Newly diagnosed and non curative

Really sorry to hear about your recent diagnosis. It’s tough to see surgery slide off the table however it’s certainly not without hope . If you click on my user name you can read my mum’s story navigating a difficult diagnosis. Going straight to chemo actually was a good plan . Not only did it give the opportunity to gain some hopeful shrinkage but it can also set about reigning in any micro disease . 
The oncologist said to my mum chemo roughly falls into three groups of side effects . The first hardly experience any , the second have mild / moderate but manageable with other interventions or adjustments and the last group have it tough! However even then there are interventions that help manage these  side effects . My mum was picked up on a bowel screen with absolutely no symptoms and fell firmly in the last group . She got better at communicating and trusting her team and the second year she was able to have her dose of chemo adjusted and made the world of difference. She had reactionary lymph nodes around her bowel tumour but after chemo there was no evidence of any live cancer cells . 
She did have a bit of a rough time some days  , however some cycles were actually quite straight forward! It did not follow the accumulation pattern we expected in her ! Everyone is different. However she did get better at managing it . You will see people on chemo for years and still living a good quality of life !

Talking to your team and seeking help early gives them the chance to act on side effects .

Dehydration was a difficult one for my mum but she learnt to take small sips often and stop issues building up !

Daily walks can be helpful too!

I would say the unknown was difficult but we all got into a routine ! My dad had a stroke two weeks before so it was easier for me to keep an eye on both their needs by moving them in for six months . Gave her a break from cooking and she loved the grandchildren bring around . Still does but they are all twelve years older ! So it was worth facing and did push the boundaries and gave her more time .

We are also here to help support you as you go go through this . Lots of tips on here !

The prognosis talk is a really hard one so my mum skipped it but we were informed and had a good read around ! However she is still here and recently got discharged. We did not expect that so there is some hope . 
Take care ,

Court 

Court thank you for sharing your mum's story and so good to hear she is doing well.

Hi Sheba 123,

So sorry to hear of your diagnosis. You asked if someone has had the same chemo and the answer is loads of people have CAPOX and I had four sessions after my surgery. If you read all the possible side effects it is scary but the chances of you having all of them is slim. There are effects that come straight after the infusion and then others with the capecitabine. I had mine during the winter and the main ones were cold affecting my fingers if I touched something cold or my throat if I drank something cold, so drinks want to be at room temperature. This normally wore off in time for the next session. It can affect your hands and feet with peripheral neuropathy but this wears off. It will make you tired but I found a quick kip in the afternoon was all I needed. If it upset my output it was dealt with by loperamide and my oncologist gave me a mouth wash in case it affected my mouth.

Not everybody is affected in the same way and it sounds as if the treatment is a good plan for you to try to get the cancer under control.

I do hope it is successful for you, with best wishes, John

Thank you Crankshaft for your really helpful message. It’s good to know that not all the side effects happen to people. It’s very encouraging. Best wishes to you and thanks again for your help.

Something else that I forgot to mention. Depending on how many sessions they are suggesting have they mentioned having a PICC line. This is a line for the i/v left in your arm for the duration. It is a simple procedure and avoids having a canula every time you have i/v. With a canula you can have a painful arm during and after the i/v. Blood tests can also be taken from the PICC line, so less needles! Most people who have posted about it, me included have considered it a benefit.

Also, the Oncologist will monitor your progress, you get blood tests before each i/v, and they will react to any side effects that cause you excessive reactions.

All the best, John

Crankshast They did mention me having a picc line but I thought it might be uncomfortable having it in all the time. Your comments about it are reassuring though. Thank you