Surgery not an option

Hi Freebird

Sorry to hear that . You have already endured a lot . I am going to tag in process as her husband responded well to chemo to deal with a peritoneal spread . ( I think ) . My own mum had a few different spreads to face and our view was if she continued to respond to chemotherapy and gain shrinkage then it was still in the chronic treatment stage . Once chemotherapy options were exhausted then we would face it .

She did however get all her preparations ready and dealt with so she could file them away and not think about them again . That gave her peace of mind . Each time chemo opened up other options and that turned things back around . 
To be honest I have my own affairs in order having watched what my mum went through . It gives me peace of mind although no current health issues .

You also might like to chat this through with our helpline staff . They are very good at all aspects . 0808 808 0000

Take care and I hope you keep posting .

Court 

Thank you Court for your reply. You’re right in that it makes sense to have things in order, I guess I’ve been putting it off as it feels like I’m accepting the inevitable. Hopefully will feel a bit more positive once I’ve spoken to the oncologist. 

It’s totally understandable . Recurrences are really hard to find your feet from . I think my mum saw it more as something she had to do but then completely dismissed and put to the back of her mind .

I would honestly not say as a family we are a super optimistic bunch in general but we did believe for some people chemo turned things around and that gave us hope .

https://community.macmillan.org.uk/cancer_types/bowel-colon-rectum-cancer-forum/f/diagnosis/229818/good-news-post/1658285#1658285
I have found process update here so if you click on the link it will allow you to read how her husband was managed. Also if you click on her user name it will take you to her profile and she keeps his story current .

I am also assuming you have been responsive to chemotherapy previously so that is also encouraging . 
It’s horrible waiting to see what chemotherapy can achieve but if it was not for chemotherapy my mum would not have been able to have other options later on .

You are also at a very good hospital too .

take care ,

Court 

Hi Freebird, I'm on palliative care at the moment. My oncologist said I'm inoperable,  you can live with cancer or die From it. I chose live with it ! I've just had my 20th round of nivolumab, I feel good. My family now what is happening but I haven't discussed time with them as I've gone past the time I was given. I have my afters in order. You appointment with your oncologist will hopefully give you more insight into what's available. Stay positive and active. Thinking of you X

Hi Court, once again thanks for your support. I did read the posts from process whose husband did eventually have surgery & is doing well. Sadly for me surgery won’t be an option. I’m not under the care of Christies as I live near Newcastle but was referred for possible surgery. My oncology team is based at the Freeman hospital. I’m sure once I process this situation I’ll be in a better frame of mind to deal with it. Have had good responses to chemo before so hopefully will again. Was hoping I’d be accepted for surgery but it’s not to be so we’ll just have to accept what can be offered & hope for a good response. Your support is very helpful thank you 

Hi Moi2, thanks for your message. I also choose to live with this disease. I’ve been positive for the past three & a half years & been palliative for the past 12 months. I think I was just floored by this latest news & while it was not totally unexpected I was hoping it would be better. You’re absolutely right & I think once I have the discussion with my oncologist & know what the plans are then I’ll pick up again. I plan to be around fa while yet & well. Take care x

Hi Sorry I am only just able to respond to the thread posts.  It’s a tough place to be and I hope that you get the response and answers that you need @freebird may I add a couple of things.  There are and have been several people I have been aware of who have gone from being inoperable to operable after chemotherapy.  Also some in the same position as yourself in that they were not directly under the care of Christie’s. But Christie’s had looked at their cases.  One friend in particular in a similar position not under Christie’s directly and although he is not suitable for surgery at the moment they still have him on their radar and are checking his scans after chemo, is that something they have offered you? Some people I know got referred to other hospitals after being turned down at Christie’s.

Often to  a surgeon called Jamie Murphy who seems to take on more difficult cases.  There are several on the Facebook closed group which is for stage four bowel cancer patients I am no good at doing links so can’t put a link on.. you just need to request to join and answer a couple of simple questions to be accepted.  I can think of a least four people recently who successfully went to Jamie Murphy.  There is a wealth oh knowledge on there and people willing to share info and offer support in all different ways and different topics.  I wish you well going forward. And thanks to to @court for the link. My love and best wishes to you x

Freebird I did post a response just now but it appears to have disappeared!! I will try to locate it. And thanks @Court  for the heads up x

Hi process, thanks so much for your replies & positive messages. I’m not sure I’ll get to a point where surgery would be considered as the surgeons at Christies were concerned about the closeness of the main blood supply which is so close to the tumours. Court had told me about Jamie Murphy previously but as I say, surgery not felt to be an option though I will mention to my oncologist when we speak next. However, I’ll stay positive & take things one day at a time. I’m well at the moment & hopefully will be for some time yet. Take care & I hope your husband remains well x