Does the post op trauma never end?! It’s been just over a year since I had surgery and my arm and shoulder have had issues on and off ever since. Recently these issues have gotten worse. I’ve been dealing with FROZEN SHOULDER for the past few months. I’m still going to physiotherapy and massage therapy. It’s getting better but it’s a slow process. Last week I noticed pain in my wrist area, which progressed and when I straighten my arm there is pain from the axilla all the down my arm to my wrist. This happened several months ago and resolved in a few weeks with stretching. It’s now come back and seems to be a bit worse than the last time. My forearm is swollen and in pain. It seems to be from LYMPHATIC CORDING or AXILLARY WEB SYNDROME. The below explains a little bit about what it is.
“Axillary web syndrome (AWS), also known as cording, sometimes develops as a side effect of sentinel lymph node biopsy (SLNB) or axillary lymph node dissection (ALND). Both procedures involve removing just a few (SLNB) or many (ALND) of the axillary, or underarm, lymph nodes. Most people with breast cancer need to have at least one of these surgeries. Scar tissue from surgery to the chest area to remove the cancer itself also can contribute to cording.
If you develop axillary web syndrome, you’ll often be able to see and/or feel a web of thick, ropelike structures under the skin of your inner arm. Lymphedema therapists often call these “cords.” (In some cases, you may not see or feel the cords, but sensations of pain and tightness will tell you they are there.) You may first notice them when you’re doing something that involves raising your arm to shoulder level or above your head. If it happens, cording typically occurs anywhere from several days to several weeks after your surgery, although there have been individual cases where it appears many months later.” – breastcancer.org
I’m trying to exercise 3-5 times a week but when in pain with arm/shoulder issues it can make it very difficult. I’ll try to continue my modified workouts and hopefully at some point things will get back to normal or should I say my new normal.
All of this is exhausting. Every time I start to feel better and feel like I’m making progress something else happens. If it’s not one thing it’s another. Since November I’ve been sick (cold/flu) every few weeks. Each time I get sick it takes me forever to get better so then it feels like 1 step forward 2 steps back. On top of all that, the emotional effects of everything are also there to deal with. SIGH … Right now I feel drained. Part of that is because I’m physically really tired. Didn’t get enough sleep last night. That never helps.
At the end of the day, I’m still here living my life and I’m happy! 🙂
Looking forward to dinner with a friend tomorrow and also excited planning my trip to EUROPE in August. London Paris Milan Rome and Florence! Can’t wait!!
For some reason today’s been a difficult day. Actually, let me correct that, today I had some difficult moments. The entire day overall was fine. I’ve learned not to let things get to me and have gotten better at letting things go! Since I’ve applied these strategies I’ve been a much happier person.
Woke up feeling good and actually woke up early which is tough since I still sleep 9.5 hrs on average. This is normal for me right now and is slowly getting better so hoping that another 6 months and I’ll be down to 8 hrs. Again I wish that someone, like my previous oncologist had mentioned this. Oh well I’ll ask my new oncologist how long this dreadful fatigue could potentially last.
Back to my difficult day. I was in the shower and for whatever reason starting thinking about my cousins, my brother and their kids. I’m referring to the cousins I’m close to as I see them often even though they don’t live here. There are a few weddings this year and if possible we will all be there. Although I don’t think everyone will be at each wedding. Even still what happens is, when my cousins and brother are there with their kids and then there’s just me, I feel very excluded. Because their kids are all younger it feels worse. Then along with that, I’m sure there are people judging me and some feeling sorry for me. Don’t need anyone’s pity, I’m perfectly fine. A lot of people are also so insensitive and have no self awareness. This makes things tough because I could be fine and someone could say something thoughtless and then all of a sudden I will feel very sad about not having any children. Thanks to Breast Cancer I never will. The gift that yet again keeps on giving.
I’ve accepted this part of my story but I have moments where I want to be Mommy and not just Aunty. Especially when it’s always around me. I’ve made new friends who don’t have kids and even met up with an old high school friend I hadn’t seen in 20 yrs. It was so nice to see her! She is also single with no kids. So we were able to relate on a lot of different levels. She also wants to just travel and maybe even move from here. We were so on the same page haha.
I really am fine and this was just a bad day. Tomorrow is a new day. Who knows what exciting things will happen!
I wrote this last JUNE … Summer is here and with that comes summer clothes that are less bulky, where it’s noticeable that I have one breast. The radiated skin is sensitive and wearing a bra for too long is uncomfortable. Because I don’t have big breasts, most of the time I’ll just wear a sports bra and tank top … Like right now as I’m getting a pedicure. I’m also socializing a bit more now so it was time to finally get the prosthesis I’ve gone without for 6 months! Sometimes I’d just put some material in my bra and it worked lol. Oh well … It’s OK, I’m happy I’m alive!
I’m now living in the suburbs with my parents and will be in my own place and still out of the city for at least another year. It’s OK … I’m happy I’m alive!!
Was so interesting to read what I had written 3 months post treatment!
I’m so glad that I started writing this blog. It got me through some rough days since writing helped get it out. It’s also something others can read, whether it’s something they can relate to or whether they’re learning about another persons journey through breast cancer treatment and life afterwards. I also love to write so it was (and still is) a great way to document everything. Reading the above reminded me of where I was and where I am now. I will only continue to feel better.
A lot of things still don’t bother me because I’m truly just thankful and happy to be alive. There are a lot of things I don’t care about anymore, insignificant things that may have bothered me in the past. I try to live in the present and not worry about the future as worrying isn’t going to change it. I’m also more focused on doing the things that make me happy!
And as for my one breast, it’s been a year and 2 months since the mastectomy and I don’t really care that much. Yes I want to feel normal again with two breasts, and I don’t want to worry about wearing my prosthesis and thinking about certain clothes that may be too low in the front. Actually I don’t really care about the ‘being low in the front’, I usually will wear it anyways. The hassle of the right bra with the prosthesis is a pain, especially when I want to wear a strapless! Ugh. Still working on that one. I’d like to just look and feel like myself again but if I have to wait another year for the reconstruction it really doesn’t matter to me because I’M HAPPY and GRATEFUL FOR MY LIFE. 😊
I’m a very open, honest person and sometimes I end up speaking freely and sharing too much. Then afterwards I regret it. There are those close friends that I can freely share things with but with most people it’s best not to. There are also those people that make comments that aren’t positive which leaves me feeling a bit irritated. I’m still sensitive at times and really need to remember to be careful about who and what I share. I guess it’s not natural for me to hold back too much so I have to make a conscious effort to do that. Of course I don’t share everything with everyone but I think sometimes I need to remember to keep certain things to myself. I’ve gotten better but still working on it.
I’ve also realized that most people are not as honest as I am and aren’t as open. That leaves me at a disadvantage because then they end up knowing far more about me than I know about them. Things are always best when balanced.
I just need to work on thinking more before speaking. My brain is still not what it was so thinking too much takes energy. Sounds so crazy to say that!! I have blonde moments and can’t remember things. A lot of the time I want to turn off and I can’t focus as well as before. Talking even takes energy and sometimes it’s not something I’m up for. Wow even mentally I feel like I’m 40 going on 80. Haha. It’s something that I laugh at rather than letting it frustrate me. 😉
I will try to be more discerning with what I tell people. They don’t need to know everything. Funny that I’m saying this as I write my blog lol. BUT the thing is when you’re writing you have the option to go back and change what you’ve written or delete it completely. Gives you a minute to think about it. Wish I could do that in my head. The key is to think before divulging anything too personal and to know who you can openly share with.
I’m exhausted and going to bed now. Yes I still have fatigue 11 months post treatment. However, I’ve been sleeping well which is a really great thing!!
I can’t believe it’s been a year since my last chemo cycle. November 27, 2013 will be forever etched in my brain along with my diagnosis date, surgery date and treatment end date. I read my post from this day last year … wasn’t as bad as I expected. Maybe I was just so happy that it was my last one and chemo was over! I wish I knew then that a year later I’d be OK. I guess I really wasn’t thinking that far ahead since I still had surgery and radiation to go through. And let’s not forget the fact that I still had the chemo nasty side effects coming. The day of treatment was never really that bad. I’d usually feel really sleepy and physically fatigued but it gets worse the next day and then continues. I do actually remember my last cycle and what happened after. It was horrible, horrible, horrible! Pain in my bones, complete exhaustion, blisters in my mouth, burning tongue … TAXOTERE is a nasty drug. I was injected with toxic chemicals for 18 weeks! It feels surreal at times but I got through it and I’m still here! I wish I knew that I’d still be here. I wish I knew that I’d feel better emotionally. I wish I knew that I’d be happy and enjoying my life even though I’d still be recovering. It’s funny how at that time all I was trying to do was get through the day and then get through the next day. Well I got through 365 days!
It’s still one day at a time and I kind of like it better that way. Helps me live in the moment! I’m happier and I think on my way to being healthier than before. So we will see what I’ll be saying this time next year. I think after all the bad there’s lots of good to come!
Ten days ago was my last day in the office (for now). The funny thing was I started having mixed feelings. It felt strange to be leaving again. I was getting a bit emotional when I was saying goodbye to everyone. I’m not quite sure why … maybe because someone who had breast cancer had recently passed away only a year after treatment, maybe the realization that I’m still not well enough to work full time, maybe feeling like I may never see these people again. I don’t know, maybe a combination of all three. It was unexpected but at the same time expected and understandable. How strange to continue to be overwhelmed with emotion. Now it’s random moments where I don’t know what to do when it happens as I’m usually in a situation where I don’t want people to witness the flood of emotion! I guess all I can do is breathe and tell myself whatever I’m feeling is OK. And really who cares if people see me cry, everything I’ve been through is CRY-WORTHY. It’s my party and I’ll cry if I want to, cry if I want to, cry if I want to, you would cry too if it happened to you!
Got a call from my health management consultant to inform me that my work stoppage has been approved! What a relief!! I’ll be at work one more week to wrap things up and then I’ll be off for a few months. So happy! I can focus on my recovery which means eating healthy (which I do most of the time) and also exercising 5 times a week which I haven’t been able to do. I’m also really excited to finally get my place fully unpacked and organized! Yaaayyyy! Of course I get paid less while off but what I get still isn’t bad. So thankful for this!
I’ve been home sick for two days. Didn’t go to work today. Tomorrow I’m also going to stay home. Resting and having some good food is really helping me feel better! I’ve been preparing more food, more salads and other healthier foods which has been great! I was reading an email I received listing the best Cancer fighting foods. I also attended a webinar at work on the same topic. Don’t think I listed them here but will list both in my next post.
It’s Thursday my favourite tv night. Yes I watch way more tv now haha. Being home for almost a year there was not a whole lot I could do. “Scandal” has gone down on my list and “How to get away with murder” is up! Love that show!! Not what I expected at all.
Hope everyone is doing well! XO
It’s been awhile since I’ve written. I’m so exhausted with work, exercise, organizing my place and trying to have a life. But at least I am alive and living my life! Last week I found out that a friends sister in law passed away a year after finishing breast cancer treatment. So sad. I am so thankful to be alive and try to appreciate and be grateful for all that I have.
Two weeks ago my oncologist gave me a letter to support being off of work completely for another 4 months. So happy and relieved!! I feel so much better knowing that I can take the time to fully recover and focus on my health. I need to be strong physically, mentally and emotionally before I return to work full time. It’s hard to know how you’re going to feel until you are there. I’ve been back for 4 months and managing my post treatment regimen has been a struggle. I’m also so excited to actually fully unpack and get my place organized. That will also make me feel a lot better! No one tells you that just because treatment is over doesn’t mean that the journey ends. The physical after effects continue and emotionally you also need time to recover. No matter how strong you are it takes a toll. Some people may not show it and everyone deals and reacts to things differently but it takes a toll.
Very soon I can put 100% into my health, well being and recovery.
During the past month I’ve been going through all my follow up tests. Starting with a mammogram last month which of course was painful but at least it was only one side (no breast tissue on the other side). Then after that I had a (low grade) CT scan. Waited over a week for the results which was agonizing but I resolved within myself to be OK with whatever the results were. Finally got a call and both were good!! In fact the mammary node had shrunk. It could have already been my normal mode size but because there’s no baseline we didn’t know for sure. The fact that it’s smaller now it’s a safer to say that the cancer cells have been eradicated. I can’t express how RELIEVED I felt. I was at work and walked into the bathroom because I had tears of joy and needed a minute. Until that point my oncologist had told me that there may still be some Cancer cells there. Not the case anymore. Wooo Hooo!!! A week later I had an MRI and after that an Ultrasound bc something came up in the MRI that they needed to make sure was nothing. The torture of waiting for test results. Ugh! So again the agonizing wait but all turned out fine. EXHALE …
I am so relieved! I will be positive and happy until my next follow up in 6 months. It’s like living in 6 month increments. Living life 6 months at a time. Trying to get to that 5 year mark where you can say you’ve made it that long and are out of the woods. SIGH. Right now I’m 7 months post treatment and alive! So grateful for that.
It’s been a brutal day and I’m wiped out. I had a busy weekend with my aunt visiting from Alabama. It was great having her here but I was so tired last night after she left. Also got into an argument with my mom last night. I’m still pretty emotional and of course once I started crying I couldn’t stop. Ugh. My mom and I sort of resolved things by the end of the night but getting there took awhile and I was exhausted. My brother talked to me for a bit which helped and then I went for a short drive to clear my head. I love driving and turning up the music. Driving and singing, singing and driving … usually helps me feel better and emotionally get to a happier place. Funny how that happens. You gotta have your Go To when upset, angry, or sad. I used to workout or shop (love that one haha) but it was late and I was tired. The working out is no good now since fatigue is an issue. Already in the car the drive was perfect. Not a huge fan of Taylor Swift but Shake It Off came on and as I started singing I felt the words, the song and started to shake things off! How perfect was that?!
Today I went to work, my first 8 hour day. I was exhausted after a tiring few days and by the time I got to work I wanted to go sleep. The day had barely started and I had to have 2 coffees. I don’t even drink coffee!! 11am I had a meeting with HR regarding my pay for vacation I took. There was confusion because vacation is not allowed while on a modified work schedule. I was told they made an exception for me due to having a flight credit from a cancelled trip last year. So then what, I can’t take vacation for another year if I’m still on a modified schedule?! That’s not fair! Ridiculous!! And no one told me that I couldn’t take vacation on a modified schedule, no one told me I’d have fatigue that could last up to 5 years (average 2 years). My oncologist should have informed me but of course she didn’t and that just adds to the list of reasons why I changed to Dr. Brezden, who I love! My HOT, BLONDE ONCOLOGIST. Haha!
The Disability team keeps pushing me to work more. I’m doing what I can but I’ve realized that I came back too soon. I should have waited until 12 months post treatment but instead I came back 3 months after finishing treatment. What was I thinking!!?? No empathy, compassion or understanding from the disability team. My boss who has been amazing through this told me that he would support whatever I decided to do. He suggested being off full time again, which after my meeting today, was already what I was thinking. It’s frustrating to have them treat you as though you’re doing something wrong when you are just trying to take care of yourself and recover. Gonna talk to Dr. Brezden and find some resolution. Tried not to get too frustrated and just had to shake it off, shake it off.
Since coming back from Vegas last week I’ve been exhausted!! I came back Tuesday morning at 9am (delayed from 6am) so had no time to sleep before having a mammogram early that afternoon. The 1 hour drive in traffic to the hospital was brutal! I struggled to stay awake but no way in hell was I gonna fall asleep. Had some coffee as soon as I got to the hospital and made it back safe and sound. The mammogram of my right breast was not pleasant but after chemo, surgery and radiation it all feels easy. I came home and slept for several hours. Got up ate and went back to sleep.
The next 2 days I had to work. Again brutal!! I had to have more than one coffee each day. I’m trying to have no coffee so having to up it to 2 cups when I usually have 1 green tea is not a good thing.
Friday morning I went to my Rehab program, came home and slept for a couple of hours. Sooo happy that I didn’t have to get up early the next morning. Finally! Well I slept for 14 hours!! Who knew that was even possible. The crazy thing is that I was still a little tired a few hours after getting up. The fatigue after treatment is ridiculous. That night I slept for 10 hours and again was tired after being up for 5 or 6 hours. Last night I slept for 9 hours and of course 5 hours later was tired again. I did manage to go get some groceries. Came home and didn’t do much, I felt tired. It’s like exerting myself for a week is requiring a week to recover. Which means I’ll be extra tired until Friday. I’m working tomorrow so that’s just setting me back even more.
I should be asleep now since I’ve been tired for hours but I couldn’t sleep. How frustrating is that?! Exhausted but can’t sleep. Sleeping for 14 hours but still tired. What the hell?! SIGH … The fatigue makes it hard to have a normal life. I have to plan a lot more and yet a lot less gets done. I have to push myself to do everyday things. I sleep so much but yet I’m still tired most of the time. It can be really frustrating to not be able to do all the things you want to do but I’ve just accepted it. I am trying to exercise and eat healthy so that I can slowly get my energy back. I was told that on average it takes two years to get back to normal energy levels. Another year and a half to go.