Writing out my Fears

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Hi All,

After feeling a bit stronger each day for the first couple of days I'm having a real low and struggling to control my thoughts and fears. I've taken some strength from messages from people on here so thought I'd spell out my worries and try and get them out of my head.

So they found the tumour on Monday and the words that keep bouncing around my head are "it's quite large" and "it's probably been there for some time given how these things grow". I think back to some indigestion bowel trouble I had last year (with a little blood on poop) and keep going over the 'what ifs', I was treated for the indigestion and it went away, but the doctor who did my colonoscopy thought the tumour would probably have been there then. This all feels like the opposite of catching it early.

More recently over the last few months I've had some mild(ish) discomfort in my lower back on the left, just where the tumour is. I thought it was muscular given the way my desk is set up, but the diagnosis changed all that. It seems to be worst when I sit down, and I'm freaking out that it means the cancer has spread to my back / abdomen. It doesn't help that the stress means my back feels tight anyway now. The nurse I spoke to from the colo-rectal unit (who was great) said the pain didn't raise any red flags for her (but that she obviously hadn't seen the CT so couldn't comment on spread), but I'm now fixating on the fact I didn't tell her it got worse when I was sitting and still felt muscular at times. It's also seemed worse since the colonoscopy / diagnosis.

GP has previously reassured me that my bloods didn't show any sign of inflammation (apparently a sign of spread) and liver function etc was all normal, but now every twinge and gripe in my body feel like a sign of cancer popping up somewhere else.

The main thing I'm worried about is the spread to my back/abdomen and hearing the dreaded "there is nothing we can do".

Sorry for the bleak post, but sometimes it helps to get it all out. My meeting to hear the prognosis is on the 30th January, which feels a long way away now.

Rich

Cyclone over 1 year ago

Similar for me. I have had stool screening for years and all negative for blood.

About 15 months ago had digestion issues. Saw a doctor and they said maybe it was gastritis. I knew I had cancer but could not prove it. Never thought it was bowel cancer as I had stool screening.

Months after started getting diarrhoea. Doctor had left the practice. New one acted like I was wasting her time.

Diarrhoea was not giving up. New doctor had another stool sample and positive for blood. Then colonoscopy which confirmed a tumor which they said is quite advanced. Then another stool sample negative for blood. So my tumour does not bleed much. Short straw unfortunately. 15% cancers not picked up in stool screenings

So I thought I did everything for early detection.

What ifs galore.

But I try not to dwell on it. Have no idea what is next. Might get lucky at last. Fingers crossed Started some exercises. Deep breathing. Diet hard as foods that are healthy make diarreah worse lol. I want to go out while I still feel well but impossible. I am at peak poo poo. But just trying to give myself the best chance.

My next wish is quality of life is reasonable if it is terminal.

RichN over 1 year ago in reply to Cyclone

All the best Cyclone - hope you get some good news. As others have reassured me, there are lots of treatment options even if it’s spread. Stay strong, and I’ll try to as well.

Lisamarie over 1 year ago

Hi Rich,

I couldn't not come back to your post to comment

I also have suffered with low back pain , quite extreme at times & more so the last 3 weeks! I also suffered constant aching legs which I was convinced meant it had spread to my spine!

I had my results Friday. No spread at all!!!

So I just wanted to give you some reassurance that this aches & pains don't mean it's spread

Lisa-Marie

Lisamarie over 1 year ago in reply to Lisamarie

Apologies for the typos! Multitasking!

RichN over 1 year ago in reply to Lisamarie

That’s such great news Lisamarie, so pleased for you. Do you have your treatment plan yet?

Thanks so much for letting me know about your back too, it does help quieten that voice in my head a bit (and he’s been shouting a lot lately).

All the beat,

Rich

Lisamarie over 1 year ago in reply to RichN

Thank you! After the most horrific 3 weeks of worrying & feeling beyind terrrfied that conversation was a huge relief!

I have posted an update on the forum but they said I was stage 2 with no spread on scans and it doesn't look like there is any lymph node involvement but obviously won't know for sure till after surgery.

I have had quite a few symptoms too and awful aches & pains that convinced me I was terminal. So please keep hope that you have caught it early too as our anxiety tends to mimic all the symptoms that we think are related.

Surgery all booked for the 31st

Robotic surgery which terrified me a bit to start with.

I'm hoping I will hear some positive stories about that!

I hope your coping as best you can be at the moment

Your CT scan today will be okay I fretted totally unnecessarily about that & it was totally fine.

Not sure if you can private message on here but if we can I'm always here if you need someone to chat too

Thinking of you & hoping to hear some positive news soon

Lisa-Marie

RichN over 1 year ago

So after a pretty calm day on Friday, the anxiety has ramped up again since then. Saturday night (night before CT) was probably the bleakest yet, I really fell into a pit where I couldn't see how my prognosis was going to be anything but worst case.

I've stuck to my new routine (daily walk, 15 minutes on treadmill, yoga) and that does help, but the panic comes in waves throughout the day.

I'm fixated on the not catching this earlier, thinking it was Haemeroids at first so not really pushing anything with the doctors. I know that's an unhelpful thought process, but it keeps cycling round again and again.

I took some comfort from my GP saying my bloods (taken before Christmas) were basically normal and she didn't see any side of inflammation which would signify spread (I think that is what she said but can't be 100%), but I have no idea to what extend blood tests show up spread of the cancer.

Mostly the anxiety is fixated on the impact on my wife and two kids (8 & 5), but some fear of my own death has trickled in there as well now. I am re-starting counselling with my long term Counsellor on Tuesday and hopefully that will help some.

Thanks everyone for the support and advice so far, it really is appreciated and does help. I'm trying to incorporate some of the words of wisdom you've all sent my way so far in my daily life, but it's a process.

Apologies for another bleak post, but I can feel I'm already calmer than when I started typing this message; I think just getting it out is cathartic.

All the best to everyone here.

Rich

Maninbath over 1 year ago in reply to RichN

Hi Rich. I too find it helps to get stuff out by writing it down. I go through phases of waking in the early hours with my head in a whirl. I have written letters to my nearest and dearest at 4 in the morning in floods of tears but it is definitely cathartic. I felt a lot better for it, so keep writing and posting.

Tom