Life beyond bowel cancer

Catherine Blakeney

Does the anxiety ever go

It’s 4 years since my diagnosis in July, I’m due my routine review next week, and the anxiety is back like it was when I was diagnosed, I guess it’s the usual scanxiety but I so wish it would keep biting me 😓

Gg k

I'm 3 yrs on since my op and don't feel anxious until it's time for a CT or colonoscopy. A week before my anxiety goes through the roof and until I get results I can't relax properly. I've decided for me that I just accept it but limit the worrying to no more than 10 mins at a time and distract myself with anything and everything .
To be honest I think that it's perfectly normal to be anxious after going through such traumatic times but the trick is to not let it take over completely. Easily said than done and only those who been through it understand.
Good luck with your review :x:

Terrish

I am 3 years down the line and just had my 3 year scan (NED) and colonoscopy (all fine too).

I don't think about my cancer very much at all now, but the minute I got the appointment through for the CT, suddenly every lump and bump becomes an enlarged lymph node or met - seriously!

But now I am quite relaxed again, and thinking of not coming on here so much as I find it does make me think about it all and sometimes I just don't want to.

It is lovely to be able to give support to others, but I need a break sometimes. :x:

terri m

Hi @Catherine Blakeney .. Sorry to hear your anxiety levels are high atm. However I would feel exactly the same in your position.. I am due for a 1st post op chemo after august.. I'm dreading that.. You have achieved 4 years. Thats fantastic.wishing you good luck. Lots of love xxxx💗

terri m
Quote from @Terrish:
I am 3 years down the line and just had my 3 year scan (NED) and colonoscopy (all fine too).

I don't think about my cancer very much at all now, but the minute I got the appointment through for the CT, suddenly every lump and bump becomes an enlarged lymph node or met - seriously!

But now I am quite relaxed again, and thinking of not coming on here so much as I find it does make me think about it all and sometimes I just don't want to.

It is lovely to be able to give support to others, but I need a break sometimes.

By hi @Terrish . just read your profile. And noticed you had the same staging has me .. Could yiu give me any tips on how you have done so well too??? Have you given up anything? I cant wait until the day I dont think about this crappy disease. Looking forward to being able to put it behind me... Anyway heakltth & happiness to you xxx💝

Terrish

Hi @terri m - Snap! we do indeed have same staging. In one letter the surgeon said I had moderately differentiated cells and the oncologist wrote that I had poorly differentiated cells - if they don't know, how can we be expected to understand it all?

I also stopped the poxy oxy after 4 cycles but did the whole course of cap tablets. On the basis that for some people they now think 3 months is enough, I felt I got the best of both worlds. (I hated the side effects of the oxy and whinged so much my poor oncologist threw in the towel before I did and said I could stop.)

About a year ago I tried a gluten free diet (well gluten low, I can't resist some bread and cake) and that has helped my gut, but I only did that post-reversal, as I found it helped with control issues. I think I had IBS for years and chose to ignore it, which lead to the tumour growing - my theory, not a medical one.

I take the pomi-T supplement which was recommended by a speaker at the Beating Bowel Cancer patient day. It contains various ingredients (turmeric, broccoli, pomegranate) which is said to help. I have no idea if it does, but at least I feel I am taking something.

Other than that I try to think positively (not always possible). It helps that I am naturally a happy sort of person, other than when I am down of course - it happens :) .

I have dogs and horses, I am as active as I can be swimming and going to the gym, and I try to count my blessings (please pass the puke bag someone).

Lizalou

Hi @Catherine Blakeney @Gg k @Terrish
I too am at the 3 year point, with a recent clear ct scan. Mostly I don't feel too worried but on the other hand I sleep badly and am beginning to wonder if it is all part of the problem. It is always there, part of my personality now!

I don't think anything could be as bad as the 1st few months, but maybe I am just better at coping.

I am sure everything will be fine @Catherine Blakeney but I will be thinking of you. :x:

Gg k
Quote from @Terrish:
I am 3 years down the line and just had my 3 year scan (NED) and colonoscopy (all fine too).

I don't think about my cancer very much at all now, but the minute I got the appointment through for the CT, suddenly every lump and bump becomes an enlarged lymph node or met - seriously!

But now I am quite relaxed again, and thinking of not coming on here so much as I find it does make me think about it all and sometimes I just don't want to.

It is lovely to be able to give support to others, but I need a break sometimes.

Hi @Terrish.
Interesting to hear you say about not coming on the forum so much. I feel the same way. Sometimes it puts things and worries into your head that weren't there before - no fault of others just over thinking on my behalf.
Like you I need a break so in this case your comments have had a non worry effect on me and I too will visit forum less frequently. So thank you :x:

Catherine Blakeney

Hi @Gd k @Terrish @terri m @Lizalou thank you all for your replies, I have also been visiting the group less it has helped me worry less I was the same @Gd k , I think it’s because I’m due my review that the anxiety has resurfaced most days I get on with life and don’t give cancer brain space, it annoys me that I get so anxious but this is how it’s been since diagnosed.
My last CEA was 2 same as last one in January 2018.
Wishing you all the best and thank you for your support :x::x::x::x::x:

DianeS

Hi @Catherine Blakeney I sympathise with you as getting results almost makes me hyper ventilate. We have been through such a lot that the bad memories resurface, but it’s great that you can put it behind you for most other days. You’re CEA reading is really good too. I will be joining you on 11th July for my PET scan, if this one is clear it’s 2 years NED. We can do this!!!!!!Love D :x::x::x::x:

Scardycat

@Catherine Blakeney we almost have the same timing. My diagnosis and op was nearly 4 years ok ago I find it difficult to stop myself thinking what was I doing this day 4 years ago and still worry about reoccurrence. I won’t have my check up till September and need to agree with onc what format this will take as he doesn’t want to scan this year although I would like him to do it. What format did yuur check take?

Catherine Blakeney

Hi @DianeS @Scardycat thank you for your replies, I have been followed up by the colorectal surgeon and specialist nurse, I was discharged back to them once I finished my chemo in March 2015 and haven’t seen onc since then, the team do discuss all my CT results,colonoscopies and CEA with the MDT . I was seen every 3 months for the first 2 years with 6 monthly CT as I had lung nodules which they watched for nearly 3 years and said they haven’t changed in size or number and can be considered beign I had pneumonia after surgery and they could be scarring but the onc dr said they may have been secondaries so that’s why they followed them it was dreadful, then 6 monthly in year 3 and yearly for year 4 and 5 with a discharge at 5 years. My GP can then keep an eye, however the colorectal team say I can call anytime and ask thim be seen if I’m worried inbetween reviews.
My last CT June 2017 as well as my colonoscopy so my consultant has said 5 years till the next one with freaked me out.
I remain on 6 monthly CEA bloods should have been yearly but as I get so anxious they have said have 6 monthly if that will ease my anxiety.
It’s awful isn’t it how we still get so stressed about the cancer returning isn’t it 😓
Sending you both positive vibes hope you are both doing ok xxxxx so hopefully one more review next July 2019 and all being well I’ll be discharged back to my GP

Gypsy

Hi @ Catherine Blakeney. I have been following this thread and I wanted to just say, yes, for me the anxiety has gone and I no longer think about cancer with regard to myself. I am 6 years clear now of secondaries that were dealt with in 2012 and after I finished treatment back then, I just decided that I would not let it ruin my life any more. I approached scans with the attitude of expecting absolutely nothing either way and that worked well for me. I've never had my cea monitored and have never known that or felt the need to know it. My team simply don't do it and think it too unreliable. So I have never had that to worry about and glad of it.
Like you, I had 6 monthly scans up until 2 years ago when I went onto annual ones again (in December)and I see the colorectal nurses in clinic once a year as well (in July).
Here is the thing though. I've had my clinic appointment today. It's always just a nice friendly chat and and an ask about how I am doing- and I am very well and look it, thankfully. Previously I was told I would be monitored for 9 years due to the liver tumour but today, that went up to 10! I will have another annual scan this December and then if that is clear, every 2 years until they decide that the magic 10 has been reached and I will see the nurse again next July. Apparently, this is the protocol followed by other Health Boards in Scotland, not just Highland. I know that this is different to what some patients have in England and I have known (on here) of those who have been off the books after 5 years clear of a liver tumour. I said today ' the fact that you are continuing to monitor me must mean that there is still a possibility of it coming back' and she said 'yes, but that the chances are very much reduced with the timescale. If anything does come back it will be picked up early in you'. I do not understand how it can be so different between geographical locations. Surely, either it is safe to discharge patients at 5 years clear of a liver tumour or it isn't. However, with regard to myself it means that even after 6 years in the clear with the status of No Evidence of active Disease, I can't allow myself to believe that it won't ever come back in me but only remain hopeful that it won't and doesn't.
It makes little practical difference to me and I gave up stressing, worrying etc a long time ago, like I said.
I hope that you will all one day be able to worry less and I believe that you will, in time.

Catherine Blakeney

Hi @Gypsy thank you for your support, I also hope that I will also be able to worry less, in fairness it is getting a little easier.
There is such a difference in follow up like you I wonder if it will come back and no one can really give you any definite answers , I get the there is no evidence of recurrence .
I guess that’s as good as it gets and I should be grateful that they are watching me.
I hope you keep well and thank you for your reply :x::x::x::x:

Baxter2

Hi @Catherine Blakeney

I'm sorry you're feeling all this worry for your annual review. I would think the anxiety around this never really leaves you. Scanxiety is real and I think we all feel it in the run up and waiting for results.

Thinking of you!

Loads of love,

Karen :x::x::x::x::x::x::x:

Catherine Blakeney

Hi @Baxter2 thank you. Congratulations on the birth of your beautiful grandchild, hope you’re doing ok .
Review went ok all good next one is in July 2019 :x::x:

determinedjoan

Yes, think it does get easier eventually; 🤞🤞🤞:x: