Starting chemo soon, what are your top tips?

[SheNumpty]

Not really an AIBU, but I'm hoping to tap into the experience of the many by posting here.

I'm starting chemo in the next few weeks, I will lose my hair in the process. Although I went with to many chemo sessions four years ago with my Mum, whom we sadly lost, I don't really know what to expect for myself - I think my Mum hid a lot of it from me.

I have a two year old DD, and I want to maintain as much sense of normality as possible. I know I'm not being unreasonable to ask you guys, so do you have any tips, advice, resources, to get me and my family through the next seven months?

SheNumpty I'm sorry you're having to cope with all this and I hope you'll make a wonderful recovery! On the practical side if you don't usually qualify for free prescriptions then now you have cancer you can get a card which will give you free medication for five years. Go to a chemist and ask for an NHS Medical exemption form, fill it in and pass it too your GP who will sign it and send it away for you. Cancer can be financially hard as well as emotionally and at least this can save you some money. Good luck and an UnMumsnetty hug

Good luck OP. It wasn't as bad as I thought it would be. One thing I did find though was that whatever I ate on the day of Chemo, I couldn't then face it after and it took me ages to start eating those foods again. Not a big thing but you may want to avoid your favourite food on the day of chemo! Be kind to yourself.

I know how batshit this sounds, but if you lose your appetite sniff rosemary oil or crushed fresh rosemary a few minutes before you eat. It stimulates your appetite. Sage works nearly as well.
Also, orange or tangerine oil are good for nausea, especially if you find some food (or other) smells just make you more nauseous.

Find out if there is a cancer support centre near you that offers complementary therapies. Many of my patients say that reflexology, apart from being relaxing, can help with chemo side effects, particularly nausea. Don't get hung up on healthy eating. If your appetite decreases, concentrate on getting calories in, now is not the time to obsess about what you are eating.

So sorry you're facing this lass. A handhold from me.

I'd suggest whatever prep you can do now in terms of food. If you can, bag or box up small quantities of things you like and freeze it.

So sorry you are going through this. It sounds horrifically difficult.

One tip from me, not specific to cancer but to ill health. When anyone says ‘let me know if I can help,’ say, ‘ thanks, that’s very kind, if we could schedule something now it would really help me to plan.’

Then start a diary and think of various tasks that you will need, childcare, shopping, ironing etc and put it in.

I’m sure people are sincere when they offer but unspecific offers rarely actually translate into real help. And they do mean it, just aren’t often good at following through unless it’s in the diary and specific.

Very best wishes to you and your family.x

I have no helpful tips, but wanted to send some

Drinking with a straw or fizzy water can go down better than other fluids if you’re suffering with nausea. Ice pops or ice cubes too. Invest in a good thermometer. I use Braun ear thermometer at work. Loads of rest. If you like to read and feel up to it an e reader is easier to read lying down than a book and there is less glare than with a tablet. Wishing you all the very best x

Also sending a massive enormous

My friends found the only skin care she could tolerate was dermalogica . Expensive so guess what she got every birthday

Take up every single offer of help as people reallly do mean it

Be prepared for (possibly) the feeling of the worlds worst hangover for a few days

Keep a diary and agree to take that sickness medication

Sending all my love and strength and get to the other side baby ❤️

Sorry to hear this, are they giving you BEP?

If they are it takes a bit of getting used to since it’s mainly done as an in patient. BEP includes bags and bags of fluids to protect the kidneys so a lot of the time your hooked up to things like saline. Potassium drips nip so ask them to slow it down.

If you’re not getting BEP what is the regime? I’ve had a few types. I had a mixed germ cell tumour with liver mets. I’m 8 years past diagnosis and have been cancer free for 7 years.

I got bad flushing so anything to cool me down was good. Learn your tumour markers because they’ll be discussed by your consultant a lot. They’re possibly CA125 HCG and AFP if it’s a germ cell.

PM me if you have any questions. It will not be as bad as you think. There will be bad days but there will be good days too.

Drink plenty of water, rest whenever you need too, take mints to the chemo sessions, don't try to over exert yourself and keep an eye on your temperature, any increase then call your Onc immediately.

If you have trouble eating enough food and keeping your weight up (my mum didn't like the taste of stuff during chemo) try to eat nuts and raisins. Just keep a bag with you at all times and snack during the day. It is amazing how many calories there are in nuts and raisins and they're healthy.

Ask about cold cap to reduce hair loss.
Take trashier and less challenging reading materials than your usual-steroids affect concentration.
Take some decent sandwiches and a flask of decent tea or coffee. I was there for up to seven hours.
Take headphones and download good television.

Otherwise it’s not too awful.
Avoid germy people. Be neurotic about not having visitors with colds. Good handwashing.
Your tastebuds can be damaged. Beer tastes better than wine. Curry tastes good but not much else.
If you can’t face food McDonalds strawberry milkshake is brilliant. It cools sore mouths, gives calories and the sugar gets through the taste buds. Never before or since but at the time..... frozen pineapple too.
Exercise is really good for beating fatigue. Swimming, walking, dancing. Anything. Just curling up in bed feeling sorry for yourself is about the worse thing you can do.
Don’t hit the people who put their heads on one side and talk in hushed voices with sickly sentiments - however tempting.
I had a goody bag from the hospital for each of the six cycles and that sorted most side effects. There were about two days each cycle when I felt off colour but otherwise life continued more or less as normal.
If you’re starting now make inclement weather plans in case of snow etc.
The anxiety about the unknown is often worse than the reality.

Avoid McDonald’s milkshakes/soft serve ice cream while you are neutropenic (the middle week generally) as that’s when you’re most vulnerable.

If it’s BEP don’t entertain the cold cap, unfortunately it just doesn’t work with that chemo and actually will be more faff and pain than is worth while.

I just wanted to say very good luck - I hope you let us know how you get on

Hi there!!! I don’t have any helpful advice at all but wanted to wish you well. Be kind to yourself.

All the very best x x x x x

What is your hair like at the moment? Is it long enough to have it cropped and make a wig out of it?

Best of luck with the chemo and sorry to hear about the colostomy, I bet that is quite an adjustment.

Take a flask of iced water and sip it during chemo. I made little lemon and orange ice cubes as it really does help to prevent mouth problems if you suck ice. Take someone for company if you can.
Remember fatigue is cumulative and the best way to tackle it is to react rather than struggle. Accept any help that is offered. Eat exactly what and when you fancy. Take all medication offered. Contact the chemo ward if your temperature climbs to 37.5.
I had 8 rounds of chemo in 2006/7. I am fine now.

Rest!not react...

Mine would be- try to retain a sense of yourself. I felt like i was painted into a corner and expected to be some kind of perfect cancer patient. I was given lots of wafty scarves and people offered to paint my nails. People talked to me about mindfulness. These things (although so kindly meant), are very not me. Have a think about the things that make you happy, how you like to cope with things. And even patient is different, and cancers and chemos are different too, so don't compare yourself to a real or mythical other. I also hated people checking up on me (because I felt guilty about saying I felt poorly, or too rough to chat), so I had a friend as gatekeeper, which was excellent.

Echo pp that said perhaps reading will be too taking some days. I got really into sudoku, and shitty reality TV, and oddly cooking programmes even when I couldn't eat. And I liked looking into the garden and walking alone, when I felt able.

And don't try to be stoic. The chemo nurses have so much knowledge and experience and they'll typical know when you're likely to feel better/worse on your regimen. This helps to plan, a bit. And let them know about side effects or health niggles as they'll probably have seen it before and know things to help.
I had appalling gut problems (on BEP), so maybe head it off by specifically asking how this might effect you with regards to colostomy?

Best of luck!

Try and get straight on to zofran (strongest anti emetic.) Don't let them mess about with other anti emetics. Remember you can take zofran, cyclizine (or stemetil) and metoclopramide or domperidone AND pepto bismol at the same time.

rather than refusing to try anti sickness medication, try it but keep letting the nurses know if it’s not working till they find something that does. I ended up on an anti psychotic at one point because it was the only thing that worked for me (not during first rounds of chemo, don’t worry)

If you get a very painful mouth ask for gelclair. It’s so soothing and lovely.

Oh, if you are worried about hair loss upsetting your family (and yourself), I would recommend taking control and chopping it short, then shaving it first. Less traumatic for you, and your child, than seeing long strands of hair coming away in your hands. I actually felt like a badass the first time I shaved my hair!!!

(P.s I also had ovarian, so feel free to PM if you want to talk, off load or just ask for tips - or not!! Only do what YOU want to do going forwards, not what is 'expected' of you!)

Just wanted to wish you the best of luck be kind to yourself x

The first time I started losing my hair, I clippered it to about 1cm long, but I found when it fell out I constantly had an itchy neck because of all the sharp bits of hair, like when you've been to the hairdressers for a cut.
So, the second time, I didn't bother, and I also found I didn't lose it all that time, so I could wear a hat and have a bit of fringe poking out.

I tried the cold cap but only lasted 10 minutes as it gave me an excruciating headache.

You might be given a thermometer, I was. It's really important to keep an eye on your temperature when you're on chemo as your immune system takes a hit and even a simple infection can be dangerous. They'll give you a number to call if you do get one.

I bought soft cotton caps from Amazon. They were about £8 each and came in lots of colours. I preferred those to scarves or turbans, and as they were lightweight and soft, didn't irritate my head.

If you go off food, they can prescribe protein drinks and puddings. The Fortisip and Forticream range weren't too bad. You can also add the drinks to milkshake if you don't like taking them as they come.

The pre-meds I was given included Piriton. It stings a bit when first going in, but started working immediately and I found it made me so drowsy, I dozed through most of my time in the chemo unit.

Wear comfy clothes. I always wore jogging bottoms as they were easy to pull down when I went to the loo, as I had one hand connected to the IV. They pump loads of fluids in, so you'll need the loo more often.

Everybody else has suggested what I would, so I won't repeat it. Just go easy on yourself and rest when you need to.

Sorry you're going through this, it sucks, but I'm wishing you all the best (and the other posters who are also going through it).