First Chemo last week.

Hey Zara,

im in a similar(ish) position to you. Couple of years younger and similar aged kids. But my chemo is pre-op and a different drug combo. Everyone reacts differently but it’s likely that it had the benefit of not having just been through a major operation. I’m two cycles into six and due to start cycle three on Friday. 

anyway, lots of people on here know a lot more about chemo than I do but I thought I’d share my top-5 things I’ve learnt so far. 

1. Talk to your nurses and the chemo hotline. I’ve been super lucky with side effects so far but I check in regularly with them and tell them exactly how I am. Any issues and they’ve been able to help. The check ins have also helped manage my anxiety. I’ve called instead of sitting at home worrying. 

2. I got an app a cancer survivor friend recommended. I use Vine Health but I’m sure there are others. This makes it really easy to track timetables for pills and recording side effects etc. 

3. Listen to your body. At first when everyone told me this I didn’t get it and found it a bit cliches and annoying. But now I get it. I think. If I’m tired I rest. If I’m full of beans I exercise. This has really helped compared to first cycle when I laughed myself way too hard and suffered because of it. 

4. Take it one bit at a time. Another recommendation from friends who’ve lived with and past cancer. Focus on each chode as it’s own thing. Find a way to mark the end of each cycle. A friend bought herself a cuddly toy fox at the end of each of her cycles of folfox. Just a small thing to remind yourself you can do it. 

5. Remember all the people who support you. When I got diagnosed I asked people to send artwork or pictures they made themselves. I’ve got a little corner of the bedroom with all the cards and pictures and stuff people sent through. When I’ve had really tough early cycle days I can lie in bed and see it and know I’m not alone. 

I don’t know if any of that is helpful but it’s made life easier for me. Others will probably have loads of great suggestions. 

is there any aspect in particular you’re struggling with?

Hi Zara and a warm welcome to the board from me. Yes chemo isn’t very nice but very good at zapping anything that might be lurking after surgery. On the bowel cancer uk board they used to refer to oxaliplatin as ‘poxy oxy’ until one of the guys said that is was a negative concept and we should view chemo as our friend - tricky at times!

Hopefully the nausea and tingling is subsiding a bit now. If you’re struggling with the nausea then please tell the nurses - there are lots of antisickness tablets available and they tend to start you on the cheapest so a change can make all the difference. I tried to view the capecitabine as vitamin tablets! Hopefully you’ll feel a lot better on your week off so you plan something nice for those days and also tick off the cycle 1 completed box!

Ive attached a link to a post that we have on chemo top tips which may help and please feel free to add to it?

https://community.macmillan.org.uk/cancer_types/bowel-colon-rectum-cancer-forum/f/bowel-colon-rectum-cancer-forum/221768/chemo-care-top-tips--/1598153#1598153

Keep posting and we’ll help get you through this

Take care

Karen x

Hi Zara, I had my first iv of Capox last Friday and on the chemo tablets, I feel overwhelmed with it al. I’m al lot older than you and my heart goes out t o someone so young. Sending hugs xx

Thanks for the reply, those are great tips. I will definitely ask for a better anti sickness tablets as they only gave me Domperidone.  I’m trying to stay really warm but hand pain/needles haven’t gone away yet. The nausea is very regular and puts me off food too. Diarrhoea kicked in 4th day with chemo tablets, Imodium helped a little but very gassy with tummy aches. It’s definitely not a nice feeling, I still have many chemos to go through. With everyone’s help and encouragement I hope to do my best. X

Hi there, I really hope you feel better each time, it’s my first too and I’m trying to stay positive yet very worried. I can’t believe I was suddenly diagnosed this, never had any health issues. Xxx

Hi, great to hear your experience. I like your ideas, I do appreciate the help I’ve received since my diagnosis and operation. All of sudden people opened up of what they had gone through. It’s definitely a tiring journey for me since everything happened so quickly. I hope the Chemo finishes quickly too, it’s a scary experience and very tiring from my first one already. My main concern at the moment is the nausea and tummy aches/gas. Also I hate swallowing those chemo tablets. X