How do you stop thinking?

Hi Wife2kidsunder6,

Please remember that alongside accessing support via the Online Community, the Macmillan Support Line teams are also here for you. Sometimes it can help to talk things through with someone who’s there to listen. They’re available 8am to 8pm, 7 days a week, on freephone 0808 808 00 00, by email, or via live webchat. 

Additionally, there are crisis helplines available that can offer immediate assistance and support should you ever need to reach out:

• Samaritans have a line you can call at any time, every day of the week. Whatever you're going through, a Samaritan is available to face it with you. You can call them free on 116 123 (they are open 24 hours a day, 365 days a year).

• Mind is a UK-based mental health charity, which you can call on 0300 123 3393 or text 86463 for mental health support.

If you're struggling with your mental health we would always recommend discussing how you are feeling with your GP. If you need help and it’s outside of your GP’s opening hours, please call the non-emergency NHS 111 on 111 for England and Scotland. NHS Direct Wales on 0845 46 47 if you are from Wales. If you’re in Northern Ireland, you can find details of an out of hours service here.

Please let us know how you get on.

Sorry, I didnt mean to cause alarm, I'm not going to harm anyone or myself. 

I just mean, I keep thinking worst case scenarios and finding it difficult to be positive. 

I'm not able to focus on work, read a book, or watch a TV programme, walk into a room or anything, without my mind wandering and feeling dread. 

I know it seems selfish, when hubby is the one going through it, but I just keep worrying about what I'll do without him. He's my everything. 

Does anyone survive stage 4, which if this has spread, that is what it is, isn't it? I know nothing about cancer gives of positivity, but I dont feel like I even have hope at this point.

Hi Wife2kidsunder6 

Yes lots of people survive stage 4 and then leave the board and get on with their lives. I see you’ve seen the lovely post from Twinkles and you might like to have a look at court mums profile page. There is still a lot of treatment available so please try not to assume the worst?

The bowel cancer uk board has a specific stage 4 forum board that you might like to have a look at too?

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

Hi

I know it feels like you are falling down a deep dark tunnel with no light at the end but he is young and has you by his side and that is a positive.

My 37 year old daughter who has 2 small children, 6yrs and 3yrs was diagnoised with advanced stage 4 cancer on 17th June. Spread to liver deep abdominal and chest lymph nodes. I won't lie I cried every day for about 3 weeks, I couldn't say her name without crying and wailing and thinking how unfair all this was but...... I  researched (AI and I have become good friends ) and questioned and now feel in a better place. I still cry and have bad days but I am taking my lead from her and trying to stay as  positive as possible.

Everyone's journey is different and as hard as it is to not think negative I have also found lots of positive outcomes and this gives me hope. There are ongoing trials and research going on and stage 4 is not the same as it was years ago. I try to think of it as a chronic ongoung illness . You have to try and think, why can't my husband be one of those who reach NED, it is possible.

Sebding you both lots of hugs and love. You've got this. 

.

Hi Wife2kidsunder6 

Its so easy to let your mind go to worst case outcomes but a couple of things helped me get a handle on things in the early days .

Keep your mind where your body by not imagining a funeral or end of life care . That is not where  he is at and there are so many treatments . My sister said to me we only go down that path when the dr says all options have been explored. Glad we did as that was 15 years later . 
The other strategy a young girl with cancer taught me was allot worry time but not all day and for a strict period of time .

Take time away for a coffee to confide your worst fears to someone but then remind yourself of all the treatments still to be tried and take it one day at a time . Only do what’s required of you each day . I became an expert at compartmentalising.

Be extra kind to yourself . Thankfully the liver often has many treatment options ,

Take care ,

Court 

So, has spread to the liver, despite the chemo we had 4 rounds of, it did not respond to that and it has spread.to far in his liver to operate and remove any of it. They are referring us urgently for immunotherapy. 

Im so confused, I tried to write notes but now they make no sense... awaiting a call from oncology, and the list of medications the surgeon prescribed to manage some of his pain/symptoms. 

Immunotherapy is a good option . It very well could be that he would not respond to chemotherapy if his cell type is more responsive to immunotherapy. That option was not even around before Covid . That’s how things are developing in the U.K. . 
Immunotherapy has a totally different mechanism to chemo .

Do you know what his cell type is ? Did they mention if he had a type that was MSI ? If he wants to know he can email the oncologist secretary .

Sometimes it’s a case of being on the right treatment pathway for him . 
Take care ,

Court 

Thankyou for your reply Court I thought i'd wait untill I know more before replying. 

Today we saw the oncologist, we dont have long from what I understand, and have been offered as a last  option, Nivolumab and Ipilimumab. 

They said this was based on checkmate? And may provide us some crucial time with our kids as long as we can get through the side effects. They did say a specific cell type, and it had a mutation and thats the only reason this was an option for us. 

Its still an option, and worth the risks imo. 

Absolutely Wife2kidsunder6 

My mum was given six months and ended up with 15 years .   You might want to look up Moi2 profile ( think that’s the name ) she was one of our first on the forum to use immunotherapy . This only became available over covid . We have seen some great results in the forum .

My Gp was telling me of a man with a primary lung tumour with significant spread and he is now disease free .

Oncology will always give the stats but within them are a group of patients that respond well and do well despite a difficult diagnosis. I hope your husband is within that group .

I think there is an immunotherapy forum too . You might find some useful hints for managing side effects.  

It has been amazing to see patients get this option .

Take care ,

Court