Shadow in chest is recurrence
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Claire,
Eeeeeek, excited!
Pat, thanks for your message. I will PM you.,
I have a BUPA medical tomorrow- at the request of my school.
X
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Liz, you need to explain what a BUPA medical is. Sounds like something that will make me annoyed with your school.
Claire, please explain about the internet charges. That might help as I’m addicted to my gadgets. I bought a package but 240 minutes don’t go far over 12 days!
Wish we could have met up. Let me know what time you are meeting and I’ll raise my glass. I believe I’m tour Glasgow and the environs that day.
Hugs. Pat.
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Pat,
The school are sending me for a private occupational health medical. So I am revealing all to a complete stranger! I’ve just missed the train and so am now running late. Never mind. I am annoyed too but the role of occ health is to support people in getting back to work and I’m already in work. I hope I have a reasonable experience.
More later guyd
Liz
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Pat & Claire wishing you both a wonderful vacation. post some pictures when you can.
Liz I do hope your meeting goes well. Do you have FMLA (Family Medical Leave of Absence) in your country? The way they are treating you wouldn't happen under FMLA. It's so unfair after everything you have been through to be treated this way.
I started radiation treatment Monday. Tomorrow is my last treatment. I will have a 3 week recovery then start chemo. The chemo drugs I will be getting are Taxotere and Keytruda once every 3 weeks for a total of 6 treatments. Oncologist also put in an order to Foundation One for genome testing. I started planting some annuals today. I didn't get too far as I got tired. Will try to plant more tomorrow. One day at a time. Finally got a gate up for the yard so now my furbabies can run in the yard. They love it!
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Pat - To save money when the ship is sailing, turn off your iphone or put it on airplane mode. When you dock, the internet is free as you are using Glasgow or another city's system. When you disembark use free wifi at cafes, etc. Stay off the phone unless urgent. I spent hardly any internet $ in France last year on my cruise. Liz - my sis and I are so excited to meet/see you. Claridges or bust!
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JoJo the castle has alot of history. It was built in 1880 by a German immigrant. He had it built to reflec his German neighborhood he grew up in. I just read a book about it called Haunted Franklin Castle. Was a very interesting book. There a quite a few castles here in Ohio. I've visited most of them.
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Hi Di
It is good to hear from you as I have been wondering how you are getting on. It is reassuring to hear of this treatment plan and the testing. The one day at a time tactic is a sensible one. Doing fun things to take your mind of it is also wise.
My sister has just put a gate in place for her 3 chihuahuas. They have gone from a tiny flat to a lovey garden to play in!
Pat- happy hols and Claire- will have more time to post this weekend and sort out timings.
L
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Hi DIV you don't know me but I've read your story so I feel like I know you a little bit. I will be interested to hear your Foundation One results. I'm in the process of getting scheduled for a new biopsy for a new tumor wrapped around my brachial plexus and MO and nurse navigator are making a big deal about getting sample to Foundation One. I hope my insurance pays for it.
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DazzlingEagle, I too have a tumour entangled around my brachial plexus and would be interested to hear more. Have lost the use of my right hand and have awful nerve pain helped by meds and have a great team that has together with me over the past few months~~not without some assertiveness graced by diplomacy. DiV has shared much with me and I am deeply moved by her sharing with us.
Pat I am on a lovely lake near Terrace and though not so exciting as your cruise sounds, I am loving it in the north with my son Andy. We are off to a small town for a softball tournament and in a nice motel so easy weekend coming up. It is hot up here~~27C yesterday.
Our view of Lake Lakelse from the cottage my son is house sitting.
Liz, so glad you are making and starting plans! You will be seeing Lalady, is that right? Or is it Claire? With getting ready for this trip along with lots of appts around my cancer I have not had time to read back and check.
Long weekend in Canada and I hope that we Canadians all have good plans, even just "chilling." England will be hopping with the royals doing their thing.
Love to you all,
Marian
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DazzlingEag hi! I'm so sorry to hear your news. I'm glad you found us. All the women and a few men here are very welcoming. I'm anxious to hear the results from Foundation One too. I'm praying it reveals a way to control my cancer. I'm also interested in your results too. Marian, you and I all have had tumors involving the brachial plexus. It's awful for us with the pain involved. Keep your head up and know that we are all praying for you.
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Good Saturday morning,
Anyone watch the royal wedding? I didn't, but will probably check out clips online. I had my second Taxotere infusion yesterday and am back on a 2-week cycle of Xeloda. All of this means that the steroids kept me up until 4:00 AM, and I was up again at 6:45 and unable to go back to sleep. So, I'm going to write a little this morning, make breakfast, and plan on an afternoon nap.
Div, thank you for the castle info. It's a lovely picture and interesting background. I feel like we are on similar treatment cycles. My onc prescribed Xeloda and Taxotere for no more than 6 cycles, at which point we'll see if the tumor is operable. How is the Taxotere impacting you? I've already lost my hair but so far nothing else (just did second infusion yesterday).
Pat, so glad you are enjoying time with your son. Lake Lakesle is stunning and looks peaceful.
Claire, I wish you an excellent vacation.
I'm heading back to work for a few weeks to finish out the school year next week, and then it's onto disability. After many, many years this loss of routine and colleagues is heartbreaking for me. I work with really supportive and kind women, and they've taken on an extra load over the years when I've been out. I feel guilty and grateful. My daughter will also soon be leaving middle school, and her "graduation" is coming up. I need to think of some low-budget gifts for her, and I'd also like her to consider giving some time to a charity. But that might be later this summer.
Everything has changed, and nothing has changed. Isn't that how it is? We're still here. Plants still grow. The garden needs work and coffee tastes good. All of it part of the grief and part of the joy. Love to you all.
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Jojo so sorry to hear that you lost your hair. I haven't started chemo treatment yet. Dr said 3 weeks recovery before starting chemo. Dr is also hoping the Foundation One genome test results will be back before starting chemo. When I do start chemo l know I'll lose my hair again. I watched some of the royal wedding.
Everyone have a wonderful weekend!
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hi Liz dear....hope all goes well with the medical assessment..perhaps let Union know that you have been requested to attend the assessment even give your medico a call to keep them in the loop
Enjoy the catch up with the girls
Bright in hope
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our family enjoyed the windsor wedding the setting was more personal and the carriage windsor greys were magnificant..no paparazzi and city crowds to manage so appeared very calm
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Welcome to the world my beautiful niece.
Eira Elizabeth Mary McGrath.
Born at 5.15pm on Sun 20 May 2018.
I am honoured that she bears my name and proud to be her aunt.
Eira is a Welsh girl’s name meaning snow.
She was born in Cardiff hospital this evening.
Wanted to share my good news with all of you.
Liz
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Congratulations Liz. Sending you a hug and a virtual glass of bubbly. Pa
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Liz 😊
Beautiful name - wishing all of you much health and joy!!
Hugs aplenty - glasses up !
Ioana 😊🌷🌷
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Congratulations, Liz! What a beautiful name and gift. Babies bring such hope.
Wishing you all a great day today.
Love out.
Jojo
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Liz Congratulations! Beautiful name!
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Hi to all,
Thank you so much for your good wishes on the birth of my niece.
So today I was delighted to receive a much anticipated phone call from Pat who is in London.
I was on my way back York and on a train at the time. Pat- I felt like we have been friends for years! Many laughs. 😊
Lots to catch up on here.
Liz
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Liz, so cool to have that phone conversation! And congratulations on the birth of Eira Elizabeth Mary and jojobird, agreed on new babies bringing hope. BTW, it is me not Pat who is loving life at Lake Lakesle~~Pat off talking to Liz in England. Yay for that. Jo, sometimes back when I had no hair I actually enjoyed the ease and loved my scarves. I even had it buzzed to #7 a couple of times since. I so much appreciate your last paragraph.
I just checked in for my flights home to Victoria tomorrow and am so glad I had this week with my son.
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Hi All,
I must say, Liz has the patience of a saint! It took some perseverance on both parts - dropped call and then I managed to somehow auto dial her after hanging up. (I’ll blame jet lag.) But it was so lovely to hear your voice Liz. It is amazing to think we have known each other virtually for just over a year and yet, I felt as if we have been friends for years. I’ll call again in June.
Enjoying my romp in London although my legs are feeling it. It’s annoying that the Fitbit logs so few steps considering the fact that I’ve been on my feet for hours both days. It is a marvellous city with so much to see. Off to Southampton tomorrow but hoping to start the day with a walk about Hyde Park before I go.
Hugs to all.
Pat.
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Liz and Pat - I am one big smile. I can not wait until Claire joins the Party.
Hugs to all,
😊🌷
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Sending virtual smiles to all - I am headed for London tomorrow (long flight) from LAX. Very glad I had a gallbladder stent over the weekend. Liz - see you soon!
(()) Claire
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9.40am waiting for my train. London bound....
Eeeek..., 😊😊
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I miss you all but am so happy for those of you who are traveling and meeting up. Not much new from me other than the fact that my team is still working on pain relief. I am now taking OxyNeo 60 mg TID and Metadol 2mg TID. Metadol is methadone and I started at 1 mg and have increased only in the last few days. So far there has not been much change and I am still waiting four an appointment For a nerve block. I gather there is a long wait. I am fine really as I still can use oxycodone for breakthrough when needed and that is at least once a day 20 mg. I went for a walk yesterday with a friend and today with another friend about one hour each time using a pole as my right knee is not too stable but I really want to get out with our lovely spring weather and colourful cardens blooming in Victoria. I wish everyone a happy weekend. Hugs, Marian
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Good morning everyone,
So glad to hear about vacations and Marian, I am curious to know which of the medications is working best for pain. My tumor is under my arm, near my rib, and I'm occasionally getting nerve pain.
I went for a second opinion to Stanford University, and while the cost was very high, it was worth it. The doctor who saw me reassured me that the treatment I was receiving from my HMO was spot on (Taxotere and Xeloda), and that if it didn't work, there were many clinical trials available. Triple negative bc is a hotbed of research right now, and one of the nation's leading doctors - Dr. Telli - is right there at Stanford. It gave me hope. I've also finished navigating disability paperwork and let me tell you: that has been an ordeal. Copies here, emails there, phone calls everywhere. GAH. If I could have a mojito to celebrate the application's end, I would.
And my work year will be over Thursday, then summer. I'm not sure if I'm starting back up at school next fall. So much is uncertain - will the treatments work? Will I be able to have surgery? And what if it the answer to these remains no? Then what? The uncertainty is very difficult. I also want to be able to plan activities for the summer, but my fatigue levels are really tough. Some days I can barely go to the store. Others, I'm walking 3-4 miles for exercise. Hard to tell, hard to plan -- and that's the other anger with cancer: it robs your future.
But: my lobelia are blooming and spilling over the planter boxes, and it looks like we've got a great crop of strawberries and tomatoes this summer. Can't wait. My daughter's starting high school and I'm here to see it. The sun is out. There's coffee.
Small pleasures, no? Wishing you all a great day, love out to all.
Jojo
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Jojobird,
Good morning. I read your blog. It is beautiful. You have an amazing talent and I hope you continue to use it to get you though the day and inspire others like me.
I am glad you got a confirmation from your second opinion. It must be a sign of relief. I am a newbie here and started to feel confident if I did everything right, I will conquer this monster and be done with. Now, I am realizing even if you do everything right, recurrence happens. I don't understand. It is so unfair.
Small pleasures, little miracles, yes, there's a lot to be grateful for. I wish all the courageous women on this thread a wonderful day.
Mimi
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Mimi,
Thank you so much for the kind words. I completely empathize on "doing things right" to prevent recurrence: I was so strict about my diet, I ran 10 k races, went vegetarian, and have always been an exercising, healthy-eating person, and yet. Here I am. Here we are. There are no guarantees, are there. So, I've loosened up a little and indulge in cupcakes and beef. Hubby, daughter and I are going to a really good steakhouse tonight, and o boy o boy I cannot WAIT. I'm going to drink a COKE and enjoy it! I'll be back on the health wagon tomorrow, but life's too short. I wish you small and big pleasures, Mimi, and courage as the days continue. Love out.
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The one thing that can bug me about this site (I have loved it for years) is how how easy it is to lose what you have written. This just happened Jo, when I went back to look at some of your previous blog posts. No worries as I enjoy my cup of coffee this morning watching and listening to many birds while looking out at windsurfers on this cool grey day. I read a few of your posts from the older one and the new one. One question~~ your new blog does not seem to allow me to go back and read your past one. Any advice? I have added your blog(s) to my bookmarks and plan to follow it. You write more frequently than I do and perhaps I will start to write smaller blasts rather than long posts.
I love it that you are going out to a steakhouse tonight with your family. Enjoy that steak but may I suggest replacing that Coke with the momito you mentioned earlier. I suspect that it would be healthier than a Coke. By the way I am using the dictation button on my Mac so please excuse any errors. One-handed typing especially with my left hand is often ridiculously time-consuming and painful when I try to use my right hand. As to pain medication, what I am on right now seems to be working. How bad is your nerve pain? Mine can be excruciating but never at the same times of the day or night. I only realized recently that my pain team at the cancer agency wants me to be pain-free. After all these months it makes me laugh~~ I did not really think that possible. I am still waiting to hear about a nerve block and I did call the office last week but as above there is a wait. Meanwhile I am not messing around with my breakthrough oxycodone and I'm taking it when extreme pain hits.
This month I have a chest and abdomen CT with contrast as well as a full body loan scan. I'm not concerned really because I don't feel like the pain has increased other than the occasional flareups that happen anytime.
Time for breakfast and I look forward to enjoying my day on my own. My nephew and his wife were here for a few days as much as I love them I look forward to a solo Sunday.
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