Bowel cancer treatment and side effects

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MysticLooRoll

Chemo - what you wish you had known (updated 2/12/21 to include helpful hints)

Hi. 42 year old and diagnosed with Stage T3N1M0 BC in July. Bit of a whirlwind since - had a right hemicolectomy in August and healing well. Docs now want me to start CAPOX chemo in the next few weeks (4 cycles over 3 months) to stop the cancer coming back.

Not going to lie. Pretty worried about chemo, the possible side effects and how it will make me feel. I could really do with some practical advice - hints and tips on things you wish you had known before starting chemo, anything that was really helpful, stuff to avoid? I know there will be stuff I can’t control (which is really difficult for me) but figure if anyone can pass on some practical wisdom and hints/good advice, it will be you guys! Did look at the chemo section of the BC website already 😊🤞
Thanks in advance

MysticLooRoll

@Ali - no worries. I remember having all these questions and worries about chemo when I was starting, so thought a follow up would be good for anyone else about to go through it/having it now. And I felt daft phoning the Helpline but they were so nice and reassuring - they honestly said they wished people would phone more often if something is bothering them - saves a lot of potential extra hassle later on.
Ah yes, brain fog. If I had a pound for every spell of the fog it would be at least a fiver today 🤣 It is getting better, but I do wonder at times if it is chemo or just old age (I’m 42!)…!!

All the best with you :x::x:

Forum user

How did you get on with your search @The Blue RSM :x::x:

Quote from @The Blue RSM:
@Molly2me, it’s not gone to well so far and Monday is the start of my 4th cycle. So far they’ve got gradually worse.
I’ll search the site for other TOMOX.

stevejl

Hi @MysticLooRoll may I compliment you on your summary above which will be a great aid to those starting chemo.Inspiring as usual now if only chemo farts could smell like roses on a warm summers day lol:o
Take care
:x::x::x::x:

MysticLooRoll

@stevejl - thanks. Just thinking of what would help others and maybe save some questions for them along the way. I know I had lots of worries and questions before chemo started.
And as for the chemo farts - if only! 🤣
Have a great weekend and take care :x:

Forum user

@stevejl and @MysticLooRoll there is nothing like a dose of toilet humour to get you through chemo, keep rocking peeps, your cracking me up - no pun intended 😂

MysticLooRoll

@Molly2me well if you can’t have toilet humour on the BC website then where can you? 😉

Baxter2

@MysticLooRoll

Talking of toilet humour, I couldn't resist sorting an 'elf on the shelf' antic on Friday night when we were babysitting for two of our little grandsons on Friday evening. It involved a naughty elf sitting on the downstairs loo windowsill wrapped in toilet paper which draped down and across to the loo roll holder. Obviously, I had to add some Branston pickle for special effect! Apparently in the morning Harry (5) refused to use the loo and went to upstairs one instead! Immature Grandma!! 😂

Lots of love,

Karen 💜❤️💛💙💚

stevejl

@Baxter2 hilarious ;D.Did you use smooth branston or chunky:o?
Take care
:x::x::x::x:

hetty

I love this 😂😂🥰 love Hetty :x:

Quote from @Baxter2:
@MysticLooRoll

Talking of toilet humour, I couldn't resist sorting an 'elf on the shelf' antic on Friday night when we were babysitting for two of our little grandsons on Friday evening. It involved a naughty elf sitting on the downstairs loo windowsill wrapped in toilet paper which draped down and across to the loo roll holder. Obviously, I had to add some Branston pickle for special effect! Apparently in the morning Harry (5) refused to use the loo and went to upstairs one instead! Immature Grandma!! 😂

Lots of love,

Karen 💜❤️💛💙💚

Baxter2

Why chunky of course! 🤣🤣🤣

positivepaul

@MysticLooRoll thanks for this...i have been diagnosed with exactly the same BC as you recently and have already had the surgery. I found out this week that they want me to start capox in Jan and although i am feeling positive about the treatment ahead i slight worry is decending over me about the side effects especially as google can make your mind spiral. Im really concerned on how the side effects will cause a disruption to daily life, a week after my diagnosis my partner gave birth to our second child and i am worried that the chemo will put added pressure on my partner to look after our two young kids. Has anyone got advice on what you can do beforehand to try and limit the side effects or likelihood of getting them? The hand tingling, brain fog/chemo brain and fatigue worry me the most...sorry for the ramble. Any advice would be great and wishing everyone well!

Wegwe

@positivepaul congratulations on the birth of your second child. I find it hard to imagine what it must be like to be diagnosed with BC just before the birth of a child.
I don’t know if he still visits the forum, but @bartoni79 recently had chemo with a newborn in his household, and started a thread about it that may be helpful. I don’t think there is very much you can do to reduce side effects, except take the anti sickness medication you will be given. There is some evidence that exercise focusing on limiting loss of muscle mass may have some effect, but no proof. I found that it did help me clear my head.

positivepaul

@Wegwe dank je wel for the quick reply. It has been a whirlwind but i count myself lucky because my daughter, son and partner are healthly and my cancer was spotted quite early. What tyoe of exercise did you do to limit muscle mass loss....weights in general?

Wegwe

@positivepaul I followed a programme (mostly weights) set up by a physiotherapist because I didn’t want to do anything I shouldn’t have been doing while still recovering from surgery. In the second and third weeks of the cycles I also swam and ran (very short distances). For me that worked.

MysticLooRoll

@positivepaul - I wish there was a way to limit side effects/likelihood of getting them… I can only share the small tips that that have helped me. I did try and put some hints in my post of 2nd Dec - you may want to read that.
- General all round good tip - hydrate as much as you can. CAPOX is nasty stuff and keeping hydrated will help flush the crap out. Bear in mind, the drinks you will be able to take may be limited (if you are cold sensitive) so try and keep a variety going on, to stop you getting bored of plain water.
-Cold sensitivity - have a hot water bottle/heat pad available at home for your infusion arm/any other areas that may suffer. It helps ease any really bad pain and is generally just nice to have around. A pair of gloves for touching fridges, freezers, general metal/areas that are really cold in the house to touch is essential and make sure you are warmly wrapped up when going outside (hat, gloves, scarf/warm layers). Run the tap before you put your hands under water - let it warm up first! There is nothing funny about having your hands go into cold shock and it can hurt. Some people get cold sensitivity in their throats when going outside. To counteract that, I keep a small bottle/flask of something hot to drink in my bag when I go out for walks or anything that took me outside for an extended period. Drink something hot and it will ease.
- Take your anti-sickness and anti-diarrhoea tablets as soon as you have any problems on those fronts. Don’t delay. Nip any issues in the bud, and call the Cancer Treatment Helpline/your specialist nurse team if things don’t improve. They need to know.
- Brain fog/chemo brain - keep to as much of a regular routine as you can and lists if you think you may forget stuff. My brain fog literally just involves words and naming people. I forget them for an hour or two, then they come back. Try not to stress. It happens and anything important comes back!
- Some people struggle with eating, so have a bunch of easy snacks/small meals available for when you are not hugely hungry or are struggling with bigger meals. Make sure you read the list of high risk foods to avoid (shellfish, undercooked meats, soft cheeses and unpasteurised items mainly) so you don’t make yourself unwell.

Think that’s it for now. Sure others will have ideas or tips I have not thought of. Hope this helps and wish you all the best for when you start in Jan.

MLR

bartoni79

@positivepaul:
The new born was tricky as it took me ages to get over the op, so my wife took the brunt. Then once in chemo I used latex gloves as an added precaution when handling baby. Part of the reason was it being summer and I was trying to be double careful and prevent transfer of chemo through my sweat. Now in winter that’s not an issue. I also slept in a different room after the Oxy infusion fir a few days which was fortuitous as embarrassingly I wet the bed on one occasion so thankfully it’s only gone into a single mattress I’m using and not our family bed. I think that’s a side effect of dexamethasone. I was on CAPOX but had a bad reaction leading to my digestive system shutting down so I’ve moved to FOLFOX but still getting bad diarrhoea and stomach pain. 7/23 cycles in so just have to suck it up! I think just try abd sleep where you can. Even 45 mins gives me energy back!

Beth21

This thread has been so useful, thank you! My husband is due to start chemo next week and is extremely nervous. I’ve been gathering whatever supplies I can to help ease side effects!

MysticLooRoll

@Beth21 - Glad this thread has been a help to you. There is also a caregivers forum on the site you may find useful, so they may have other tips to help you and your hubby. Wishing your hubby all the best when he does start chemo. :x::x: