Topic: Shadow in chest is recurrence

Feb 23, 2019 09:31AM Sadiesservant wrote:

Hi Ann,

Thank you for your message. I found it very helpful given the similarities in our situations. You definitely gave me a lot of food for thought, particularly regarding what I need to do for an exit strategy. My conversation with my GP did not go precisely as planned. We did talk a bit about fatigue and scaling back. He is supportive but the conversation did not go as far as, "You need to reduce your hours of work. I'll sign the forms." However, I think that's fair. It's still something I struggle with - a) asking for help and b) admitting weakness!

The reality is that I need to go through six months of short term leave anyway. Your advice to take the sick time when I need it is sound. I am terrible when it comes to this... if I'm not feeling well... I work from home. MUST stop doing that!!! And, in my case, I do think that part time can work.

I see my MO at the end of April. I'll keep assessing the situation and may be discussing work with him as well. Until then... I press on.

Day started with dark snow clouds but it is now sunny and beautiful. I hope this bodes well for the weekend. Happy Friday!

Cheers. Pat

Mar 3, 2019 01:45AM Jojobird wrote:

Good morning, everyone,

Sitting here in the California rain with my coffee. The house is quiet. So good to read your posts, and the work conversation (thank you, Pots and Pat and Jackboo and everyone else) feels so spot on to me. The struggle around whether to continue full time, part time, our new energy levels and post-treatment bodies, the relationships with coworkers/colleagues -- all of it speaks to me right now. I am also struggling with the reduced emotional investment in work itself, and the desire to do other things.

Like Pots, I have spent years doing work that I found compelling and meaningful. I have enjoyed some small but important successes. I've had good deal of attachment to my identity in my field, and in my role as an employee. In no way has it been perfect but it's been a core part of my life that I've enjoyed and grown in. But things have changed after cancer, and now, after this recurrence and working for about a month, I've been bowled over by my changed emotional state.

After the first diagnosis and treatment, coming back to work felt like a triumph. My coworkers were extremely supportive (and still are, bless them), and cheered. I am so grateful to them. Life went back to some kind of full-time, routine "normal" for awhile.

But then the recurrence happened. After chemotherapy and major surgery, my energy levels tanked. More significantly, my emotional state this time around is much more sensitive. I'm struggling much more with depression and anxiety, and small work conflicts that - before - would have barely registered with me are now taking on a much bigger magnitude and causing a lot of rumination on my part. I know this is the depression, and I'm getting help for it. But it's very difficult. I'm not as emotionally resilient as I was before. Even returning sometimes to my work desk, and sitting those first few minutes in the morning, can trigger a few quiet tears. I'm reminded. You know what I mean? I'm reminded of the old life. Of how much has changed. Of how I'm not "on top of my game." My short-term memory is shot. I feel deflated.

And I know the risk of recurrence for TNBC a third time is high. "Don't dwell on that," says my support circle, and I get that. But like so many of you I am struck with a sense of urgency about how to spend my now-ever-presently-alerted-to limited time on this planet. What, like Mary Oliver writes, will I do with this one wild and precious life?

And that's the question our encounter with mortality forces us to ask. No easy answers. No one, straight path.

I'm leaning towards less money, more time at home with family/writing/supporting others/puttering -- being. I'm leaning towards honoring my need to withdraw from the machinations of the money-earning world. What that looks like logistically is unknown, and will certainly mean sacrifices. But time is all I've got. And it's all I want.

Forgive the long post. The support and shared life here is wonderful, and I am so grateful to you all for being here.

Love out.

Jojo

Mar 9, 2019 09:47AM marianelizabeth wrote:

I think I said I would get back here soon and here I am. I agree that it was very quiet for a while. We were in the Bahamas in February sailing on some friends' catamaran. While it was enjoyable and relaxing the trouble there and back not so fun. I caught a cold and cough and it has been more than two weeks recovering. Of course having chemo three Thursdays since then did not help. However I am on the mend and plan to do inspire Health's Rain Walk tomorrow. I think Pat and anyone else in Vancouver or Victoria will know about Inspire Health. The organization provides free classes like yoga, meditation, exercise programs planned just for you, counseling, nutrition classes and a doctor plus more. The walk tomorrow is there biggest fundraiser of the year and I have a small team including my husband, my daughter and her partner. We have raised quite a bit of money which I am proud and happy. I just hope I can make it to the 5K.

I had a CT and an MRI this week and my oncologist called this afternoon. The news is mainly good although there was something seen on my right one on the MRI but not the CT. We are not worried and the scans will be repeated in three months anyway. I do have problems with weakness and wobblyness and with only one hand working it is hard to get up from being on the ground for the floor. Diane I know you will know the same.

Speaking of Diane, I believe you had cryotherapy ablation yesterday and of course we will be wondering how it went. Liz you also had a scan this week so let us know how it went. Your daughter is gorgeous.

Pat and JoJo, it is interesting to hear about your work dilemmas. I hope that you can both come to some terms with your choices but Pat it sounds that you are getting closer to making decisions and I hope that you will be happy with them. I turned 70 while we were in the Bahamas. it seems strange but I do not really feel that old. Well some days I do but not often.

Mar 17, 2019 11:09AM Pots wrote:

Hi Liz,

Getting stable scan results twice in a row feels surreal. Like is this really me?

Good for you for making a decision about your work. Once I made the decision to stop working, I felt a great calmness, relief. What you do next will be on your terms....congratulations! And let the next adventure begin.

An

Mar 19, 2019 10:22AM marianelizabeth wrote:

Jojo, I love your blog. You write even the hardest, saddest posts with beauty. I also love that you sometimes use words I have to look up. Reading your blog posts just now made me wonder where you are at in your triple negative life. What chemo are you on at this moment?

My blog posts are quite different and perhaps personal in a different way. My husband does not read my blog. My daughter does faithfully and always complements me. My sons read sometimes but I think they get more information when they talk to me. My youngest, age 26 who graduates from nursing school this spring, bears my cancer closest to his heart. His graduation ceremony is June 4 but he has a pinning ceremony on June 1 and when he first heard that I was metastasized, he asked me to be the person to pin him. Whenever he hears something good like the scans recently that showed no progression he is more excited and happy I think than other two. Hmmm, what got me going in this direction? Who reads the blogs I guess.

I started counselling though only one session so far. My biggest issue right now is my husband who does not like cancer or talking about it and refuses to think about counselling. Often I want to separate but it is too much now to contemplate. I hate my loss of independence. Do any of you feel a loss of independence? This is for me the loss of use of my dominant hand which makes day to day living more difficult and everything takes twice ass long to do. I have lost my trekking life and anything uphill gets my heart racing. I was a serious quilter and that is gone. On a brighter note I am enjoying colouring left handed.

Enough. Keep up the blog posts Jojo. I write only every couple of months though I think more frequently would be better for my mental health..

Ann, are you still on Pacletaxel and if yes, how many treatments now? I keep hearing there are limits.

Liz, the reasons for taking early ill-health leave makes sense in so many ways and we know you have given it much thought. Pat I hear you too.

Marian

Mar 27, 2019 04:09PM Sadiesservant wrote:

Hi All,

Well, it's past my bedtime here but I'm lying awake stewing. I had a bit of a slap in the face today at work which has my brain spinning. My ED pulled me aside as the person who deals with the finances to let me know that HR had carried out a review and decided that my co-worker is underpaid compared to others at his band. What this means is he will be getting an increase to almost the same salary I am earning despite the fact that he is at a lower band and has less responsibility. I was gobsmacked.

My ED kept saying it's not personal and it wasn't her call but she supported it. The challenge is this is a guy who made a very conscious and deliberate decision to maintain work life balance despite his role. He is in at 8, always goes out for lunch, has multiple e-cigarette breaks through the day, spends hours chatting with colleagues and has his man purse on his shoulder at 3:55 each day, out the door by 4:00. In the meantime my boss keeps firing things at me. I am now earning the equivalent of about 5 minutes a day more than him - that's less than one e-cig break for gods sake.

When I expressed my views, my ED said, in all fairness she has been doing everything she could to accommodate me. I felt like hitting her. Accommodating me how exactly? I'm working full time plus, work through lunches, regularly work late. I WORK from home once a week - emphasis on the work bit. Oh, maybe she is accommodating me by allowing me to go to medical appointments cuz, oh... I have cancer!

I’m trying to put it into perspective as a very good reminder that I need to follow through on my plan to cut back as clearly the only one who will look after me is me. Right now I’m just royally ticked off and feel like an idiot.My ED essentially indicated I was hardwired to perform. She may be in for a shock. The timing is interesting and may be Devine intervention. I have started the ball rolling to investigate how I can cut back. I am not sure where these conversations will go but can’t help but wonder how Mr. Work-Life Balance will like picking up the slack.... 😏

Mar 29, 2019 02:26PM marianelizabeth wrote:

Liz well done and I am so happy you came to acceptance. I wonder if your co-worker is piling it on because she knows she will never have to face you.

Pat your boss sounds truly like an uncaring bitch who knowingly is throwing you under the bus. Is there someone higher up that you can see before you make a retirement decision?

Ann, thank you for your comments re husband. I could have written what you wrote. I will send an email with more plus copies of all the women who came to my lower mainland plus potlucks and we can try to plan one for the fall at my friends house in Kits. Spring/summer gets too busy and November became the best month for the 3 potluck I did plus yours was also November wasn't it? Would love to see you and will plan on it when I next come to Vancouver, probably May.

Jo, i continue to love your blog posts.

Di, I never stop thinking of you and want to know how your surgery and then treatment has gone.

Marian

Mar 30, 2019 12:07PM DiV wrote:

Hi all, I had cyrotherapy. During procedure I remember telling them that it hurt, hurts so bad. They stopped and gave me more anesthesia after that I didn't remember anything. Dr said my back was going to hurt for a few days and it sure did. 3 weeks on and my scapula area and ribs where mesh was put in for chest wall rebuild still hurts. I now can't wear a bra cause the strap and band causes pressure in those areas and aggravates it. I got the results from biopsy testing it is positive for a protein PD-L1. The clinical trial I was going to do was just approved by the FDA. The clinical trial has an immunotherapy drug called Tecentric and Abraxane. I started treatment yesterday. When I got home I took a nap then got up to feed my furbabies then went back to bed. This morning I got up and fed furbabies and went back to bed and didn't get up til 2:10. Geez that's alot of sleep.i will do 1-2 rounds of treatment each treatment is 28 days then get ct scan. First week I get chemo plus immunotherapy 2nd week I get chemo 3rd week I get both. If treatment is working I will do 6 cycles. I won't finish treatment until end of September. My next treatment is April 5th.

Liz happy to hear you made your decision about work. I know it's hard to leave a job you have worked at for so long and enjoy. Just think now you can spend more time with your family and grandbaby. So happy to hear you got good scan results! Praying for many more!

Marian I just love the Bahamas. I've been there several times. Your photo is beautiful. I know what you mean about not having the use of your hand. Yes things take twice as long. I too like to color now that alot of my other activities have been taken from me. Happy belated Birthday! What a great way to spend your Birthday.

Pat your like alot of us. Your a hard worker. I understand fully about co-workers moving up the ladder and making the same amount of wages and not knowing all the job entitles. It stinks and it's not right. I was in the same situation with a co-worker and on top of that my boss wanted me to train them. Needless to say i only showed them the basics and didn't give up my secrets. It was like my boss knew the day was coming when i would leave on permanent disability and wanted to make his job easier.

I truly understand about hubby putting their self's in a bubble and not wanting to see what our futures could be. My boyfriend and parents don't even want to hear bad things. I tried telling them where my important paperwork is in case some day they need it and they didn't want to hear it.

I hope everyone has a wonderful weekend!

Love to all Diane

Apr 1, 2019 04:39AM marianelizabeth wrote:

Apr 6, 2019 01:27AM jackboo09 wrote:

I wish you luck Pat. Hope you find some peace with a way to move forward whatever the outcome

Apr 14, 2019 08:21AM jackboo09 wrote:

Hi Jojobird

Firstly, I am sorry to hear about the virus and the pain. I am amazed that you have been able to work at all feeling like this. Hopefully the virus will go very soon and you will begin to pick up. I do hope so Jojo.

I have now completed all the ill health paper work, but my oncologist has jet to write up his report and so everything is on hold. He has been in receipt of the papers for nearly a month. Obviously, this is a cause of immense frustration for me. I want to send it all off to Teachers pensions and get a decision. Yesterday was a HP treatment for me and was really hoping it would be waiting for me at the clinic, but no.

You asked about my decision. I feel it was a build up of increasing anxiety, sheer fatigue and a succession of physical symptoms. The most recent issue has been ingrown toenails- painful and infected but I have now had partial nail surgery and so they are healing. My point being, there always seems to be some issue I am struggling with.

Emotionally, this stage 4 dx is hard to deal with alongside a demanding job. I want to be able to look after myself a little more and family life will run more smoothly with one parent around, rather than being out of the house for 12 hours.

All this being said, not an easy decision. I am haunted by the need to have time for me while I am still well enough to enjoy it. I think this was the bottom line.

I wish you luck with your decision.

L x

Apr 15, 2019 04:16AM Sadiesservant wrote:

Hi Liz,

I can only imagine how frustrating the delay is. I find now that once I have made a decision, after much agonizing, I want it “done” and over with. Did you speak to your physician about your decision at your last appointment? I wonder if perhaps he is holding off until your next appointment so that he has an opportunity to chat with you prior to finalizing. There may be details about how you are feeling that he wants to capture in the paperwork.

Sorry to hear about your challenges Jo. Hopefully things will improve soon. Marian, the hiking sounds wonderful but I’m sorry that the rebound had you feeling down. That’s one advantage to work, it takes a person away from cancer land for at least a little while.

I have initiated the first step in my plan to make work more manageable. I’ve drawn a line in the sand, blocking off lunch breaks and my departure times in my calendar as a signal to colleagues, staff, my boss and myself that I need to work regular hours and no more than that. I’ve backed this up with a note from my GP. We’ll see how things go but I have to admit that I am seeing improvement with this simple step. It will, of course, be interesting to see if my boss adheres to this when the next “urgent” request comes.

I’m off next week which should provide time for my body to rest.

Sending hugs to all. Pat.

May 7, 2019 12:29PM Pots wrote:

Yay! doing a Happy dance for you! Enjoy the time to rest and don’t be surprised if you feel exhausted after a few days off. There’s a tiredness that we carry that seems to take a while to work it’s way out. I bet Monday morning felt very good knowing you could stay home!

Pat, how is your work situation unfolding?

Be well,

May 10, 2019 10:00AM DiV wrote:

Hi all, just a short update on my treatment as I'm exhausted. Had treatment today at 1:30. I'm on my second round of treatment with Abraxane and Tecentric. After treatment I'm exhausted. Tuesday I have a ct scan and that will decide whether the treatment is working or we stop treatment. My scapula area continues to hurt which makes me believe that the cyrotherapy didn't work this is on my amputation side. I can hardly move my shoulder up and down. Dr. put me on Fentanyl patch to help with the pain and it does help greatly. Dreading scan tuesday.

May 14, 2019 11:54AM marianelizabeth wrote:

Diane, I feel so badly about this treatment and the side effects not to mention the worry about whether treatment is working. Despite your fear of tomorrow's scan, at least you and your team will know and then either carry on or look for a new treatment. You have had such hard luck and ongoing terrible pain and we know what it is like to have no use on the cancer side.

Liz, I can almost feel the lightness that you have now work is done. Pat, how goes it with your initiation of work changes? Jojo, what about you? Any relief?Hi Bright55~~is 55 your age?

Ann, let's try for a phone call soon? I hope to get to Vancouver in June. I go to Terrace for my youngest son's grad ceremony and pinning ceremony from his BSNursing end of this month.

Bone scan was good other than some bright areas on right leg but most likely old injuries but when I have my CT in June she will add knee just in case it is not arthritis or injury related. I am feeling pretty good and start cycle 7 on Taxol this week. Fatigue gets me but I am not a spring chicken.

Marian