My husband was diagnosed 16 months ago with lung cancer. He’s never smoked and was/is still well. He’s had chemo that lasted 6 or 7 months then went on a trial. He has an adenocarcinoma with a rate mutation Exon 20. The drug Amivantamab was the first targeted treatment for this mutation and it has held thing for again 6 months but the last scan shows progression to liver bones and brain . Treatment has stopped and we are hoping for something to just hold it a little longer.
I have just absorbed we are now terminal rather than treatable . I want to make the most of the precious time we’ve got but I’m a mess . How do you stop grieving in front of them?
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Hi, I am so sad for both of you and no matter what I say it will do little to help. I was in the a similar position and kept telling myself that I had still got him here with me.
Live each day as though it’s the last, love each other in every possible way and keep telling him how much he means to you.
Don’t look for anything, just enjoy. Use every single moment and turn your grieving into useful action.
There will be plenty of time to grieve but now enjoy. Forget what the medical people say just live. Remember tomorrow is another day no matter what arrives in those early hours. Please just enjoy what you have today. God bless you both my thoughts, love and blessings to you both. Sxx
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Thank you Susie for your kind words. There is some comfort that we are not the only ones going through this.
I have had a wonderful life with Andy, he is the most caring loving husband,father and grandfather which only makes this more painful.
Trying to make these happy days but sometimes just feel overwhelmed .
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Yes, one can’t always be positive when you both know the end result. Please keep in contact and let me know how things are, you can always send a private message if that’s helpful. The community is always here for you and I do know that things will not always be bright and sunny. Just try to smile when all you want to do is cry. Just tell him how much you love him and what a beautiful life you have had together. xxxx
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I will! How do I private message?
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Hi GPJ1
May I first say, welcome to the site here Sue Ryder the place none of us want to be, Well done to you for joining and asking for help,Im so sorry to hear about your husband
Diagnosed with lung cancer,and the progression to now the liver and bones and brain.
I really can’t answer any of this for you,but I couldn’t just pass you by,
The way I didn’t show my Beautiful Lucy how much I was grieving was having a shower and letting it out,or go to another room and close the door for a few minutes,and come back refreshed although Lucy knew exactly what I was doing,but it helped me,I didn’t want to see me breaking down I had to be strong for both of us.
I really am tearful reading What’s happening to you and your husband.
Susie123 offers some fantastic advice and has been there for me and thousands of others like yourself helping along the way,
Remember,we are all family here and all here for you
I’m sending you and your husband lot’s of love and hugs
Lucy and Martin xx xx
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Oh bless you Martin.
I’ve never been one for asking for help but this is something I’m struggling with.
It’s is a real comfort to share this experience. In the early days I always felt the best people to talk to were those who had been through the same thing. Everyone means well but sometimes I felt that they saw Andy differently once they knows he had cancer.
We have always been so close and have never kept anything from each other. Now ironically he is the one comforting me.
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Hi GPJ1
You made the right decision coming on here and asking for some support,I too struggled for many months since my Beautiful Lucy 
passed away in my arms Wednesday 20th October 2021
12.10pm you are totally correct,the best people to talk and turn to are those that have gone through this heartbreak, others do mean well,but they are not going through what we are going or went through,it’s very sad that they don’t but that’s human nature,I know when you say
Other people see Andy differently knowing that he has cancer I to experienced, that with Lucy almost as though you are a lepha,and it was catching, Lucy and me were like 2 peas in a pod, a couple of so called friends but for our 27 Year’s Together we preferred our own company,We to never had any secrets,we loved and adored eachother so very much,
Lucy was comforting me like your Andy is you,Such strength, courage,love they have for us and us for them.
Please remember we are all here for you and you must take care of yourself,Andy doesn’t want to see you like this,Relax in a bath or shower, please eat and try to get some sleep,if you read my posts you will see what happened to me Thursday 26th May 2022.
9am
Sending you And Andy And Family lots of love and kisses
Lucy and Martin xx xx
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You’re a star! I’m trying not to cry but you had me at it again! In a good way.
Thanks
Gill x
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Bless Your Heart Gill, I’m glad it made you cry in a good way,We Are all here for you and eachother
Lot’s Of love
Lucy and Martin xx xx
My Mum died at the end of October last year. I still cannot believe she’s gone and I’m heart broken. I feel so scared and disconnected from people around me.
@GPJ1 I am so sorry you are going through this, I am in a very similar situation and the shock, disbelief, anger etc is very real.
I have had no support over recent weeks even hospital admissions were difficult as the empathy is not there anymore from nurses & doctors. I was told I was experiencing anticipatory grief and I have now been put on a short waiting list for professional counselling to see if it helps.
The days get longer and darker and if I can offer you any words of wisdom please don’t try and cope alone as it becomes overwhelming start your search for help and support as soon as you can and accept any offers.
There are some wonderful people on this forum that will be of brilliant help to you as they have to me so keep reaching out and if you would like to message me privately at any time please do as I am probably having the same emotions as you.
Sending you a hug …Jen x
Thank you Jen, my heart goes out to you too.These are feelings and emotions I never wanted.
Andy has been my best friend as well my my lovely husband. He is the kindest man and the best Dad and grandfather. He is so loved that the thought of losing him breaks our hearts.
I am lucky to have the support of a great family but It still fills me with dread , the thought of being without him. This is the cruelest disease.
Happy to talk anytime and sending you a hug back.
Gill
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Dear @GPJ1 Gill,
Just thought I would drop you a line to see how you are, this is such a cruel disease as you say and it casts us adrift with emotions. You must feel some relief that you have people there to support you but I know that night times are the hardest. I lie awake for hours crying and wondering why this is happening to the point where I feel like my heart is going to break. I am lucky to have an adorable cat & dog that always come to me when I need a hug but it’s not the same as when my husband used to wrap his arms around me. He is so weak now that he struggles to even touch my hand.
My thoughts are with you and everyone out there going through this
Jen
Thanks Jen, where is your husbands cancer? Andy’s primary was lung inoperable as it had spread to the other lung. Since then it’s has spread to his liver bones and brain .
He looks so well that it’s hard to acknowledge what’s going on. They have stopped him driving for fear of fits but apart from the occasion stutter he is as yet unaffected by any neurological symptoms .
We are totally realistic and know it’s probably months but just wish that the oncologists could say one encouraging thing.We feel so depressed after speaking to them.
I’m not looking forward to the time it really takes hold we just hope it’s quick and kind.
Wouldn’t wish this emotional journey on my worst enemy.
@GPJ1 hi Gill,
Mike started with colon cancer, we got the all clear following surgery many years ago but it came back in multiple organs and despite years of rounds of chemotherapy it’s not been controlled and now he isn’t well enough to receive any treatment at all. Oncologists are very negative people in my opinion, I often think they get sadistic pleasure giving people bad news.
I watch adverts on tv about how much everyone will be there every step of the way blah blah and can honestly say in our experience we have dealt with this on our own and it’s exhausting. The type of cancer Mike has is known to be a slow progressive killer and it’s living true to its name.
I pray every night that he would just go to sleep and not wake up as watching him suffer is excruciating. The nurses who literally drop in are very blunt and matter of fact so I often reach out to the Macmillan helpline and they comfort my desperate pleas for help and genuinely listen and care.
I apologise if this sounds quite negative and hope that you and your family get kinder support
My sincere best wishes Jen x
Oh how sad it is! Poor you and Mike . We are in Herefordshire and the care is pretty good but I have to agree just one uplifting remark from the oncologists would be nice. I’m actually sat outside the unit waiting for Andy to have a bone strengthening injection. Feels like this is all we do now . One appointment after another.
We had a fabulous life loved to travel and get away so I must be grateful.
I’m not religious but I really hope Mike has a peaceful journey. I know exactly what you are feeling.
Sending a hug, keep in touch.
Gill
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Hi Gill @GPJ1
I lost Mike yesterday, he spent the last 2weeks in hospital & his body just couldn’t fight anymore. It has broken my heart seeing him desperately trying to stay alive in the last couple of days and held him close as he left me yesterday morning. I thought I had prepared myself but I am in utter shock whilst bracing myself for the next part of this journey.
I thought of you today & hope you don’t mind me letting you know.
Jen x
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Dear Jen
This is the saddest news.Not for Mike who is beyond anymore suffering but for you left without the one you love.
My heart aches for you , I expect like me you have rehearsed this many times but as you said not really prepared for how it really feels when it happens.
I hope you have family and friends around to support you. This is a new and unwanted next phase of life. I hope the pain goes away and you can remember better days.
Sending you lots of love and hugs. Please keep in touch.
Gill x
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I had this experience with my partner who had pancreatic cancer. It was tremendously difficult and I did cry a lot, but i used that modern cliché -mindfulness. Live in the now. Make good memories. Don’t feel that it might be the last time you do xy and z. My partner died a lot sooner than expected, had I have known I couldn’t have enjoyed the last weeks we had together. I’m glad that we could enjoy them. The other thing is don’t worry about crying in front of them. Your husband, if he realises how much you love him, will know you will be upset, and holding back tears only makes it worse. I think there’s only so much crying one person can do so when you need to cry, cry. When you are doing things together that you love you can and will be happy in the moment. Massive hugs to you xxx
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