Stage 4 bowel cancer

cara

Having a wobble

Hi everyone. Firstly I must say that I find thus forum so helpful. People are so kind and God knows where I'd be without it. I read the posts every night and comment if I can help. Today I'm having a wobble been in floods of tears. Last week they had to stop my chemo due to hole in hick an line. They then found a blood clot in my jugular vein and possibly in the lungs as well. Found out today chemo won't happen this week either whilst radiographers decide best way to put a line in me. But I thought chemo break I'd feel better. Unfortunately past 2 day I have had chronic pain in my lower back right hand side. Hospital think it's kidney infection yet I don't think it is. Urine was fine n bloods wre OK had mild raise inflammatory markers hence kidney infection diagnosis but I'm not convinced. It only hurts when I move and it's not going away. I've convinced myself it's cancer spread even though cea has fallen from 50 to 19. So managed to convince my self chemo not working and chemo break not good. I'm sure I'll feel better in morning. This disease is horrible. Sorry for wobbling on i just had to tell someone. . Love n hugs to all :x::x::x::x::x:

Jaap

Hi @cara. A CEA drop from 50 to 19 is a very good sign. Any drop in CEA during my mother's chemo meant shrinkage of her liver mets.
As for your small chemo break..it wont effect the effectiveness of your treatment. My mother had a chemo break of 6 weeks at the very start of her chemo a few years ago..and her liver mets had shrunk in her next scan after resuming chemo.
As for your back pain, you have to trust the hospital's diagnosis. They know you have cancer, and hence must be happy that the pain is in no way related to your cancer.
Hope you have a good sleep. You will feel better in the morning.😊

Bear G

Hi @cara
I’m sorry to hear you’ve had such a rough week or so, but please try not to overthink things, you’re post title says it, you’re having a wobble and it’s completely natural. I think we all would in these circumstances.

I understand your frustration at having delays in your chemo but you know your team have your best interests at heart, they want to be sure you get the most from your chemo and that means being sure you can handle it and that your line can be safely sited (you don’t want that taken out multiple times, ouch.

In terms of feeling better on a chemo break, this can take weeks for the chemo to fully flush from your system and then for your body to recover. The short break you’ve had will allow some recovery but not to full bouncing, so please don’t worry about that. Likewise a short break really won’t affect the efficacy either, breaks are a routine part of treatment for exactly that reason.

My best advice in these circumstances is to trust your team and talk to them. If they thought the pain was your cancer coming back then that’s the approach they’d take, they wouldn’t be talking about infections and, presumably giving you antibiotics. But the best thing is to chat to them about it. Do give them a call in the morning, I’m sure they’ll help to reassure you.

I’ve just seen that while I’ve been typing this @Jaap has also replied and it looks like we’re saying the same sort of thing.

Have a nice hot drink and try to get a good nights sleep.

Big hugs
Bear
:x::x:

Baxter2

Hi @cara

It's all too easy to fall into a spiral of negative thinking when you have not one, but a few challenges hitting you at the same time. It can feel a bit overwhelming I think? I reckon we're all pretty amazing g at overcoming the challenges that cancer brings but when a few come at once it can all become about much!

Your CEA reduction is good news and the fact that you probably don't have a urine infection too. The Hickman line will need to be resolved of course and I'm wondering if you've been started on daily blood thinning injections too? I had a Hickman initially but had it removed to have a port inserted instead. Unfortunately, my first port didn't function correctly so needed removed and replaced with a new one! All very doable though! Is there any chance you could request a port? They are in my opinion way superior to Hickman and PICC lines. Swimming and showering normally being the best advantages!

Anyway, I hope all will be resolved and your justifiable wobble will subside!

Lots of love

Karen 💜💛💚💙❤️

cara

Thank you all so much your words are comforting x I'm still having a wobble my Ct scan of lungs has shown cancer has got a lot smaller. I should be so happy. But they are not sure about the liver. The scan they have it looks the same size but it's not a proper scan of the liver because it was of the lungs and it didn't capture all of it. So Fri I'm having full CT. My blood clot is apparently substantial it goes from my jugular vein to my heart. So now they r talking of a picc line but they couldnť fit them before but apparently they have experts at the hospital. They need to decided whether to continue on current regime of folfiri n avastin or change it. It depends on the liver. Obviously I'm thinking the worst but when I put my sensible head on. My liver pain has gone and my liver function has improved so surley the regime is working?
Thankyou for your support xxx you are truly amazing an Inspirational people x on a different note I have my hubby looking at treatments aboard to see what drugs they use etc. At least it makes me feel like we r doing something. :x::x::x::x::x:

Bear G

Hi @cara

It's good news that your liver mets have shrunk and fingers crossed that you see the same for your liver when you get the full CT scan. What a shame they didn't do that in the first place.

You're quite right that your 'sensible head' should prevail in this circumstance but quite natural for you to be wobbling a bit. My approach to my scans has always been 'hope for the best and on the day I'm getting the results prepare for the worst'. Try not to overthink it.

Please be a bit cautious in googling treatments in other countries as there are so many factors to consider. You mention your team are looking at other treatment options, will that be dependent on your CT result? If so then please try not to think too much about that until you know what your situation is, try to focus just on your next step and continue to hope for the best.

A research route for you could be to post in Ask The Nurse to ask the charity's experts for their advice and opinion based on their knowledge and experience.

In the meantime, it's great that the pain has subsided, are you able to go out and do some fun things together?

Big hugs
Bear
:x::x:

helena

Hello @cara and although I can't offer any specific advice I just wanted to say that you're perfectly entitled to have a wobble, it's a scary journey sometimes and the uncertainties of treatments can make our minds go into overdrive. I hope you manage to get some sleep tonight and all the very best with your scan on Friday. Love, Helena :x::x::x:

Lirio345

Good morning @cara, - a belated welcome from me - I have been a bit tied up over the last day or two with chemotherapy! I am sorry that you are having a rough time; the waiting for decisions can feel endless sometimes, but hopefully things will fall into place over the next week or so.

You are absolutely entitled to have a wobble; I do chant to myself sometimes that ‘thoughts are not facts’ and believe it or not that can be helpful.

Please take very good care and stay in touch, Kim :x::x:

Gypsy

Dear @cara. Just sending you love and hugs for all that you are going through just now. Loads of love, Gypsyxxxx