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
Letrozole and Prednisolone
I posted on another discussion thread the other day that my oncologist was very unhappy with the joint pain that has gradually crept in over the 8 months or so that I've been on Letrozole. As well as okaying painkillers, he gave me a first option of prednisolone over 7 days to see how it would work. I took my first one this morning, hoping that it would make a perceptible difference and that I might see some improvement by the weekend. I got up from my desk at midday and walked across the office - shocked that I thought about the process after I had already taken a few steps. Tonight, during dinner, I got up from the table to let the cat out. To make it clearer, I just stood up in one motion and started walking. Last night, to get up from the table took me swinging around sideways in the chair, painfully levering myself up using the table and bench for support, getting my balance, then slowly straightening my body over the course of a number of hobbling steps. I turned around to go back to the table and saw one of the kids with her mouth open - "Mum! You just got up to let the cat out - did you realise that!" I feel overwhelmed...I don't know what I feel... I knew it was bad but I don't think I realised how restrictive it has become. I'm scared in case it's some anomaly. I'm scared to hope that it will keep improving and that the improvement will continue after the course is finished. I'm not sure I can go back to feeling the way I was. I'm not saying that I'm pain-free. My legs are really aching after a day at work and my joints are still sore but they're sore in a way that I can feel it, not stiffening up and sore in a way that I can't actually do anything.Anyone 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. xoxoxoDecided to have a holiday from Tamoxifen over Christmas
Hi all, Tamoxifen and I are really not getting along very well after four months. It hates me and I hate it right back. Hot hot hot, bone aches, brain fog etc some days I can't even hold a proper conversation. Anyhoo, I decided to take two weeks holiday from it over xmas and new year (with my dr's somewhat reluctant blessing). I think she's trying to prove that Tamoxifen doesn't mess with your brain. Well guess what?????????? Day four of being off it and feeling fantastic. Woohoo. Even though it's a short break I am going to totally enjoy it!!!
I'm on holiday... from Letrozole!
With my oncologist's blessing, as of today, I am stopping Letrozole for a month. A Christmas present to myself. The two main side effects are the permanent bone ache in my ankles and thumb joints. I am very interested to see how quickly they go, if they go at all. I'm also curious to observe the effect on my brain, again, if any. Mucosal dryness is the other annoying side effect. When I start taking it again on 1/1/19 I'll try taking it at night. And after observing what happens for a month, I'll add curcumin to the mix. The clinical trial continues!
Hormone Blockers Weight gain & GLP-1s
Hi Everyone, I am 53 yeards old and 3 years into hormone blockers and am managing (barely) all the side-effects except for one. Weight gain. I have always been fit and active and I am working out more than ever and eating incredibly healthy and nothing seems to make a difference. I have slowly increased from a size 10 to almost a 14 since commencing hormone blockers. I have seen some medical evidence that GLP-1's at a low dose have been helpful for not just weight loss but also a reduction in other side effects as well. Has anyone else had a conversation with their oncologist regarding using GLP-1's and potential benefits? I don't like the thought of taking yet another drug but I am getting to the point of worrying about everything I eat and also cannot afford to keep buying another size up! If anyone has any info on this topic or knows of any specialists in this space I would appreciate it very much, Thanks!!
Trigger Finger/Thumb exercises
I've found a Youtube presentation that explains how Trigger Finger/Thumb occurs & some rubbing & exercises that may help it. https://www.youtube.com/watch?v=V0FfMzemLnU The info from the 2min 20sec mark is more about locating the nodule at the base of the thumb/finger that is restricting the tendon from working smoothly - and how deep tissue massage may help to help break down the scar tissue. This is very similar to what my husband has done in the past when he gets a running injury - he will give deep massage to the muscle, to 'free it up'. I found that I have quite a BIG nodule at the base of my left thumb - it is much smaller on my right thumb. I started the rubbing of the nodule quite aggressively yesterday & I am surprised to say that it already feels 'freer' today! I still can't bend the thumb tho the pain is less (the magic oil may also be helping here too!) - so I am stretching it & forcing it to bend as well, to try & free it up more. Good luck - it is definitely worth a try!Oncologist number 3. A winner finally.
So after sacking oncologist one and two for having the people skills of a cranky nesting magpie, number three looks like a winner. This is the first time I have left an oncologists office without being upset, frustrated or just seriously pissed off. Finally, someone who was willing to listen, was empathetic, yet straight down the line. I now have an all girl team. Which would be awesome if they would all stop having babies along the way:) She actually congratulated me on making it this far on HT. The drop out rate is pretty high within the first year or so apparently. Best of all, she is cool for me to continue the regular breaks on it. Yay for onco number 3 and a big tick for my 2 yr post chemo check up. Hugs to everybody xoxoxoxo
