They said it would happen. And, it did.
The after-chemo crash came. My energy level is down and my mind is super-foggy. I have a few posts I have been working on, but nothing seems to be flowing. One of my epiphanies has been to go with the flow and to stop swimming against the current. So....I will publish my posts when they come to me in an "acceptable" form and not force them into a regular schedule.
However.....I would like to publish my Guide for the Amazing Journey of Breast Cancer for anyone who would like to read it or share it. I didn't edit it too much and it is in kind of a random order, but there is a lot of info that I thought was worth sharing. Also, it is pretty long, but it will be on my blog permanently if anyone ever needs to access it.
Two more things:
1. Please excuse any spelling or grammar errors and the formatting - this is most definitely a "work in progress" document. (Aaaand, I think I repeat myself a bit)
2. If you have gone through the same journey either, as the Temporary Cancer Host or as part of the support team, please do post anything you would like to share in the comments section. I would love to read it and you could really be helping someone.
Here it is:
A Guide for the Amazing Journey of Breast Cancer
- Exercise – Getting in shape was an enormous help, physically, mentally, and emotionally. I ran, did yoga, and did strength training on my legs. I needed strong legs for a few weeks while my upper body was out of commission. I didn’t go to a gym – just squats, lunges, exercise ball, etc. Every single time I exercised I felt strong. This was so important to keep my feeling strong in all 3 ways - physically, mentally, and emotionally.
Practice your post-mastectomy exercises before surgery. I found this amazing video online from Memorial Sloan Kettering Cancer Center that shows the exercises step by step: https://www.mskcc.org/node/20125
- Diet – There is no conclusive evidence that any diet will help fight cancer and a lot of them contradict each other. I compared the following diets: Ketogenic, Macrobiotic, Gerson, Livingston-Wheeler, Kelly/Gonzales, Wheat Grass, Acidity, GI. However, the common denominator seemed to be to eat natural foods and not eat processed foods. For the month between my diagnosis and surgery I eliminated all sugar, starches, alcohol, caffeine, dairy, eggs, gluten, and soy. Vegetables, fruit, organic protein, and nuts, turmeric, garlic, and ginger were my staples. We got really creative with spices and used a lot of coconut milk/cream. This may or may not have made a difference, but it gave me a sense of control.
- Meditation, Visualization & Reiki – I did about 5 – 30 minutes per day. This can really take any form. I looked up a few things on the internet, but ultimately, using your mind to bring in good energy in any form is mentally empowering.
- Supplements – I didn’t take anything. If you do, check with your doctor. Some things may be anticoagulants and may cause you to bleed a lot during surgery.
- Stock Up for 6 months – You don’t really NEED to do this, but I found it really helpful to know that I had these things in storage and it cut down on what I had to shop for. Here are a few things I stocked up on:
- soap (Pacifica is my favourite – very gentle and smells great!), shampoo, hand cream, face cream, deodorant, toothpaste, toothbrushes, floss
- Laundry soap & softener (Lemieux is the BEST – very gentle and natural, but I think it is only available in Quebec.
- Mouthwash & toothpaste for chemo (ask your dentist)
- Toilet paper, paper towels, Kleenex
- Peanut butter, honey, jam, coffee, tea,
- Dish soap, dishwasher soap, garbage bags, cleaning supplies, vacuum bags
- Bras & Camisoles - Amoena specializes in this. If you google the company, they will find you a store in your area. It is really important to get fitted in a shop. They have front zip with pockets for drains that will stay in for 2 weeks. We realized that the pockets were held on by Velcro and could actually be removed after my drains were taken out. That knowledge could have saved made things easier. Oh well.
- PJs - Depending on the season, your needs will be different, but you will need things easy to get in and out of. I got some cure shorts from La Vie en Rose…or was it La Senza? Either one is good. Camisoles and tanks that you can slip on from bottom. I got a super cozy adult onsie from Roots that I wore this winter.
- Lanyard – really important to keep the drains in place while you bathe. You can also buy specialized pockets with straps online.
- Electric Toothbrush – it will be hard to brush your teeth for a week or so.
- Set up appointments at the salon to get hair washed – you won’t be able to do this yourself for several weeks. I went every 3 days to have mine washed. They were so nice and didn’t even charge me.
- Visit dentist 2 weeks before surgery for a cleaning
- Tell your friends how much to share - don't assume that they won't tell their children or other friends. And friends, please ask who you can share news with.
- Organize laundry bins – I got 3 bins and numbered them with descriptions so the boys knew where to put their clothes. Now they do this automatically!
- Declutter – I got rid of half my wardrobe on the day of my diagnosis and to this day I have only missed one or two things for a quick minute. Clothes and material things have less importance now. It is also metaphoric for me. When my home was cluttered up with old stuff or things I didn’t use or wear anymore, I was not able to clearly see my new stuff – or I never wanted to wear it because it was too “good”. Now I only have my clothes that fit, that are not too old, and that are good quality. Even if my old stuff still fit or was still in style, or I had paid a lot of money for it, it “felt” old when I put it on.
For yourself or to help: This is a list of things I, personally, found useful or that brought me comfort. It is always nice to know your cancer buddy or ask what they like or need.:
- Wigs: You can get a wig with real hair or synthetic. I got the cheaper synthetic, which I found perfect. Besides, I spent all my money on the Hermes scarf. I got a super-sexy wig and I actually like it better than my real hair. headcovers.com has zillions of choices! Have fun with it – this may be the only time in your life you can wear a wig or a scarf and fedora every day. You don’t have to do the traditional bandana or boring wig.
- Buzzer: You will need this to shave your head if you have to do chemo. It also comes in handy when your hair grows back so it comes in evenly and not all scraggly. BTW, for the shaving part, I got my kids to help and it was a really fun and memorable experience. Thanks to my cousin for suggesting it!
- Scarves- I got an Hermes scarf – this is a big indulgence, but I felt special every single day I wore it
- Pacifica soap
- Apivita – amazing products and free of bad stuff
- Mychelle – my favourite face cream and other products
- Dr Haushka – my second favourite face cream
- Lemieux laundry soap (only available in Quebec???)
- Roots Onsie
- Socks – winter & summer
- La Vie en Rose PJ bottoms
- Netflix – this was an ENORMOUS help. I got hooked on Downton Abbey which kept me in bed when I wanted to get up and do stuff.
- Hand Knitted scarves/shawls – I LOVED receiving these. I have become like Linus with mine – it still brings me a great deal of comfort.
- Flowers – It may be a cliché, but having a little vase of fresh flowers beside my bed made me feel good.
- Messages – e-mail, text, messenger, Facebook
- Food (ready-made salads, frozen smoothie ingredients were so, so amazing!) Even if I couldn’t eat it, it fed my family.
- Invite kids over to play for a few hours
- Vacation after chemo – This has perked me up on many, many days. I am counting the days!
- Sudoku, crosswords, iPod
- Gurugrid yoga mat – I know it is my product, but I actually used it a lot in my recovery exercises after the surgery.
- Consider a private FB page if you do not want to share with everyone on your list
- If you want to treat yourself to a massage, find a massage therapist who has been trained in Oncology Massage.
- Epsom salts - I waited until after chemo was done to soak in a bath, but do what works for you.
- Diffuser and essential oils - I discovered this after chemo was done and I love it! Just do your research before taking anything orally. I only use my oils in my bath and diffuser – and a few for bobos.
- Puzzles, Sudoku, crosswords
- Create a checklist/gift registry
- Prepare for mood swings from the withdrawal of the steroids on Taxol. Some of the things I found helpful: running, yoga, any exercise, osteopath, acupuncture, avoid alcohol and too much caffeine, eat well, get lots of sleep.
- A good set of headphones so you can listen to music or watch movies & shows during and after chemo.
- Meditation apps such as Paced Breathing and Respirelax can help get you on the road to habitual meditation.
Recipes – these are my favourite “go-to” places for healthy and easy recipes:
Gwenyth Paltrow “It’s All Good”
Oh She Glows
My Heart Beets
The Cancer Fighting Kitchen
Here are a few meals & foods to make for yourself or for others – either to bring over and eaten right away or to make in advance and store in the freezer: vegetable broth, soup, tomato sauce (with or without meat), smoothies, Butter Chicken (www.myheartbeets.com), pesto, zucchini spaghetti with pesto (someone brought this one over after my surgery – yum!), ready made salad, salad dressing, frozen fruit
These shows kept me in resting in bed when I wanted to get up and do things I wasn’t supposed to be doing: Downton Abbey, The Paradise, Mr Selfridge, The Crown, Scandal, Bloodline, Mad Men, Homeland, House of Cards, Suits, The OA, Sense8, Mr Dee, Community, How I Met Your Mother
Things to think twice about:
- Massage, acupuncture, osteopath – these are usually covered by insurance
- Mani / Pedi – can’t go into surgery with nail polish and questionable during chemo
- Be careful about sending info that directly contradicts the course of action the cancer patient has decided on. If she has decided to do chemo and/or radiation, sending info that suggests not to can be very unsettling during such an unstable time.
- Cancer Buddies: Do not assume that the people you share your news with will not share it with others. Please state specifically whether or not they can share and who they can share with. This is especially important when it comes to children. Please specify to your friends, in no uncertain terms, whether or not your kids have been told yet.
- Friends, please ask first before sharing – don’t assume.
- Phone calls – it was impossible to talk on the phone for a few days and difficult for a few weeks. I had a double mastectomy, so those with a single may find it easier – best to ask first. However, I am sure the caregivers appreciate calls.
On the plus side:
- You have motivation for self-analysis. See a shrink if you don’t have one.
- Start to exercise – only do the type that you enjoy (running, aerobics, yoga, swimming, weight training, walking, hiking, skiing). Do this before surgery so you are in shape. Do it after and during chemo to keep your mind, body, and spirit strong. It is really empowering.
- Watch TV, movies, read
- Re-decorate your bedroom – you will be spending a lot of time there. You may not have time or budget for a big reno, but a new duvet cover, new sheet, new lamps can make a big difference.
- A good reason to try a new, healthier way of cooking
- Get rid of your old clothes. I threw out half my wardrobe the day of my diagnosis. Things I’d had for over 10 years – they still looked great, but they always felt old when I wore them. It may have signified my readiness to get rid of old stuff I was hanging onto emotionally.
- Buy some new things. Take this time to treat yourself to a few new items. You might want some cozy clothes. Indulge in good quality – if you don’t deserve to spoil yourself now, when should you?
- Have fun with new looks. Try different styles as you begin to lose your hair. You will be able to experiment as it grows in too. Buy a super sexy wig. Buy a pink or blue wig. Get a fedora & wear it with a scarf (this was my favourite look!), get a few baseball caps, lots of great tuques in cold months.
- Have the long Bambi lashes you have always wanted. You can get fake eyelashes that last up to 3 weeks. It is a bit pricey – $150 and you can only do this if you keep some of your natural lashes.
- Massage, massage, massage!
- Get rid of all your old underwear and buy some new ones.
- Now you have an excuse to not answer e-mails, text, calls right away. It is really liberating.
- Now you have an excuse to say no to people around you.
- You don’t have to see anyone you don’t want to see. You don’t need anyone who does not bring love and happiness to you right now. You have permission to tell them you are busy.
- Let others help you with food, child care, rides, cleaning your house.
- Learn to meditate. There are so many ways to do this. Find the one that is right for you.
- Try acupuncture, osteopathy, anything non-invasive that feels right to you. Always check with your doctor.
- You may end up with a free boob job!
- You will have to wash your hands a lot during chemo to keep the germs at bay. Find a good hand cream – something organic with no harsh chemicals. Go to your local health food store for advice. I like Apivita, Melita, Botanika, Mont Echo, and regular cocoa butter.
There is still more to come. I did this list during and after chemo and there is still radiation and anti-hormone pills to come. To be continued….
Lots of love to you!
H :) xo