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ZoeM

Coping

My husband has just been diagnosed with stage 4bowel cancer which has spread to the lungs and has just started palliative chemotherapy (he is 53) we are devastated and so unsure of what lies ahead.... we thought we would grow old together but now that dream has been taken away.
I am not sure how we will handle things as time on, I don't know what to do or how to be. We are trying to carry on as normal as possible but it is very hard.

LABluebell

Hello @ZoeM I hope that you are holding up.
The first shock waves do take everything over and it feels like your world has turned upside down.
Hard though it may be to believe it right now, you do find a new day of being and carrying on and getting the most out of every day.
After a short while you even learn not to live in the future.
We're all here wishing you well and ready with any advice or support we can offer. :x::x:

ZoeM

Yeah it is getting easier and we have made some big decisions over the last couple of weeks which has helped, hubby is taking early retirement so we can release some cash and have some fun times and create some more lovely memories :x:

Sasa

Hi @ZoeM ,

Sounds like you are in a similar situation to me - Mark is 52 and has just taken early health retirement from his job as pilot (you can't fly if you are terminally ill), and we got married in June.

Hope things are settling down for you a little - there is so much experience on here, and kindly souls with an ear to listen when you need it.

Keep in touch, there are so many baby steps to this mad process, currently things are fairly settled for us as Mark is on round 9 of 12 lots of folfiri, and struggling with side effects. We are living for today, planning for a future, and in the process of buying a 'get away' place in Chichester, which will be a sanctuary from day to day life.

He fasts each time he has a round of chemo, and bounces back quickly because of it, but still it is tough. It is hard to watch him struggle, but he is amazing, and we just take each day as it comes.

Do keep in touch,

Sarah :x:

Julie

My husband has had a bowel resection 12 weeks of chemo and a liver resection complications of a bile leak which meant a ct to diagnose but they also found new mets in his newly grown liver only 6 weeks after the op, Im at breaking point he is 52.

Baxter2

I'm sorry to read this @Julie I can understand your feelings as I had a liver resection in Jan and Cytoreductive surgery and HIPEC in March. My baseline scan in June prior to starting back on chemo revealed 4 new liver mets. We too were devastated. It all seems so cruel doesn't it? I'm just hoping my chemo is working and reducing them but will find out on 17th. Has your husband started back on chemo? ????❤️

Clancy

Hi @Julie I too can understand your feelings. I had 3 months of FOLFOX chemo with Panitumumab which shrunk my bowel tumour away and 3 of the 6 liver mets. Elated, liver reconstruction January 2017, scan in the march 3 liver mets back and bowel tumour.growing. Devastated! Bowel surgery may 2016. Back on chemo FOLFOX for 3 months. Bad reaction this 2nd cycle, scared! Starting Folfiri next week. It took me 3 months to stop feeling scared because it seemed to affect me more than the initial diagnosis. We can just hope the chemo will do its job, my oncologist said if it worked first time there is no reason for it not to the second time. :x::x:

Julie

I dont know if I am replying correctly Clancy and Baxter 2 to your kind messages and many thanks I feel like a flake for not coping when I hear your situations. We only found out on Thursday so not seen any oncologist yet but I will be on it first thing Monday. Good luck for the 17th :) hope all goes well. And I agree I feel this news is harder to take 2nd time around, Brian did have a really good response to chemo first time around so i know i need to find some positivity just feel physically sick with worry and waiting for appointments is the worst thing. :x::x:

Baxter2

Hi @Julie If you reply to someone, just put the @ symbol just before their name with no spaces and they will get a notification that you've replied as I've done with your name. Please don't feel in any way bad for feeling the way you do! Please believe me, I have my moments (or days sometimes) when I really don't feel in control or coping at all. Looks like we three are in a similar position @Clancy. All we can do is take each day as it comes and hope for the best outcomes. Sending you both lots of love and strength ????❤️

Julie

Hi @Baxter2 thanks for the info and love and strength to you too. :x::x:

Clancy

Hi @Julie and @Baxter2, we have to provide comfort to each other in any way we can. All we want is some kind of normality isn't it? Whatever that is now. Certainly a life changer this cancer business. I do feel that if the chemo has worked once @Julie with good results it will do so again. My oncologist, liver surgeon, bowel surgeon, and specialist liver nurse gave me faith in that. We will get there.:x::x:

Julie

@Baxter2 @Clancy I didnt realise what a control freak I was until everything is out of your control. Im used to planning even planned to go Cyprus in a villa 15th of October as thought all treatment would be finished, with my two daughters and granddaughter, my mum and dad have booked in a hotel close to the villa and now I dont know if we will get away and all so looking forward to it. :x::x:

ZoeM

Round 9 of chemo this week for my husband, we have been given 1-2 years prognosis..... he is sadly not eligible for any additional chemo drugs except folfiri due to the type of tumour (NRAS wild type) can someone please tell me what this means in layman’s terms (rest of diagnosis is T3C N2 M1) again everything I read online is a mine field!!!!!!!!
Any info would be lovely.... thank you
Zoe

GD62

Hello @ZoeM

Sorry to hear your news and similarly had 12 months prognosis and it's now six months into that, but still working and trying to live normally. I have a large candle burning in my kitchen window for all our forum members current and past from Walsingham.

Sending you positive healing thoughts and hugs :x::x::x:

Daffodil

Hi @ZoeM , did you dip into the booklet that @Brian recommended? You might find some answers there. If you scroll to the bottom of this page you will see a box labelled Publications and Factsheets. Select that and then you can choose which booklets you would like to download. Another one that might be helpful is Your Pathway, it has information about the drugs in there. :x::x:

SuzyB

Hi @ZoeM I have supported my Dad throughout his journey. I have read everything to hand and talked to as many different sources as possible for info and reassurance just like you. Have you spoken to the Nurses on here or your husband's Cancer Nurse, they have a wealth of information. My Dad has KRAS wild type, and received Folfiri followed by Folfox as second line until Christmas 2015. We were then told in August this year that the metastasis had returned to his liver. He was offered Lonsurf as a palliative chemo but declined.
Things are changing with research every day and as my Dad has proved (we were given 24 hours in February 2015 due to the tumour perforating his bowel) a positive mind and the will to live goes a long way.
Sending you hugs :x::x::x:

JudyN

I am in the same boat as you, we were told on Friday Adam has to start palliative chemo. I know what you mean about trying to carry on as normal! But all the time you are struggling to find normal. Love to you both, it looks like we are all on a journey together :x::x::x:

Julie

Hi @ Dan-888 @JudyN
While waiting for confirmation of my husbands bowel cancer diagnosis the GP ran tests including bloods and stool tests and although he was diagnosed stage 4 there was no signs in his tests. After speaking to the oncologist this is quite common and in quite a few cases only shows on CT or US liver which was the case for my husband.
My colleague however has just had a screening colonoscopy at 55 she lives in Bradford. My husband is tomorrow starting Lon surf the last treatment they can offer while Christies are doing tests to try match him to a clinical trial. hope it holds it back for a while its all moving to fast. :x::x:

JudyN

Hello@ZoeM, we too are struggling to cope with a similar diagnosis, and we too are trying to cling to some sort of normal. Nothing is as it was anymore and I feel I am living in a surreal world. I understand just how you are feeling. We are at hospital tomorrow to discuss surgery for a stoma. Thinking of you both :x::x::x:

Sarah44

Really sorry @ZoeM to hear your news- it is such a shock when our loved ones are first diagnosed. Andy was diagnosed almost 5 years ago with advanced rectal cancer - the way I cope is by considering that our ‘normal’ takes on another meaning compared to most people. Not sure if I am making sense! He has had stable disease for the last couple of scans but has developed left buttock and leg pain plus palpable lymph node in his left groin in recent weeks which is a real worry- scan next week and then wait 10 days for results. I dare say we will enter another type of ‘normal’ after this. Effing disease! Hope u are ok :x::x: