How do you cope with hair loss,pain,vomiting with chemo?

Hi  

You might be better posting your question in one of the cancer support groups rather than just in this stoma group to get more replies from others going through chemo.

This is the bowel group-

Bowel Cancer Forum

It will help others if you can say which chemo you are on. 

Sarah xx

Hi Sarah - I am not on chemo yet, have had a CT scan, but been told to have a PET scan, after having had a non reversible ILEOSTOMY. Something showed up on the CT scan, could be that the cancer has come back!!!!!!

I cannot handle the idea of losing my hair,vomiting,burning scalp and other organs being affected.

Also, my husband would not be able to cope with it either - we have nobody to help us.

fatz x

It’s incredibly difficult if you have no support, I get that. We were on our own with no help too.

But you don’t know yet what the scan results will show so it’s maybe a bit too soon to assume what chemo could potentially be like for you, or if chemo would be the treatment offered.

I had chemo for my cancer, didn’t lose my hair, never vomited once, and didn’t have any of the side effects I had been warned might possibly happen. It just shows that everyone is different in how they react to treatment. 

I think it’s best to wait for your results to see if there is treatment required and what it might involve, but being warned of side effects doesn’t mean getting any or all of them-being advised of side possible side effects is required for you to be able to give informed consent. 

You don’t have to consent to any treatment, even if it’s recommended for you, but that requires a full discussion with your doctors before you make any decisions, and looking at the pros and cons of how it relates specifically to you and the implications of not having it.

I’ve always been of the mindset to do anything needed to get rid of my cancer, which is why I went through the surgery I had, and if I’d needed more chemo I would have done that too, but we are all different in what is important to us. 

Ultimately, you need to make decisions which are right for you and which you are happy with, but why don’t you wait and see what’s going to be required before assuming you wouldn’t be able to cope with treatment?

Sarah xx

Sarah you seem to be all over this site - what does COMMUNITY CHAMPION mean exactly?

Hi  

A community champion is someone who has a volunteer role with Macmillan within the online community. 

We are here to share our own experiences, direct others to the most suitable groups they can join to get peer to peer support, signpost resources and welcome new members.

I appear in a number of groups which relate to the type of cancer I had, and to the treatment and surgery I have undergone. 

I hope this answers your question.

Sarah xx

Thank you Sarah

fatz x

Now I have to have a PET scan, which I am going to refuse - why, you may ask?

Due to the fact that I do not want to have RADIO ACTIVE SUBSTANCE pumped into my body - nor the vile side effects.

The Consultant should have told me about this, especially after I refused the dye which they use on CT scans.

Basically, the PET scan is worse than the CT.

Why the hell did he not tell me????????

fatz x

It is, as I’ve said before, your right to refuse any treatment, and of course scans. I’ve had multiple mri, Ct and pet scans because they all show different types of images and therefore give different information.

For me, I chose for my team to have all the information they needed to plan my extensive surgery, because surgery would not have been possible without the various scans. I had no effects from any of them. I don’t like having any scans, but my priority has always been doing the best I could for me because I wanted to be well, so I put up with them. I was always aware what a petscan involved.

My opinion on scans and their value is clearly different to yours, which is fine. It’s your right to refuse them so long as you are aware that your team may not have all the information they need, which might have an impact on how you’re able to be treated. 

Just advise your consultant you want to decline the scan-that will free up an appointment for someone who is happy to have one. 

Sarah xx