Just a few quick things that I found helpful:
Take a wrap or pashmina/shawl to put over the arm that the chemo goes into.
Also for chemo days, wear a top with loose arms, so you can just roll it up, rather than have to take your arm out of it.
I don't know how good your veins are (mine were terrible), but take it from me - if they suggest you have a PICC line put in for your chemo, take them up on the offer. I wasted the first week worrying about it and doing hard thinking about the pros & cons, but if I went through this again I wouldn't hesitate!
I had a couple of loose smock tops I wore with leggings & trainers I could slip into & out of quickly for radio. That way you only need to take your leggings off, hop on the table and then pull the bottom of the top up right at the last minute. Stops you freezing while the initial positioning is happening and saves you a little dignity.
If your para aortic node is being zapped with radiotherapy, be prepared for the possibility that you might feel really pukey for a couple of hours after your radio. For me, it got so bad I was throwing up everything I ate after radiotherapy in my first week. I was taking metoclopromide three times a day (for sickness) but I was even throwing that up. The radiologist guessed straight away that it was the para-aorta zap and got me Ondansetron (next level sickness drug) which I took about an hour before my radiotherapy. It made a massive difference, and I used it for the rest of my treatment. No more puking!
If you do end up taking Ondansetron, it can be very constipating, so you might find yourself in the mad position of being constipated in the middle of the week and loose at the other end of the week. You sort of get used to it. I lived on mashed potato when I was loose/& or pukey and more balanced meals with veg when I was bunged up. My team gave me drugs to deal with either option from the outset, don't be afraid to use them if yours do too.
I bought a large tub of E45 cream before starting - no weird chemicals & scents - I applied it liberally to my tummy & thighs every day, and started doing this before the treatment began. I had no radiation burns or even soreness or redness. I don't know if I wouldn't have anyway, but that act of daily self care was really helpful. (E45 is OK, but DON'T use anything scented or fancy in the radiotherapy sites though, it clashes with the radio and might actually harm your skin!)
Drink tonnes of water, however crap you are feeling, aim for 2.5 litres a day. It helps your liver & kidneys flush out all the excess drugs hanging around and really helps get those chemo chemicals moving. It's also good for your skin.
Dont take anything for granted re: your taste buds. I went totally off coffee and anything citrus. I was a coffee fiend, but the mere smell of it would make me retch. It has come back (months later) but you wouldn't believe how your palate can change. Listen to your body & trust it on that front. This is not the time to worry about your waist size, diet, good/bad etc. Be kind to yourself and eat what you want/can tolerate. You can have the luxury of exercising it all off after the treatment is done!
Try to get out into some fresh air each day, even if it's just for a short while, but don't beat yourself up if you can't.
Steroids do weird things to your sleep pattern & activity levels, I would be wide awake in the middle of two-three nights with my mind racing & composing lists of things to do. I would have my chemo on Monday & by Wedesday I'd be doing chores and going a bit mad. By my Thursday 'weekly update' appointment I was manic and then Thursday night/Friday I would crash knackered into the weekend, when I would slowly come back to 'normal' only to go through the cycle again on Monday. Keep a notebook & pen by your bed for these steroid nights.
Stock up on paracetamol at home for minor aches, pains & headaches. It'll save you having to go out and get some.
Get yourself a decent thermometer and check your temperature daily.
I found keeping a journal helpful- I mostly wrote it on chemo days, and whilst in the waiting room for radio, there's a lot of hanging about! I look back on that journal now and it's amazing how helpful it is to be reminded where I've come from. My husband bought me a beautiful moleskin notebook for it so I took it seriously. It's not for everyone but, it's an option.
This time last year I was on week two of my treatment and just developing a healthy dose of (confirmed) flu that would knock me six for two weeks, it still all worked out in the end though. Whatever is thrown at you, you can deal with this. Tell your team everything, take all the drugs they offer (this is not the time to be noble), sleep when your body tells you to even if that is in the middle of the day, dont beat yourself up about chores this is NOT the time - the biggest job you have is giving your body the best chance it can have to smack down that cancer.
Guess that'll do for now eh? X
