Hubby has terminal bowel cancer & cant discuss my fears with anyone

Hi I am new here - This hasn’t happened to us yet but my husband has pancreatic cancer with mets in his liver - he has been given a similar if not worse prognosis - the whole thing is terrifying tbh, we are also having palliative chemo and we keep our fingers crossed that he can keep it up at every blood test - can you not speak to a specialist nurse and ask questions - this does not have to be specific to him I am sure they can tell you what could happen if the treatment is postponed or reduced in general terms. You can also speak to nurses on this site and ask medical advice -   I just wanted you to know u aren’t alone.

Thank you for your advice. Sorry that you are going through this journey too. I work full time & have only been able to attend the appointments with the consultant. After the first appointment when we were given the news i did manage to speak to a nurse then but wasn’t thinking clearly & didnt know enough then to ask the right questions. My hubby was quite upset with me at the last appointment that we physically had with the consultant because I asked about a lymp that had appeared on his back, thankfully unconnected, he is an ostrich & I respect his way of dealing with it. I will try & call 1 of the specialists nurses as you advised as he has given consent for them to speak to me. Thank you so much 

That’s okay -everyone handles this in their own way and like u said you need to respect their wishes.  I don’t know your financial situation but please have a look into PIP - speak to the nurse she need to fill in a SR1 form for you to confirm his diagnosis  and prognosis but you can apply for him, I also work but the extra money and an understanding boss has allowed me to reduce my hours to attend appointments etC anything that may help.  

Thank you for your understanding. He is in receipt of OIP , esa the MacMillan welfare officer sorted all that for us thankfully & my employers gave been supportive too. I’d only started 3 weeks prior to cancer diagnosis then received the terminal diagnosis 7 weeks later. My husband is 49 however I turn 65 very soon so trying to get through to state pension age as I don’t have a private pension. I think at the moment I need to know what it will be like when the tome cones will he get more chemo after this course. My hubby is so up beat in front of friends that i feel i can’t talk ti them about my fears & how overwhelmed i feel as they say things like “ oh he could live 20 years when i know he wont. My husband’s parents are elderly, my son is in the armed forces & away & never asks how we are & my daughter has had her own problems. Reading this back i sound so negative but all I really want is someone to listen & acknowledge how i feel too 

I recognise how you feel with this. I also get silently annoyed when people try to claim my husband will pull through as if they've not really listened to the position we are in. I have resorted to email conversations with friends (behind my husband's back) after we have met up, to set them straight on where we really are, in case they were taken in by my husband putting a brave face on for them. One of my greatest fears has been that I'd have to tell friends he had died, only to hear they had not understood how ill he was - that was my motivation to pick one or two to start briefing on the real situation. I felt awkward doing it at first, as I would really rather he would say, but it has allowed me to tap into a network of people who would come over to sit with him if needed, while I went out, as they now know the real situation. I don't like the role of having to be the realist, and worry like you that I sound like the doom-monger, while my husband truly needs to believe he will be the exception who will get a surprise complete treatment response, despite all the evidence to the contrary. He is living completely in the moment, just getting through today's challenges, while I have to have one eye on the future that I will face without him. You need to be heard and supported too - I hope you find that.

Hi thank you for your reply. You have helped so much knowing however awful I am not alone. You have given me food for thought. I really feel for your position and reach out to give you a virtual  

Hi, apologies for jumping in, but I feel I’m in a similar situation. My partner has been diagnosed with Stage 4 Bowel Cancer and has started his Palliative Chemo. 
I feel like he is completely oblivious to this and is adamant he will get better. On the other hand, it’s me his children, parents and friends are asking for updates on what’s going on. I feel that I can’t tell them, but then (as someone who recently lost a parent to cancer) I think they need to know. 

It really is difficult my love. My husband puts a great display on to everybody including me, but at times the mask slips. I need to know what’s happening and where we stand as I need to prepare myself for the inevitable.  Although my husband is only 49, and I am a little bit older children, a grown-up independent, but he’s had such an impact in their life and they are feeling it. He’s told them that he’s never felt better. Wait to restart the chemo but it’s a different tail with me as he said if they don’t start it this weekend he doesn’t want to restart it at all. I don’t know if this is just bravado and I know it’s his way of coping, but I feel as though if I haven’t got the right information I can’t help or support him or people can’t help or support me which I do need. It’s a hard line to walk. I wish you well in your journey journey. You don’t wish to travel and I hope you get the support you need to help you with this. Big hugs

Hi Happy Chic and Plum

I am trying to support a friend who has been a lover on and off for 15 years. He won’t tell his family or friends about me for various reasons so I am only able to be there for him in the background. He had his bowel removed last year and now his Bowel cancer has spread to his stomach with multiple spots all over. It’s not operable and they’ve given him ‘less than 5 years’ so he’s just started his second round of chemo but the first session made his mouth and throat severely ulcerated. He’s lost about a stone in weight and was already slim. He’s been in hospital with an infection so on antibiotics and now he’s home and seeing the oncologist tomorrow after todays bloods to discuss next steps. I’m also scared they’ll reduce chemo strength or have a break as they already took one part of his mix out to avoid the mouth ulcers.. he’s lost so much ground in the last few months. 

I am totally alone as I cannot talk to any of his family or friends about how he’s doing or go with him to any appointments or take him to treatment.  I’m terrified of the future having nursed my mum in 2016-2017 with lung, liver and spine .. she only lasted 6months from diagnosis. I know already what is coming for him and struggle because at some point he will be staying at home or hospital or hospice and no one is going to let me see him because why would they. He’s so worried what people will say but all I care about is doe dumb time with him especially now while he’s well enough to still make memories and enjoy life. I know I sound selfish and I am sorry but it’s an excruciating, emotional and scary place to be right now. 

Happy Chic .. I hope you find a way to discuss your fears with your man.. it’s likely just fear of the unknown and of the choices that’s holding him back. Love will find a way.. it might just take a little time for him to be where you are and be able to talk about it. Xxx

Plum.. the words palliative care scare the bejesus out of me. I’m waiting for him to use them .. I knew from the start it was coming. I don’t know how I knew but when it all kept coming exactly as I thought I started thinking I was bringing it on him with my ‘prediction’ even though I never voiced it to anyone. 

I can say though that I have known relatives of friends who have done 20years+ on palliative care so I should be braver and you can hope .. it does happen even when they don’t think it will. Hope is what keeps us all going .. even me in the shadows. 

I hope you don’t think I am too off topic and my situation too bizarre to talk.. but I will totally understand if you do and do not wish to engage. I wish you all love, healing, hope and happiness for your lives

No topic is too bizarre Hanbanan look at the life we are living. We all need someone to comfort, support, hug & cry with us. We still haven’t spoken but I have managed to tell him I am scared. Tomrow its bloods so hopefully his kidney function will allow treatment to start again. All i can say is my hubby is fighting. I feel for your position & sometimes its the fear of not knowing what isoing on that is the worse. I hope you can build your memories & hope there is a way you can be more involved. to you