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.

Wow, I'm really touched by all your responses. Thank you so much. I've got some ideas to go forward with for things that may help. I'm sorry so many of you have been on this journey too.

In answer to PP (sorry, can't quote everyone) I do totally get you about over preparing. I think it's a trying to take control thing, of something that is so out of my control. I think that's why DM set up the list, as she feels very helpless. We only lost my DF last year, and another close family member a few months ago. Both to cancer, both too young. It's been a very hard few years for us as a family 😥

@fourelementary yes, definitely overnight stays, a few days at the start of each cycle. It's escalated BEACOP-DAC, which is very intense. Tbh I would rather stay in hospital at this point so my DD isn't as exposed to the extent of what they say the side effects could be

Currently having treatment to preserve my eggs before this all starts, as they've told me my chances of conceiving naturally after this particular chemo are virtually zero, and I'll be in the menopause. I'm only in my mid thirties. DH and I hoped to be TTC again in the next few months.

While I realise fertility starts to slow down about now, it's been a lot to deal with on top of the cancer diagnosis. More appointments, more heartache when they originally told me I couldn't have it. Luckily, that decision has now been reversed but it's just been a lot, you know?

I had around 6 months in hospital a while ago for extreme cancer treatment.

When I was home I needed an electric blanket heat is such a healer.

In hospital I found I couldn't drink tea or coffee a day so lovely cordials and hot chocolate helped.

Everything tasted dreadful so what you fancy may change week to week.

A soft tooth brush as your mouth will bleed plus mouthwash

To be really blunt and to let you know the worst thing was my bowls stopped working. I ended up with chronic constipation and the pain and damage was awful. The cancer team weren't that interested but if I had know about what preventative and lactulose I would have much happier in my first major round. It was too much on top of everything else.

Don't let anyone minimise this, they give movicol as first response and it's useless.

Take one day at a time, concentrate on the day you are in and not try to focus on the bigger picture. It's overwhelming but you will get better.

I'll be thinking of you

@EvenLess I was thinking of you and remembered one of the best and most significant things my DD did prior to her treatment which was to have her eyebrows microbladed by someone with a very good reputation. TBH I was a bit appalled when she first told me as generally I'm not a fan and I was so concerned about avoiding infection. But I could see her POV and she checked with her Oncology Nurse Specialist who simply said "Go for it! You've just got time" Despite the hair loss, that single thing made such a difference

Thank you, I will definitely bear this in mind. Been having a bit of trouble in this area anyway so am eager not to make things worse!

Thank you, this is definitely something I would like to do if I have time. I have my pre-chemo assessment at the end of the week so should at least have a timeline soon. The thought of having no eyebrows is even more dispiriting than having no hair. At least I've already got some wigs in preparation!

This really made me laugh 🤣 yes, some of the head tilting has been infuriating. I understand that most people are upset for me and trying to be kind, but a few people's reactions have been very strange. Almost infantilising, like I'm a child and not a grown woman with her own mind.

I'm sorry you're facing this, OP. I wish you all the very best for your treatment.

I'm 7 cycles into my chemo, 9 more to go 😬 I totally understand wanting to be prepared, but you don't know how you will feel/be affected. I didn't have time to have my eyebrows microbladed between diagnosis and chemo (they moved really fast!) and I wish I had been able to.

My appetite has been very badly affected, most food tastes either of nothing or absolutely foul, so I cannot recommend anything here. For me, any food I manage to eat is a bonus! My chemo also gives me a very sore and very dry mouth, so M&S sugar free strawberries and cream boiled sweets are a must.

A fully stocked Kindle, so I can escape to another world, and a power bank for my phone, those are my essentials. And Netflix/Disney+/Prime for home.

I initially had a bad reaction to the chemo which the doctors dealt with by dosing me with antihistamines first, and then pumping the chemo in very slowly.

However the body naturally tries to get rid of the chemo, and I became allergic to my own perspiration which brought me out in sores. (Chemo can be really tedious sometimes). But I found that showering and changing sheets and clothes every two or three hours helped. I needed spare PJs and extra sheets.

Once I got past that, my skin reacted to every soap, shampoo, shower gel etc. The only thing I found that I could use was unperfumed soap from Cyril's soap shed which I used for everything for more than a year.

And I developed a sensitivity to processed sugar, which made my tongue & mouth sore, so I ate a lot of wholemeal toast, peanut butter, fruit & cream. .

But I got through and it's all in the distant past now. Wishing you all possible good luck xx

If DD is 5 you may want to consider asking parents to really follow the rules and not send their children to school too poorly. A mum in my sons class was having treatment for nhl and had quite a few issues of infection impacting her treatment. I don’t know the details but once she asked parents this I think her treatment wasn’t delayed again. Think that might not of been chemo but stem cell bit worth thinking about with your young child.

maybe some activities to do with your child when she visits you, crafts or board games depending how you’re feeling?