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Starting chemo soon, what are your top tips?

(63 Posts)
SheNumpty Thu 07-Dec-17 15:19:16

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?

AnnieOH1 Thu 07-Dec-17 15:24:10

Get fleeces for warmth, maybe even some fingerless gloves plus a chillow type pillow for cooling. Start moisturising your skin in advance (just cheap acqueous cream). Make sure you have plenty ice creams in freezer, those cheap freeze pop things can work wonders. Get yourself something as a treat. Doesn't matter what but you deserve it now. Relax and know there is a light at the end of the tunnel.

What is extremely valuable is if you can keep a journal. Detail symptoms, feelings, activities etc. It can prove invaluable to you, your family and medical team.

Best wishes.

FuzzyCustard Thu 07-Dec-17 15:25:06

Soft cosy blankets for chemo days.
Nice soft hats for the hair loss bit.
Sleep as much as you can.
Take all the anti-sickness drugs you need (my DH needed them for travelling in the car - also a pile of sick buckets from the hospital)
Take any help offered, especially practical things like food parcels, childcare, lawn mowing. Be aware that your partner (if you have one) may well feel as bewildered as you do. Their dreams have changed too.
You may feel the cold more...fleecy, no fuss outfits for days on the sofa
On days when you feel well enough, walks in the fresh air do you good
Eat well, (but be aware your tastebuds may change)exercise gently as much as you can.

And most of all...be kind to yourself.

Good luck flowers

FuzzyCustard Thu 07-Dec-17 15:26:18

Oh and hand washing to avoid infection - you, your family and EVERYONE who comes into your house or with whom you have contact. You can't do this too much.

BarbarianMum Thu 07-Dec-17 15:33:05

All those people who say "anything I can do to help" - take them up on it if/when you need help, or to free up someone else's time to support you. They will probably offer once but you can call them in week 6 and ask for stuff.

Loose "should" - as in "I should be able to do this/manage this/ feel better by now". Chemo affects people differently and some weeks are better than others. It's ok not to be up to stuff - emotionally or physically.

StormyLovesOdd Thu 07-Dec-17 15:34:56

OP this was me 2 years ago though my DD was 7 at the time.

Firstly try not to worry too much, I found the thought of chemo and all the other stuff we have to go through to beat cancer was often worse than actually having it though of course everyone is different.

Take all the meds they give you, I came home with a carrier bag full of "goodies" every time I had to go and set alarms to take the anti sickness tablets as its easy to forget when your tired.

I carried on pretty much as normal at home though I did have 10 months off work whilst I was going through it all. The first 2 or 3 days after chemo are the worse (it feels a bit like the flu) but you will gradually feel better the more days that pass and by the time you are ready for your next session you will probably feel fairly normal and then it all starts again.

Just try and go with it and accept any offer of help especially with your DD.

I hope it all goes okay for you, if you want to chat feel free to PM me. I don't know if its relevant to your type of cancer but I follow a lovely friendly facebook group called UK Breast Cancer Support Group - for sufferers and survivors which still helps me no end. you need to search for it on facebook and ask to be a member as its a closed group.

ParadiseCity Thu 07-Dec-17 15:40:16

Sorry that you are ill and especially with the sad loss of your mum.

I don't know anything about chemo but I wish you well. Might sound daft but I know when I've been recovering from illness that Amazon prime has been a godsend. For the easy shopping and also the TV.

flowers

Chaosofcalm Thu 07-Dec-17 15:45:16

I am sorry you are going through this flowers

My Mum developed thrush in the throat when on chemo and her nurse recommended pineapple juice to help. When my Mum started to lose her hair her hair dresser came around to her house to shave it off.

Macmillan has a helpline and I think
Chat boards too.
www.macmillan.org.uk/information-and-support/coping/getting-support/talking-to-us/index.html?gclid=EAIaIQobChMI8_PfhJ_41wIViJPtCh1TTATPEAAYASABEgKaQfD_BwE&gclsrc=aw.ds

LakieLady Thu 07-Dec-17 15:48:27

No tips, just wanted to give you these flowers and say good luck.

Fekko Thu 07-Dec-17 15:51:50

No flowers or real plants, look after your teeth, get some of that milkshake stuff dieters use for when you don't feel hungry-ty need to keep your strength up.

You might look great but feel as weak as a kitten. Make sure everyone knows that if they even think that they have a cough or cold to keep well away. Keep hand SAN by the door and make sure people use it.

Keep occupied and keep positive - it's hard but I'm sure your little one will keep you busy.

Be selfish with your time and attention.

Good luck!

tomatopuree Thu 07-Dec-17 15:54:11

Please don't use aqueous cream. It is a soap substitute and could burn your skin. Get some white/yellow soft paraffin as that will soak down into the layers.

Or a really nice hand cream if you don't have dry skin.

I have terrible dry skin so I use white/yellow soft paraffin

DivaPlavalaguna Thu 07-Dec-17 15:54:21

Hi, I am on day 11 of my first cycle and I agree that losing the ‘should’ is a good idea, today is the first day I have felt almost normal and the disappointment that I wasn’t bouncing around after a week has been difficult. I’m finding that some close family members also have a ‘should’ mentality towards me as well and it drives me mad!

BumbleNova Thu 07-Dec-17 15:56:06

My mum loves her heated blanket I bought her on amazon. great for cuddling up on the sofa when you are feeling exhausted.
soft hats - easier than jazzy scarves, no complex tying required.
good hand cream
moisturising mouthwash can really help with the discomfort. and throat sweets.
nice bubble bath - a hot bath can help the aches and pains.
soft socks if your feet get sore.
ginger tea - can help with nausea but obviously the meds should help too.
eat lots now - you will loose weight, have some spare. eat as much as you can when you feel up to it. same with gentle exercise, getting some fresh air helps.
Are you having FECT? I wish I wasnt, but I'm a bit of a chemo expert these days.
Have you had a look at a wig? my mum's is very good. have you also considered having it cut very short? it can be less traumatic for when your hair falls out.
nail varnish - i think it can stop the nails discolouring.

CMOTDibbler Thu 07-Dec-17 15:56:27

There is going to be huge amounts of boring hanging around time - for blood tests, for when they haven't made up your drugs, for the oncologist and so on. So always have a bottle of water, snacks, a thermal cup like a Contigo with coffee/tea, Kindle/ipad (and get one of those battery pack things as you may not be able to plug in to the wall to recharge phones and devices).
Get some seriously comfy clothes in layers - you might get cold, your hospital might be hot (or vary massively)
And don't be afraid to ask for help - when people say 'let me know what I can do' get their mobile number and ask them. Don't think 'oh, I don't know them well enough' - it's a long haul, and you'll be surprised who steps up

specialsubject Thu 07-Dec-17 16:06:26

Yyyy to take up offers of help. We, your friends, do mean it and are happy to be able to do something. Just ask, really.

Wishing you the best - and to my friend.

FallenMadonnawiththeBadBoobies Thu 07-Dec-17 16:07:26

I was going through chemo this time last year, so my thoughts are with you, OP.

The first thing I would say is that not all chemo regimes are the same. There are different types of "poison", and different poisons may have different side effects. For example, chemo for breast cancer tends to be administered every 3 weeks but, as I had one of the more aggressive types, mine was every two weeks, which gives the body less time to recover.

You will hear from some people that side effects aren't too bad at all. That is true - for some people. I have known some who have been able to work throughout treatment. But please don't feel you are being a complete baby if you feel it's affecting you more. That is the nature of the beast. It can and does hit some people harder. I felt terrible for 10 out of the 14 days of each cycle on one type of chemo (EC) but much better on the other (Taxol). Be kind to yourself.

Do accept help, as others have said, and moisturise your skin. I asked for a copy of the blood tests I had before each chemo, so that I could understand better what was happening. Also, ask for your vitamin D levels to be tested, as chemo does have an effect on this and there is some indication that low vitamin D may be linked to recurrence rates.

Don't expect to bounce back to normal when active treatment is over. My surgeon said I needed a year off work. I had about 8 months, but I struggled with chemo brain and fatigue when I first returned to work. I should have given myself a little more time.

Waiting for it to start is the hard part. Once you get into the routine, you will go with the flow and, before you know it, it will all be behind you.

All the best x

smurfy2015 Thu 07-Dec-17 16:45:20

Soft [hug] & {brew] & cake

liz.oriordan.co.uk/blog/files/cope-with-chemo.html

She is a breast surgeon who has had breast cancer herself. There is lots more on the blog but Ive only linked the chemo page.

Also although it might be hard to read when going thru cancer, The Other Side by Kate Granger as its her going thru it and telling it as it is, very educational esp for health professionals who end up on the "patient side" of the health care status quo

mrsBeverleyGoldberg Thu 07-Dec-17 16:52:42

Maybe some counselling as there's lots things you can say to a counsellor that you can't say to people close to you.

SheNumpty Thu 07-Dec-17 17:00:55

God, I can't tell you how helpful this all is folks, and thank you to those who offered good wishes.

I'm going to be having treatment in three week cycles, and I'm being treated for two types of cancer (skin and ovarian) as mine is a weird one that is skin cancer in an ovarian dermoid cyst. Dermoid cysts are weird things, Google if you're brave, they can contain hair, teeth, nails, skin cells and even eyes - I kid you not. Mine had skin cells that are malignant, and also a tooth! Yikes! So my docs don't know how best to treat it, as they don't know how it will behave. I'm still awaiting mri scans to see if I have it anywhere else too, I don't actually know what my chances are at this point. The cyst they removed had ruptured so I know the skin cells are floating around already.

My bowel was also damaged during the first surgery to remove ovary and cyst, so I'm coming to grips with a colostomy bag. It's an absolute shitfest at the moment - literally. confused I appreciate every one of you who's taken the time to help here. Thank you.

Turkkadin Thu 07-Dec-17 17:08:25

Sending masses of love and hugs to you. You sound amazing xx

Chilver Thu 07-Dec-17 17:10:33

Sorry to hear this.

My tips:
For actual chemo day:
- drink lots and lots of water before, during and after chemo session (might need to see more during chemo but you CAN walk to toilet with your chemo drip in) - the dehydration made my side effects MUCH worse before I realise I wasn't doing inking enough
- take music/ distraction. I found that I could concentrate on reading or tablet tv but putting on my earphones with music blocked out everything
- warm your arm before drip goes in; they had problems putting it in each time but warming helped - also an anti-anxiety pill worked wonders and helped me sleep through most of the time hooked up to the drip blush
- soft clothes, scarves etc all helped to feel comforted and warm (and in my case, enabled sleep!)
General:
- I had a baby at the time; didn't worry about the faff of a wig at all so just went out bald. Wanted to keep things as normal as possible. Pretty scarves for a night out worked, lovely soft cotton scull caps for night time and when cold - it surprised me by hurting when my hair fell out, like little electric prickles all over my scalp so lying on a pillow hurt. I bought mine from a Bold Beanies online but there are many who sell them
- take people up on their offers to help!!! I found it hard but was very grateful for friends and family doing my cleaning, shopping, cooking etc
- the chemo knocked me for six and I was bedbound for 7 days post chemo day in every cycle. On the next week, I'd be a little stronger (could walk to the end of the path!) And by 3rd week was out and about with my dd as normal. Just plan things for that week and don't worry about the other two if effects you in the same way.
- get someone close to you/ yourself to monitor the first cycle or two for symptoms, how you feel etc. I was bed bound as I said up above, had different symptoms throughout and got very down mentally (only time!) On night 6. It took my DH to notice the cycle - it was same every time and once I was aware of it, it made it much easier to cope with.
- we expected that I'd bounce back once treatment finished. Even docs say ' off you go, all done'. This is actually when I hit rock bottom - mentally and physically the 3 months AFTER chemo finished was the worst and it was a slow upward trend after that. Be aware of it, hope it doesn't happen that way for you, but from what I've heard, is quite common and the docs don't prepare you for it!!! You've been on a treadmill of treatment and appt and suddenly that goes and its hard to cope with.
- take whatever counselling or therapy you are offered - and ask what's on offer. Art therapy, couples or alone or even family therapy, do it!! Yoga, exercise classes - they all help. I would also recommend a support centre like Maggie's Centres. They offer invaluable advice, support and logistics to help you, and your close ones, through it.

That's it off the top of my head!!! By all accounts, I had a rough ride with chemo (but it worked!!!); I hope you have a better experience like many many other people I know who've gone through it.

flowers

user1492877024 Thu 07-Dec-17 17:13:34

Hi Numpty,

Nothing much to add but just wanted to wish you the best. Got back from the Christie yesterday where my mum is having chemo. Don't know where you are having yours but can confirm that the staff at the Christie are just fantastic. Anyway, good luck, I hope your treatment is a success.

fluffydogs Thu 07-Dec-17 17:34:09

Deffo nice fluffy socks, my feet got cold.
Nice blanket for the sofa
Take snacks to hospital, my drip took 10hrs so I needed them! Like PP have said everyone's poison is different.
Don't wear jeans to chemo like I did, I didn't think that I'd have to use the toilet with a drip in and with the shits too it was a stressful day, sorry for TMI!!
I didn't have the brain power to read but some did, I preferred my iPod.
Don't eat your favourite food when you feel nauseous, you'll never want to eat it again!!
Don't feel guilty about lying around and resting, you'll need it.
Good luck, I hope it works out for you, like someone else said it was when it all stopped I felt my absolute worst.

Fluffyears Thu 07-Dec-17 17:38:20

Don’t be scared to ask for anything you need from hospital. Heartburn tablets, anti-sickness, laxative or Imodium they will give you whatever you need. Be careful of things like a cold etc as it can be dangerous. If you feel the slightest bit I’ll talk to your gp or oncologist.

Bet of luck to you in your fight, try not to let that bastard that is cancer win.

ringsnthings Thu 07-Dec-17 18:04:21

No helpful tips to add but just sending you good vibesflowers

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