Bowel cancer

Hello Lindsay.  I was also diagnosed last year at the end of June.  My treatment is also palliative.  I have had eleven fortnightly infusions of Oxiplatin plus Cetuximab and 5fu.  Like you I have found it extremely difficult to times to keep going mainly due to the side effects of treatment.  I have found that speaking to the chemo doctor about side effects useful and have had the dosage of Oxiplatin reduced by 20 per cent.  I have also been given various medications for skin issues and mouth ulcers etc.  I am intending to access counselling once I have completed my next (and last) infusion of chemo next week to help with the emotional aspects of having an incurable cancer.

Hi Ola and a warm welcome to the board. Yes oxaliplatin is tough but you’ve had some great advice from Squarebox. There’s also lots of tips that people have posted in the link below 

 CHEMO TOP TIPS UPDATED

Please give the support desk a ring? There’s lots of support available and they can check to see what you have locally and there’s also a Macmillan Buddy scheme. 

Take care

Karen x

Thankyou so much xx

I tried counselling it was helpful to start with gave me Lots of breathing exercises and self hypnosis but now I’m going to go to a support group near to where I live.

ive been in and out of hospital many times since being diagnosed either with infections, temperatures and severe stomach bugs. Have three children and a husband kids are 19, 17, 15 so they are well aware of what’s going on. But it’s so tough on them seeing me poorly so on my good days we go out as a family making memories. I know I will never get the all clear but if I can carry on fighting hard as I can I will try my hardest to be around for a While yet xx

Hi Lindsay! You’re doing ever so well!!

Fight, girl! Fight!!! 

I’m sure if you look back on your journey, you can be so proud of the battleground that you have so successfully navigated your way through.

The mountainous highs and cavernous lows seem so massive when you face them head on, so no doubt, you’re going to feel overwhelmed. Totally understandable!! Just give yourself the permission to just be - be in the moment - feeling the way you feel xx 

While you’re fighting, keep carving the time to make those special memories with your beautiful family!! 

You are a massive inspiration!! ️

Oh bless you thankyou so much , talking to people in the same situation is so helpful to me keeps me going so as long as I keep fighting I’ll keep talking to people about the journey which you in on also xx

Hi Lindsay, 

Oxaliplatin is a really rough to deal with the side effects, some days it's just enough to get through the day and you are doing really well.

Like squarebox said, speak to your oncologist, the dose can be reduced to lower the side effects, one of my last doses was reduced to 20% and i was amazed how much better I felt after it.

Hi Lindsay ,

I'm sorry to here you palitive,  I've just joined as I dosnt know what to do or talk too.

But reading your text  has put my feet back on the ground just about .

I'm post chemo after A.P.R . A d struggling with stoma and weight gain feeling g sorry for myself sorry .

Just as my first time on any support group reading your journey put me in my place , I'm in remission and so 8 months have been positive results presently just a waiting  game now whether cancer will return .

Wish you well , God give you strength and comfort .

First time I have spoken about this .

Regards 

Hi John007 

I’m glad you’ve joined the community and hope you will find it really helpful. We have another group especially for stoma support if you’d like to join that in addition to this group. 

In the stoma group we are all living with different stoma types and are at different stages of recovery etc. I have had a permanent colostomy and also a urostomy for almost 5 years-i lost both my rectum and bladder amongst other things! 

If you click on this link I’ve made here, it will take you directly to the group.

Stoma Support Group

We can give lots of support and advice to you there and you might find it helpful talking to others who are in the same situation. Please feel free to join and make a post there-hope to see you soon! 

Sarah xx

Thankyou Sarah, 

I supposed compared I am lucky I had Apr  and left my bladder , my God you have had life changing surgery .

Although my bladder  has been left sensitive and temperamental and I do loose control when I don't realise my bladder is full .

Never done this  before  talk that is .

Just kept quiet not very able , tire quickly and my balance is affected .

Expecting a call so will have to go , 

Thanks for talking