I pretty much googled everything and I mean EVERYTHING during treatment. And found SO much out there that did not relate to me or was completely depressing. Yes, I know everyone says NEVER google any medical symptoms - but that's just not practical I mean we ALL google everything. So I pressed on and found quite a few gems (medical sites, news articles, blogs) that were informative without the depressing undertone. Factual and sometimes uplifting. So I've created a page with a whole lot of links that helped me during this journey. Hopefully it saves some from navigating away from those horror story websites. Note: These are just a list of sites I found helpful, ALWAYS check with your medical staff for their opinion on what is best for your case in particular.
My treatment plan (see about section for more on me):
- Chemotherapy – 4 rounds of AC (red devil) and 11 rounds of paclitaxel
- Mastectomy with immediate reconstruction (one defective boob gone and one new boob)
- Radiation – 5 days a week for 5 weeks.
- Hormonal therapy – Next ±5 years
Before treatment starts
- If you're a young woman like me, definitely look into preserving your fertility. I've got 7 embryo babies in a freezer somewhere waiting for the right time. Which is great because Chemo put me into menopause - hotfulshes and all!
- Ask your Dr about a port insertion
- Do the gene tests - I did both BRCA1, BRCA2 and the full gene sequencing. Both came out negative for me. But the results from these tests definitely assisted in decision making with regards to the treatment plan.
- Also check to see if you can do a Mammaprint - it gives you a better idea of the characteristics of your particular tumour - http://www.breastcancer.org/symptoms/testing/types/mammaprint
Chemotherapy
Preparing for chemotherapy:
- Prepare yourself and home for post chemo – don’t leave anything to be done after chemo. You just not sure how your body will react to chemo each session.
- Get a whole lot of wet wipes, hand sanitiser and tissues
- If you can, get meals prepared for you and family or prepare small meals ahead of time in bulk and keep them in the fridge
- http://www.butdoctorihatepink.com/2009/12/top-four-tips-for-getting-through.html
General managing chemo tips:
- Follow your doc’s orders, definitely take any anti nausea pills given to you even if you don’t feel nauseous
- You’ll figure out what works and does not work for you. Just listen to your body.
- http://www.oprah.com/health/11-tips-to-get-through-chemotherapy
- http://www.livestrong.com/article/293442-foods-to-avoid-during-chemotherapy/
Check the following sites regularly:
- Chemocare.com - they have pretty much everything in one site. It's like an encyclopedia for all things Chemo related
- http://www.breastcancer.org/
Fatigue:
- It's real. Your body just shuts down. And it does not matter how much you will it to do whatever, the body does what it wants. Take it easy, listen to your body.
- Do the important things when you do have energy, just rest when you don’t.
- http://www.cancer.net/navigating-cancer-care/side-effects/fatigue
Constipation:
No one wants to talk about this but with all the drugs you're pumped with during chemo your system's regularity will definitely be affected. And I mean real constipation, the tummy cramping, ass on fire, you can't even walk, so all-you-do-is-cry type (I wish this was an exaggeration) below some tips and sites that I found helpful to navigate through that:
- Drink lots of water - a WHOLE lot.
- Have lots of fibre, so fruits and veg, all bran flakes
- And when things got really rough - use Movicol - it's an over the counter powder form thing that gently works so things are not too runny and not too fast if you know what I mean.
- Bum cream – if it’s good for a baby’s bottom, must be good for yours.
- http://www.cancer.net/navigating-cancer-care/side-effects/constipation
Chemo brain - what it is and how to manage it daily:
Chemo brain is real. In the beginning it was like a weird fog that just sat in my brain. Now, I still have memory problems now and then and need to take things easy. Couldn’t multitask before, but now I definitely can’t. I sometimes just feel a little slower mentally and physically.
- http://www.cancer.org/treatment/treatmentsandsideeffects/physicalsideeffects/chemotherapyeffects/chemo-brain
- https://www.ihadcancer.com/h3-blog/01-04-2016/10-things-cancer-survivors-want-you-to-know-about-chemo-brain
- http://www.cancerresearchuk.org/about-cancer/cancers-in-general/cancer-questions/chemo-brainhttp://www.cancerresearchuk.org/about-cancer/cancers-in-general/cancer-questions/chemo-brain
Try following these facebook pages they have interesting posts almost everyday:
- https://www.facebook.com/livingbeyondbreastcancer/?fref=ts
- https://www.facebook.com/breastcancerorg/?fref=nf
- Follow your treatment centre's social media pages - you'd be surprised how much info you find and what events may be upcoming
To all those with loved ones who have cancer
- What not to say: http://www.theguardian.com/commentisfree/2016/mar/26/do-not-tell-cancer-patients-cures-they-could-be-doing
- What to do or say: http://www.cancer.org/treatment/understandingyourdiagnosis/talkingaboutcancer/how-to-be-a-friend-to-someone-with-cancer
- It's ok if you do not know what to say, just be there.
General:
- Go to the "Look good, feel good" session at your oncology centre! Not only do you get a bunch of free make up and facial treatment goodies, the stuff actually saved me through those dry skin chemo days.
- Attend a support group session - well, at least one session. Hearing others on their journey always helps.
- TCP mouthwash - for those extra dry mouth days works wonders, but beware the smell is something to get used to
- Eat before chemo sessions
- Bananas - helped me with nausea
- Eat many smaller meals rather than 3 big meals - helps with feeling full (hunger could make nausea worse) & if you do vomit it's less being thrown up.
- Some people at chemo had ginger sweets or ginger biscuits to eat at chemo and helped them
- Drink lots of water
- Eat when you can and what you can keep down.
Mastectomy and Reconstruction
I found that most of the helpful info came from one site, there were some good blogs, etc. but many of them swayed to depressing stories or horror stories. So for the mastectomy I would actually recommend that you don’t go too crazy with Google and mastectomy info – stick to the Dr’s advice and try to speak to ladies who have been through it before. There are horrific stories online, but always remember your story is not anyone else’s story. You will and have a unique story.
The links that did help:
- http://www.breastcancer.org/treatment/surgery/mastectomy
- http://www.breastcancer.org/treatment/surgery/reconstruction
Post-Mastectomy Exercises
- Found this youtube video on post-mastectomy exercises pretty good. She’s a coach who has personally undergone this surgery, so she knows what and how you are feeling after this surgery and she doesn’t push you too hard. https://www.youtube.com/watch?v=i6xiJPKmuUo
Radiation
This has been the easiest part of treatment. You literally just come in, take your top off, lie down and get zapped for a few minutes. You don’t feel anything while you are being radiated (is that how you say it?) For me, I didn’t feel anything at all, until the last week. When my skin under my armpit (very awkward place) started burning like crazy. But even with this side effect, it was WAY easier to deal with than chemo. Plus, there was cream to soothe the burning from radiation.
Your radiation oncologist/therapist will probably give you a list of Do’s and Don’ts follow them religiously. In general no body products with lots of fragrance and chemicals can be used. I was told I could only use dove soap and no fragrance aqueous cream while doing radiation. No shaving, no roll-on, no perfume on the skin, no Body Shop products.
In 2012 while on a mission trip in Mozambique, I swear I could’ve drowned in the ocean. The water was so calm with just bulges of calm waters coming in and going out. One HUGE bulge quietly crept in and did not go back and we were all treading water for a while. I asked one of the tallest boys with us to try stand on the ground and keep his arm straight up. He went down and we saw no arm. He came up and I started panicking. We were in deep, very deep. Fortunately, there was a young lady with us who saw the panic in my eyes and calmly gave me directions to get the hell out of those waters! Anyway, she said when you feel like you’re in too deep and you’re about to drown, follow these steps:
- Keep calm – while there are no waves, conserve your energy
- When a wave comes, swim with all your might towards the shore and let the wave’s energy carry you
- When the wave is gone, relax, keep calm and wait for the next wave to ride.
- Repeat until you’re on dry land.