@Cheri Happy to help, I know reading everyone's experiences who came before me was invaluable. Good luck with your genetic testing, it's hard to wait so long for those results but I'm wishing they come back negative for you.
1. If you haven't had kids yet/want kids in future, ask about fertility preservation PRIOR to starting chemo. It's free for cancer patients (except for your out-of-pocket cost of the medications and the initial ultrasound) and they were able to fast-track mine in under two weeks so that I could start chemo asap. You can also request Zoladex which is a monthly injection that shuts down your ovaries to protect them (it's a horrible needle but worth it).
2. Your mouth may feel very strange each cycle for about a week or so and eating will become very difficult. I couldn't stand the texture of any dry foods and water tasted awful. Combined with nausea, eating and drinking will become near impossible despite any grand plans you initially had of eating nutritiously throughout chemo. Try and stay as hydrated as possible, you will feel worse if you get dehydrated, and choke down as much food as you can, especially high protein foods to help rebuild the healthy cells that the chemo is killing. You want to try and stay as strong as possible. I found Sustagen and Hydralyte helpful. In the end though, just eat what your body will tolerate. For me, the only thing I could stomach without throwing up at one point was chips. So that's all I ate for a little bit. You may have different cravings each cycle.
3. Try to stay on top of your meds, especially the anti-nausea and anti diarrhoea. They are easier to prevent than to try and control once they set in so take them from the start. I also recommend anti reflux meds too if you experience that problem. Chemo messes up your whole digestive system.
4. Try and exercise when you can. Even short walks around the block. Apparently it helps offset some of the side effects a little. Rest when you need to as well.
5. Chemo can destroy the inside lining of your nose and cause "chemo nose" - putting paw paw ointment inside can help to avoid this. I didn't do this in the first place and had nosebleeds every day for months.
6. For me personally, my hair started to fall out around two weeks after my first round of TCHP. Shaving your head prior to this can help to avoid finding hair all over your sheets and house. Cold capping helps avoid full hair loss but I didn't bother with that.
7. I don't know where you are located, but there are usually local charities that you can reach out too that help you out. My local one contributed $1000 to my wig and offer support groups, free retreats and massages. They are wonderful and I highly recommend looking into this in your area.
8. The steroids they give you make you feel fine for a day or two after each round of chemo. Don't be fooled, the effects usually hit on the 3rd or 4th day. I also found melatonin or sleeping tablets helpful as the steroids can cause insomnia.
9. I found following some cancer pages on instagram, etc very helpful in not feeling so lonely. If you're on insta, I found 'thecancerpatient' to be a wonderful community with interesting posts. 'cancer_shitposts' and 'thankscancer' are also good ones and have memes you can relate to and I find it validating and quite funny. It's good to have something funny and relatable to turn to when you're feeling like crap from chemo.
10. Write everything down. Your schedule during cancer treatment is hectic, and chemo can cause forgetfulness and brain fog (chemo brain) so write everything down so you don't forget any important info/dates.
11. Allow others to help you.
12. Don't make the mistake I did and go down the google rabbit hole. It never ends well. I learned that the hard way. A lot of info on google is outdated. If you must google, go on the proper government websites that have current statistics and info for Australia.
13. If you haven't listened to the Upfront about Breast Cancer podcast by BCNA, I highly recommend it. It helped me a lot.
14. Google 'Know your Knockers' - it's a downloadable guide to help you navigate breast cancer. There is valuable info in there about HER2+ and about each stage of the journey (chemo, surgery, radiation).
15. As chemo throws you into medical menopause, be prepared for possible hot flashes and mood swings!
16. You'll be at the chemo ward for several hours each infusion. My first one took 8 hours as they had to do it very slow to monitor for adverse reactions. After the first time, it usually takes 4ish hours each subsequent round. Some places have sandwiches to offer, but it's a good idea to pack your own snacks just in case and something to keep you occupied for several hours.
Bit lengthy sorry. There's a lot more I could add but that's all off the top of my head. I hope they help. Some of the above I failed in doing and then ended up struggling, so I hope my tips help you. But don't feel like a failure if you struggle with them too, chemo is not easy. But you sound so strong and I know you will get through this xx
