Ottawa ladies?
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Alana, JoJo, Chantal:
How about Art-is-In on city centre drive @11:30? We will beat the lunch crowd, it's yummy and decently healthy, is close to the transit way (5 minutes walk says oc transpo, and parking is easy ( although seems to me there is a slight cost).
I'll look forward to seeing you all! I will be wearing..hmmmm...a striped sundress and I have blonde hair. Chantal and I have met so we'll have an easier time finding each other..although if you are sporting your new hair, Chantal, I may not recognize you
Beth
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Art-is-in sounds good to me! I have blonde hair that's usually in a pony-tail or messy bun.
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Art-is-in sounds good - I'll see you there. My new wig is dark brown.
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great! I will be there. I have short blonde hair and glasses. Looking forward to meeting you
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hi ladies,
It has been a while for me.
2010 is when it all began with Triple Neg, BRCA1+ cancer. Dr Verma is my knight it shiny armour for an Oncologist.
2012 Dr N Guay was my reconstructive surgeon. Brilliant and despite his egomania, I loved him.
2013 came the ol' Cervical cancer. I had my ovaries/tubes removed in 2012...they refused to give me a hysterectomy. Guess they should've obliged. Stage 2b, so surgery not an option.
So, kicked that, and then this year after being persistent something was wrong....severe short of breath with exertion, new lymph nodes in chest and neck, lung clot and pancreatitis........I am told the cancer is back, and in the lymphatic system. But here's the tickler.....they found a mass in my heart. Assumed it was a clot like my lung. 6 weeks on blood thinners, and the clots are bigger plus 2 new ones. Turns out......maybe they are mets too!!
So sitting here in the Coronary Care Unit (which I was whisked into after my echo on Tuesday) and facing heart surgery, Stage 4 mets diagnosis, and contemplating what the hell happened!
So it would seem I have lots of experience, and also a newbie at the same time. Just wanted to start on this thread, because Ottawa is home.
Thanks for listening
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Welcome 22dragons,
Sorry to hear that your cancer is back. We have a great group of ladies here; glad you found us.
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22dragons,
Wow, that is a lot to deal with. Sounds like you have been through a lot and still more to come....good luck with your surgery and I hope they can do a lot for you to keep things at bay.
Chantal, Beth and Jo, it was great to meet you on Friday. Since I am the "newest" of all of you, I found it was so much good information for me and still trying to digest it. Let's get together again soon!
Alana
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Hey, sorry I didn't log in last week and missed the meet-up. I had to get my radiation at 1:00 on Friday so would have missed lunch anyway.
22dragons, sorry you are going through this but welcome aboard. There will be another meeting at Maplesoft soon, maybe you can come to that. One of us will post the invitation. Plus Breast Cancer Action has a lot of other services if you haven't already joined.
Two more days of radiation, I was really burned after session 13 Thursday. They prescribed the Betamethasone ointment which I am using sparingly. No bra summer, just loose tops (could get used to this.)
All the best to you Ottawa gals,
Cristalle
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22dragons, hope surgery went well. You have been through so much.
Cristalle, sorry to hear the burn-effects started. Good that they gave you a Rx. Is it the itchyness or burn-pain or both?
Alana, how is your side pain doing?
Chantal, forgot to mention to you that your wig is amazing! Hope you are still feeling ok.
On a personal note, I'm thinking of taking a beginner painting (watercolour) class in the fall. I think it would be good to lose myself parts of the day onto a canvas.
Have a great evening ladies! It was great meeting you ladies last week!
JoJo
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Cristalle, so did you ring the bell? Or any bell for that matter? Today you have finished! I'm sorry to hear about the burns and I hope that it heals well and quickly. I'm with ya in the no bra category...I'm doing it as much as possible. Oh, and my Knitted Knocker arrived!
22dragons, sorry to see that you are back and wishing you strength for whatever comes next.
Geez, let's get together for another lunch sometime in the not so distant future..it really was lovely. It gives me strength to see the courage of so many women
The waiting is getting tedious for me.
Beth
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Congrats to Cristalle on finishing radiation....are you having a lot of fatigue? Just wondering what to expect.
Jo, great idea to take a painting class. I do cross stitch and knitting and it's great therapy.
22dragons, how are you doing?
Though I think the pain from my lymph node biopsy is a tiny bit better, it is still really painful. I'm getting very tired of it. Wondering how long this can last, and then I wonder if side effects from the radiation may feel like this also. It is a real burning type of pain.
Take care everyone
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Nice pic Alana!!! Perhaps you should call your doctor's office about this burning pain. Even if they say it's normal, they may have some advice to comfort it.
Congrats Cristalle! What's next for you?
Beth, what is a knitted knocker? lol Yes we must arrange another get-together soon.
Today is nerve block day for me (migraine treatment). Only time I'm excited to get 15+ needles on the top and in the back of my head.
JoJo
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JoJo.. it was Cristalle who made me aware of it.. it's a knitted boob basically with stuffing inside. Of course mine came stuffed with a DDDDD and so I laughed quite hard at the size. I have since taken out 90% of the stuffing. lol It's very soft and can be used to help with any deficit by putting it in one's bra. I have a little gap on my left side. Made by volunteers. http://www.knittedknockerscanada.com/
On another note, BCA Ottawa introduced their fitness schedule for the fall... I'm sure not too many of you will have that high on your list however I was toying with the idea of signing up for a Friday one at St. Laurent. Depends on the timing of my treatments. I feel so much in limbo right now.
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Beth, LMAO you taking 90% stuffing out! What fitness classes are you thinking about?
JoJo
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I was thinking of Friday's 10-11 ..although I now realize that it's not a level 1 class which I would need. Monday's there are 2 in the a.m. These are both exercise classes. Things will be clearer after next Thursdays oncologist appointment. 10 am may be too early for rads as I requested mornings. If I'm having chemo then it won't matters tall. So, on that note I'm going to wait......
Waiting, waiting...
fiddler (aka Alana) how're you doing with your wait? You are like me,...waiting, waiting, waiting.....
Going to a cottage this weekend...this will keep my mind off it. My nerve pain is now officially gone. Soooooooo happy about this. Hopefully at some point the numbness will too but I can live with it!
Beth
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The waiting is not bothering me too much this time. Going to my family doc on Tuesday so she may have my results then. I am trying to mentally prepare for chemo, just in case. So Beth it really took this long for the nerve pain to go away? Did it lessen as time went on? Mine is still bad.
Meanwhile I am in Montreal this weekend enjoying my two beautiful granddaughters!
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Fiddler, mine was really bad for 2 days ( as in I could barely move and, although away at a cottage, was contemplating going to the ER) then after that it was more like shingles pain ( or from what others who have had shingles describe), but it slowly but surely subsided. Week 3 I could notice a difference and now, finally gone. Still numb in the armpit but I'm not concerned about that. Sounds like yours is worse. I'm sure your doctor will have some suggestions. Acupuncture is sometimes helpful too I've heard and that was my backup plan.
I hope you had a wonderful visit with the grandkids!
B
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hi, thanks for the welcome. I am recovering from open heart surgery. It was a tumor in my heart. I went for my heart ultrasound and they admitted me to ER. They got 70% of it out. Now hoping chemo will clear the rest. Waiting for the biopsy. I have to wait 6 weeks before chemo though.
BCA has great classes. Surprisingly the belly dancing is an amazing core workout without leaving you exhausted.
Dragon boating has new paddler sessions on Tuesday nights.
JoJo...I find great relaxation in painting. I have been to some Paintnites and done some at home. I. Highly recommend it
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Hi Girls! Hope everyone is doing well in their treatments. Hot flashes have returned into my life and so has bedside table fan. Energy is just about back but a good 15-min downtime lying down in afternoon still goes a long way in helping me enjoy rest of day.
Alana, any news?
JoJo
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Jo, I'm assuming the hot flashes are from hormone therapy? having just barely gotten over these, I sure hope they do NOT come back for me!
No news yet, I went to my family doc yesterday but she didn't have my pathology report! I see Dr. Arnaout tomorrow morning so will find out my fate then
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I'll be thinking of you tomorrow Alana..no matter what you find out, at least you will have certainty.
B
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thanks everyone. Just got back from the doctor--well, still a little more uncertainty as the receptor test results were not in yet. However maybe it's not as important now since Dr. Arnaout said the oncologist will recommend chemo anyway. Turns out the tumour was 3.1, not 2.2 as originally thought. The cell result remains at Grade 3, and my stage is still Stage 2.
The good news is that there were clear margins, and no spread to the lymph nodes (whew). I should have appts with the MO and RO within the next two weeks. I guess I will try not to fuss too much over the possibility of triple negative. Over the last week, I've been trying to mentally prepare for the fact I might need chemo, so I am feeling OK about it now.
Also my nerve pain is because the Seroma I have is pressing in the nerves! She said the Seroma should go down within a week. I said Tylenol and Advil weren't working on it so she said I should be taking the Dilaudid prescription she gave me (duh. !) I only had acouple pills left so she gave me another prescription.
Does anyone know which they usually do first, chemo or radiation?
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Alana, hearing the words you have been mentally preparing for still must be difficult. I think chemo is done first and then radiation. A resident had come in to talk to me before the MO came into the examining room. Resident told me chemo was going to be recommended and then radiation treatment would be done after. Hope the Rx helps you with your seroma pain.
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Alana, no wonder you've had so much pain!! Hopefully it's of some comfort to know that the seroma will lessen, and the pain should then subside. I'm surprised your results didn't come back but probably just missed it by a few days, however you know your next step. I'm sorry to hear it's chemo and I will be joining you on that boat.
I had my Oncotype results meeting yesterday with the MO. It was a high intermediate score, which I hadn't prepared myself for...in this long 3 weeks I had sided believed in my mind that I would just need radiation and a low onco score would just confirm that, I'd have peace of mind, and onto rads I'd go. So my MO left it up to me...well, not quite in those words but she said sleep on it. ( of course I didn't sleep too much!!!) I really do not want to have chemo and it scares me thinking about it, however the idea of distant recurrence frightens me more so I have decided to throw everything at this and do it. It will start in 2 weeks which isn't the best timing but then again, when is? 4 rounds over 12 weeks. Somehow 4 rounds seems better than the possible 8 rounds I thought it would be. And Chantal you looked so good when we had lunch, I figured, how bad could it be?? Already I'm starting to look on the bright side.
On another bright side, I've put my name in for one of the level 1 BCA classes that are on Mondays, first choice the 10 am one at st. Laurent or second choice at 11:30 at the Maplesoft centre. Anyone care to join me?
I also can't recall who is in Babes4Breasts Headstart?
B
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Hi,
Beth, I'm so sorry to hear you also have to have chemo!!! I couldn't get to sleep last night thinking about losing my hair...I've always been very particular and fussy about my hair looking good and so this is a scary thought. On the other hand I always thought if I have to have chemo I will let my hair come in grey and see how it looks (it's VERY grey underneath!)--I'm so tired of getting it colored (have to do it every month since my hair is short)...people always think I'm so much younger than I actually am so I'm not sure the grey will work for me.
I would also like to know who is in the Babes4Breasts program--are you doing it, Beth? I'm signed up but am waffling on whether I should withdraw.....I really don't want to wallow in this whole cancer thing, but I do want to meet other people in Ottawa that I can get support from. Or if anyone on this board has already done it, I'd love to hear if you liked it and why.
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Alana, I'll be doing the same...seeing what the gray looks like underneath. I do plan on getting my hair buzzed off before it falls out and try to rock some headscarves before I "have" to. It's a tough thing to come to terms with, and you have lovely hair
Yes I'm doing the babes4breasts program..figure I can use that extra support. my onc called today and I will start September 16, just after that group starts ( the timing isintentional so I can start the group). I hope you decide to do it. I've heard it's very good. I think also Melodie is registered, but haven't heard from her on here lately...hope her chemo is going okay - she's using Cold Caps to save her hair.( see previous posts)
B
B
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Hey! I just read the latest posts. Fun getting mentioned
Yes i had my first chemo infusion Monday the 22nd, and tomorrow i might begin to know how effective the scalp cooling will be for me. So far my hair is completely unchanged and my scalp feels normal, too. My leg hairs have slowed down to about 1/3 of their usual growth rate, maybe less, just in the last week.
The first week after chemo was a wild ride. For the love of Pete, get the number for the 24/7 nurse in advance! I wanted to have one of the anti-nausea injections in the middle of the night, but did not yet have the number. The metaclopramide pills didn't seem to work so well for me.
The chemo infusion and cold capping all went very smoothly, and i felt great afterward. Had a scooter ride from the Glebe to Dow's lake, along the canal. It was a golden afternoon. Nausea hit at 1am that night, full tilt for 13 hours, getting up every 60 minutes then every 90 minutes to feel horrible then go back to bed. It didn't last forever though, and next time i'll be able to call the nurse and get the shot.
Everything got gradually easier after that. I had hours at a time of feeling well, then general mild queasiness. Since day 8 i've been right as rain, pretty much.
What worked really well for me was a different anti-nausea medicine an hour or ao before bedtime. Nabilone 0.5mg, covered as part of the prescription program we get when receiving home care. It is a synthetic version of THC, and it simply took the nausea away without affecting my consciousness. The metaclopramide made me feel heavy and woozy and dazed. For me, the Nabilone was much better. My family doctor had referred me to the Cannabinoid Medical Clinic, and i happened to have my appt with them on day 4. The lovely doctor there rX'd the Nabilone, thank dog.
Overall, i'd say i agree with those who've said the anticipation of chemo is worse than the reality.
I hope everyone is doing well
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Beth, Alana, Jojo - sorry to hear that you need chemo.
Melodie - glad to hear that your anti-nausea medicine helps.
I'm halfway done with chemo! I had my fourth and last AC treatment on Thursday. I'll be starting Taxol on September 15 (four treatments every 2 weeks).
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Hello everyone, I went away for the long weekend so missed the recent posts.
Seeing a new gynecologist on the 12th so hope to get some relief from the night sweats and hot flashes. I am trying sage pills from A Vogel, has anyone any experience with natural menopause remedies and which ones?
Happy to finish rads and not need anti-hormone therapy. Seeing the MO on the 30th for follow-up. So for now it is OVER! I took cherry tomatoes instead of Timbits to Lab #5 on my last day but did not ring the bell.
I teach music Wed nights so can't continue with the Maplesoft group. Andrea wants to start something in the daytime, is anyone else up for that? I can also get to a luncheon now. She and I are also working on publicizing Knitted Knockers when they are ready to start servicing the cancer clinics (like the caps for chemo patients.)
I wish everyone well who is going through chemo. Melodie your report is very encouraging, I love how scientific you are as I'm very evidence based.
Next step is Fit and Fab on Wednesday mornings at St Laurent. My second choice is the Monday at Maplesoft. My other emphasis will be risk reduction to prevent recurrence. I am nulliparous (never been pregnant) which is the highest risk factor. The breast tissue changes when you start lactating and your risk for BC drops 30% at that point. Who knew?
Cristalle
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Chantal, congrats on getting halfway through. Hope the new chemo doesn't cause any bad side effects.
Had a bit of a Pity Party for myself yesterday. I'm disappointed that I didn't get my full pathology report, and at having to wait (yet again) to hear of my next appointments with MO and RO. Anxious to make out the full plan and get on with treatment.
It's been a long summer with all this uncertainty plus that of my husband being out of a job. Things really slowed down in his job search in August and we started feeling discouraged. However today he had an interview for a very high-profile, interesting position and he thinks he did well. Just crossing our fingers that they liked him! I'm wishing I could do more in terms of bringing in income, too, but I don't know what to expect with my upcoming treatment--how I will be feeling, etc.
Anyway I woke up feeling better today and am relieved that hubby did so well in the interview. It would be a great position for him to end his career with--he is well suited to it and would be able to contribute a lot.
Looking forward to my sister and mother visiting--they will be going to Montreal this week and my sis will come down here for a day and then we will drive up to Montreal together to see my mother and aunt. My mother's identical twin lives in Montreal and has also just been diagnosed with breast cancer. Unfortunately hers has already spread to her lungs....we are hoping they will be able to put her into a good remission--she is getting chemo now and tolerating it pretty well.
thanks for listening, ladies!
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