Husband newly diagnosed

Hello Montana,

You are definitely at the most difficult phase, waiting and not knowing the full picture is extremely challenging. I think we all fear the worst at this stage and our minds run away with us. It's all very overwhelming and scary.

Try and take each day as it comes for now until you are given the full picture. Once you are in possession of all the info and a treatment plan is put in place you will be able to see the road ahead. It's very difficult for you as the supporting partner, my wife found it really upsetting at the start when I was diagnosed nearly 3 years ago with stage 4. We've been through so much, we are here and enjoying life together. The main thing I've learnt through all of it is, nothing is certain, there are ups and downs along the way and good times and difficult times. Try not let it define you or your husband, we are more than just cancer. 

Use the forum to ask questions, to vent or offload. We are all here for you. You might also want to look at the carers forum just for you 

Best wishes

Martin

Thank you so much Martin - it’s comforting to hear that we’re not alone in finding this stage so difficult.  I hope you’re doing well and continue so.  Thanks again x

Hi, Montana, yes this is a difficult and worrying  time. I believe a colonoscopy, CT and MRI are the most common tests before the MDT, certainly that's what I had. So it is likely that he will be discussed fairly soon. 

Ask whatever you need on here, someone should know, else ring the Macmillan helpline. Take care.

It will of course be far easier for you all when you know the full picture - & those tests you mention should clarify that & the upcoming meeting (which will involve a lots of medics,) will determine his treatment plan based on those results. The meetings are generally held once a week, so, you shouldn't have long to wait.

Many best wishes

Marianne 26

Oh so difficult to be in the waiting stage.  First, try not to Google the disease, or if you do be aware much of the information is very outdated.  Treatments and prognosis have advanced significantly in the last 20 years.  Macmillan site and nurses are excellent, and do call if either you or your husband have questions, fears, or just need to talk.  You are probably doing the right thing not to tell people until you have more of a prognosis... we told people immediately and found people were not helpful... either too optimistic (“oh you’ll be fine!  Bowel cancer is so treatable!”) or too pessimistic.  Few reaiised what it was like to wait for the tests that would tell us how serious it is.  At the same time if you do need someone to talk to, feel free to.... sometimes you need to let people know what you are dealing with, even of it’s the uncertainty.  

The meeting with your doctor to discuss the results of the scans is so hard... try to be there, too, if you can with the Covid restrictions.  If you can’t be there in person, be in the car park and on the phone.  Bring a notebook and try to list all your questions in advance... once the doctor starts talking, everything you planned flies out of your head.  Take notes... you will forget things.  You’ll need both of you listening to get it all, and you can discuss different nuances of how you heard things.  Best wishes... 

Hi Montana,

Just a thought, it would be worthwhile contacting the Colorectal nurse specialist (CNS) who will be able to tell you what day the MDT is held each week. I would imagine your husband will be on the agenda. Once the MDT has been held I would chase up the CNS as to when you can expect an appointment with the oncologist. Don't be afraid to chase them up, the CNS are usually very responsive and helpful, sometimes we have to shout a bit louder to ensure that things are on track. It also helps feel like you have some control when we're doing something.

Best wishes

Martin

Thank you all, for taking the time to respond.  I’m grateful for your insight and suggestions, which we’ll take up.  I’ll update when we know more, but for now, thanks again, take care all x