Am i really ready?

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Hi All

ok so having found my Side Effect for cycle 1 on Capecitabine was not a side effect at all but an infection, i am feeling more confident.

i find myself eager for the next blood test to see if i can start cycle 2. but yet i fell its a bit strange that i feel this way especially with being scared of needles

I mean after 9 days of severe diarrhoea i sort of feel that i can deal with what ever chemo can throw at me. i dont know if this is a right way? a good way? or arose tinted spectacles way of looking at things. Am i setting myself up for a fall?

I guess with it still being early days for me i am still not sure what to think or expect. I find the mental side of things the hardest to cope with and i have always been a person who prefers to do things well informed with my eyes wide open rather than peering into the gloom of the unknown

i get that we all deal with things in our own ways and maybe there is no completely right or wrong way, but i al looking to find ways to stop my mind running off into the distance screaming for mercy or thinking its going to be a breeze when its really just the eye of the storm

Maybe i am just over thinking in general. here there in no one to sit and have a chin wag with and with in most cases no or little in the way of English language i feel a bit out of it. i have asked my oncologist and i think she is trying to placate me and just keeps saying i will be fine or maybe with maybe not the best language skills she just does not get where i am coning from.

any words of wisdom from experience for me please? i am already dreading my birthday and christmas as i will be in cycle 3 for both

i just want to handle things in a better way and be able to get my head in order more

Thanks in advance

latchbrook 25 days ago

Hi JohnG6489ba57

I’m Anne, one of the Community Champions here on the Online Community and, although I'm not a member of this group, I noticed that your post hadn't had any replies yet. Responding to you will 'bump' it back to the top of the discussion list again.

While you're waiting for replies, it would be great if you could put something about your diagnosis and treatment into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

"Never regret a day in your life, good days give you happiness, bad days give you experience"

Kareno62 25 days ago

Hi JohnG6489ba57 Yes it’s me again! To be honest capecitabine on its own is really quite doable - it’s when the iv oxaliplatin is added that some of the more severe side effects can kick in. Sometimes the reputation of chemo can be worse than the actual experience so keeping an open mind is fine. It’s hard to predict how you’ll feel after your next cycle but if you feel ok then that’s great - it’s not necessarily the lull before the storm.

I had capox which is oxaliplatin on day one then 13 days capecitabine. The oxaliplatin was the unpleasant one but after that I pretended the capecitabine were vitamin tablets. I continued to work at my part time office job and even had a few drinks on a weekend - I tried to carry on as normal as I could - that was my way of dealing with it. I appreciate that I was maybe one of the lucky ones and others have had much worse side effects but don’t spend your days waiting for the other shoe to drop as it might not!

So there’s no right or wring way of dealing with it - search for knowledge, stick your head in the sand, just go 1 day at a time - whatever works for you?

Hope your bloods are ok for the next cycle

Take care

Karen x

Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

JohnG6489ba57 25 days ago in reply to latchbrook

Thanks. I have actually done that before but for some reason it got blanked out. Looks like when I have time I will have to do it again. Thanks again

Hi they found the issue and it's not side effect related instead it's an infection of the stomach lining. Should be home in a few days and second cycle hopefully in a week or 2. Thanks for the kind wishes and support it means the world to me

JohnG6489ba57 25 days ago in reply to Kareno62

Thanks the biggest side effect I have is hand foot syndrome. Fingertips are the worst, but even that is livable with. I have to say the biggest problem is actually my brain I over think and worry about what might not happen. I am of the mindset that I will get past this just sometimes it's like my head just wants to fight itself. In the past 5 years I have lost 3 to this although different forms to me. And currently I know of 2 more having treatment so maybe it's a combination of those things that give me the brain in a blender feeling.

Bloods should be fine as last week the red and white cell results were good just my oncologist wanted me to stop living in the toilet before cycle 2.

Sorry stupid humour is my defence position

Thanks for your help as always