How do you stay positive? (About to start chemo)

Hi Rosiepose2dde31 and a warm welcome to the board. I see you’ve had a look at the ongoing capox post which is brilliant and I’ll add the link to the top tips post below too

https://community.macmillan.org.uk/cancer_types/bowel-colon-rectum-cancer-forum/f/diagnosis/263084/chemo-top-tips-updated

Its great that you’re exercising and eating well - chemo can be tough but it’s doable and sometimes it’s reputation is worse than the actual experience.

How to stay positive? It’s tricky but time is a great healer and each clear check up will push the fear of a recurrence further back in your mind. Try to focus on the fact that the tumour has been removed and no spread to other organs or tissue is good. Chemo is the belt and braces - I liken it to digging out a dandelion (the tumour)then blasting the soil with weed killer (chemo) in case any clocks have escaped. 

I was diagnosed in 2016 at stage 3 with 2/17 lymph nodes affected - if you click on my name then my profile page will show my timeline - and I’m still ‘no evidence of disease’ as are many others who’ve passed through the board while I’ve been on it.

Please keep posting and we’ll be happy to help and support you through this

Take care

Karen x

Hi. This is so very normal. You know you have  mountains to climb but you will do it. Live your life, love, laugh and enjoy everything. Let yourself grieve and then enjoy life again. Lots of love xx

Hi Rosiepose2dde31 

The thought of chemo is much worse than the reality. 
Take it a day at a time , celebrate the good days and remember the bad days will pass. 
This forum is so supportive use it and you are amongst friends that only have your well-being at heart !! 
You can do this !!!! 
Bx 

Hi,

I also had an extended RHC and needed 8 rounds of CAPOx due to a T4a tumour and 5 nodes affected. I was also told I was high risk or recurrence before I started chemo and it made me feel really hopeless. It’s not what you want to hear. I’ve now done 5 rounds which I never thought I would manage. But I am getting through it and you will too. Chemo has been manageable and I hope it will be the same for you. I’ve tried to eat really healthily and exercise when I feel up to it. Like others have said, I’m hoping in time it will get easier and the fear will lessen. I have also spoken to MacMillan so you could try that. I don’t have any tips as I feel exactly the same as you! But I just wanted to wish you all the best and I think once you start the chemo and begin to see the end in sight, hopefully you will feel a bit better xx

Hi

I had pan proctocolectomy on 1st July with 2 positive lymph nodes. Started capox with the Oxaliplatin last Wednesday and now just finished day 3 of capecitabine. 

I’ve been getting out for walks and have a programme of core exercises to support my iliostomy and neural glides to help head of any peripheral neuropathy if at all possible. 
I have a new routine and try and stick to it for some structure - already each day is my new normal - I track everything as it makes me feel in control and make sure I am taking all meds exactly as advised.

Must admit I was not looking forward to the chemo at all. Really early in my 12 week course but no massive impact so far. I had a bit of tingling in the hand I had infusion in after it, and next morning I experience the cold shock a bit when I touched a door handle. It was very manageable and went in a few mins as my hands warmed up. My hands and feet have had a few red patches but I am using udderley cream and disclofenac to try and head that off.

Not had any nausea so far - which has been a massive relief and my stoma has behaved 

i’m taking it a day at a time, keeping in touch with friends and planning treats and next year - already booked to go to 5 festivals and a music workshop 

I’ve done 1/2 week so just 11 1/2 to go - it’s flown by the first few days - hoping the rest does too 

Hope things will be manageable for you too x

 Rosiepose2dde31 I am in a similar situation but a bit ahead of you. I expected just 6 rounds of chemo but that changed to 12 when I was put in the high risk of it returning category.  I have just completed  my 10th cycle but can’t do anymore - my body won’t take it.  

You simply have to take it one day at a time and know there will be good days and bad days.  Sometimes you’ll feel positive but don’t be hard on yourself when you don’t.  The love and support around you is very important so I hope you have that. You’ll find as time goes on chemo becomes a routine, I used to think of it as a job I hated but had to deal with - obviously not the most positive thought.  

Now I’m at the end of chemo I feel more vulnerable and those high risk words are in my head more often. I have my CT scan next week so it’s an uncertain time and that ‘positive’ word is out the window until I get results. 

it might be a good idea to find out why you’re high risk?  What are the stats on it returning?  Are you taking words out of context or do you have bio markers that show additional evidence to take you out of the normal disease free survival rates? 

Normally 4-6 rounds of chemo is considered enough and, for most stage 3 colorectal cancers chemo and  is just the belt and braces on top of surgery unless there is something else to take into consideration.  

Sorry I’m not more positive about being positive but it’s actually a word that drives me mad. Be what you need to be and don’t feel pressure to be anything other than yourself. 

Lee x

Hi JBUK99.just to say I had the same op as you with the capox and am now 6 yrs on with ned.hang in there ,you will soon be out the other side

Kath

Hia. I can't remember all the terminology as I was in a bit of a state when I saw the oncologist last week. He says there's something in my makeup that makes me more prone to cancer. I am Lynch Syndrome negative though so that's something.

I'll be honest I don't want to know percentages as with how bad my anxiety/depression can get it would just drive me mad if it was a bad percentage. I feel I know enough to be aware and to take the steps I need to on top of chemo to make the chance of recurrence as low as possible.

I'm doing a lot of walking and eating really healthily etc. The rest of it I reckon I can't really control. I just have to keep everything crossed that the chemo destroys anything that's left and it doesn't come back. 

My best friend brought round a chemo survival pack for me yesterday which is brilliant. She went through chemo for breast cancer which I believe is more aggressive than what I'm having so she knows hat it's like and my care pack is just so great and full of all sorts of useful stuff.

I️m still dreading tomorrow but I know it'll be a relief to get the first infusion over with. 

Thank you everyone in here that's posted advice I really do appreciate it xxx

Best of luck for tomorrow. I could have written this post myself re the percentages / anxiety etc. let us know how tomorrow goes - I’m sure you will be ok and you will be relieved when the first infusion is done xxx

Thanks so much. I think regardless of how it affects me I'll just be so relieved when I've got tomorrow over with.

I do know I'll be really well looked after as a few of my friends have had chemo in the same centre.

I'll let you all know tomorrow how I got on xx