Husband doesn't know how bad things are

On 16th March we were told that my husband has cancer. Following more tests on 29th we were told it was stage 4 and had soread to lymoh nodes liver and lung. Then on 8th April we met with the oncologist. Tom didn't want to hear so he left the room, at which point I was told that it has spread much further than that and he doesn't have very long as he only had about 12% liver function. I have never lied to my husband about anything but finding it so difficult to keep this to myself. He should be the one I talk to about this, but keeping him hopeful will hopefully keep him with me and the kids a little bit longer. But I am a mess. People are constantly around trying to help and support me with the day to day things, but I have never felt so alone. Trying to get Tom to write cards and do videos for the kids but he can't see what the rush is. How do I cope? Everytime I look at him or our children it breaks my heart that little bit more

Hello EventualDiamond,
Welcome to the Sue Ryder Online Community. I'm so sorry to hear that your husband does not have long to live, and that you know more about his prognosis than he does. It sounds as though this knowledge is a really hard burden for you to bear.
I'm glad that you've found our Online Community, and I hope that it helps even a tiny bit to be able to get things off your chest here. There are others here who know what it is like to have a loved one with a terminal illness, so hopefully you should get some supportive replies soon.
In the meantime, if you would find it helpful to talk things through with someone one-to-one, Macmillan Cancer Support have a helpline that you can ring for expert information or emotional support on anything to do with cancer - 0808 808 0000.

It's a difficult situation and it takes me right back to when I was in that position. I think it's quite important that your husband didn't want to know the detail and, unless he specifically asks you, maybe it should remain like that, in line with his wishes. Until the final few weeks my wife was involved in every discussion with the surgeons, oncologists, radiotherapists, etc. As she became more confused due to growth of the brain tumour I decided to only relay positive messages and could see no purpose in causing additional distress. Although the doctor gave me an idea of how long she had it turned out to be wrong. It wasn't about telling lies, as there were no absolute facts.
My wife didn't write cards or make videos and I didn't want to increase her anxiety by mentioning it, despite the fact it had been her intention. Maybe I was over protective but the only thing that mattered to me was that she remained as peaceful and pain free as possible, and everything was geared to avoiding distress.
Looking back I don't have any regrets as to the decisions I made.
It's really difficult to remain positive and encouraging at such a time but I feel it's probably the greatest kindness Unfortunately there aren't any right or wrong answers.
I hope you can gain some peace of mind.

I am so sorry for the position you find yourself in. My heart breaks for you. I agree with all YorkshireLad has said, work hard now to keep your husbands spirits up. My husband was diagnosed and it wasn't good. It really annoys me when doctors start telling people how long they have to live. We wanted non of that. I decided to do everything I could to keep my husband alive and worked on Natural Therapy, I searched for everything I could on the subject My husband went on for another ten years most of that fit and well and I was told it was a miracle. So all I can say is don't always take as gospel what the Doctors say.
In our case though the tables were turned. Unknown to me the doctors were giving my husband medication in his final year and I never knew. When he went to the hospital he insisted on going alone and always told me that everything was alright. He obviously was lying. Suddenly I noticed how frail he had become. When I lost my husband I found bags of empty drug packets hidden away, I never knew. I felt betrayed, angry for all sort of reasons. However his doctor said I had kept him alive for years more than he should have lived but in the end he wanted to go his own way. Brian was protecting me in the end. Be there for your dear husband. look after him, show him your love and above all continue to keep him hopeful. My husband and I talked about the future and what we would be doing, we remained positive. I laughed with him, held him and then in the background I cried but never let him see this.
Keep posting, you will not be alone, we all know your pain, we are here for you. I will be thinking and praying for you both. Pat xxxx

Dear E
I feel your pain so deeply. I lost my beautiful daughter aged 29 in December 2018. Myself and her dad knew the outcome was bad but we also knew that Em didn't want to know and it helped her to get through the last few months living with some kind of hope. The fact that your husband left the room is a clear statement that he doesn't want to know yet He may suddenly change his mind but for now keep on letting him have that small hope. Our loved ones aren't in denial that just choose to cling to the hope of a miracle and why should we deny them that. Keep on writing things down, take lots of photos, encourage him to see friends and family when he feels strong enough. He might suddenly ask you about the prognosis, my daughter never did but she did speak of some things that alluded to it. I wish you and your family all the love and support .
K

Hi. I was in the same position and used the Macmillan help line for support, information and advice- they were fantastic.
Although Alan did not want to know anything negative about his illness and always had hope he did know he had cancer and like all of us knew it can be life threatening. One afternoon I just used this fact to say let's do some practical things just in case and we all should have these things in place anyway - e.g. will, type of funeral, burial vs cremation etc. I did mine the same day. We never spoke about it again but it was such a relief to me. I hope this is helpful Sending you lots of love and strength x

So sorry for the position you're in, we didn't know how poorly my husband was, he'd never had a day's illness, barring colds and flu, he was admitted to hospital May Bank Holiday last year, the following Monday I was told he'd be coming home the following week. On the Thursday one of the doctors took me to one side and told me further tests revealed a malignancy, he passed away 38 hours later. Neither of us knew he was so poorly, he'd never see a doctor and hadn't in over 40 years, except when we needed Yellow Fever jabs for our holiday to Kenya.

I didn't want the doctors to tell Alan the results , they insisted it was his right to know. I pleaded with them not to tell him because I knew what that news would do to him, at that point I didn't know he only had hours to live. I wanted to protect him.

After the doctor gave me the bad news, I.had to compose myself and go back to his bedside as though nothing was wrong. It was one of the hardest things, if not the hardest in my life but I had to stay strong for him. It broke my heart to keep the truth from him. The doctors still insisted he had to be told, when the time came for them to tell him, thankfully, they realised he wasn't in a position to fully understand what they were trying to tell him. They approached it with tact and didn't actually tell him. Si even.up to the end he didn't know, I had to use all my strength to pretend he was coming home, myself and our two children (both adults) stayed with him all day and night, they left me at 6am and I spent his last 45 minutes alone with him, I was able to talk about personal feelings and whilst I was falling apart inside, it was also a very calm and beautiful. That was 11 months ago last Friday.

All I can say is, be strong for your husband make his final moments with you as beautiful, happy and peaceful as possible, as LancashireLad wrote, try not to pressure him into making videos and writing cards, take each day at a time and with each day you have together, cherish them.

I truly hope you have as much time together as possible.

Blessings
Jen☆

I'm so sorry to hear about your husband. My hubby after no symptons was diagnosed with stage 4 cancer in Feb 2018 and it's devastating. I wanted him to do videos but he didn't get round to it and was so thin towards the end that I'm glad he didn't, he passed away in Oct 2018. One night as we lay on our bed we voice recorded him on my phone and he said a few words to both our children (21 and 23) about how proud he was of them. He also said he loved me. Our daughter had a build a bear with Chris's voice saying "I love you" made for me at Christmas. It sits on my bed and every morning and every night I listen to a Chris's voice. The kids have their recordings but at the moment they don't really listen to them much. Spend your time trying to enjoy and getting the best out of your time together and make lots of memories. Sending love and strength to you and your family Miki xx

I’m so sorry ... I’m in a similar situation. My husband had pleurisy diagnosed and was poorly or four weeks being treated by gp. I had to get an ambulance for him three weeks ago ... he has been in hospital since ... has cancer in his spine, ribs, back, lungs, prostate, bladder, liver. He is dying. He has never had a days illness in his life never used to go to the doctor etc. Both our sons have died aged 33 and 36. It’s unbearable. Trying to get him into a hospice ... he is in so so much pain. Sending you love and understanding, Sue xx

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