Chemo essentials/nice things to have

[EvenLess]

Hello,

Am still processing the recent news that I have been diagnosed with Hodgkin's Lymphoma, stage 4... My medical team is confident that I can beat it, but the treatment is going to be absolutely brutal as the cancer is so widespread. Trying to come to terms with the fact I will be spending large chunks of time in hospital away from my DD, who is not quite 5. However, am trying to count myself lucky that I have a great support network around me and the outlook is positive.

If you or someone you love has gone through cancer treatment, what things helped you cope with the treatment/side effects? DM has set up an Amazon wishlist of things I might need, and is asking me to add to it so she can purchase the items this week. I've got some head coverings, PICC line covers and an over-bed table but not sure what else might be helpful. My brain is a bit foggy, for obvious reasons, and I've mostly been focused on making sure my DD's Christmas and birthday presents and party are all sorted out. Any tips most welcome, thank you.

Sending love and best wishes to you for the treatment OP.

Absolutely invaluable will be a lovely blanket, lots of skincare like some really good lotions and lots of good lip balm. Blistex intensive moisturiser is brilliant, after I bought my husband just about every single one available this was the only one that healed his poor lips.

A good day bag for carrying things to and from the day unit, or if you're staying in for a while some noise cancelling headphones are a must.

Lots of masks and hand sanitiser as your immune system will take a beating, and it's the secondary infections which are so dangerous so be prepared and be careful!

You might like to think about how you'll be spending your time - a tablet or laptop for watching nice long TV series or films and a Netflix or Disney+ subscription will really help.

Keep us posted 💐

Best wishes OP.

We're just emerging from the other side of treatment. A lovely soft blanket, as mentioned, entertainment (kindle stocked / subscriptions) good insulated travel mug, nice healthy snacks - days can be long. Oh, a well stocked freezer. Especially the freezer! After a long day of treatment, knowing we had a nutritious meal to go home to, without effort, was invaluable.

Before the first treatment, we spent two days batch cooking and, looking back, cathartic - we were together, busy focussing on a task and processing news together (we're not big at talking about feelings!).

Stay positive

Have you come across the You, Me and the Big C podcast? You might find the About the Chemo episode helpful for tips. Wishing you the best of luck. Also if it puts you off eating the About the Food episode is great too.

Wishing you the best for your treatment. These things worked for me:
Soft sleep caps
Cosy shawl
Bras with removable straps - those picc lines are hard to dress.
Short sleeved pj tops or tshirts - as above
Big data plan, and then more data.
Nice but not too strong toiletries, including favourite shampoo and conditioner - I had no hair but the act of massaging my head with familiar products brought me comfort.

Hope it goes well for you

Hand cream and boiled sweets were helpful for my mum. Her hands became very dry and she had a weird taste in her mouth from the chemo.
Also she used to bring a hotwater bottle with her to keep her arms warm which helped nurses find her veins for the treatments.
She also made sure to drink plenty water so always had an insulated water bottle to keep it cold.
Wishing you the best of luck with it. x

Sorry to hear OP, my FIL was diagnosed with the same in January, his treatment finished in June, he struggled with his taste and appreciated lemon sherbet sweets. Also really felt the cold, so cosy socks, blanket and hats. Nausea wise he was ok, but I have heard that Queasy Drops are good for that. Hope the treatment goes well for you, my FIL is out the other side now and last two lots of scans have come back clear x

Long lead for iPad etc. Cashmere socks. Drinks cup. Headphones. Gin ginger sweets. Blanket. ( I was always cold during chemo) Weirdly Cup-A - Soup sachets as my sweet tooth took a hammering and hot choc made me heave.
I was told dark nail varnish could help with retention of nails. I kept mine even tho my hair went.
If someone would lend you a mallet for the head-filters it would be great!
“ Oh you are so brave- I couldn’t do it” head tilt. Grrr

Head tilters!

I’m also starting treatment this week for stage 3 melanoma, though my treatment will be targeted therapy (daily tablets) instead of chemo because of the gene mutation my cancer has.

I’ll be spending less time in hospital having infusions and more time at home probably not feeling great. I’ve recently bought myself a new book and got some fluffy socks and nice skincare things. And lots of nice teas and coffee. And I have new headphones for listening to podcasts. I also have a notebook where I’m writing down things I want to plan for when I finish treatment (12 months). I have a 6 & 11 year old, so feel like we have lots of things we can look forward to.

Is there any food you won’t be able to eat? I can’t have grapefruit or Seville oranges (marmalade). 😩 So I’ve been eating lots of grapefruit and drinking lots of grapefruit juice to get it in before I start! I’ve also been stocking up on healthy high protein snacks too, so maybe think about any favourite snacks.

Aww OP best wishes. I'd one of the things my Dad found most useful was his IPad and headphones. He uploaded loads for hospital stays, music for comfort and peace, papers for knowing about the outside world, word games and sudokus for entertainment, access to emails and even links to on-line church meetings... I think he used it everyday until about 2 days before heaven called him home...

A rechargeable electric hot water bottle!

If you like magazines, maybe buy the Readly app, or see if your library offer the lobby app with free access to magazines.

Picc lines are not painful but awkward. When you're hooked up to chemo it's attached to the picc line which is usually on your upper arm. I found the most useful thing was a big warm short sleeved jumper. Also hospitals are hot, hot, hot. So thin layers and a warm wrap are useful as once attached to the drip you can't easily put on or take off a cardigan.
You might be sitting around or in bed a lot. I taught myself to crochet from YouTube. It's a quiet undemanding thing to do but a change from reading or listening to stuff.
Very long charging cables are useful.

My daughter was in this position exactly a year ago, same cancer so I send you my kindest wishes as you journey through this. You sound as though you have loving family support. and others have made good suggestions. One thing that my DD was unprepared for was the sheer speed at which her beautiful hair fell out - it came out in handfuls which totally panicked her. We had talked about being proactive and shaving her head but we weren't quick enough. It was a horrible low point for her.
She was fortunate in having a Maggie's centre right by the Oncology Unit and we all received a great deal of help from them. It's early days but she is cancer free and doing well.

Sorry to read your news.

It was a while ago now but the three things that helped and got me through it were:

Making an effort to look good on my good days. It gave me a boost to look good and have others tell me I look good.

I booked myself a big treat at the end of each chemo cycle, so that it was something to look forward to.

Those gel hand warmers, to keep my hands warm in the cold weather as I felt the cold more.

hope it goes well.

Hi op I’m currently going through chemo now. 5 down 1 to go wooo!

In the days of Amazon I would caution against buying to much stuff before you even start as different chemos can have different side effects. It’s also basically an unwritten rule that any headwear you try and buy in advance will suddenly look dreadful to you when you need to use it and you’ll wonder why you got it! I woudl also caution against buying lots of nice hand lotions etc as you might find your skin more reactive than normal. I bought a big bottle of e45 but I’ve not really had issues with dry skin so I didn’t actually need it anyway…

this is what I found useful so far:

1. beanie hats. I wear them 24/7 even in bed - being bald is cold!
2. hot water bottle
3. sweets for chemo

4.Ice lolly moulds -Check if your type of chemo commonly causes sore throat. I’m having two types (one after the other) and one didn’t affect my throat and the second really did.

5.i got a good picc line cover for the shower. The hospital gave me one which was essentially a plastic bag and so flimsy.
the daytime cloth picc cover I got from hospital for only £3. You only need 1 really, maybe 2 incase you lose it but you don’t have to wear them if you don’t want to.

6.Have some gaviscon in just incase you get acid reflux from steroids. The hospital should give you some drugs to counteract this if you do but sometimes it takes a few days to go from raising an issue to getting drugs.

7.get some lactulose in for constipation just in case. Although if they give you laxido then maybe don’t worry about that.

8.bignutritious meals sound great on paper but if you’re feeling sick you might not feel like them. Sometimes everything tastes like shit (this has never lasted long for me thankfully!) Get some good snacks in like high protein yoghurts, bananas, biscuits, whatever you fancy. You probably have the urge to eat mega healthy right now but eating something is more important than eating perfect.

Hi just wanted to wish you luck . I had an oncology placement and I would suggest some wide headbands if your going to cold cap, headphones, iPad/kindle, maybe some fancy Tupperware for if you want to take snacks, a fluffy blanket and some slippers oh and a travel cup I like a brew in my own cup x

Also I got told to take a blanket and slippers and a bag of books etc into chemo and then felt totally ridiculous when I turned up with a massive bag with 100 types of entertainment. Which I couldn’t bloody use on the first session as cold cap meant no glasses and I forgot to put my headphones in before cold cap went on!

My bag has got smaller each session I now just take:
headphones, boiled sweets a kindle my phone.

Can't offer any practical help or suggestions but just wanted to offer my best wishes and send you lots of positive energy

A good thermometer for home. Take your temperature twice a day ... its the first sign if you have an infection.

Ultra concentrated squash - you add drops to water, chemo wrecks your taste buds and plain water can taste horrible. Mostly it's useful to have amazon vouchers so you can order things when you realise what you need because everyone is different. Take care and will be thinking of you

Yes, that's a definite essential and also one of those pill organiser boxes that you can't imagine you will ever need.... And then you definitely do. Amazon do a nice rainbow coloured one.

from experience with mum she found it long and boring.

small water bottle, she was always thirsty and it’s boiling on the chemo wards but she found it hard to hold the weight of the normal ones by the end of the treatment.

her tastebuds were wrecked, but two things she could taste were ginger biscuits and cucumber sticks so tended to make pack lunch rather than eat the sandwiches given out.

Tote bag with a funny message to make you laugh when you see it on chemo day, as you’ll have a bunch of stuff/book to cart around.

power bank for phone if you have one of the longer treatments.

mum found some of the pre chemo drugs given (steroids?) meant she actually felt better during the chemo than any other day so tended to eat more.

they also had a lot of free massages etc offered to chemo patients so definitely worth investigating those.

A heated blanket really helps to cope with the neuropathy. Fingerless gloves help too.
Best of luck with your treament.

Sorry to hear you face some hard times ahead @EvenLess and hopefully you’ve got some good ideas here. I do echo what others have said about trying a bit too hard to be prepared- as really you need to just see how you are yourself and it may be totally different to how others have been on their journey. Like the PP liking a beanie hat- but I couldn’t stand hats and preferred a Buff (that was the brand name) thing that could be a necker or a bandana style. It was more versatile and comfy and I had a warmer fleece lined one for the colder times (as yes being bald is bloody freezing!) and cooler ones for the summer (I had treatment March to August ish).

Have you been told you will need overnight stays? I had NHL not HL but only had one overnight when I had a bad reaction to an early chemo… this had been a huge fear of mine as my kids were young then! I wanted their lives to not be disrupted too much, and thankfully they weren’t.

Maggies centres were not widespread then either but if there is one near you then definitely go and see what support there is locally. Also Facebook groups etc. As having places to offload and find people who have been there or are currently going through similar has huge value.

But one step at a time- I know you want it all to be organised and you want the control and some kind of answers… but try to take each day as it comes… love to you and your family too. 🌷

The other thing to mention op is that chemo /cancer treatment changes loads over the years.

I’ve got some relatives whose chemo treatment ten years ago was an all day thing. Get to hospital, have blood test, wait ages, then start drugs etc . They were there from 9-3.

I go in a few days before for my blood test and then just turn up on day and get drugs in then I’m out again. So it only takes 2 hours or so. I don’t know how common my experience is but don’t presume that anything you hear from people will definitely be similar to you!