What should we expect as stg4 progresses?

Hi Chough Cliff 

It is tough to know but appreciate where you are coming from . My mum came off treatment six months before she died and maintained a reasonable quality of life with carers involved . But was frail although was still able to get out with my help most days .

She did not slowly decline but maintained that level of function until two days before she died where she seemed to take a cardiac incident. 

Chemo itself can  cause side effects and mum did pick up a bit once off but not to her previous level of function . It all came around rather quickly in the end . She was out three days before having lunch and enjoying it but I could see she was weak .

Take care ,

Court 

Thank you very much for this. It is so good to learn from the experiences of others.

It has been very hard to see the decline and my worry is that my wife will never get up and out again.

There has been a succession of issues - near blockages ( she has an ileostomy ), referred pain and the nausea, exhaustion, trouble eating etc that are chemo- related. We seem to move from one to the other without any respite. Her quality of life appears at an all-time low - which concerns me as she has been incredibly positive throughout.

Chemo can be so tough especially when she has been on it for a while .

It’s so hard to watch and get the quality of life balance . The decision to stop treatment was made by my mum’s team and I did have mixed feelings . Bouncing from thinking it was too much to thinking it was too soon to stop but it did help ease the side effects .

Lonsurf can be tough by all accounts so she has done really well .

So are you doing well as it can be so harsh watching it all .

Take care ,

Court 

Thank you enormously. It really helps hearing this - thank you for staying part of this community and sharing your knowledge and experience.

It’s tough - we’re on chemo line 3 and it seems that the side effects have increased over time. There is no respite now, its constant chemo. My only hope is that there might be periods of respite, that make the chemo all worthwhile - where quality of life improves. It’s not happened yet, but it is a journey.

Hello. My husband had terminal bowel cancer with mets to lymph, lungs and peritoneum. Diagnosed in April 2023. He also had an ileostomy. Chemo was Folfox and then Folfiri, but this stopped on December ‘23. The Palliative Care team were excellent and the pain management was superb. Like Court’s mum, my husband was weak and breathless. I suppose there obviously was a decline, but he did not lose his appetite for good food, nor his zest for life. He only really faltered for the two days before he died; and was still enjoying meals, daily outings and ‘living’ almost to the end - which was peaceful and pain-free. He died on the 17th June. Best wishes to you.

Thank you for sharing this. It gives me hope that I might be able to achieve something similar for my wife. She’s had Folfox and Folfiri ( mets in liver, peritoneum, ovaries) and has moved to Lonsurf, just over a month ago, so is on her 2nd dose.

Earlier on, we had hoped for period of ‘maintenance’ chemo but have been told it is constant from now on. The side effects are so tough that she has questioned whether chemo is still worth it, given her poor quality of life.

I can only say that my husband chose what he called quality of life, rather than chemo. He hated being defined by the cancer and living from one appointment to the next. He  hated his day revolving around what pills it was time to take rather than what was on the menu! He resented the constant surveillance and needing to be at home for a certain time because of a nurse/doctor visit when he wanted to be out and about just ‘living’ as best he was able. He was a very strong character (most people would have used less complimentary words!) and he did more or less manage to get the death he wanted. Sending you a hug.

Thank you - a hug back to you. Your husband’s decision sounds very brave. It’s a tough call and one that none of us can make until we are in that position.