Stop the ride...going too fast

Sister

@lovemelrose I did have a list from when I did it - collected from advice here - but I can't find it.  As @zoffiel said, have the discussion about a port.  I hated mine but was so glad that I had it as it saved my veins and that's pretty important when you can only use one side for tests.

I always went in to the treatments with books and tablet and phone but generally found that I was too distracted to concentrate and would end up talking to people or flicking through magazines.  And wear something comfortable (and whichever method is used to access the vein, the nurses will need to get to the area easily).

From memory, what I got in to have in the house during chemo was:
Sorbolene for dry skin
Colyxol with senna
Movicol (I never used this but I know many have needed it)
Toddlers toothbrush
Biotene mouthwash
Baby shampoo (I tried the cold caps for a couple of treatments)
Hand sanitiser and disinfectant wipes (and we weren't in Covid times, then)
Toilet wipes (sometimes it's gentler)
Sick bags (never needed them but kept one in the car, anyway)

There may have been other things that I can't remember.

With regard to the dreaded hair question, don't go rushing out to buy expensive wigs or head coverings - I only wore a wig when I really wanted to fly under the radar and you can hire them in many cities fairly cheaply (if you put your general location on your profile, someone may be able to give you tips).  I was fortunate enough to have head covering giving to me and honestly, op shop scarves work really well, too if you feel the need to cover up.

I'm not sure if they are running the "Lood Good, Feel Better" workshops at the moment but worth investigating.

Also check with your clinic about recommended exercise programs with a rehab centre - exercise is really worth doing during chemo but you need to be with someone who understands cancer treatment. It helps with getting the chemo through your body, it helps with immediate recovery, and it helps with long-term recovery.

Keep a notepad handy at home so you can record how you're feeling, what time you took any meds, temperature, etc.  This not only helps you to keep track of things on a daily basis but will also give you (and your onc) a picture of what you can expect during treatment.

Don't suffer in silence - if the meds sent home with you don't work as well as expected, ring up the clinic and let them know. I learnt this the hard way not realising I didn't have to go through a whole weekend feeling so lousy.  They only give you the minimum medication and some people need a bit more.  For me, better nausea medication and something for reflux and I could manage okay.

Another suggestion if you have time before chemo starts, is to find a lymphoedema specialist physio and get scanned.  It should be done before surgery but almost never is, but it will give you a baseline if there is ever any concern.  Again, if you put your location on your profile, someone may be able to advise if there's one near you.

If people want to help, it's good to have an idea of what help you may need.  Often friends turn to making meals for you which is nice, but no point have a freezer full of things that no-one in the family really likes.  You may have real things that you need help with - taking care of the kids for a couple of hours when you've just had treatment or picking them up from child care (school, whatever...), driving you to treatment...  For me, it was the stuff with the kids that was important when I couldn't do it.  One time, a childless friend drove across town, picked my daughter up, then took her miles away to the other side of town so that she could take part in a school sports carnival while I was in chemo.  That meant the world to me as I knew how disappointed my daughter would have been not to go as it was a pretty big deal.  I mention it as an example because it was really hard for me to ask my friend (absolutely not what she would choose to do with her day) but she did it because she cared and it was something concrete she could do for me.


I hope that what I have posted doesn't cause any anxiety as that's not my intention - rather to give you a working list of things that I discovered at the beginning of my rollercoaster ride.  And I did find it helpful to have things to "check off" before treatment began.  Chemo is certainly not something that anyone would choose to do as a fun activity, but for most of us it's not as bad as we expect - mainly a long haul.

Oh, and get ready for some intense streaming - when you run out of energy, that's always handy.  Take care.

Giovanna_BCNA

hello @lovemelrose @sister mentioned the Look Good Feel Better program, its a great program and they are offering virtual and face to face workshops https://lgfb.org.au/workshop/ which you can view via their website

Ahnn

Best wishes @lovemelrose. So much information to take in all at once.  As already has been said it's hard but it's doable. Get all the support you think you need and ask for help when needed. Your medical team is there to help. And always use this site to talk to someone who listens at any time

Hendrix

@lovemelrose I hoping your doing ok...can I ask you was your cyst painful...they found a cyst in my bc boob at 12mth mam...but 2yrs down and I find it hurts now...anyone else experience that with a cyst? Take care @lovemelrose xx