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Beating Bowel Cancer Community

Bowel cancer treatment and side effects

Neill H

First Chemo Cycle

So I've just done the first 5 hours in hospital and now at home with my own pump for the next 46 hours.
Given that I'm only 10% of the way through this first cycle, I wanted to check on people's experience of tiredness.
I was expecting to be tired but it's hit me like a truck and just seems like it's a bit early to feel this drained.
Is that normal , maybe amplified because it's first time round.
Or do I need to 'man up' a bit.
I did have the PICC line put in this morning so technically I was in hospital for 10 hours in total.
I think that I might always have higher expectations than are realistic so just wanted to sense check with people who have direct experience.
Cheers
Neill

Liriodendron345

@Neill H, I love the thinking that the enemy of the enemy is a friend! Am not sure I ever aspired to being a FOLFIRI and Cetuximab leader @Baxter2! I am also sure that there is someone else on the Forum who has had the same treatment for 3 years? It is good having you as a Chemo buddy though!
Good luck @Neill H and let us know how you get on, Kim :x:

kidsversuscopy

Chemo hit me like a train as well. I had to spend the first ten days of each cycle in bed, I tell no lie! Couldn't move. Completely bed-bound. Post-chemo I've bounced back pretty well and I think getting back to the gym has helped loads. I try to go every day now for 30 minutes for that little boost of energy! Cx

Baxter2

Yup @Liriodendron345 I’m following your lead and positivity for sure!

Oh Gosh @kidsversuscopy! That must have been just awful!! It just goes to show that the side effects are so varied in us all despite similar chemo regimes!

I got your book for my iPad and as I have the attention span of a goldfish, I’ve only managed chapter one! I’ll save it for my rubbish days next week. Today, it’s the upstairs windows (to enable me to see out of them once again lol!) Taking advantage of steroids haha!

Hope everyone has a good enough day!

K💚💜💙💛❤️

1234annie

Yeah you need to man up @Neill H 🤣.....no only joking!! Sounds like your on Folfox like me?? I found the pump made me feel exhaused so I would take myself off to bed. After sleeps I found I felt better, I seemed to manage ok till round 6 and it got a bit harder and took longer to recover but all in all it was ok and they stopped oxy after the 8th and all stopped after the 11th. Take it easy and listen to your body. :x:

CalmOnTheOutside

Hi @Neill H well I've just come out of the other end of my chemo, after 5 months, and to be honest it's not the world's most fun experience, even at the best of times. You get to know how your body reacts, and once you can build a routine around it - even if that routine consists of spending 3 days on the sofa under the duvet - then that helps.

There is an end to it, and there is a point to it as well, so although some of the suffering on the way is (as far as I can tell) entirely arbitrary, for example when they discover that the meds haven't been made up by the pharmacy, so oh could you just pop in another day for them if you don't want to hang around here for four hours while they get sorted, yes I know it's 45 minutes drive each way for you but that's ok isn't it - but at least it is FOR something! It is all aimed at making you better. I tried to think of it as attaching the cancer cells, and what it was doing to me was just collateral damage, and nothing to what the pesky cancer was being subjected to.

Mind you I was one of the lucky ones and didn't suffer too badly - having a PICC line seems to help, as @deedeedokey 's ghastly experience with a cannula testifies. For me, it was rather like 3 days with a bad hangover, although without the headache. I felt tired and rubbish, but without a specific, quantifiable, thing to attach it to (other than the tube disappearing into my bicep).

I hope you find a way to get into a routine. Hang on to that, and the nuking the cancer is getting. Other than that - duvet and cake. Only way to go.

Neill H

Duvet and Cake. Now there is a title for a book if ever I saw one.
That is the sort of self help I can get on board with!

Lupin

Great to read everyone's experience. Hubby had his Picc line in yesterday and starts Oxaliplatin on Tuesday with other tablets to take at home. I will be shown how to flush the line so that I can do that at home. It is so good to have company as we or our loved ones go through this :x:

deedeedokey

Why am I feeling sorry for myself today @Lupin,Neill @1234annie@baxter2@polly1@Gavin and all who are still up and reading sad stuff at 11.25 at night

I am obsessed, with my nails, they have flaked off bummer, what will people think, they will think something is wrong with me, as I never look less than perfect Lol.well that is what is going through my head right now, can you believe it! I went out and spent a fortune on rubbish to help my nails, but think I should just get some false ones, it will stop all this anguish I feel I am going through, over NOTHING. I should be thinking of Chemo one, out of the way, taking my tablets, though managed to get my dose of steroids wrong, leave it to me to not read the box properly. No wonder I have not had any energy, my lovely partner took me out for a lovely lunch today and I ate lots of calories, ( which I need right now) and still feel like rubbish, I only lasted an hour out and ran out of steam, it must be so hard for partners who have to live with us as we live with this, sitting downstairs most nights alone, as I don’t have the engergy to stay up, I haven’t dressed up in the last month, sticking to comfy clothes when I am in the house, which is most days now. I’m in bed eating Thornton’s chocolate toffees now!!!
I just decided to read all the bumph regarding bowel cancer. Everything that has been given to me, or sent by my doctors etc, why have I left it so long. I am already counting down to my next round, and I am beating myself up already, afraid it will hurt like the first time round, and I am so tough, normally, but this is not normal is it.
My dogs are acting strange around me too, it’s not my nails though, Lol. My little poodle follows me around crying even when I am just in the loo, she won’t leave my side, she is cuddled up beside me here in bed, next to my pillow, my top dog, has tried to bite me a couple of times, for no apparent reason, though tonight he has been on my knee all evening giving me the love, like he is trying to say sorry, strange behaviour. Is it their strange behaviour or is it mine, cause and effect and all that.
I am sorry to throw this out to all you amazing, strong, special people, but I am fighting a bit of a fight with myself today.
I feel sorry now I have written this, but the effort of deleting is too much for me, is there anybody out there ............ dx

Baxter2

Good morning @deedeedokey

I’m sorry I wasn’t awake to respond to your post last night but if I’m not on a steroid day, I’m pretty much tired out by 10 at the very latest!

You are absolutely right to put your thoughts and observations down on ‘paper’! It’s very cathartic and something I do now and again. Many of us have noticed that our dogs are very perceptive and noticed stranger behaviour in them towards us. Mine were never far from my side. I have only one now and she has cancer too so we’re chemo buddies now lol! On the day I have chemo (like you, lucky to have it at home!) she lies by my side the whole day and will hardly go out to the garden even!

Munching Thornton’s choc toffees in bed?? I like your style! That’s the kind of thing I’d do too. I hope today is a little brighter for you. Get up, dust yourself down, get these nails all done all ready to face the brand new day! I’ve felt a bit rubbish last couple of days (the known steroid crash) so I’m looking forward to feeling more like myself today! Let’s do this together!

Lots of love and a big hug,

K💚💜💙💛❤️

jinnyp

Hello @deedeedokey - sorry you have had a wakeful time - I had chemo on Friday so steroids have finished but I messed up with them after two sleepless nights with anxious 17 year olds!!

My nails are a mess too - i’m on cetuximab which seems to give me ingrown fingernails and they are flaking and splitting which means they are about 1mm long and look rubbish! Feels silly to be bugged by nails but I am!! I used to put wraps on them which helped stop them breaking a bit - might try that again or some gel polish - can’t look worse than they do now 😂 Random things that bug me and seem superficial often go through my head in the middle of the night - it’s good to write them down - if I do that sometimes I screw them up or bin them the next day - helps sometimes (although not always - my nails are still crap 😂)

Chemo is tough, some have more side effects than others - I think I manage them better now i’ve had 7 but there are days when I just can’t face anything or anyone and all efforts made by others just get on my nerves. Ungrateful or what but think/hope they understand.

My little dog steers clear of me when my pump is connected but as soon as it’s gone she is affectionate and her usual self again, I don’t think there is any doubt that she senses something is different/wrong.

Your chemo experience sounds horrible although having it at home has some appeal!! Have you not been offered a PICC line - i’m not sure I could manage mine without it.

Hope you have a better day today - you’v motivated me to do my nails!!!

Hugs to you :x::x::x:

deedeedokey

@jinnyp @Baxter2
You both need a medal for your kind responses, and tak8ng the time to actually read what I wrote, I was just annoyed with myself. I’m back in bed today-to try and catch up on lost sleep, hopefully a few hours will give me a more restful night tonight, and I’ve been to GP this morning, who new nothing, but has given me a sedative to use. Will run it past my Chemo nurse when she rings me sometime today, I am sure I’m having a blip, I just want to be normal but that’s never going to be ever again, for any of us. Have got my little book of Mindfulness next to my bed, to glance at and try meditation, ( has anyone tried that)? I feel a great warmth towards
you both/all, thank you again for taking the time, which is prescious now, to listen to my rantings, I honour you all and hope I can be of similar help if needed.
I owe you one, ‘ one for all and all for one’ famous quote Lol D :x:

deedeedokey

@Baxter2

you are there for everyone Baxter your very special Dx

Baxter2

Thank you @deedeedokey but I’m not special at all. If I can help anyone in any small way, it’s worth it and probably adds to my sense of purpose in a way?

I’ve had massive support on here over the last 2 and a half years and don’t know where I’d be without it! It’s been invaluable.

You’re sounding a bit better this morning and I hope you can get some rest today.

Lots of love,

Karen 💚💜💙💛❤️

Wren17

Hi @Niell H , well done on starting and managing your first chemo. I ended up hospitalised after each of my first three chemo cycles so there definitely isn’t anything to ‘man up to’. Im on cycle 13 of an ongoing regime and im hoping the chemo can be my friend too.
Hi @deedeedokey , i concur with you that @Baxter2 and @jinnyp are amazing in the support they give :x::x::x::x:

jinnyp

@deedeedokey, no medals needed here - I can’t often speak from experience as I am a relative newbie compared to many on here but sometimes if I can help a little I try to - glad you are back in bed, catch up all you can 😄
I use Nytol tablets when I am having the steroids - doesn’t give me a full nights sleep but loads better than the early days sitting up all night with crazy thoughts rushing round my head!

I’m trying to find a new ‘normal’ but struggle sometimes to take the pressure off myself to be the same as I was before all this.

Have a good day, sleep, stay warm, do your nails if you fancy it.
Take care, Jane :x::x:

jinnyp

@Neill H - well done on the first chemo - hope you are feeling a bit less tired now and getting used to your PICC line? Did they give you a sleeve to cover it in the shower?
Good that your district nurse can come and disconnect you too!
I had 6 cycles of Folfox with cetuximab added on cycle 3 with good results - chemo is my friend (although sometimes a bit toxic 😄) - I see it as having a load of little pac-men running around munching the baddies - works for me 😂
Looking forward to reading your book ‘Duvet and Cake’ when it’s out!
Take care
Jane :x::x::x:

deedeedokey

Hi Karen
Up and about now had some lunch feeling brighter I now have my granddaughter here for couple hours and you just have to be happy in front of children or they worry, you are special we all are. It’s means so much

Dee x

Quote from @Baxter2:
Thank you @deedeedokey but I’m not special at all. If I can help anyone in any small way, it’s worth it and probably adds to my sense of purpose in a way?

I’ve had massive support on here over the last 2 and a half years and don’t know where I’d be without it! It’s been invaluable.

You’re sounding a bit better this morning and I hope you can get some rest today.

Lots of love,

Karen 💚💜💙💛❤️

deedeedokey

Hi Jane, I have got some sedatives from gp
But might try Nytol first, I was only given a few days worth of steroids and managed to get the dose wrong anyway, wonder if I will get more on round 2?? Il read the box better next time,
Nails done TV on about to read the newspaper, little things eh.

Thank you so much
Dee xx

quote]Quote from @jinnyp:
@deedeedokey, no medals needed here - I can’t often speak from experience as I am a relative newbie compared to many on here but sometimes if I can help a little I try to - glad you are back in bed, catch up all you can 😄
I use Nytol tablets when I am having the steroids - doesn’t give me a full nights sleep but loads better than the early days sitting up all night with crazy thoughts rushing round my head!

I’m trying to find a new ‘normal’ but struggle sometimes to take the pressure off myself to be the same as I was before all this.

Have a good day, sleep, stay warm, do your nails if you fancy it.
Take care, Jane[/quote]

Baxter2

@deedeedokey
There’s nothing like grandchild therapy to sort you out is there? I’ve had my 16 month old grandson all morning and he’s just away now.......phew! Glad to hear the nails are done too! Got to keep up the standards you know! 😉

K💚💜💙💛❤️

jinnyp

I get 3 days of steroids and 5 days of domperidone to take after each cycle so imagine you will too. I often mess mine up - more by forgetting them than by taking the wrong dose but they do help I think!
Have a good afternoon- I'm off to hosp for review!
Take care :x::x::x:

[quote]Quote from @deedeedokey:
Hi Jane, I have got some sedatives from gp
But might try Nytol first, I was only given a few days worth of steroids and managed to get the dose wrong anyway, wonder if I will get more on round 2?? Il read the box better next time,
Nails done TV on about to read the newspaper, little things eh.

Thank you so much
Dee :x::x: