Chemo for stage 4 bowel cancer followed by surgery

I did indeed . Got a bit carried away . It’s a bit too tall ! But I like it . 
Got quite a surprise when I went back outside . Everyone seems to have put their trees up . 
So stressful waiting for the phone to ring ! Hope you hear something very soon . 
Glad you got another walk in . I got a lot done today but no walk ! Tomorrow for sure .

Court 

Hi Court,

your tree sounds lovely. I still haven't heard anything back from the hospital yet. The nurse rang me back as I had left a message for them to call and just said she would chase up the apt. So fed up with it now. Just feel the longer I'm waiting the more the cancer is spreading in my body. It is horrible being at the mercy of the health system and trying to get some help on my own. Not such a good day now, I just feel like I am bothering them or they have written me off already. 

Hi 

Sorry you are having a rough day ! Totally understandable when you have not got a pathway forward yet. 
You are nearly there . The final step to starting treatment. You would think they could give a rough time scale !! 
It is very frustrating. I think the problem is they don’t actually have a sense of clinical urgency . I think I said before my mum’s was happy for her to go on holiday . In our minds I thought he should have her in the next day . Even although it might be the case clinically I still believe the emotional energy spent during the intervening few weeks is considerably taxing .

It does feel hard at the beginning navigating such a system but honestly that too got better once you start to get to know the staff and the oncologist. Suddenly you are a person and not a number . Initially I thought the local airport might be easier to navigate !

You will maybe hear tomorrow but never give yourself a hard time for self advocating in your circumstances. You are very reasonable and polite. They would do the same for themselves.

Take care,

Court 

Thanks Court, 

I left a message for the specialist nurses and they did get back to me in the afternoon. I have met the nurse before a few times and she is really nice. She explained that the MDT meeting will be tomorrow morning and someone will get back to me either tomorrow or Friday. I did have a bit of a moan at her about how long I felt it was taking and she was very understanding. She told me that they are doing tests on my tumour cells to see what it responds to chemotherapy wise so that is encouraging. I just want to get on with it really. It is difficult speaking to my family about it as they get annoyed on my behalf which doesn't really help me a great deal. I have been looking at lots of information from bowel cancer UK which has been really helpful. It is difficult being your own advocate when you don't feel all that strong mentally or physically but I know I have no one else to do it for me so I have to. 

Hi ,

Pleased to hear they are doing tumour testing !

For what it’s worth , despite having to hit the ground fast and collect all the relevant information on your own and I am really impressed with how you have advocated so strongly for yourself . I know that’s not been easy for you and is a big system to navigate! 
Hope you hear something soon .

Court 

Hi LouLoubelle, 

I had right hemicolectomy in July last year followed by 6 sessions of CAPOX same as you, I struggled with the Oxilplatin too.  September this year I found out I now have Stage 4 Bowel cancer.  I am about to have my 6th treatment of Folfiri and Cetuxumab and following a scan this week it seems to be working in shrinking the tumors. Hopefully I will have surgery on my liver soon.

I know its hard but try to stay positive.

Thanks Marycl, 

That is so good to hear that your tumours are shrinking. The chemo planned for me is Tomudex and Campto both IV which apparently haven't been used together before, but my tumour has very aggressive KRAS cells which don't respond to targeted treatment. I am not sure if the chemo you are on is targeted to your cells. I am a bit confused by it all if I am honest. I just hope he has put me on the right treatment. I am really scared by it all and really don't want to die this early. I am 56. 

Hi 

Obviously I don't know the details of your cancer but if you're having HIPEC they must still be thinking cure. Sorry if I've got the wrong end of the stick but I had HIPEC at the Christie just over a year ago. Its tough going and it does knock you around a bit but they really do get in there and get it out and literally wash you out! I've been doing well since but have had a suspicious node show up on my ct scan this week but we think that's more of my chemo having to stop three quarters through due to the lockdown in the summer. What I would say is ask all of the questions you think of, there isn't a stupid question. 

I waited from September to November before the operation was done, where as my first op after initial diagnosis was within 4 days but I was literally dieing!. 

Keep going, keep positive, keep fighting!!

Alll the very best wishes and prayers 

Thanks Mickey, 

My first op was done as an emergency also after a CT scan in A+E, as I couldn't get anyone in the medical profession to help me. I had an almost complete blockage of the bowel and needed right hemicolectomy by laparoscopy which was plain sailing and I was so glad to be free of the tumour. 

I was turned down for the HIPEC by Basingstoke a few weeks ago but found out this past Thursday, as they aren't confident they can remove everything so won't do it until I have 3 months of chemo treatment to try and shrink the rest of the tumours. It's 2 new chemos for me and I know it's vain but I really feel upset at the thought of my hair falling out as it is long and thick. It didn't even go thin on the Capox. I know it is the least of my worries and I will have to put up with it. At least I won't have lots of pills to take at home this time as it is done by iv in the chemo suite. 

I am sorry to hear that you have a new node. I hope the chemo does work well for you. Which one are you on? 

Prayers and good wishes to you also 

LouLoubelle,  I believe it is targeted for my cells, I was hoping to have surgery on my liver but have just been told I need another 3 months of chemo before they will even think about it, the problem is I have 3 nodes on one side if the liver and ine in the other and apparently the single one is the problem, they need to get rid of that first.  I also have secondary in the peritoneal lining which they are saying is inoperable, I'm devastated.  I am 59 and have so much still to live for so will be fighting it all the way.

I hope your new combination does its job, keep strong x