Shadow in chest is recurrence
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i found this helpful, despite the title it includes HER pos
Pat - there is a section on SERDs ( greater potency then Falosdex, oral form, clinical trial and used in combo with CDKs). Bestbird has a good sum on her post on ASCO 2018.
https://onlinelibrary.wiley.com/doi/pdf/10.1111/aj...
odd i can not paste a pdf - and annoying because we all have different access
☺️🎄
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Early morning from inside our townhouse. Spots on window sorry.
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Interesting article Ioana. Thanks.
It’s encouraging to see the direction that research is taking which will hopefully break down current barriers that patients are facing. In particular, I find the adherence to the use of a CDK4/6 inhibitor as only a first or second line treatment frustrating as I suspect, and this article seems to support, that these agents can be used to treat heavily pretreated patients over the long haul.
My situation is case in point. I was only on palbociclib for a short period of time and unfortunately couldn’t tolerate the impact on my blood at the dose I was on. I then failed on Arimidex (not palbociclib). Now, on Faslodex, palbociclib is not an option (only approved as first line by the Cancer Agency and insurance won’t support going back on a drug which was discontinued), Ribociclib is not supported and Abemaciclib is nit available in Canada. It’s unfortunate as I believe I may have benefited from the addition of a CDK inhibitor. Hopefully this research will open things up for use and reuse further down the line.
But I seem to be doing well on Faslodex. It would be interesting to know if the more effective SERDs will work in the future if Faslodex fails. I can say, a pill would be nice although I am not overly fussed by the monthly jabs. I can get a bit stiff after (worried a bit about tomorrow - my GP is away and I have a locum - I have my GP well trained) but it’s a small price to pay.
Beautiful view Marian. I’m now heading out for my traditional round of Boxing Day golf. Just nine holes at an executive course but the bragging rights of knowing we CAN play golf at Christmas time is what it’s all about. Although I could take some of your heat Ioana!
Hugs to all!
Pat
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Its short because its mid afternoon...and...
personal view - sustained by zilch research - ha - is that no one gets the full spectrum of use of CDK4,6 and same goes with the side effects. An observation by JKL ? on the liver thread was when they fail people seem to get a wildfire progression - not sure - but something about having the butts pulled out of your WCC for long periods of time tradionally makes me uneasy, but (again) i dont know. So when they should be used, for how long, in what combos, and how to get back on them is nebulous...I mean is it plausible after 12-18 months if you have stable disease to go back to AI only ??? and if you have progression - in the abscence of a defined mutation - can you try chemo while on AI - never understood why the two were mutually exclusive. i mean yes the AI failed - but why???? I think its also about the side effects but ...side effects are different in a 30 year old from a 50 from a 70 plus with comorbidities...
i remember i asked my IR why i couldnt take AI while having rads - app from a SAfrican study the risk of pneumonitis is higher but the numbers have not been reproduced - i took my chances and took the AI thinking that cells with oestrogen blockage might be more susceptible - but its a coin toss - do you actually want cells stronger and thus more likely to split for rads - where is the study????? no one knows.
back to CDK4/6 note that Fabrice Andre mentioned that the alpelisib combo is really the first targetable mutation treatment - short of that, the next step now is largely up the experience of the oncologist and the motivation of the patient.
we have the same CDK4,6 issues in australia access wise - ribociclib is now PBS but only for newly diagnosed mets, palbociclib did not reach a financial resolution. palbociclib has come to the patient party 😳 - if you want to use it, you pay $40,000 for the first few months ($5000 per month) and then its free, independent of MBC treatment stage
anyway a little movement in treatment options - not enough but...
interesting is the doxycycline work of lisanti et al
https://onlinelibrary.wiley.com/doi/pdf/10.1111/aj...
i know its early breast ca - but what it seems to affect is the cancer stem cell - and they are the ones that jump from organ to organ - so in my thinking responsible for progression - given the relatively safe profile ( well cf chemo) of this antibiotic - i wonder.. keep watching
did i say short 😉😟
Marian - thank you - glorious !!!! thank you!!!!!
hugs to all,
☺️🎄🐣
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wow that was pretty full on - i am often frustated when i try and untangle the logic of some of these ....
usually quite light by nature - about to go for a swim, fish kind of a Nice broth, and a glass of wine
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😏 Always interesting trying to keep up with your brain.
On the AI fail, I originally assumed that it was related to my prior use. However, More recently I have begun to question the effectiveness of Arimidex for me. I may be totally off base but have wondered about one thing. Femara in the adjuvant setting caused problems for me in terms mood swings and irritability. MO switched my to Arimidex which resolved the problem. Now I am experiencing similar moodiness on Faslodex (but have no intention of bailing given that it appears to be holding things steady). Given the link between estrogen deprivation and chemical changes in the brain which lead to mood swings, is there a chance that Arimidex was never completely doing the job, i.e. never worked rather than failed due to resistance? Just a question.
I do recall the boomerang effect discussion regarding Ibrance. Another interesting puzzle.
Hope you enjoyed your swim.
Pat
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I will soon post some info and possibly a link to an article written by a Cancer UK fellow who worked with~~bear with me~~my daughter's best friend's new husband who met Kath, the best friend on my 2014 Annapurna Base Camp Trek. Alan left his awesome job in London to move back to Canada to be with Kath and I met 7 Cancer UK brilliant men and women who came for the wedding in August. Now that Alan is home where he was born (his mom and i worked together in nursing decades ago and crazily enough she died of IBC 20 years ago) I have the most amazing resources. It took 18 months from arrival to score a perfect fit job at British Columbia Women and Children's Hospital and not sure in in oncology as this just happened 2 weeks ago. Wow, sorry for the long blab but it started because of Alan's friend who has written a medical article on Ibrance given with Faslodex not necessarily having proved what they had hoped for. Of course it is early days/years but I look forward to reading it along with gleaning whatever I can from Alan and his UK buddies. I had dinner with Alan only last week and not for long. Sadly my brain does not work as it used to and it becomes harder to process information.
Ioana, your posts got me going and thank you. Pat how was golf? Liz, how goes the holiday break? Jo, would love to hear your latest too. Di, I so often think of you when my one handed life frustrates me. Mary had to help get my snowshoes on yesterday and she has Renauds so by the end her fingers were blue and white. However it was worth it as she and her partner and I did 2.5 kilometer loop in the spectacularly beautiful park up here on Mount Washington. I came back to the house and they did a different loop. Everyone is out today doing different things on the mountain and I am home peacefully enjoying myself.
Tomorrow we check out but it has been really fun other than the couple of short times when tension got the best of us and I felt to blame. But I do believe we made some progress and worked it out at least for the moment. Maybe I get some slack due to the fact that Christmas is always been hard for me.
As we head into the new year I will be reflecting on how I can be a better person. It certainly has changed me.
Love to you all.
Marian
Looking out from our living room.
David, me and Mary.
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Pat,
Hope the golf was great!!!
You are spot on - there is a fair bit of detail (this and a few more ) if you go looking under "hypothesis" but broadly AIs fail because:
- aromatase independent oestrogen pathway
- oestrogen independent ER function
- ER independent growth signalling
https://breast-cancer-research.biomedcentral.com/t...
Anastrazole and Letrozole are non steroidal aromatase inhibitors.
Letrozole is more potent then Anastrazole at 2.5mg per day versus 1mg - although I would venture the side effect profile is higher.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC20012...
Exemestane is a steroidal aromatase inhibitor that irreversably binds aromatase. Aka suicide inhition.
The steroidal component has been associated with severe mood swings etc.
Fulvestrant is a selective receptor degrader - acts on ER.
Interestingly some works suggests
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC20012...
Depending on the reason why the AI fail in a specific patient it is totally reasonable to think you may be able to use other hormonal therapies in combos. Add to this tumour heterogeineity - meaning it may fail on only part of your tumour mass - and the picture gets cloudy.
What is coming out loud and clear is that smaller doses in multiple combos potentially changed over time before ??? and this is where i go out on a limb - progression occurs might be the way of the future. The aim being to minimize side effects and maximize therapeutic impact.
This is not rocket science - odd its the way we treat pain - multimodal, hypertension and even diabetes...
Some of this was not done until now because really there just werent enough options on the market.
Marian - Love your messages - so good to see you getting out. Maybe I will see snow nextChristmas.
Snow to all,
😊🌷🎄🐣
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I sure wish I had been better at biochemistry! I found memorizing Kreb’s Cycle an ordeal - it was all downhill from there 🙄 .
I hadn’t realized there was such a difference in strength between Letrozole and Anastrozole. Interesting. I did try to switch at stage IV but my MO wasn’t supportive.
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Hello everyone,
So good to hear from you all! The holidays got hectic with cooking and fatigue and decorating and then - you guessed it - more fatigue, but we plowed through and had a nice time. Honestly, I love Christmas. I love the food, the cheesy music, the decorations -- all of it.
Marian, I absolutely LOVE your hair! Love the color and the style - so fierce, so rocking and strong. It suits you! I'm sorry to hear about the situation with your husband but can empathize. Hub and I have sure had our share of ups and downs, and counseling has helped us with our latest rough patch. Glad too that you had the week off from chemo, and hope it's going well.
Pat, good to hear that things are stable healthwise. And I so admire your efforts to declutter. Have you seen the new Netflix series on decluttering, with Marie Kondo? So far I've watched two episodes and find it inspiring. It's also made me really think about my purchases. A good friend of mine, before bringing anything home, asks, "Will this be future clutter?"
Wildplaces, love the tree and the fruit salad. How were the books and five days off?
Liz, baby Eira is an absolute biscuit! Cuteness and puffy-cheek overload! It gives me strength to hear that you will soon be two years out from a metastatic diagnosis.
Di, you are in my thoughts. I am thinking of you and hope you are well.
I had a CT scan today and will hear results tomorrow. I am oddly zen about the whole thing. Anyone else have that? Scans come, they go, and I'm choosing not to get too emotionally wrapped up in them anymore. I'm also returning to work in three weeks (part-time) and I have some anxiety about it. My coworkers are incredibly supportive, but still. I've been on disability for nearly a year. I think I won't expect too much, and that competence and adequacy will be enough for now. Showing up and doing my job with fidelity will be enough.
Wishing you all a great new year from the rainy skies of California,
Jojo
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Jojo, I have rarely since the mets diagnosis worried too much about my scans. Yes it is good to know but I don't lose much sleep waiting.
I saw my wonderful GP this AM and within 3 minutes of departing his office, I got a call from a plastic surgeon's office with an appt. for tomorrow at the Victoria General. I saw her last year but that was for a followup from breast surgery 6 months prior and before mets. It is for my hand which is fast changing and atrophying. Even if nothing comes from it, nice to go and find out. Love my GP too!
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Hi all.
It's so quiet on this thread these days. I hope all is well with each of you. Marian, I am so glad that you have a good medical team. I know how important it is to have a good relationship with our physicians and also feel blessed that I "lucked out" with an awesome MO and a pretty darn good GP! I definitely feel well supported.
Things continue to go well for me in terms of my treatments. While it's unlikely I will ever be defined as NED, Faslodex seems to be keeping things under control and radiation did wonders for my back/hip pain. I had a bit of a flare up of the hip pain over Christmas but I think that was from overdoing it in terms of too much time on my feet. Still have that weird right flank pain but nothing I can't live with and other than that feeling very well.
The only hiccup these days is that my attempts at decluttering have fallen to almost a dead stop. Not from lack of trying but most of our things don't fall into the "junk" category and we have entered the post-Christmas recovery period which makes selling the bits and pieces challenging. Hopefully by February things will pick up. I have a LOT of stuff to shift and a mother who finds it hard to let of things. Lately I have been trying to tackle books... this one is even hard for me! But honestly, I think they breed when I'm not looking!!!
Well, must run. Wishing you all well and hope that the new year is proving to be a good one for you so far.
Hugs. Pat
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Hi all! I know it has been some time since I posted. I'm so happy to hear that some of you are getting pain relief with treatment.
Liz your trip sounded wonderful! Waiting for pictures! Grand baby is so cute!
Pat so glad to read that your house remodeling is coming together. Happy that treatment is keeping cancer at bay.
Marian your pictures look beautiful so glad you had a great time!
Loana you keep us all up to date on all the new treatments out there. Greatly appreciated!
Jojo Hi!
Well as for me I had a recurrence in March to my right lung. Had radiation treatment. Thought all was going well until November. Ct scan shows new spot on left lung but was too small to tell what it is. Had Pet scan a few weeks ago and spot got bigger but still undetermined. Told my oncologist about pain in scapula again. Dr couldn't tell what it was due to radiation to that area. Today I had mri. Dr called and I got the dreaded news. My cancer is back in same area in chest wall. Dr will call me Monday after he speaks to my radiologist to discuss if I can have radiation cause I've already had radiation to that area. Now I have to wait all weekend to find out what we are going to do.
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Hi Di,
I am so happy to hear from you but, at the same time, am saddened by your news. I understand completely how frustrating and at the same time heart stopping it is to not know what is going on. I'm still trying to figure out about the radiation as I've also had areas that have been radiated that may need another zap. I do know that there are women on the site that have had multiple treatments to an area. Of course, the chest wall is tricky but I really hope you can kick this to the curb again.
As to me, things have once again taken a turn but I still don't know what the heck is going on. I had been feeling so well and then in mid-January I started to have increased pain from my hip/groin and in my right chest/flank. I hesitated to contact my MO as he felt it was smooth sailing based on my December appointment. I finally had to reach out as things have been quickly getting worse. The pain is constant, I have some coughing (although I really have not been able to figure out a pattern) and I am now experiencing frequent nausea, particularly in the morning and at the end of the work day. I seem particularly fatigued as well. My MO ordered a CT - after much waiting I reached out today and found that it has been scheduled for the 16th thank god. So once again I am in that strange place of not knowing what to wish for. Obviously progression is not on my wish list but it would be nice to know that I am not completely loopy.
All this to say that I get it Di. I am thinking of you and please, don’t stay away too long. There are folks here who worry about you!
Hugs. Pat.
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Hi all,
Di, good to hear from you and very sorry that you are waiting this weekend to hear about more treatment. I feel confident that your team will have a plan. I wish it wasn’t necessary to have a plan though, that goes without saying. Reading your post, it is clear that your fighting spirit is shining through Di. Waiting is terrible. I pray that Monday brings some relief for you as being in limbo is just awful.
Pat, it sounds as if things were pretty steady and then changed quite rapidly. I’m so sorry you are experiencing some symptoms and I hope the scan will give you some answers. What will you do about work just now? I know how dedicated you are to your job, but would it be possible to take a short break ( if you feel that would help of course)
Life for me has been pretty steady. The weeks have flown by since Christmas. This is a big year for my 3 children who all take important exams. My daughter Lucy was sixteen on Feb 6th and I have added a picture of her in the dress she will wear for her prom in June. I celebrate the moments as they come and I admit to having a tear in my eye when she finally chose the dress.
I hope others will chime in and say hello. The thread has been quiet ( myself included)
Sending a big hug to everyone.
Liz x
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Jackboo, my daughter's birthday is also Feb. 6! She's 20 years older than your girl, who is beautiful!
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Ah thank you pup mom- very seeey if you. My Lucy gives me pleasure and pain in equal measure.
L x
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meant to say very sweet of you!
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That prom dress is beautiful!!! And your daughter is even more beautiful!
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Thank you Kbee
She needs me to keep going.
L
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And you will. X
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Thanks grainee
The support on here is wonderful. I scan again beginning of March.
X
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Hello everyone!
It has been awhile, and things have definitely been quiet, but I did want to check in.
Di, I'm very sorry to hear about the recurrence and am keeping you in my thoughts. Please keep us posted on how you are doing.
Pat, I am also keeping you in my thoughts. I hope you get some information and a plan soon to help ease your symptoms.
Liz, your daughter is absolutely beautiful. I can see why you'd get teary-eyed and feel the ache of your kids growing up.
My own kiddo is 14 and the days are flying by. I'm back at work part time, and it's been good to get out of the house and back into momentum of adult life again. I'm also getting used to my cool but also &*$#@! compression sleeve, thanks to lymphedema.The fun times with side effects, they do not end. Someday I will write a song about cancer side effects. It will include lyrics about eyebrow pencils, the word "nodes" repeated over again, and warnings about sausage.
Other random thoughts:
I miss mojitos, Coke, milk chocolate, and worry-free eating. I miss a sure future. I miss planning for retirement and a full day's energy.
I'm back at work part time, but I'm back in my life part-time, too. I miss going full bore. I miss full-speed, 100%, we'll-try-again-tomorrow, "put that on the bucket list for next year," a good night's sleep. Innocence and the luxury of waiting.
I miss my old body.
I miss my old heart. My old life.
Onward anyway.
Love out,
Jojo
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Hi all,
Pat I'm praying you get good results from ct scan. Please keep us posted. Sending a pocket full of prayers for you.
Liz your daughter is beautiful! Wow kids grow up so fast! Sending prayers your way too for good scan results.
Jojo hi! Yes compression sleeve sucks but hope it is helping. Perhaps you can get your friends and family to sign it with prayers then every time you look at your sleeve you'll see all the love and support you have instead of being reminded of cancer.
Well my Dr's have a plan. Dr's want to try cyrotherapy ablation. I get procedure done March 7th. It's an outpatient procedure. Dr's said if they have to do it again they can because cyrotherapy doesn't have limitations like radiation.
Praying everyone has positive test results. Keep us posted.
Diane
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Hi Jojobird
Great to hear from you. I’m pleased you have returned to work part time. It will take a while to find your new normal.
I can relate to the food anxiety completely. However, I seem to lack all self control and still enjoy a regular red wine or two. I figure it won’t make too much difference. I try to exercise a bit, but have still managed to put on 5 pounds since Christmas!
Thank you for your kind words about my daughter. We have kids of a similar age.
Di, relieved and excited to hear about the treatment plan which sounds hopeful and how great that it can be done as an outpatient.
Pat, let us know how you get on. I have a date now for my scan. It is 6th March.
Big hugs to all,
L
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Hi All,
CT scan was good news - still no change. That's a huge relief but, of course, it doesn't explain my symptoms and leaves me a bit at sea in terms of what to do next. There is a chance that some of it is related to the Faslodex which has been known to cause bone pain and fatigue. Next up is a bone scan but I'm not overly concerned about that as it typically doesn't show much for me.
I'm struggling with the issue of work at this point. While I want to keep going, I'm really I'm dragging myself through the week. In December I felt like each day was torture as I gradually ticked off the time until I could take a few days off - I was exhausted but bounced back quite quickly with some R&R. Now, I'm back to that place again where I can't wait for the weekends - totally uncharacteristic for me as I am normally someone that is go, go, go and finds their work engaging.
Like you Liz, I feel I would benefit from going on a reduced schedule but I'm really not clear on options given that I am on a treatment that, for all intents, is a pretty light touch with a limited SE profile and I fought to get back to full time when I was first diagnosed. I could simply choose to go to part time but the financial hit would be significant, not only in reduced salary now but in a reduced long term disability payment down the road should I need to go that route. However, I do believe that I need to start looking at ways to make this happen. My workplace is supportive but my boss, while well meaning, just doesn't get it. Yesterday she asked me if there was a chance that my symptoms were psychosomatic. Today, when I requested two days of vacation leave to accommodate a visit from my brother she put caveats around her approval - dependent on the rest of the entire management team being available (interestingly two of them take sick time at the drop of a hat.. first sign of a sniffle... gone).
To be honest, while I am generally the tough as nails type, I'm feeling a bit desperate. Thankfully I see my GP on Friday - he requested that I book a physical in addition to my Faslodex shots as I think he sensed that all is not well. I know I'm going to find it difficult but will have to discuss this situation with him. Stay tuned....
Di, I'm happy to hear your team has a plan that is also repeatable. I'm not familiar with the treatment - have they discussed what you can expect?
Sending everyone hugs on this cold day in Victoria. We had a dump of snow that is gradually disappearing but not fast enough for my liking!
Cheers. Pat
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Hi Pat,
Very pleased that the scan is the same as a previous one, although I can see that it has also not provided you with any answers. The Letrozole I take gives me joint pain and fatigue and so the Falsodex could well be the culprit here. As we all know to our cost, SEs are ongoing and develop over time and we are getting older and just tired of dealing with it all. Jojobird mentioned that desire to return to our old selves and that of course is a huge mental challenge: we crave what we cannot have.
Work: Pat the boss clearly does not understand the issues you face. I see a similar attitude here in the UK. The comment about ‘psychosammatic’ smacks of her having no clue about the daily struggle. She probably has been/ is quite supportive in many ways but this word reveals that she doesn’t really get your predicament. My equivalent word was‘ resilient’; my headteacher used that word, hmm..
Part of the problem here is turning up to work looking well and being good at what we do and yet it now takes its toll and yes we ałso have other priorities.
Talk all this through on Fri with your GP and have a long think over the weekend. Plan what you would do with your time and try not to look at this as any kind of defeat.
Part time is a change that takes time to adjust to. Jojobird is experiencing this too. For me, I am glad I did it as by Wed I am hanging on and desperately running for the door. Next Sept I will ask for the same if not lower hours. My challenge then remains finding some hobbies and hoping to make some new friends. The latter has been painfully brought to my attention this half term as I realise I am lacking in that area.
Hope Friday gives you some clarity of thought.
Liz
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Thanks for the support Liz. I really think it was a thoughtless comment that was well intentioned but really speaks to the gulf between what people see and the reality. I am fortunate to be doing well and do arrive at work with my game face on regardless of how I am feeling. This included working with a lung full of fluid before I understood what was going on! I just don't think she realizes that, except for extremely brief periods, I have always had symptoms - they have just evolved and then we layer in the effects of treatment.
While I have no shortage of things to do (I'll be trying to declutter for the next 30 years!) I also understand the issue with friends. We all get so busy with our day to day lives, our families and our work and then don't spend enough time nurturing friendships. It's an area of worry for me. I have many acquaintances but not many close friends in my life. I've invested a great deal of my time and energy being there for my mother but when she goes...
I feel a bit more grounded today. I have some theories as to what is going on with my chest/flank which I can discuss with my MO the next time I see him. It's interesting that, for me, it's like a weight lifting off me just to have a possible explanation. I don't do well with ambiguity. As long as I know what I'm facing I'm okay. The unknown? Stresses me out!!
Hugs to all. Almost through today, then tomorrow and it's the weekend again!
Cheers. Pat
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Hi Pat,
I've been lurking on this site for a while but thought I would weigh in on the work question. I agonized about leaving work for months and months. I had a dream job doing exciting things and I led key negotiations for the federal government with Indigenous people...it hurt me to think of leaving it. I didn't like the feeling of leaving my work half finished. But I was tired then exhausted, the things that fed my spirit no longer fed it. I travelled a lot with my work and it was getting harder and harder to do so. I could do it but the extra effort it took left me exhausted. In my heart I knew I needed to stop working.... I knew I wanted to go out at the top of my game rather than waiting for my manager to tell me I was no longer performing adequately.
Talking with HR, I also discovered that I needed to demonstrate that my illness was making it harder and harder for me to function if I hoped to get LTD. So I took extra days off, stopped travelling with work, used sick days regularly....I stopped being so strong, so tough, or putting a game face on. I documented how working was impacting me. It took me 5 -6 months to work this through, to let my manager know that things were getting harder and finally to set a date. I felt that if I couldn't give my job 100% then I needed to stop, I considered doing something part time but I'm the kind of person who is all in so it didn't really appeal to me. Nor would it work in my position. I stopped working Jan 2018, used up my remaining sick leave and went onto LTD. By then I also had a progression that was confirmed in March. I'm glad I stopped working when I did, it meant I had time for me and for my family. The progression scared me to the core and sharpened my thinking.
I have no magic recommendation on how to navigate not working. We moved from Ottawa to Vancouver in September while I was still on weekly Taxol. My friends here aren't the ones who walked with me during the first BC in 2013 but I am slowly making new friends. Now that i'm Done chemo and feeling pretty good, I am looking at volunteer opportunities, maybe use my management skills in MBC advocacy. Being on LTD allows me to buy back years when I retire if I so choose to, however it may not make financial sense to do so. I don't miss the Sunday night Adrenalin rush. Most importantly, I can focus my limited energy on the things that matter to me.
Hope this helps
Ann
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Welcome Potts and good to see you here. I am up early with possible jet lag, seeing my sister and BIL off at 0430, coughing with a sore throat that is evolving~~lucky I got home from trip just early enough to have bloodwork, see MO yesterday and get chemo, before the sore throat turned to cough. Did not feel I was infecting anyone and now get to lay around and stay warm.
My plan also is to properly read all the posts here then take notes and respond later today. It is so nice to see everyone old and new posting lots.
Marian
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