Husband's end of life

Hello. I am new here.
My beautiful husband retired last year. I have 2 years to go before retirement. We had so many wonderful plans. Suddenly, my lifelong non-smoker, cyclist, healthy husband has been diagonosed with stage 3A NSCA lung cancer. He has had one round of pretty brutal chemo and 5 days of radiation, the radiation is set to go on for 5 weeks, with 4 more rounds of the chemo drugs. But it’s killing him. He is weak and miserable and upset, he decribes it as a xombie life, and doesn’t want to continue the treatments, which he feels will only give him a 15% survival possibility anyway. Having been through a brutal cancer regimen myself 20 years ago, i know what it is like to feel those feelings and how crap one’s quality of life can be.
I also believe it is his body and his decision, despite how much i want him to do whatever he can to live longer, I need to respect his decision. So we are now talking end of life, possibly in a matter of months. It has all happened so quickly. My mind is running in a million directions. What will I do? Who will I be without him? All the plans we had…the bloody unfairness of it. My best friend, my beloved. I hope this is OK to write. I apologize if not, I’m just feeling like I’m going through grief already and I really don’t know how to handle it.
Thank you for reading.

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Hi, never apologise for what you write here. You are going through one of the worst things anyone can possibly go through. Your poor husband has made a very difficult decision, and you have been so brave to stand by it. Your husband doesn’t want to die, and you don’t want him to die, but you’re both doing what is best for him.

In the “Losing a Partner” category, you will find people of a similar age to you who had their lives completely changed with the death of their partner. If you post there, you will have lots of people who will be able to share with you their experiences of how they have managed to cope once their spouse departed.

I hope you’re able to get some rest tonight, and that the coming few months are not as difficult as they sound they might be. In the meantime, please continue posting here if you think it helps.

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Thank you so much for your kindness, Abdullah. I will look at the “Losing a Partner” category. Peace to you.

You’re quite welcome. “Losing a Partner” gets a lot more views than “Terminal Illness”, so if you post in that category, you will be able to get support regarding your fears of how you will cope when your beloved husband has gone.

Goodnight

Dear Bumppie,
Have you and your husband been given enough information by specialists to make such an important decision? I ask this because you write that your husband ‘feels that treatment will only give him a 15% survival possibility.’ Is this something that he has been told before he started treatment? My mother in law was diagnosed recently with stage 4 lung cancer so I have been doing a lot of research. There is a lot of useful information on the Macmillan website. Maybe you have already asked them for help and support? If not, it could be worth contacting them with specific questions about your husband’s diagnosis and treatment options. Having gone through cancer treatment yourself you will know how hard it is but you also know that when you came out at the other end it had all been worth it. I have never experienced it myself but have seen the effects when I worked as a nurse and I can totally understand that at some point someone decides enough is enough and that they would rather have some quality of life left, whereas others decide to try everything no matter how grueling the treatment is.Only you and your husband can decide what the best thing is for him to do, to give further treatment a go, or not. Either way, I hope that you will get the help and support you both need. Feel free to ask any questions and to post on this site as often as you want.
Jo

Dear Jo,
Thank you for your lovely note and suggestions.
One thing that makes it difficult for us/me is that COVID-19 requires that only my husband be present for treatments/appointments. So I have no one to speak to in person about whether his treatment could be modified so that he’d tolerate it better, to look them in the eye and know whether I’m getting a line of BS or truth. Initially we were told there’d be a care team, and conferences via Zoom, but that has not been the case. So I have some–well let’s be honest, a lot of-- anger, too, as well as feeling helpless.
The 15% likelihood yes, was given to him by the docs. That is for one year survival. Though they say the number is based on typical patients, most of whom would be older and less healthy to begin with. They say he’s “an anomaly.” In any case, my husband feels like-- and I understand this-- that if you have one year, and 5 months of it are spend in this half-life of weakness and pain and despair, what is the point of it?
He has promised me to have a discussion with his oncological and radiation teams this coming week. Perhaps his mind will change, but experience tells me it probably won’t. I know I need to prepare. I know I am already grieving and I don’t want to be crying every other minute in the time we have left.
I so appreciate your kindness, and I will check out the website. I am actually in the USA, for my sins, but I will surely read it.

Karen

And Jo, I am so sorry that your mother-in-law, and your family, are going through this. I wish you all the best.

Hi Karen,

My dad, who had renal failure, was given 6 months to live in August 2018. The renal nurse said dialysis wouldn’t help him, his age and heart failure means it will be so brutal on him, that it is best to just let him die without dialysis. After consulting with another doctor, I decided to go ahead with dialysis, it was the best decision we made. He was still thankfully alive 18 months later, and it was only because of Covid that we lost him.

So please make sure the doctors give you a chance of survival rate based not on generic statistics, but taking into account your husband’s previous lifestyle, as that can greatly affect how one might cope. My dad was a non-drinker, non-smoker, who always ate healthily and walked a lot even till his early 70s, not your “typical” older person with heart failure. Your husband seems to have had a very healthy lifestyle too, so they should try and take that into account. Yes, predicting the chances of survival isn’t an exact science, it is very difficult to do, but you and your husband should be given a range of survival rates - what if they say his chances of survival for a year might be up to 40%? Would that then change your husband’s decision?

At the end of the day, only your husband can make this decision, but any decision he makes should be based on a more detailed analysis of his chances of survival, and not on some generic figure that the hospital has provided.

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Dear Karen,
Sorry to hear that due to the Covid situation you are so restricted in what you can do and who you can speak with. I would keep nagging the hospital for the promised Zoom call. It is the least they can do.
The situation her in the UK is similar. My mother in law was in hospital for 10 days, with no visitors allowed at all, but at least they arranged regular Zoom calls with the family.
Here is a link to one of the Macmillan pages about lung cancer:


Jo
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I feel so sorry for what you must be going through. There are some hard decisions to be made but it must be your husband’s choice as he is the one suffering. Sometimes just letting them go is kinder to them but devastating for you. Either way there will always be support here for you so please make the most of every precious day and say all you need to say between you while you can. It will mean a lot in later years when you look back.

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Hi there
My heart goes out to you, it really does.
My husband was diagnosed with Cancer and there was no treatment offered to him as it had spread. We was left to get on with it with however long he had and me being interested in Natural Therapy I began to learn all I could about helping him, we simply had nothing to lose. However the doctors were very dismissive and one asked me how I knew it would work. I asked him how he knew it wouldn’t. Another said I knew more about the subject than he did.
My husband lived for another ten years and two months and most of that time he had a good quality of life. He was a walks leader with the Ramblers. We cycled regularly, rock climbed and had allotments. Hence a diet high in fruit and veg.
His diet changed drastically and vitamins were taken in abundance. He was a bit suspicious at first but came to accept it.
So I would say don’t give in and find out all you can and of course the Doctors do have their own expertise which they are experienced in, do not close your minds to other types of help, which I found we had no encouragement with but they did agree later that my regime had kept him alive years longer than expected.
Good luck to you both.

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Patti talks about an important topic. There is a lot of pseudo-scientific nonsense in complementary medicine, but don’t let that put you off alternative treatments altogether.

A few years ago I was listening to a phone in on a British talk show on Radio Five Live, it was about cannabis and cancer, at the beginning I thought it was complete nonense, but caller after caller called in, telling how their relative who had been given no chance of survival from cancer did manage to survive.

Now this is an area which still requires a lot of scientific research, but there does seem to be some evidence that cannabis might help with certain cancers. The research is very limited however, and cannabis isn’t approved by the FDA. It is however possible to use cannabis for medical reasons in some states, including yours, New Hampshire, and there is evidence that cannabis can help reduce some of the symptoms that come with cancer.

We are correctly not allowed to give medical advice at these forums, because we are not qualified medical professionals. However, I think given the sad situation that your husband is in, it is important to make you aware, in case you are not already, of what other options are available to you, so that you can do your own research and discuss them with your medical professionals.

Hi there Bumppie
I don’t want you to think that I tried any weird therapies to help my husband. I was under no illusion that I could cure him but I did introduce a regime to try and improve his immune system, which consisted of diet, vitamins and exercise and fortunately he had a positive attitude. He had three ops in four months of which I nearly lost him, not for Cancer but they found it during one op. He was very weak, and ill and desperately under weight and at this point beginning to give up. I could get no help regarding his general health and was dismissed when I tried to discuss it with Doctors and GP’s but this was eleven years ago and I think they are more open to discussing lifestyle changes nowadays… I could not sit back and do nothing and wait, so I went ahead and did my best and fortunately it worked. He became stronger and healthier. He remained fit and well until his last year.
I will thinking of you both. Good luck
Pat
xxx

Hi Patti, what you did was great, alternative and complementary treatments that do not contradict medical advice should be tried, like what you did. There are however some people that try to make money off fad diets and treatments, and this can put people off alternative and complementary treatments altogether, and so my message to her was not to let it put you off, and that maybe you should research what else you can try, and then discuss it with husband’s doctors.

Dear Bumppie, I am so sorry that you are going through such a terrible time, I understand how you feel, having my dear husband pass away from pancreatic cancer in June this year. He managed to survive for 3 years but all treatment broke his body in the end, I too was suffering anticipary grief which was very difficult to manage because it is also grieving whilst they are still here. Of course its awful because you try to hide it from them. But my husband got his wish to die at home. Thankfully he went peacefully. Take care of yourself and keep strong. God bless Margarita

Hello

I’m new here too.

My husband too diagnosed stage 4 lung cancer on 1 st Feb. He led a healthy life and was in Spain in Dec to sort paperwork for our retirement- he is just 60 and I’m 56. It’s turned our lives upside down. Currently in hospital and I can’t visit.

It’s the shock and realisation as where we have found ourselves in which is so hard to accept.

Everyday is a new day - it’s just so very very hard.

Sendings lots of hugs to you.

Christina 2 and bumpie
Sorry to hear about your partners
How are you doing
Hope you both are now the lockdown start to lift.

Hello Devi

I only had the funeral last Thursday and Mt husband had only passed on 13th March within 6 weeks of being diagnosed.

My days are long. I don’t want to venture out but today I went for a walk.

Not sure how to make sense of it all as I’m so overcome with Grief. At no time was I told he was at end of life and was due to get treatment and to be discharged… 3 weeks could not go to see him WhatsApp was a godsend but I had 1 hour which was so special- he waited for me he did not pass away alone.

Everyone here has or are going through tough times but it’s a day at a time.

Christina

Hello Christina2
I am so sorry that you husband has passed recently it is only a couple weeks.
I thought you both will have the opportunity to be together longer.
Unfortunately the feeling are do raw now for you, take your time don’t rush.
It is the time when the shock of the situation hit us.
Days sometimes are very long and they are like a dream but try to rest and sleep.
I am glad to hear that you were there with him in that special moment. I hope you find a bit of consolation knowing that he knew you were there by his bedside.
When the grief overwhelmed you talk with Samaritans try to get the counselling in Sue Ryder , cruse also has a bereavement support.
Stay in this community and write share your experience.
If you want to talk i am a good listener
Take care of yourself

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