Apr 30, 2019 04:39PM bravepoint wrote:
Fairydragonfly- I know the feeling.... I'll be thinking of you tomorrow. It will all go fine! Hugs.
Canadian health care, clinical trials, and life in general in the north.
Posted on: Sep 21, 2011 06:07PM
Posts 1231 - 1260 (1,275 total)
Apr 30, 2019 04:39PM bravepoint wrote:
Fairydragonfly- I know the feeling.... I'll be thinking of you tomorrow. It will all go fine! Hugs.
Apr 30, 2019 04:48PM Mudstick wrote:
I think its perfectly understandable to feel completely overwhelmed right now!! I tried to remain positive by thinking that after my surgery, I would be cancer free. However, I would oscillate between calm and panic, hopefulness and despair, happiness and anger, clarity and confusion. And I still do sometimes, but a whole lot less. Someone told me there are no straight roads and no flat roads along the cancer journey....and it is so very true. I promise, it will get better.
Deep breath - you've got this!
May 2, 2019 08:34AM Fairydragonfly wrote:
All in all, things went well. I'm home and managing the pain. Have more arm mobility than I expected, which is a relief. Sleep wasn't very good, but can nap throughout the day.
Thank you for the support. ❤️
May 2, 2019 01:36PM bravepoint wrote:
Fairydragonfly - Glad you are home and doing OK. I was thinking of you yesterday!
May 17, 2019 09:50PM Mudstick wrote:
Fairydragonfly - Thinking of you and hoping your recovery continues to go well and that you are sleeping better :-)
May 17, 2019 10:03PM Fairydragonfly wrote:
Thank you. I struggled with fatigue for about a week, but seemed to have made it out the other end. Started the Head Start program at OICC last week and met with a physiotherapist at Haley Rehab yesterday. Feel like things are going okay. I went for genetic counseling and went ahead with the panel of 17 genes. The waiting part sucks. Dr. Arnaout left a voicemail message that my margins are clean and no cancer in the lymph nodes. I see her on the 24.
Thank you for checking in on me. ❤️
May 24, 2019 08:34PM Fairydragonfly wrote:
Saw the surgeon today. Pathology report was good but did indicate grade 3. I'm seeing the oncologist on Tuesday (Dr. McGee) and the radiologist on Thursday (Dr. Lochrin). Very nervous/apprehensive about possibly starting chemo.
May 28, 2019 12:19PM Mudstick wrote:
Best of luck with your appointments this week Fairydragonfly.
Hopefully they will do Oncotype testing and my fingers are crossed that you will get a low score and not need chemo!
May 29, 2019 09:11AM bravepoint wrote:
Fairydragonfly- Hope the appointments went well yesterday and you have a plan in place. What % ER + are you?
May 29, 2019 09:23AM - edited May 29, 2019 09:24AM by Fairydragonfly
My estrogen receptors are weak (I think she said 50% and they like to see them in the 90+ range), and combined with no progesterone receptors makes me closer to triple negative. Combine that with my grade being 3 and the recommendation is chemotherapy (TC - 4 cycles, every three weeks). Because I am holding out for any shred of good news, we went ahead with the oncotypeDX test. Means chemo won't start until the end of June as it takes a few weeks to get those results back. After chemo and radiation I start Tamoxifen, but right now I have to start transitioning off one of my antidepressants as it conflicts with the Tamoxifen.
I'm upset and scared. The information I received from the surgeon before the surgery had me feeling pretty hopeful/relieved. But it seems to all be going in the opposite direction. I need some time to digest it all.
Thank you for checking in on me.
May 29, 2019 09:33AM bravepoint wrote:
Fairydragonfly - I totally understand. Even though I was prepared for the worst (my surgeon told me that I would need chemo and rads) I basically had a melt down when the tumor biopsy results came back, grade 3, 1 lymph node +, ER 3%, PR -.....I was so disappointed and upset. I survived 6 months of chemo and I won't lie, it was very hard. You will too if it comes to that!
May 29, 2019 12:33PM Mudstick wrote:
Fairydragonfly - I'm sorry to hear you are possibly facing down chemo. I can only imagine how upset and scared you are :-(
I hope you can lean on the support of those around you and of course on everyone here at BCO to get through the hard times.
May 30, 2019 06:18PM Elizabeth9 wrote:
Dr McGee is my oncologist. Just saw her yesterday.
May 30, 2019 06:34PM - edited May 30, 2019 06:40PM by Fairydragonfly
I liked her. She didn't make me feel rushed, listened to my concerns, and made me feel like I am involved in the decision making process.
Thank you for the continued support. In the end, I know I will do whatever it takes to give myself the best possible future.
Any recommendations for places to get a wig? 😜
May 30, 2019 11:16PM Fiddler wrote:
I totally get where you are. I was expecting my report to be like what they told me the majority is, meaning I would probably only need radiation and then hormone therapy. Well I was surprised to discover my tumour was bigger than they had thought, and I turned out to be hormone negative and HER2 positive. For both those reasons I ended up needing chemo (and then had a year of Herceptin). I did find the chemo very hard, but everyone at the Ottawa hospital is so caring and compassionate that really helped. I have a great husband, I couldn’t have done it without him.
Rely on those around you, don’t be shy about asking for support/ help, you will get through it and come out on the other side!
May 30, 2019 11:26PM Fiddler wrote:
Sorry! I forgot one of the reasons I wanted to post. I got my wig at Caralyn’s:
The lady there is super nice and very caring, you get a consultation in a private room and she really listens to what you want. After chemo started, she also shaved my head for me. The wig was SO good people just couldn’t believe it was a wig! Yes it was kind of expensive but Really worth it, to help me feel more like myself (I got one that was very close to my own hairstyle). Also, if money is an issue, they have free wigs provided by the Canadian Cancer Society (I think), they have a little shopat the hospital. Ask someone there and they will tell you about it.
May 31, 2019 03:26AM Fairydragonfly wrote:
Thank you for the encouragement and recommendation. I will see what Carolyn's offers. I'm trying to be more open and honest with people when they ask how I'm doing (it's sooooo easy to say I'm fine). I created a Caring Bridge website to make it easier to let people know how I'm doing and what I need help with. I think it will help me say what I need without the awkwardness of contacting individual people.
Jun 3, 2019 10:32AM bravepoint wrote:
Fairydragonfly - I got my wig from the Canadian Cancer Society for free. It was at a location in Kanata. They are "used" so you can return when you are done or not up to you. The volunteer made me feel right at home and helped me narrow down the choices, styled them for me and was just great through the process. I decided to go with one that looked a lot like my hair had been so most people didn't know it was a wig. I found it hot and a bit itchy so really only wore it out in public like shopping etc. i had a huge selection of hats, scarves that were much more comfortable.
Jun 7, 2019 12:59PM Fairydragonfly wrote:
I had my appointment at Caralyns this morning. It went well. Found a style I like, she's just going to get it in a colour I like (I'm so not a blonde, lol). I was shocked at the price, but I have coverage through work which will help.
I was quite emotional going through it, another instance of it making this far too real.
Jun 12, 2019 10:22AM Sportymom wrote:I am brand new to this forum and am crying as I type. I found out lat Friday that I my biopsy of the mass in my right axillary tail area (the only reason I found it was because it actually lay between the muscle and axillary tail and hurt) was invasive ductal carcinoma, 7.1mmx7.6mmx3.4mm (thereabouts), intermediate grade, and had micropapillary features (which in terms of my reading of PubMed makes it rare and very aggressive). I am the only one in my family on either side to have breast cancer with only two other having any type of cancer (one first cousin with prostate cancer and a maternal grandmother who passed away at the age of 84 of NSCL cancer and she was a smoker for 50 years prior to that).
I am shattered. My family means everything to me and all I can think about is not being around for them and getting to see my kids grow up/growing old and grey with my husband. I am still trying to be productive at work (I work in medical epidemiology in the common drug review so am used to seeing the clinical study reports coming from drug manufacturers) but admittedly am having issues. I am trying to remain positive around everybody but I feel like my hopes and dreams just came crashing around me. I feel such utter despair and a feeling of such hopelessness that it feels paralyzing at times. I haven't had much time to be truly upset as my husband took the kids and I to Formula 1 and La Ronde this past weekend (which I am grateful for as it was really good to get away) but now that I am back in "real" life I feel like I am crumbling. There are times that I do feel positive but I always was a person who was scared of the worst and, now that the worst has happened, I feel completely out of control.
I should say that I have an incredible support system in terms of family and friends. My surgeon was also incredible and seemed quite optimistic, although I worry about two things, 1) that they are always like that and 2) that I will get my hopes up only to have them dashed after the tumour is removed. He is incredibly personable, understanding, and funny. We joked around because he could not actually really feel in the tumour until I literally guided his finger to it after which he said, "I cannot believe you found that." The surgeon somewhat downplayed to the micropapillary features and simply said that it has a higher ability for loco-regional recurrence but said, when matched with someone of the same stage, grade, etc. with someone with IDC that the overall survivals were similar. That said, I am still incredibly worried, depressed, angry, and terrified.
I have a breast MR tomorrow night at the General to see if the rest of my breasts have anything in them and then will meet with the surgeon again.
Simply looking for any kind of support. I am trying not to burden my family so am seeking some help for some of you. I should state that I am 45 years old.
Thanks for listening to me.
Jun 12, 2019 10:33AM Fairydragonfly wrote:
Sorry that you're here, but glad that you found this forum. I'm 43 and was diagnosed two months ago with IDC grade 3. Feel free to contact me if you need/want to chat. I also recommend signing up for Head Start at the Ottawa Integrated Cancer Centre. It is a six week support group that I am in that has been a huge help with dealing with the emotional side of things. I also recommend getting in touch with Breast Cancer Action Ottawa. They connected me with so many valuable resources that have gotten me through the last month.
Jun 12, 2019 11:16AM Sportymom wrote:
Many thanks for your response. When I was filling out the paperwork with my nurse at the Ottawa Breast Screening Centre, there were several options to tick off (all of which I did) for counseling, support systems, groups support systems, etc. I am not sure what happens with those but I assume I will hear soone enough.
I will look into Head Start and Breast Cancer Action Ottawa.
Jun 12, 2019 02:00PM Fairydragonfly wrote:
I did that too, but the hospital it short staffed in psychosocial oncology. I have not heard from them except when I reached out.
Jun 12, 2019 03:43PM Moderators wrote:
Sportymom, we are really sorry you too find yourself here, but you can see you've landed in a very supportive place, and are not alone. Indeed, as Fairydragonfly suggests, reaching out will probably get you support early than waiting. Please let us know the results of your MRI. One step at a time. Try, if possible, not to jump too far ahead/
Jun 13, 2019 01:08PM Mudstick wrote:
Wishing you all the best with your MRI today. So sorry that you have received such shocking news and find yourself in this overwhelming position. It sucks, especially where you are right now...the unknown, the waiting, the uncertainty. Its very easy for you mind to go to dark places. Its a really horrible place to be, but with time, things will settle down and although everything is still a bit of a roller coaster, the highs and lows will even out (a bit).
Another resource you may be interested in is Cancer Coaching through the Ottawa Regional Cancer Foundation (Maplesoft Centre). They can definitely help you navigate provide amazing support as you go through and its a free service.
Jun 13, 2019 02:42PM Sportymom wrote:
I have to say that I feel like I am in a very dark place right now. I wake up every morning with fear, dread, anxiety, and terror of which I am trying to put on a brave face for my children. I am truly lost right now. I feel like I have so very little control right now that I find it hard to keep going. This has affected my sleep, the things I love doing, my eating (or lack thereof), and definitely my happiness. My mom broke down in front of me yesterday and it literally broke my heart. Luckily, my husband is still a rock and (after fleeing Yugoslavia in the war, having his house bombed, and everything he knew change in a blink of an eye) he continues to say to live each day out at its fullest. That has always been his motto. I am trying but it is not easy.
A good friend of mine has told me to try a trick. She says try to put an elastic around my wrist and every time my thoughts rush to those dark places to give it a little snap to get myself out of it. I fear that my wrist will be permanently red LOL! However, I think I need to give that a go.
Thanks for sending the thoughts. I really had no idea how many supportive people are out there during your darkest time. As special and wonderful as it is, it makes me overwhelmed with tears as I really want to beat this but literally have no control over what happens at the molecular level inside me. This loss of control to someone who is a control freak is also very overwhelming.
Love to everyone out there with this.
Hugs to you.
Jun 13, 2019 07:37PM bravepoint wrote:
I was where you are nearly 3 years ago.The not knowing what to expect or what treatment you will have is the worst. My surgeon told me that I would be looking at a year out of my life which was pretty much true in my case. I had surgery then did 6 months of hard chemo followed by 35 radiation treatments. It was the hardest thing that I have ever been through, I woin't lie but the support of my husband and sons and good friends got me through. I am 2 years post treatment and feeling much more like myself. Good luck! Stay strong.
Jun 14, 2019 12:13PM Mudstick wrote:
I'm hoping your anxiety, insomnia, and dark thoughts don't continue to overwhelm you. I think they are all completely normal at this point in your diagnosis, but please - if you need to, do not be afraid to contact your doctor or other supports for help to get you through this agonizing time. I went through a very dark time after my surgery and a few months after starting Tamoxifen. I couldn't control the fear of recurrence and was withdrawn and crying randomly and uncontrollably. I knew I needed help and reached out for it. My physician put me on Effexor and its been a life changer. I don't think I ever realized how much anxiety I was feeling (even before diagnosis).
I hope you are able to feel more control once you have a treatment plan in place and more of your questions answered. I know if felt a lot better once I had more information and was able to plan and make decisions!
Jun 19, 2019 09:51PM Fiddler wrote:
I echo what mudstick just said--be sure to reach out if you feel you need help. For me, it hit at the end of the year of treatment: crippling anxiety, finally went on an anti-depressant and that really helped. I'm not gonna lie, it will be a tough road ahead but you can do it!
It sounds like you might have Dr. Clemons for your oncologist? I have him and I cannot say enough wonderful things about him! He is truly such a compassionate doctor, just absolutely the best. I suffered from a rare complication from chemo and he was totally honest with me about the seriousness of it. I really value that in a doctor.
For many people, the most difficult part of this is at the beginning, when there is so much uncertainty around everything. Once you get a treatment plan and learn more about your particular type of cancer, you will know what you are dealing with, and that makes it easier.
Best of luck, you can do this!