March 20th was exactly one year since I completed treatment. It brought up a lot of emotions … gratitude and happiness but also sadness, and anxiety. I’m so very grateful to be alive and in remission. I recently had a CT which came out clear. I was relieved and overjoyed the day I got my results but soon after my brain started thinking too much. Maybe it was because my Mom told me about her friend’s daughter whose cancer has come back 2 years later. It wasn’t breast cancer but still it makes me think too much. How did that happen? What was her initial diagnosis and prognosis? What was the treatment she received? All of this so that I can tell myself it was different from my situation and I will survive another 20 years! Right now I am only thinking as far as August where I will be 2 years from diagnosis. With each year the chance of recurrence goes down but with breast cancer it can come back at any time. Making it through 5 years doesn’t mean that you are cured, like some other cancers. Great.
I also read again that women who exercised had a higher 10 year survival rate. I’ve started to exercise a little more but to do 3-5 hours a week is not easy when you are not 100%. I still have fatigue and I get sick every month which puts me out of commission for 7-10 days. UGH! Recovering has been slow but I am getting my energy back. I notice an increase in energy every 3 months or so. I now sleep 9.5 hours on average and 7 hours feels like I’ve slept for 4. Oh well, that’s still better than before!The fatigue is difficult for people to understand. It’s an overwhelming exhaustion that hits you like a wave. At least that’s how it is for me. I can make it through the day now but usually can’t do too much in the evening. If I have evening plans I have to nap or rest in the afternoon. My days usually have to be planned. I also have to cook earlier in the day otherwise it doesn’t happen. Thank God for my Mother!!
The thought of going back to work makes me nervous. Not because of work itself but because I don’t know how I am going to manage getting enough sleep, exercising 3-5hrs/week and preparing meals and eating healthy, all while working full time. Maybe I can request working 4 days as my permanent schedule. I would also then only get 80% of my salary but if I can manage on that then maybe it’s worth it. Going back to work is 6 months away at this point so I will evaluate how I am feeling in about 4 months.
Making it to ONE YEAR post treatment is a victory and I am going to think positive, focus on living healthy and getting to my next milestone of 2 YEARS since diagnosis. That will be August 6, 2015.
I’ve realized that people are unkind and insensitive but I guess I don’t expect it in certain situations. Today was one of those situations. I went to a Goodlife Fitness club to set up my complimentary 3 month membership. This is through their partnership with UHN’s cardiac rehab centre. I completed my 6 month rehab exercise program in January and since the weather is finally above zero, I thought it would be good to start getting out of the house more. I called head office told them about my scheduled time for the membership and assessment. She said it would be set up by Friday when I went in to the club.
I was running late getting downtown, mainly because I was hungry so quickly prepared something before leaving. In doing so I forgot the letter from my Rehab program manager that I was to provide to set up my gym membership. I then was stuck in traffic and got there late. Parking was also a hassle because the club is right downtown. It was also cold and windy so by the time I got there I wasn’t in the cheeriest mood. The GM comes over and says that she understands that I’m trying to set up the 3 month gift membership but she has no paper trail. I said I was sorry I was running late and forgot it at home. She then kept going on about how she doesn’t know me and she can’t do anything without the paperwork and I’d have to bring it in. I asked if I could fax it and she said yes but I’d still have to come back to sign the forms. Well couldn’t I do that now??? She said without seeing the letter she couldn’t do that. Then what was the point of telling me I could fax the letter if I had to come back anyways?! I explained that coming back downtown was a hassle for me between physiotherapy, appointments and fatigue. I didn’t want to have to come all the way back downtown. It takes up most of the day for me. Most of the hours where I have the energy to do stuff. She had almost a condescending attitude and was completely insensitive! I was almost in tears (not sure why but I was). Maybe it was her being inflexible and so cold. She could have said the same thing with more understanding and sensitivity. She was speaking to me as if I was an idiot and she didn’t care if it was a lot of effort and exertion for me to come all the way back downtown. There was also an undertone of I’m trying to scam a free 3 month membership.
Now we get to the trainer. I forgot he’s a personal trainer, he has no medical or rehab training. He started asking me questions about what I had been doing and went on to say that my training heart rate was only at 40-60% of my max. Well WTF did he expect?! I just went through aggressive breast cancer treatment!! He then kept asking if the Frozen Shoulder was due to muscle or tendon … neither and I explained it was the capsule around the shoulder. He asked if I was doing acupuncture for it. NO!!! I’m seeing a physiotherapist and getting massages. It’s helping, the range of motion is getting better. Next he asked if I was taking pills for the Lymphedema … What?! NO!!! It’s massage and a compression sleeve that helps with that. If he didn’t know what I was talking about he should have just asked not assumed which made him sound stupid. At some point in the middle of all that I couldn’t hold back anymore, I started crying. At this point I knew why. Having someone tell me I’m training at such a low percentage of my maximum heart rate made me feel like I had accomplished nothing and that I’m still so far from where I was pre-cancer. In reality I had made a lot of progress since last July when I started the exercise program. At that time my training heart rate was even lower!! ASSHOLE! I guess he was just insensitive and clueless but I’m still sensitive and emotional. Not only am I recovering physically but also mentally and emotionally. I’ve always been fairly sensitive to others when they are going through difficult times so it’s hard for me to grasp how in these situations people can be so cold. I think the fact that I look young and healthy makes others even less sensitive. It’s almost as if because they can’t see it they don’t believe it. VERY FRUSTRATING!
Monday I will be calling head office to tell them about my very unpleasant and upsetting experience. I will also be going to another location to complete the membership enrollment and assessment (which frankly is pointless as these trainers no nothing about my current condition). Hopefully next week’s visit will go better.
As I mentioned before I am planning a trip to London, Paris and a few cities in Italy. I’m so excited and looking forward to this trip!! The friend that I’m going with wanted to confirm our dates so that she could book her ticket. She’s coming back earlier than I am so we might also be flying there separately. While on the phone I mentioned to her that I went to see my oncologist and now have mild Lymphedema. I was a little down after leaving the hospital. I think because it was a reminder of everything that’s happened in the past year and a half. It’s not life threatening and causes more discomfort than anything else. I did have a bit of pain but that’s gone. My wrist is a little swollen and I’ve been wearing my compression sleeve. I knew there was a chance this could happen but I guess I was hoping it wouldn’t. It is something that can happen when your lymph nodes have been removed and also damaged by radiation. I had both.
The friend without knowing much about Lymphedema said to me that maybe I shouldn’t be traveling and maybe I should cancel the trip. WHAT?!! My initial response was that I’m not going to stop living my life! She kept going, saying my health comes first. Does she think that I wouldn’t put my health first?! My health has been the priority since this whole ordeal started! Lymphedema is nothing to cancel a trip over and by August it will probably be gone. She then went on to say maybe I shouldn’t travel for the next year or so also because of the surgery. What the F@!$ is she talking about??? What does my surgery have to do with anything?! I’ve been on 4 trips since treatment ended and have been fine. A little tired afterwards but perfectly fine. I told her this. She was still worrying and continued with her Debbie Downer commentary and unsolicited advice. I then said I’d call my doctor and ask my cousin who is a surgeon and familiar with Lymphedema. I realized I was saying it to shut her up and had no intention of calling either of them. The following day I told her that my cousin said it was fine to travel as long as I wore my compression sleeve. I didn’t ask my cousin. Mentioned to my brother who is a physiotherapist and he said exactly that. She felt reassured. I also told her that she didn’t need to worry about me, I know what’s okay for me and what isn’t. Also that I intend to continue living my life without constant worrying. She didn’t respond.
The entire conversation pissed me off. I think it’s because I didn’t like the fact that someone who isn’t that close was telling me how to live my life! She’s not my doctor or my mother. Who is she to tell me to reconsider my trip?!?! If anything I want to do even more with my life than before. I want to enjoy everyday and live a full, rich and happy life. I’ve been doing a pretty good job. I want to travel as much as possible. I still can’t believe she said that maybe I shouldn’t go. UGH!!! That was not concern, that was her not wanting to inconvenience herself if something happened. You may be thinking that I’m assuming but it was what she was saying and that’s what my gut is telling me. One thing I’ve learned is to trust my instincts. It’s disappointing that she would behave that way but I’m not shocked. This whole experience has taught me a lot about myself and others. Some good, some bad.
I’m still going to enjoy the trip. I’m not letting her or anyone ruin things for me. Just because she is a worry wart and angry about what happened to her several years ago doesn’t mean she has to rain on my parade. I’m doing well and I’m not going to stop living my life! I hope she isn’t like this while we are traveling. BUT when people show you who they are, you should remember that and not expect them to be someone different. So she will probably be that way on our trip to some extent. As long as it’s minimal I’ll ignore it.
5 MONTHS TO GO … LONDON PARIS ITALY!! 😄
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!!