Hello

Hi 

Welcome to the forum . Glad you joined and reached out to us . You sound weary and I don’t blame you one bit . As my mum’s surgeon said even patients with the most robust defences become depleted after a while . Is it four cycles of the one type of chemo or four different types of chemo ?

Have you had a look into Immuotherapy options as some people in America are having a good response with MSS as long as they have a high tumour mutation burden ! If your MSI even better . Not sure if that’s something to investigate with your team if you have not already . It took two years of treatment to stabilise my mum’s cancer and there was a lot of bumps along the way . At times physically I was worried and she certainly needed her chemo breaks to draw breath and regain ground physically . She rebounded and got to a better place but I get what your saying when you don’t have a date to finish your chemo It is both mentally and physically exhausting . 
Are they thinking of changing your chemo due to your CEA markers ? Will they allow you a break to recover a bit .

We also have a helpline 0808 808 0000 if you would like to speak to someone in person .
Have you had scans to give you an idea of how you are responding ?  Over the years my mum has had over ten liver mets , a lung met , primary bowel and still here 11 years into the process . But it is a balance of treatment and quality of life . I doubt very much if my mum could have stayed on chemo for more than six cycles in any one go . She would then have a rest period . She lost three stones in weight and a few troublesome emergencies. She was depleted at the end of each cycle. She was certainly not one of the people who get no side effects . So I can remember well just how hard it was for her at the stage you are at .

Do you know what they are hoping to change it to ?

Glad your child brings you strength and joy but you are only human and everyone needs support getting through these very real rough patch . My friend has just had a horrible time of late 18 months into her treatment but a change in chemo has actually helped believe it or not . Side effects are more manageable. 
We are here to support you whatever decision you make . We actually have a forum for patients who are being treated with out surgery . One of our members Nicky Nosher has started posting in it and reported to find it very helpful . The group is titled “ Incurable cancer for patients only” . They don’t allow carers on it so people can be free to address their concerns openly  . They also have a lot of dynamic long term posters who are shining a light  on living with this situation . Whilst it is not particular to bowel cancer it has a broad common ground . It’s maybe something you might like to look at too . It is an open group so you can read only if that suits you better . 

Our helpline staff would also be happy to discuss the mental health aspects of managing cancer over a long term approach and resources you can look at to address that .  

For what it’s worth you sound as though you have done incredibly well finding joy and strength in such difficult circumstances particularly from your daughter but maybe it would help to see how other people manage the long term implications of treatment and balancing out the mental health implications . Your GP might be able to look at resources and treatment too . One thing that was a game changer for my mum on managing symptoms was a slight dose reduction . That made the world of difference. If we had known that the first year she would have spoken up to her team sooner . She was able to carry out most activities in her life and it made it all doable compared to the first year of treatment. 

Take care and give yourself and your precious child a big hug from me .

Much love ,
Court 

Hi Sally,

Sometimes it's tiring and the suffering is too hard I know, but once you find the strength you remember it is worth it for more valuable times with your family. You will have better days. Keep going.

The chemo can make you depressed so you won't always feel like this. 

Sending positive thoughts xxx