New here - recently bowel cancer diagnosis

Hi Roof and a warm welcome to the board. It sounds like everything has happened very fast and is starting to catch up with you now so try to slow down a bit and breathe and focus on the fact that the tumour has been removed and you are now cancer free. As your nurse says, the chemo is the belt and braces and is there to give a final blast to your treatment.

Yes chemo has a poor reputation but often that can be worse than the actual experience? It sounds like you’ll be having capox/xelox which is oxaliplatin in iv form administered at the hospital then capecitabine tablets for 13 days to take at home then a week break and repeat. 
The oxaliplatin is the trickier of the 2 and can have several side effects but they are manageable and there are pills and potions to help with them and, say if one anti-sickness does not work, then ask for a different one? If you’re really struggling then a dosage reduction can make all the difference. 

The main thing is to go in with an open mind as everyone’s experience can be different? Some people struggle with fatigue and need to rest - I was lucky and I carried on working at my part-time office job. Give it a go and see how you get on? 

I’ve attached a couple of links to a post we did about chemo top tips and also a really good post that a few people going through chemo chatted on?

 CAPOX JOURNEY

 CHEMO TOP TIPS UPDATED

Hope you’re coping with your stoma ok? There’s lots of support on the stoma board if you need any advice 

 Ileostomy, colostomy, urostomy and any other stoma support 

Lastly I’ve attached a link to a really good paper about What to do once your treatments finished and how to cope with your emotions? It’s maybe a bit early for this yet but have a read through then you can always come back to it?

www.workingwithcancer.co.uk/.../After-the-treatment-finishes-then-what.pdf

Sorry about all the links - hope it’s not too much! I was diagnosed at stage 3 with 2/17 lymph nodes affected in 2016 (if you click on peoples names then their profile page may show their treatment to date) as were the 2 ladies I became good friends with during my treatment. We’re all still no evidence of disease as are many others who have passed through the board and are now getting on with their lives. The next few months will be tough but tick each session off as you go and plan something nice for your week off.

Take care and feel free to ask about anything at all and we’ll try and give you helpful honest answers.

Karen x

Hi Roof,

Welcome here.

I was diagnosed when I was 50. Not from a FIT test but an unpleasant symptom. (Needed to go all the time, painfully). I didn't need surgery right away as mine was not causing blockages, although it was talked about. They decided to start chemo and see if tumor backs off first. They prefer it that way, then operate.

My chemo involved a 2-3hr drip followed by three weeks of tablets and a week off. Then start again. 4 cycles of that. Then radio/chemo therapy, same cycles, except every day up to hospital for radio therapy and keep munching the pills. 12 weeks later when finished and recovered from therapies, I had surgery, low anterior resection with temp stoma. Got stoma reversed after they were happy the resection had healed.

For me the worst bit was the surgery,but by the sounds of things you've already had that. Chemo wise it was a grind as you need to attend appointments and stuff, but found I was able to work through it with flexibility from my employers to meet appointments etc. After a year I was clear and have been for 13 years now.

I think the surgery as I said was the scary bit for me, more because it was scheduled and I had time to think and worry about it. With yourself it was just done, I probably would have preferred that. This type of cancer is a curable one, so just plod on through the treatment, and youll be back almost normal in about a year and you can get on with life.

Hope this helps

CraigO

Hi, I have the same, I’m still waiting for therapy but having my planning scan on 27th. 5 weeks of chemo tablets and radiotherapy then 3 month wait (yes it’s all about the waiting)! Then will know if I have to have the surgery 

Thank you. I feel much better for reading this. No, I had very littke time to think about any of it! I have been processing it all since I came round from surgery!  

The chemo scares me because I have had time to think and worry! Although there are some excellent tips on here. 

Do yiu or did you have a stoma?

Hi Roof,

Yeah, had stoma about 6 months. Worked with it though. Was field engineer, went out with it and managed ok. There were a couple of embarrassingly smelly leaks but apart from that was ok.

You'll get through pal.

As far as chemo goes, if you're having the 2 hour drip, ask for a picc line. You will thank me.

C

A few people gave said that x Thank you. Was your stoma 'activity' affected by the chemo?

Hey there Ruth sorry to hear your having to be here too I’m nearly same had bad abdominal pains in A&E anyway ended up needing emergency obstruction bowel surgery it was so scary found that I have bowel cancer the tumour was blocking my bowel up so 60 per cent of my large bowel removed and reattached woke up no stoma bag which I’m told is amazing now waiting for chemo first needing another thorax ct scan as before I had inflammation there so they need to check it again no spread to my liver said checked all that so just letting you know it’s terrifying and your not alone trust me I wish you the very best with this journey and anytime you wanna talk even just to chat vent whatever I’m here ok good luck in my thoughts Bettyboop

Forgot to say I was 49 when I was told I turned 50 a few days ago

All my chemo and stuff was done before my ops. So I can't answer that one.

One of the chemo side effects was the runs which was controlled with loperamide(imodium) you might want to make sure you've got plenty bags on hand for that. I'm sure the stoma nurses can advise. 

Actually, having a working back end during chemo and radio was a bit of a challenge. You might have dodged the bullet on that one.

C

I'lll take that as a protein then! Every cloud!