so stressful. I've had a range of worrying new symptoms pop up over the last couple of months while on my Tamoxifen break, so I'm worried something was there and has now domino down my left arm lymph nodes. Taking a look at my scans, my layman eyes don't see a disaster. There are areas in the ultra that look like masses although to my memory they don't seem to have the blood flow activity to indicate tumors, however on the mammogram they radiate the margins of my crash site (... that's what I call my scar tissue, haha). And as much as I'd like to think hey, it's just age, it's just calcification, there's nothing like it in my other breast to establish that. I know, I know, the cardinal rule of check-up scans is not to look at them before your consultation but as if have scans of inside my body in my possession and not look? Ha! I never shook the lethargy. My doctor told me that it's actually a normal thing for cancer survivors to be chronically tired. There are no solutions; work while tired, exercise while tired, eat while tired, struggle to sleep, wake up tired, repeat. And everything always hurts. It's just my normal now to need painkillers to get through the day. 2 years on and my radiotherapy pain still hasn't gone away - and it's not just that it's not gone away, it hasn't "settled" the way I was hoping. It might be that during healing I just got lucky and clumps of nerves got together to make particular movements painful. I hurt every day and I needed to complain about it. It's been so long of waking up with pain and no energy and I don't complain anywhere. Sorry BCNA. You get my worst side. I've refrained from posting quite a lot and just kept to the activity threads because I feel that my particular forum needs are a form of clutter for those in active treatment. A follow-up/aftercare category/life after category would be nice?
