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?

[elportodelgato]

Hi SheNumpty,

I had chemo (3 yrs ago for breast cancer). My suggestions would be:

1. lots of treats and creature comforts at home for the 'bad' days
   
2. call on all support you can muster to take over childcare etc while you are in bed - there will likely be 3-4 days each cycle where you're literally bed bound
   
3. plan fun things to do on your 'good' days, I found week 3 of each cycle I felt brilliant and could see friends, go running, spoil myself
   
4. manicures. I got addicted, dark colours apparently protect your nails and I anyway didn't want to look at my black flaky nails as it just reminded me of it too much
   
5. 'look good feel better' make up session, if you google it you'll find one near you. Invaluable and I came away with a huge bag of expensive make up which was a real treat
   
   Unfortunately for me, my cancer popped up again last year and it has spread so I'm now stage 4 (like you) and having more treatment to control it but with no prospect of cure. Please feel free to PM me, I don't have any solutions by any means but I'm a year into my 'terminal' diagnosis and very happy to chat. Lots of love and hold tight to those around you xx

[youarenotkiddingme]

My mum had a craving for salt and vinegar Pringles and skittles so I’d say stock up when you get cravings!

She also felt very cold and we bought her the fleecy soft touch nightwear, slippers and socks as she said her skin felt sore. A soft pillow and bedding is a must because the skin on your head can be sore if you lose your hair.

My mum got a wig - she paid for it. However she preferred to wear bandanas most of the time so its worth buying yourself a number of them you can match to your outfit and feel like it’s a fashion choice rather than a chore. That’s one of the biggest things my mum said.

[BlondeB83]

I have no advice but I just wanted to send postivive vibes and good luck.

[OneInEight]

So sorry missed your last update so my post may have been tactless.

[OneInEight]

Emend. Emend. Emend. Anti-nausea drug - expensive so they are reluctant to give it to you straight away but is the one that worked for me. Also take the anti-nausea drugs sooner than they say. Wait till you start feeling sick and you will be throwing up all night. Mouth washes help reduce mouth ulcers. Eat fruit so you don't get constipated. Your taste changes (only time in my life I haven't wanted chocolate) but strong tasting things were much better and important to keep eating. Be kind to yourself - I carried on working through the first half of chemo but in retrospect I should have taken the whole time off and used my energy for the family. It is tough but you do get through it.

[Motoko]

I'm sorry to hear that your treatment is palliative. I just want to say that my cancer was diagnosed 5 years ago. Because they couldn't remove the tumour, my treatment has also been palliative.
I didn't expect to live this long, but here I still am. I pretty much shut down for a couple of years, but I started to live my life again, and made sure I had things a little in the future to look forward to. I'm planning another holiday next year. It's only 5 months away, so I'm hoping I'll still be able to go. I've found that looking forward to things is really important to my mental health.

I hope you have a lot longer than you think and can make the most of living with cancer. Sending you some unMumsnetty (((hugs))).

[AgathaMystery]

I'm really sorry. I hope that as you start treatment, more options become available to you xxx

[WhatWouldLeslieKnopeDo]

It looks like you've probably got all the tips you need, but then I saw your latest update and I'm so sorry. SpottedZebra has already linked to the cancer thread so do come and join us if you think it would help. There's nobody with the same cancer, but there are a few of us in the incurable boat who will understand a bit of what you are feeling

I also have an ileostomy so can empathise on that front too! (If there's anything specific you're struggling with, feel free to ask/PM me in case I can help)

[DML13]

Hi, I am sorry to read that you are going through chemo. I work in a Cancer Unit and I understand you desire to maintain normality for your DD. If hair loss is a concern, you can ask for a 'Cold Cap' - essentially a cap you wear which is extremely cold whilst you're having chemo, this will reduce (but not prevent hair loss). Also we do a great wig service so some of our ladies, make a very seamless transition from having hair to then wearing a wig. One of my patient's completely fooled me the other day, as wigs nowaday are pretty good and look authentic. I agree with the top tips from other posters, accept all the help you can get. For the first week after chemo you will feel low in energy so pace yourself and you'll have to become obsessive about hygiene - hand washing/alcohol gel on hands is a must. Good luck and perhaps post again and lets us all know how you are getting on. X

[whiskyowl]

I'm so sorry you're going through this.

One thing that really helped my Mum was crystallised ginger. It helped with the feelings of sickness she sometimes got after the drugs.

Really, really comfy clothes - Sloggi pants, yoga trousers, soft merino tops.

If people ask what they can do, take them up on it. Don't be polite. They will be grateful for a chance to help. "There's nothing I need right now, but if you could be on standby and could take DD if I need a break, that would be so wonderful". And do it if you need it.

[TheSpottedZebra]

Oh She really sorry to hear that.

Have you seen this thread www.mumsnet.com/Talk/general_health/3071667-CANCER-SUPPORT-THREAD-60-Here-we-are-again-join-us-if-you-have-any-sort-of-cancer-or-if-youre-waiting-for-cancer-test-results ? A friendly bunch, at all various stages of cancer. That might be a good place to look for people who have been exactly where you are? x

[SheNumpty]

Thank you all so much for replying. There are a few I will reply to over the next few days, but I've just come back from seeing my consultant at the hospital and been told that my treatment is to control my cancer, because they can't cure it, so I need some time to digest. I'll be back when I've taken that bit of news in, please don't think I've done a runner and am ignoring any questions.
Thank you all again, sincerely.

[Motoko]

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).

[purpleviolet1]

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

[Chilver]

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!)

[Hauntedlobster]

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.

[Butitssohard]

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.

[TheSpottedZebra]

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!

[thegreylady]

Rest!not react...

[thegreylady]

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.

[grumpysquash3]

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.

[notsohippychick]

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

[AgathaMystery]

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

[Hauntedlobster]

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.

[Crumbs1]

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.