Treatment is Done Now Get Over it. Really???

This was an interesting article/post by another woman with breast cancer. I have read her blog for the last 3 years and although I have never met her I feel that connection to her … I laugh and cry sometimes when I read her posts and hear her story. It always resonates with me somehow.

The below is highlighting the fact that people think that when the gruelling treatment is over, you should just be happy and get back to your previous life. It doesn’t work that way and it is difficult to put into words the myriad of emotions you experience. However the article below does a great job of explaining what it’s like. Please read so that you understand just a little more than you did before.

http://www.huffingtonpost.com/entry/breast-cancer-dont-ask-us-to-get-over-it_us_57f18712e4b07f20daa10e51?timestamp=1475450545778

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Breast Reconstruction – feel like the Bride of Frankenstein

I am now 17 days post surgery and am recovering well. I wish someone had described to me what it would be like so that I would not have been as nervous. Oh well, I made it through the worst part and it was fine even with a few bumps a long the way.

The first week after surgery was not pleasant. Surgery day I was anxious and emotional. At the hospital during pre-surgery prep the nurse got the IV in on the first try with minimal pain. Thank god! And she was really very nice. In those situations (sometimes any situation) one kind word can make you feel better, it really can make a difference. I was then prepped and ready in my hospital gown and off to the surgery waiting area. The anesthesiologist then came over to have a brief chat. It was the same person I had for my previous surgery. I had requested her, hoping she was available and she was scheduled that day so put her name in on my surgery. Happy about that! Also made me feel a little better. While walking over to the OR, all of a sudden I was overwhelmed with emotion. Maybe everything came back … I’m really not sure what happened but we had to take a pause before continuing. It was emotionally overwhelming, cutting off my breast and now having them start to reconstruct it. Breast cancer which now seems to be gone but you never know, and there’s always that fear lingering in the back of your mind. After a couple of minutes I was ok and continued down the hallway to the OR. Once there, I was being strapped in and the resident introduced himself, my surgeon came in, everyone was bustling around and then I felt light headed …

The nurse was tapping my shoulder waking me up. Surgery was over, I made it!! Woo hoo! She was asking how much pain I was in and checked everything. The pain was quite a bit, I was pretty sore even though I was on morphine. They gave me more drugs and waited for the pain to go below a 5/10 before they sent me up to my room. I could barely move. There was pain in my back, my front, my arm, and my stomach. I am guessing a few hours went by (not sure since it’s a blur) but I was finally ready to be taken to my room. This nurse was also very nice and told the two taking me up to my room to go slow as I was very sore. Every bump, every movement HURT!

Finally got to my room and my mom also came in to see me. Shortly after my brothers and Dad came to see me as well. My nieces made me a card and video, which was so sweet.

I was to be in the hospital until the next morning. The next 24 hours were not pleasant. I was so sick (nausea vomiting) I couldn’t eat. Also I could barely move so once I was lying down that’s the position I was going to stay in. Needed a nurse to help me out of bed and to the bathroom and then back into bed. Could not lean forward very much so always needed help with reaching anything. 3 of the nurses were great the other 2 were horrible! The nurse I had to call at 3:30am to help me to the bathroom was the worst. She was so unhelpful!! After I went to the bathroom she left so I made it back to my bed but could not properly get back in. When she came back, she helped me into bed but didn’t straighten out my sheets so I couldn’t get them over me properly, even though I had asked her to. She was such a miserable bitch. My nurse was on break which is why this woman was there instead. Finally another nurse came to help the lady I was sharing the room with and then she came over to help me. I was so frustrated at this point I started crying. Ugh. This other nurse was so lovely and my other 2 were great as well. When you’re helpless and in pain and can’t even get out of bed, it is the worst feeling when the person who is supposed to help you doesn’t give a shit and is barely helping. I complained about that nurse and they said she was from an agency.

The next morning was okay aside from the fact that I was dehydrated due to not being able to keep anything down. They had to keep me there an extra couple of hours because I needed fluid. After that my mom came to get me and was irritable and being bitchy. WTF?! I just had major surgery and she’s gonna act like that?!?! I was so angry after that I didn’t even want to speak to her. But unfortunately I had to stay with her for a few days since I needed help and live alone. The downside of being single.

I spent the first week in pain, and binge watching Netflix. Couldn’t do a whole lot and sleeping was uncomfortable but it was bearable. I had drains coming out of my back, there was fluid oozing out of the open area, had really bad blisters from the bandaid/dressing tape, and my stomach was purple from the bruising. My chest area wasn’t so bad but looked like patchwork and looking at myself in the mirror the first time was difficult. She had taken a piece of skin from my back and put it in the front so that there would be more space to create a “breast” since radiated skin is not very elastic. She took fat from my stomach and put it into the breast area so I now have the beginnings of a breast. There will be more work done later but I get a 2-3 month break.

After spending eight days at my mothers house I finally came home. While I am thankful that she was helpful it wasn’t always pleasant so I was very happy to be back in my own space. Oh and I was really excited to be able to take a shower again … no more sponge baths!! Funny how we take the simple things for granted.

I have a huge scar on my back and 2 scars in the front. I feel like the Bride of Frankenstein but I keep telling myself that eventually all will look kind of normal again. I will never look the way I did before but that’s okay. As long as I am cancer free and can wear a normal bra, I’m happy.

 

 

 

No it’s not breast augmentation!

I realize that I do not write nearly as much as I did before. I do love writing but I have now returned to work full time and trying to maintain my healthy lifestyle is so exhausting. Also I have decided to start my own business. Doing all of this while trying to still have a life and doing the things I enjoy is close to impossible. I generally don’t get enough sleep anymore. For me not enough sleep means less than 8-9 hours. Well, I will have lots of time to sleep soon enough … I am having reconstructive surgery in 10 days.

I am a little anxious about the 3-4 hour surgery as it’s longer than the mastectomy (90 mins) and I am in the hospital overnight. Then there is the 3-6 week recovery depending on how things go. I will be off of work for 6 weeks which at least is now in the summer so I can go for walks, sit on the balcony etc. Recovering in the winter would be depressing … Netflix binge watching!

It’s the latissimus dorsi flap, but muscle sparing breast reconstruction. A strip of my lat muscle will be moved around to the front under my chest and reattached. Then a tissue expander will be put in so that my skin can be stretched. Stretching the skin … that just sounds painful but it is what it is. Once that is done, there is the second surgery 3 months later to take out the expander and put in an implant so by Christmas everything will be done. It’s an elective surgery that I chose to have. I know some women opt to forego the reconstruction but I want to be able to wear a normal bra with no more prosthesis, wear my normal clothes again and just feel closer to myself.

So this is nothing like breast augmentation, actually part 2 is closer to being like just getting an implant but this is a 6 month process … Surgery part 1, stretching the skin, surgery part 2. A lot of people assume that it’s just like getting implants and it’s far from that. Because I have radiated skin the flap needs to be created using my lat muscle. Then, aside from the obvious where I have no breast – no breast tissue, no nipple, there’s also an emotional component that people forget about. Oh and did I mention that a nipple has to be created! The last part of the process but still a part nonetheless. This is all still part of the breast cancer treatment plan.  Being back in the hospital, doing rehab and physio, being off of work to recover … it all brings back memories of the last (close to) 3 years. Wow, it’s been almost 3 years since my diagnosis!! 2 years and 3 months in remission 🙂

I just want the surgery to be over, I will be relieved once it is done. My left side may look like the bride of frankenstein after but at this point I really don’t care.

 

Tamoxifen – Friend or Foe?? (may be TMI for some)

After having such a gruelling week I was looking forward to a nice, relaxing, stress free weekend … of course that didn’t happen.

It was 4am and I woke up in pain. The abdominal pain had not subsided and now I felt like I had just gotten my period. I told myself “that can’t be, I’m on tamoxifen” so I’m in a drug induced menopausal state. I got out of bed to use the bathroom and there it was, showing up 2 years later. WTF?! The week from hell wasn’t over and had just gone from bad to worse. All I saw was red everywhere. I showered, changed and took all off my sheets and threw them in the washing machine. My pyjama bottoms were soaked so those just went in the trash. Distressed, I finally went back to bed.

The next morning I called and left a message for my oncologist. The abdominal pain now made sense … all this time I was having really bad cramps. Never had such bad cramps before but also never had such a heavy menstrual cycle. This was worse than anything I had experienced before. There was no light day start, just jumped to ‘worse than my heaviest day ever!’ I didn’t do much the rest of the day as I could only make it through an hour and a half with both a pad and a tampon (and they were Supers). This is ridiculous!! What is going on???

I was getting worried since this was not supposed to happen. Although there could be several reasons for this, one of those reasons is uterine/endometrial cancer. Tamoxifen is generally prescribed to women who are diagnosed with ER+ (estrogen receptor positive) breast cancer. It is meant to reduce the chance of recurrence but every drug comes with risks and side effects.

Tamoxifen works by blocking estrogen’s effects: It interferes with estrogen’s ability to stimulate the growth of breast cancer cells. It is a SERM. 

  • Selective estrogen receptor modulators (SERMs) bind to estrogen receptors, preventing estrogen from binding. Examples of SERMs approved by the FDA are tamoxifen (Nolvadex®), raloxifene (Evista®), and toremifene (Fareston®). Tamoxifen has been used for more than 30 years to treat hormone receptor-positive breast cancer. Because SERMs bind to estrogen receptors, they can potentially not only block estrogen activity (i.e., serve as estrogen antagonists) but also mimic estrogen effects (i.e., serve as estrogen agonists). Most SERMs behave as estrogen antagonists in some tissues and as estrogen agonists in other tissues. For example, tamoxifen blocks the effects of estrogen in breast tissue but acts like estrogen in the uterus and bone.

Tamoxifen Side Effects:

  • Risk of blood clots, especially in the lungs and legs
  • Stroke
  • Cataracts
  • Endometrial and uterine cancers
  • Bone loss in premenopausal women
  • Mood swings, depression, and loss of libido

National Cancer Institute. (n.d.). Retrieved from http://www.cancer.gov/types/breast/breast-hormone-therapy-fact-sheet#q4

Benefits – Tamoxifen can:

  • reduce the risk of breast cancer coming back by 40% to 50% in postmenopausal women and by 30% to 50% in premenopausal women
  • reduce the risk of a new cancer developing in the other breast by about 50%

BreastCancer.org. (n.d.). Retrieved from http://www.breastcancer.org/treatment/hormonal/serms/tamoxifen

The above information is what Tamoxifen CAN do, not WILL do. Statistically, yes it can (and I think usually does) help, but there is no guarantee. In any study there are so many variables that we are not aware of. How many of those women in the study/trials fit my profile? No clue and no way for me to know.

There is a very small chance that it is uterine/endometrial cancer, but nonetheless I am kind of freaking out. I try to relax as much as I can, which is always easier said than done.

Just when things were starting to feel somewhat normal, this happens! UGH!!! I feel overwhelmed again. Is the drug just not working anymore, did my ovaries just wake up out of their coma, or is it something more serious??? I am now waiting … will see oncologist and then be referred to gynaecology, will have to have more tests (unpleasant ones I’m sure) and then we will know something.

Tamoxifen … the FRENEMY.

Relax Rejuvenate Recharge

  
I am in London!! Got here yesterday and so far just spent time with cousins. Went out for dinner, talking and catching up, which has been great! Cancer is not on my mind. So nice to mentally have that break!  
I did share the events of the last 2 years with one of my cousins but not the other. I want to tell the other cousin but she’s very close with her mom and I don’t want the whole family to know. Funny though because with the cousin I didn’t tell, we shared a lot of personal stuff. Things that actually made me feel closer to her. I am actually looking forward to spending more time with her in the next few days. The cousin I did tell is quite a big younger and now I am wondering if I should have told her … I’m naturally a very open person and I sometimes share too much. I told her something that saddened me about a cousin I didn’t get to see today. I didn’t need to tell her that, she wasn’t going to make it any better. So don’t know why I told her. I think it’s my natural desire to share. I really need to start keeping more to myself. I’m an open person but I think being too open isn’t a good thing. I trust her and telling her was fine but sometimes I feel that I unnecessarily say too much … Oversharing again!

This vacation is going to give me time to relax, enjoy myself and rejuvenate before going back to work in October. I think we underestimate the power a trip and time away can have. Being in a different environment is fantastic! Meeting new people and seeing new and interesting places is enlightening. Experiencing a different culture, the food, the energy, the art and architecture is amazing! I think it definitely is therapeutic after such a life altering experience. It really will help me recharge and hopefully feel a little closer to my normal self. 

Tomorrow off to see Wimbledon area and Notting Hill. 😊

ONE YEAR Since Treatment! ALL IS GOOD!!!

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.

GoodLife Fitness Wellington Club – Horrible Staff 

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.