Just need to vent, early in the diagnosis process

Hi Francesst

Big welcome to the forum . It is so scary in the early days of a diagnosis that has spread . My mum was picked up on one of the first bowel screens way back in 20009 when it was just being rolled out . She was busy remodelling her garden with me and pushing wheelbarrows of stones around . Not a care in the world but thought she would participate in this new screen . What an absolute shock that turned out to be from no symptoms at all to a spread to the liver . Her liver looked like a fruit bowel of tumours in there ! However she was physically in good shape .Thats a positive to start from . Sounds as though your husband is the same .

The other good news is there are lots of treatment options within bowel cancer and the more you read you will find people doing well who are actually on a maintenance dose of chemo for years and go about their lives . Treating it as a chronic condition is a possibility. My own mum was inoperable at diagnosis, that was a hard one to process initially but it turned out for some people chemo is actually a very powerful tool . She had significant shrinkage and that made surgery possible . It was a game Changer ! This actually happened twice . If you click on my user name you can read her full story to give you a bit of an idea how treating it over a period of time was achieved. Sadly some don’t get the same outcome but over the last ten years more treatments are on the table for the oncologist to use but the surgeons are much more aggressive in their approach too! So despite it being a difficult diagnosis it is not one without hope !

Hopefully he will get his treatment plan soon . It is pretty universal if there is a reasonable spread to go straight to chemo . This is a good plan as it not only allows shrinkage to occur but also reigns in any other stray cells . This is however reviewed by the multi disciplinary team after each scan and they actively look for every option to treat the disease . They keep a close eye on them even if it sometimes feels as though they are not .

Ask anything you like . We totally understand how hard the initial period of waiting can be .

Google can be informative in some regards but requires a bit filter as you can easily spiral out on what you read . Also research articles need a filter . It took me a few reads before I learnt to check the date and sample sizes ! Ten year old research is not always helpful. Even on forums people can describe a similar situation in very different ways so my rule is always to remember you are a statistic of one . Only his response is the one that matters to him . 
Take care of yourself too . It’s not always easy watching either but good support makes the world of difference.

Court 

Hi Court, thank you so much for your reply, your Mum's story gives us such hope. The one positive the Consultant has said is, my husband is fit and healthy, aside from this. Like your Mum my husband has been busy, renovating our house and shown few signs of any of the symptoms.

I hadn't thought of chemo in the way you describe, my husband has dropped into a dark place on his thinking which is so not like him, he says what if there is no plan. I am hopeful that our Consultant is aggressive and has a Stirling plan for him. 

We don't have much family, and so I'm just going to make the very much of this group, thanks again for your reply, you don't know how much you've helped already. 

Given his oncologist said to stay positive and he is well is a strong indicator he has a treatment plan in his/her mind . Once the plan is through is really reassuring in some way . You know something is going to be done . You are able to start working with it and planning round it .

It took two years of chemo to get the upper hand for my mum but we planned things in our minds and kept busy . At times mum was just spectating but she was involved in all the decisions.

Its totally understandable given the uncertainty that he feels despondent but more information and a plan may help a little .

Please do use the forum at any time . That’s what we are here for . Those early days are ingrained in our minds so we are keep to reduce the fears for others .

Take care ,

Court 

Oh, I was in much the same place with my husband  although we now have a diagnosis of colon cancer with tumors in the  liver.  It’s hard for us to be patient... every day is a day of worry until we get a treatment plan, which is hopefully the next few days.  Our specialist said he realises this... for him a week races by, for us every hour is torture, and I expect that is what you are going through now.  I agree googling is difficult because prognosis, etc is not necessarily applicable to today or your husband’s unique case.  You might personally also check out the carer’s forum... it has really good potential insights on how to support your husband and also how to keep yourself well mentally and physically.  I’m working to keep my husband’s mind from going to a dark place while we wait. But I was working so hard on keeping my emotions in check today I had a breakdown in the supermarket... the only time I’ve been out of the house without him.  Take care of yourself.  Hugs.

Oh Juppy, you could be writing my story, so many similarities, the waiting is the worst, the uncertainty, the speculating, the worry, oh gosh so many emotions. I too had a meltdown in the supermarket, looking at the Christmassy stuff, tears rolling down my face, yet a month ago we had no idea what we would be facing now. It seems our Consultant will confirm a diagnosis and treatment plan all at the same meeting, he says either this Tuesday or next, to him that's how things work, to us it's a potential extra week of torture. I hope you have your husband's treatment plan soon, at least then there is more certainty, a path to follow etc. 

It's comforting to hear from others in a similar situation, thank you for replying, take good care, sending a virtual hug too.