Someone very very close to me is going for their first meeting with the oncologist today. Tracey and I compiled a document to support their journey. Thought it may be helpful to others that are starting their own journey:
Things we wished we knew at the beginning, and some suggestions to make things a bit more simple and efficient. Towards the end of this document are things that are hopefully way down the road but I wanted to include.
For the first while your spouse should participate in meetings as much as possible. This is for a couple of reasons:
· No one should go through this alone
· Two minds are better than one as there is a significant amount of information coming your way. Also helpful for both of you to be on the same page.
· Take notes and record each meeting. As she will not be able to come in to the meeting due to Covid it would be awesome if you could record the meeting and maybe even have her listen in on the meeting
· Build a filing system. We started with a binder but now have a whole row in our filing cabinet. Some of the categories are:
o Contacts
o Appointments
o Lab Results
o Scan results
o Prescriptions
o Other insurance (Critical Care, Best Doctors)
o Disability (hopefully for future, STD & LTD)
· Check in to all of your insurance policies. We got a onetime payout due to having cancer.
· Meet with HR to get updated on your benefits and disability. Hopefully you don’t need them but if you do you want to know what you can access. Some disability policies from corps have ability to increase through top ups?
· Meet with your lawyer and get all the paperwork in order. Wills, Power of Attorney and Personal Directives. These take a while to do and now is the time to get started. Ensure that these are all in order and current.
· Get a Green Sleeve and put a copy of your personal directives in it. Green sleeve is where you store all the documents you need to take to the hospital when you get into trouble (like getting sepsis). It outlines your wishes if you get into a medical spot where they need to know to resuscitate you or let you coast on your own.
· Make a bag that is always ready to go to the hospital. Slippers, toiletries, long power cable for phone, book, green sleeve etc., leave it in a place where it is easy to find if you need to dash to the hospital.
· A good thermometer helped me out. Leave it on your bedside table so it is easy to find if you think you are getting a fever.
· I have had a variety of skin ailments as a result of the chemo. When you get one, let me know and I will tell you what products I use to deal with it. It will hopefully prevent you from having a drawer full of products that are useless like we have.
· If you want to access programs for those with cancer, go to http://wellspringcalgary.ca/. This is where we did meditation, Qi Gong. It has programs for caregivers so would be good for your wife. Lots of other programs around navigation, etc.
· Ask Doc for referral to a dietician – they know how to navigate around side effects of chemo etc. Ensure you are getting the best nutrition possible. Your body is going to be taxed so make sure you are feeding as well as possible.
· Build and leverage your medical network. Remember the specialists and keep their contact info as you may need to bypass the system and go direct. You will realize if you want speed you need to advocate for yourself.
Big things I have learned.
· Sleep is critical, so get lots of it. I take a nap every day, sometimes twice a day.
· Stress is really bad, the whole family needs to help reduce your stress. Now is the time for everyone to step up and make sure they are taking care of themselves so you don’t need to worry about it.
· Good nutrition is critical. Fresh foods, not prepared ones.
· Get exercise, walking is a perfect tool to get exercise and clear your mind. My oncologist told me that the more exercise I get the better off I will be. This has been totally true. I walk everyday, on tougher days it might be a short one, but it makes a difference.
· Be optimistic. You may get decent news or you may get devastating news. Everything depends on you taking the news and putting it in to the right spot. Be optimistic and think forward. This is the hardest part yet the most important thing you can do. Our mantra has been “ It is what it is”, no sense in stressing over things you can’t control.
· If you don’t want to get into meditation then at least take the time to do deep breathing two or three times a day. As simple as stopping, taking a deep breath into your stomach, holding briefly and releasing out your mouth. Feel your body relax and push into the chair. Do it three times. (Meditation has helped me get through the most intense pain and I really recommend it).
· Don’t go at this alone, reach out when you need to. Talk about your experience with others, everyone close to you wants to help.
· Share with people that give you energy. Now is the time to avoid those people that suck your energy. I book walks with those who give me energy. It allows me to still be a little social and get some exercise in.
· There will be tons of people that had magical solutions to curing cancer. Get your filter on, put up to high. Everyone had an aunt that cured cancer by doing something (high does of vitamin C, PH balance, micro dose, Phoenix tears, no sugar, etc). I have spoken to my oncologist about all of them and there is no proof. You can chase these theories down, but in my experience it just diminishes your attention to science. I ask my doctor about things I read and hear and trust his input on them.
· Get out in nature.
· Pass off tasks that others can do. Outsource expertise so you can focus on you.
· Go out into crowds as little as possible when you are on treatment. Get others to run your errands, your immune system will be taxed and you will pick things up far more easily.
· Call me anytime. 24/7. Feel free to call Tracey and learn the ins and outs of being a caregiver. It is actually the hardest job and it’s the most important. I wouldn’t be around if it wasn’t for Tracey managing other stuff so I could focus on getting better.
Other stuff that might be helpful for your nutrition:
On hand in the pantry we have the following for when I really feel lousy.
· Gatorade – a variety of flavours, Tracey gets the ones with the orange lid that are easy to drink out of if you are laying down. These are great to have on hand to stay well hydrated of you are feeling ill.
· Premium Plus crackers
· Arrowroot biscuits
· Unsweetened apple sauce
· Canned Campbell’s Chicken Noodle Soup – I know this goes against the fresh food advice, but sometimes it is all I can stomach.
· Annie’s Pasta - Mac and Cheese again sometimes starchy foods are all I can manage.
· Sourdough Bread for toasting buy it from a good bakery, it has more protein in in.
· Smoothie supplies, I have Kaizen Whey powder to add to my smoothies to up the protein content. You can get it cheaper at Costco.
· I have been told to eat 30gms of protein per meal. It helps your body if it is properly fueled.
· Eat smaller meals more frequently if you are feeling crummy.
· Don’t skip meals if you can help it. I find my stomach upset is way worse if I don’t eat.
· Drink as much water as you possibly can. Staying well hydrated is critical. I have a mug of warm water going at all time.
· Bowel issues are ever present. I can share with you what I do on a daily basis to try and keep things moving. Alternatively when things don’t stop moving diet becomes even more important to try and bind things up (starchy foods, no dairy…).
I got a heated blanket that I use a fair bit, you may find you feel cold all the time. It is nice to be able to hop under the blanket and get warmed up. Hot baths are also good for this, but put Aveno Colloidal Oatmeal packets in the water to help prevent your skin from drying out. Dry skin is a big problem for me and it’s due to chemo.
Really really important to listen to your body.
Sorry if this seems drastic or dire, that is not the intention. But I figured I would give you stuff you needed for Tuesday as well as set you up for success if this turns out to be a longer journey. Fingers crossed that this is but a mere pit stop.
It’s all going to work out. If I can keep on chugging, then you can too pal. You got this.
I love you.
And I’m here for you in every way.