Living well with bowel cancer

You can find lots of useful information about living with and beyond bowel cancer on our website.

Liverbird

Support

Hello everyone,
I don’t often visit this site but feel really lost at the moment. So thought who better to share my thoughts with than the people who really know how I might be feeling.
On the face of it I’m doing really well. I’m 4 years exactly from my diagnosis and have passed all the surveillance tests with flying colours. So what’s the problem ? Mainly the debilitating anxiety that I have experienced whilst waiting for tests and results. My CEA has always ranged between 1.0 and 1.3 at the highest to date. Yesterday’s result was still in the normal range but higher than us usual at 1.6. My Team aren’t worried but I am absolutely panic stricken that it is on its way up. Does anyone have any words of comfort ? 😢

clarebear

Hey @Liverbird I too am at 4 years post diagnosis and could write the same post. My last cea was 1.9 higher than previous but ct scan was clear my team weren't worried but earlier this year my anxiety caught up with me and I hit a wall. I thought I was doing OK but obviously not. I just try to take each day as it comes and of course I'm grateful I came through this but totally get where you are coming from. Have you spoken to your gp or your team about how you are feeling? I found talking to my gp helped and I do take some medication to help with the anxiety.
I'm due another cea in June.
Probably not much help but you are not alone and stay strong, its a hell of a journey we've been on :x::x::x:

Liverbird

Aww Clarebear I can’t thank you enough for your message. It has really helped. I have tried counselling and started on antidepressants (which I thought were helping ) but I’ve been really bad this time. Do you mind me asking why you had a scan at year 4 ( they haven’t offered me one this year) and were your CEA levels fairly consistent ( like mine ) before your 1.9 result ? Hearing about yours has been so reassuring to me-thank you ☺️
I am so pleased you are all clear. You are nearly there! What a hard journey though :x::x::x:

clarebear

Hi thank you to too because it makes me realise I'm not the only one feeling like this.
I had a scan last year at year 3 not sure if I was supposed to have one but I had some pain in right side. No ct scan this year but I have a colonoscopy due in September.
All cea after completing my 8 chemo cycles have been under 1 or at highest 1.2. But last one jumped from 0.8 to 1.9. I did get a cea done in January this year but I never rang to find out - was too scared to be honest.
I have lost a little weight over the last month ( I needed to) but that freaked me out. I had some bloods done in Feb pre a dental operation but all were OK so felt reassured- my diagnosis came after an initial severe anaemia - actually 4 years ago today that I went to have a blood transfusion!
I've had counselling and last year I did a course in counselling which did give me some coping strategies.
It's so hard as people think you are OK now but underneath you still wobble.
I could witter on for ages as its so good to talk to people who actually understand.
Can I ask how long you have been on your medication as I found it took around 6 weeks to feel slightly better? I wonder if I need a higher dose but a little reluctant to ask. :x:

Liverbird

Thanks so much. Your CEA’s were obviously normal when you were too scared to ask ( I totally understand this ) because you would have heard from your team if not. It’s also so reassuring to hear about your levels and that your team weren’t worried. As I said mine aren’t either so why I can’t accept this I don’t know 🙄. I’ve been on the medication for a few months but do wonder if I need to swap it or as you say increase the dose. It’s so good to talk to you and you’ve really helped me this evening :x::x::x:

clarebear

And you have helped me too, as I've been able to actually say what I'm thinking ❤ keep in touch let me know how you doing :x::x:

Liz Blakelands

@Liverbird @clarebear Just wanted to say I totally get the anxiety whenever you have a blood test, scan etc. I'm 4 years from diagnosis now and I still get anxiety whenever I have a surveillance test or have a slight twinge. I had terrible anxiety about 18 months after diagnosis and that is when I remembered what a friend, who had cancer, said to me when I was diagnosed, 'don't let fear of tomorrow ruin today'. At the time I didn't understand what he meant. But 18 months later I did and I thought this is not going to happen to me. I joined this forum and looked at some of the excellent online resources about post cancer anxiety. I also found the book 'The Reality Slap' by Russ Harris really helpful. I find I really do have to work at not letting the anxiety start to build but gradually I've got better at 'parking it' and moving on to something better.

To quote actress Liz Taylor 'I fell off my pink cloud with a thud' when I was diagnosed. And it was a big thud. It taught me not to take things for granted, and yes I think anyone who has had cancer will always look over their shoulder but you have to keep it just the occasional glance.

It is easy to think you are the only one we these anxious thoughts but you certainly are not.

Big hugs
Liz :x::x:

Liverbird

I absolutely LOVE this. Thank you so much :x::x::x:

momentbymonent

@Liverbird totally get where you are coming from. And you've already had magic words if reassurance. So far, I'm all clear but anytime something is a tiny bit off, so is my poor brain. My CEA went up to three two counts ago; team profoundly unworried. Not so I. This time it's back down at less than 2 🤷. It was actually quite a helpful mini journey for me that small changes don't always augur the worst, but also a lesson to be kind to myself when I do feel like this. We've been through something pretty frightening and tough so it's no wonder our poor brains go to bad places. :x: