All your chemo/cancer tips and tricks

[biops]

I haven’t felt mentally ready to join a longstanding thread/community yet; I’m still in the investigative stages awaiting treatment so finding it hard to talk to others while I don’t know what my situation is exactly, if that makes sense. So I haven’t been on cancer forums etc.

Anyway, I know I will be under going at least 19 weeks (8 rounds) of chemo. Hopefully, from next week.

Ive just set up Hello Fresh to avoid meal planning, my mum has said she will kindly come over and help clean. Kids will be having school dinners, and I’ve increased my son’s GCSE tutoring.

I’m wondering what things you had in place that made chemo manageable, anything from lifestyle to your own personal health. Because I’m scared to actively go out and google I’d be very grateful for any tips you’re willing to bring to me!

Also seeking head scarf recommendations!

Hi @biops I'm sorry your in this situation. Teen Dc is currently 2 months into 9 months of aggressive chemo. So I haven't much experience but I've found we've learnt with every cycle.
Things we've found helpful are always to have a hospital bag packed, thermometer, joggers/easy fitting clothes, long charging wires that stay in the bag, a sick bowl in the car with water and baby wipes, a plastic a4 envelope file for all your hospital notes with a notebook to jot notes down/keep a list of questions for asking medical team.
With hair dc found once it started falling out having it shaved was the right thing for them the head sensitivity has meant they dont want a hat or anything touching them but other teens I've seen have wigs, hats or scarfs on so imagine this is trial and error.
Food wise this has been difficult for dc and also changes last month dc ate strawberries, cornflakes and omelette everyday and not much else, now can't tolerate them. Chemo nurse said don't buy too much of one food as you go off it.
With dc regime they are bedbound for a week every third week and cant do anything and are able to partially cook a meal by week three but have little appetite and need support. Dc wants juicy fruit, jelly, lollies as struggles with taste and getting drinks in.
I'd say in some respects starting chemo was a relief (pain subsided, other symptoms improved, could see the tumour growing before chemo started) however its brought lots of other side effects and each round slightly worse. Dc is lucky we're told only a couple of mildish infections which after a course of antibiotics have resolved. But emergency admissions are common. Also lots of appointments for top up chemo, mris, ct, other specialists when cancer or chemo cause other issues, oncology reviews, psychology treatment and palliative care reviews this month alone.
I'd be interested in other people's experiences on this because we've got a long road ahead and know things change so quickly.
We try to take each day at a time and find out what helps as we go along and what doesn't. Best of luck.

Simple meals. Even Hello Fresh would have been a struggle. No one needs elaborate meals. Keep it much simpler. Pasta and garlic bread. Nice ready meals. Things the kids can cook themselves. Nice snacks. Also keep in mind that your taste will likely change. I’m on immunotherapy (not chemo), but for the first few months, everything tasted of nothing, except for water, which tasted salty. 🤷🏻‍♀️ It sucked. It has gotten better now. Things don’t always taste right, but not as weird as in the beginning.

Build in time for rest. I was napping most days after treatment. Don’t fight it. Rest. Even on the weekends, even when other people want you to do something else. Dh spent a lot of weekends taking the kids out so I would have a quiet house and could sleep. Again, it’s not forever. I’m 6 months in now (my treatment last for 24 months). I only need about 2 naps a week now, but I take them.

Find a support network. I found a great Facebook support group for my specific cancer that is UK based and that has been so helpful. If you are under 50, I really recommend Shine Cancer Support, which is a charity that supports people in their 20s-40s who are living with cancer. They have local meet ups and I’ve met some lovely people that way.

Everyone responds differently, so it's hard to say how you're going to feel.

Obv you'll feel like you've been run over after chemo, but i've not really felt sick. Make sure you take all the meds they give you!

Main things i've had - the big one is constipation. Have to take daily laxatives, sometimes multiple doses. Never suffered before.

Taste - everything tastes really odd, and sour/tangy/oniony things are a real no-no for about 10 days after each chemo

Don't eat too much in one go - my body feels like it can't process it, and i actually feel quite faint. Eat little and often.

The white blood cell booster jab i take after each chemo makes your bones ache. A daily OTC anti-histimine tablet really helps for about 5 days after (oncologist recommended it, no idea how it works)

Good luck - you'll feel better once it's all up and running and you're actively fighting it, rather than just doing tests all the time, i promise.

Oh and I got my scarves from Amazon - big silky square ones. I didn't spend a lot as i have hunch when this is over i shall want to burn them😁

As others have said be prepared for food to taste odd/not want to eat and also be prepared for immense tiredness.

Different drugs and treatment regimes have different impacts. I had leukaemia and my chemo was done as an in patient and was in hospital for weeks at a time which was a PITA in its own right.

I found lightweight merino beanies from Buff a really useful head covering. Warm enough to wear outside in the winter but not too hot to wear indoors. I wore beanies all winter then moved to caps and headscarves in the spring. I found I needed a square headscarf to be a minimum of 60cm along the edge to fit and that I didn't like wearing polyester. My two favourites were 100% cotton and 100% silk. The silk one was lovely to wear. I only bought a couple and got patterns/designs I really loved so I would wear them after.

I tried a couple of wigs on but felt ridiculous and they seemed like a waste of money as I definitely wouldn't use it again.