Bowel cancer primary -liver secondary

Marella2023 over 1 year ago

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Hi , I recently posted about my partner - now husband who has been diagnosed with bowel and liver cancer . We were able to fast track our wedding which was a beautiful day .
We saw oncologist last week , I feel we’ve been living in our own bubble surreal but just us and we’ll still can’t believe what’s happened, happening do t want to believe it but I know it’s us not someone else that’s it’s happening to …, sorry feel all Over the place and what I’m going through is a complete and utter understatement to what my lovely husband must be going through . Diagnosed 23rd Dec… colonoscopy showed large tumour . Boxing Day rushed into hospital with abdominal pain , stoma fitted the next day , cft scan confirms the cancer has spread to his liver and mri arranged to see how bad the spread is .
liver biopsies done a week later as ones done in the colonoscopy were inconclusive. Husband picked up a cough whisking hospital has had 2 lots of antibiotics and cough is now clearing up I hope ! Oncologist last week - can’t do chemo until cough clears up but awaiting liver biopsies that are sent to Birmingham looking for markers - bowel cancer had a marker - genetic said 50% treatment? So he’d inherited it from his dad , this is the primary cancer . Spread to his liver - 25 nodules in his liver 2 quite big . Bloods done to check functions of his liver and kidney before chemo . He has no spleen - removed when he was a young boy as he was in an accident. So immunity is already an issue . We were told that the cancer is aggressive. She had said that would be chemo , targeted therapy possibly immunotherapy Received appt for oncologist for 9th Feb.
Can someone please advise maybe anyone out there has had similar experience or explain things to me . I know everyone is different, I feel my husband isn’t being positive - that there is hope . I believe that there is always a chance however slim but a chance.
Then family around us trying to see him before any treatment starts and i feel they think he hasn’t got long ! Then his older daughter who hasn’t bothered with him for years , his grown up children have made very little effort to have him in their lives not bothered not a hi dad text or how you doing dad and now he’s very poorly the oldest daughter is coming to see him . Maybe it’s genuine but when I hear the things she says … like have you done a bucket list ? Why are they just leaving you like they’ve forgotten about you ? When she asked how long he had 3-12months plus she said well sounds like you haven’t got very long left to live ! All this is really stressing me out and I feels like telling them all to do 1 as they aren’t genuinely considering how he feels or myself . I love him so much and it’s breaking my heart all this … my head is all over the place and I feel everyday it’s an uphill struggle . I want to plan things give us something to hope for … he says he’s worried about paying the mortgage- we have no life insurance that pays the mortgage if one of us dies he couldn’t there was something on his medical notes … sorry I’m ranting but just need help with all of this . He’s getting PIP and MacMillan nurse comes in .I’ve asked to be referred for counselling I geel

like I’m grieving already maybe I am of a life we had planned and can no longer have . He’s 61 and I’m 58. So many questions … can anyone guide me /us … help please

Onk over 1 year ago

I am so sorry to read this. I have incurable ovarian cancer which spread to my bowel and liver. I had an op just over a year ago and l also have a stoma. My situation is very different from yours. We are all unique. I hope somebody with a similar diagnosis will reply to you soon.
But l do understand what you are going through. We can be strong but none of us are super human. I do think it is important to be positive but also realistic about the outcome. I used to ask for a prognosis - But l don’t ask now.
The whole experience is totally overwhelming. Looking too far into the future doesn’t help. It is honestly better to deal with the problems that you have now and try to make the most of the life you have together.
Unfortunately friends and family are very unpredictable in this sort of situation. Most can’t handle it and many say or do the wrong thing. Some will phone or visit more. Some will stop altogether. Don’t worry about them and ignore thoughtless comments. Who needs a bucket list? I just want a nice simple comfortable, easy life. We all do.
lt is very important to get all the help you can get. I had counselling through Macmillan - it was brilliant! My local hospice has been great too. Hospice’s are not just there for the last weeks of a person’s life. We have Macmillan booth at our local hospital, l often stop and chat.

On my darkest days/nights l have phoned the Samaritans. I also contacted my vicar, even though l wasn’t a church goer. He was wonderful too. Reach out to this few friends and family who you can talk to and know will be supportive.
These days l live happily from day to day - make sure you find at least one thing to have a good laugh about - even if it is something ridiculous on a YouTube. I hope this helps in some way and l wish you both the best of luck

court over 1 year ago

Hi Marella2023

They are getting some great results with immunotherapy so hang on in there .

Congratulations on your wedding . How special is that !

You clearly love him and that’s wonderful . Unfortunately you can’t filter off the unhelpful comments at time but with time they start to matter less although at the beginning I found them jarring .

I think they call it anticipatory grief. You are facing it whilst the person is still here and fills you with the depths of sadness as you are also trying so very hard to hide it and it’s so draining . However it’s certainly not the end of the day and I realised one day I had to stop grieving as my mum was very much alive .

With his compromised immune system people also bring some lovely germs so you do have to factor in the volume of people who see him . All his decisions but where and when he sees them matters . Check with his nurses but if I remember correctly there is a point in the cycle where his immunity is lower . Maybe best to have some quieter days at that point .

Soon he will be starting to address the spread with treatment and it helps .

Court

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