Feel so lost

Hi and a warm welcome to the board from me. I’m going to let my friend court reply to you as she is our resident liver expert. If you click on her name you’ll see that her mum was diagnosed in 2009 and is still doing well. There are a lot of people who are doing well on palliative chemo and like to call it ‘living with cancer.’ 

Have you thought about posting on the Bowel Cancer UK Board too? There’s quite a few on there that have had liver involvement - you could copy and paste your post from here to save time?

community.bowelcanceruk.org.uk/.../active

Please also take time to look after yourself too. There is a Relative and Friends section on the BCUK site which is a closed section where you can offload to others who know what you’re going through. The old adage about putting your own oxygen mask on first so you can help others rings true. The cancer and treatment will become a big part of your life so try and take time out for a walk with friends.

Take care and please let us know how you’re gettin on

Karen x

Hi 

Welcome to the forum from me too .

Sounds as though a lot of stress is resting on your shoulders just now. 
Your husband is still young , my mum was 67 when she was first diagnosed. What a shock to find it was already in her liver . She had a good going spread in her liver . 
Going straight to chemo was a good plan . It allowed it to hopefully work on the visible spread and also the microdisease.

They also review after each scan and where possible add in other approaches if the opportunity presents itself . My mum ended up being referred to a centre of clinical excellence for the liver and they were able to remove 73% of her liver in the end . It has remained clear 10 years later .

Others use other treatments like radio frequency ablation or chemo on a maintenance bases and can do so in some cases for years . You will see people on the boards for five / six years . Unfortunately not all people but things have definitely progressed in the last ten years . 
So it is not without hope .

Great to hear you are all happy with his team.  That is a great boost.  They are very cautious to begin with until they see how your husband’s cancer responds to treatment . It is definitely a toe by toe journey and it certainly takes time to come to terms with it and to develop ways of coping ,

However coming here and connecting with others is a great outlet . I like to see what others have achieved. 
Take care ,

Court 

https://www.bowelcanceruk.org.uk/about-bowel-cancer/our-publications/treating-advanced-bowel-cancer/

This is an up to date booklet you might find helpful to get an overview if you have not come across it already .

Thank you so much. I hope to be in a position in the future to be able to offer help and advice to others that can be as welcome and comforting as I have received so far. It's a long journey and we're only at the start. 

Sending you love & hugs, cancer is a lonely place. I found the people on this site and spoke to the Macmillan nurses, all amazing people. 

Hi  , my mum also has terminal bowel cancer spreading to the liver and lymph glands. She was having treatment for about a year before it became terminal and we too are now dealing with the news. I am so sorry that this is happening to your family, I know it is a heartbreaking and horrific time. I’m 18 so I’m hoping maybe I can help with my experience to maybe help with your son. Obviously everyone deals in different ways and will need different types of support but I’d like to try and help if I can. What I have found most helpful is being able to talk freely to my dad about the situation. Not feeling scared to ask him questions and be present in the process has made me feel as though I at least have a part in my mums life still. I know it is terrifying talking about subjects like this as they are depressing and horrible but discussing it together may be a great help, if hard to initiate. Every day is a struggle but I truly hope your family is okay and that you can get through it together.

Mary2102,

Your words are so comforting and I'm sorry you are going through this heartbreak also. We are hopeful that chemo will buy us as much time as possible. The phrase living with cancer has never resounded so much. It's what we intend to do, live with it. 

Only time into treatment will give us any indication of what the future holds. Telling our son was the hardest part of the day when we were given the diagnosis. It's so hard trying to strike a balance between hoping for the best and preparing for the worst. Or son is very, very close to both of us and fortunately is very open about his feelings.

We will hopefully be a bit clearer headed after our first meeting with the oncologist. I hear what you are saying about talking to your dad and it's good for all of you to have that frankness. I hope that we offer our son that much needed avenue of comfort also. 

Best wishes to you all and stay strong! 

Hi 

Just want to welcome you to the bowel forum too. I am so sorry to hear about your mum .

I hope we can offer you some support too as your family faces this really difficult time .

Has your mum stopped treatment just now ?

Take care ,

Court 

One piece of advice a patient gave me years ago was to keep my mind where my body is . When you start to feel overwhelmed with a chain of negative thoughts to pull back into the task you are trying to do . Again it took time but that small tool actually helped me on a day by day bases . 
Court