Hello

My husband has terminal cancer. Wow that bought tears to my eyes. 

He had his left lung out last year, now has more cells showing in other lung and also areas of bone cancer in his back in lung removal scar area.  He's had radiotherapy to try to help with the excruiating pain he is in (between 8 out of 10 to off the scale every day). That was months ago and the pain just increased and tummy injection didn't help either that he has every four weeks.  (He's had about four or five now).  Zomorph, Ketamine don't help and is just taking Oramorph (about 45ml every few hours). 

On top of all this he's had an underlying chest infection for about nine months, taking anti-biotics and intravenious ones too.  Now been diagnosed with Cryptgenic organizing pneumonia. 

Was supposed to have a nerve block yesterday to try to help with his pain but consultant advised that injection has steroids and would very likely make the infection flare up.  Yet he is also taking steroids for the COP (pneumonia).  His infection has flared up again with a visit to hospital, to be told he needs an anti-biotic called something like Martaprenem as he's had Ertaprenem and didn't work.  However, the Micro Biology department won't give the authorisation to the doctor.  Sent home with oral anti biotics which the doctor told us won't do any good.

I really do wonder which I am more - desperate for help, angry, worried sick or scared as I feel my husband is losing the will.

  • Sorry about your husband.

    As a terminally ill person myself, I think there will come a time that we will just have to accept our fate. I think thats a significant part of having a peaceful, stress-free death process.

     

    Personally i find it very stressful and scary everytime my family ask me to stay "postive" and fight on. They always become very angry and rebuke me everytime i say that ive come to terms with my up coming end and their attitudes really stress me up and make me angry and bitter.

    It seems like they are obligating me to undergo and endure the stressful and painful death process of cancer til the very last of my breath. For me its a  form of psychological (and physical torture). I dont want to hurt my loves ones by giving up but at the same time I still want to die peacefully, stress-free, pain-free with my dignity intact.

     

    We terminals have a lot of things to think about, our impending death, our love ones that we will left behind, the torturous pains associated with the disease, financial burden of the treatment, etc... so understanding and acceptance from our love ones are welcome solace from all the mental worries and fears we have to endure. 

     

    Im not saying you should give up (and as much as possible you shouldn't) and i understand the pain of losing someone you love. But death is inevitable and that is a fact of life, when the times come, acceptance and letting go are more welcome for us terminally ill people than relentless coaching and cheering for our recovery... at least in my experience.

     

  • Hi Donna and "Joyful Journey"

    I too, am on the one way track to dying with cancer. At present, I am not feeling too bad overall, having some pain, discomfort, very fatigued. The worst is yet to come for me. Most days I think I've come to terms with my impending death. I'm not afraid of being dead; I am afraid of the journey to get there. I know what you're saying Joyful, about family and well-meaning friends, wanting you to soldier on. I've been dealing with my various cancers now for almost 7 years and it has been a rough ride for sure. I've had so many surgeries, treatments, scans procedures, etc. that I've lost count. I had a frank discussion with my oncologist yesterday and we put it all out on the table. He knew that I wanted the goods up front and answered my questions honestly and forthright. I like this guy and he has really come to know me over the years. I told him when I reach the point where I'm done, I want access to Assisted Death. He said he would help me with that.(Here in Canada, the Supreme Court has made it legal, with conditions.) He won't do it himself, but will arrange for me to get it. What a relief! The people closest to me understand and support me, but some family members are horrified; their problem, not mine. I respect their right to decide for themselves if and when they face my situation and I expect them to respect mine. They don't have to agree with me. I/we have gone through so many family members and close friends who have suffered intolerably with the end of life pain with cancer and I was the one usually there holding their hands while they begged to have someone help them to end it for them. Back then, Assisted Death was not legal in Canada; now it is. There are worse things than death.

    Donna, my heart goes out to you. I'm sure its' tearing you apart to watch your husband suffer so much with this terrible disease. I know you want to keep him with you as long as possible, but at the same time, you don't want him suffering like he is. I've been where you are and it is one heck of a place to be. I am so sorry for both of you.

    As I said, my discomfort is tolerable and I still do have some quality of life doing some of the things I still can enjoy and as long as that continues, I'm good with living on. I am so much more content now, knowing that once things become more than I can take, I have some choices. What a difference it has made for me to have that reassurance. I respect all terminal cancer patients to make there own choices when it comes to end of life decisions. It isn't a decision to take lightly to end one's life and certainly, a lot of thought has to be given before making that decision. I have been involved in working with organizations who have been petitioning the government and decision making officials to have this law on Assisted Death put in place. It only happened in the last year, so I have given this a lot of thought and consideration. As a result of this law, Palliative Care here has been so much improved which is so beneficial to those who choose to allow death to happen naturally. Money has been forthcoming to financially improve end of life care in all aspects so a lot of good has come out of it.

    I hope my post isn't upsetting to people here on the forum. I respect everyone's right to come to terms in their own way and on their own terms. All of us certainly have burdens to bear when it comes to cancer, whether our own, or that of a loved one. I wish every one all the best on their own journey.

    Hugs.

    Lorraine    

       

  • Hi Lorraine,

    I kinda envy you for living on such a wonderful understanding community. In my country we don't have a functional health care service so everything here are sky high expensive. They also offer very little options in terms of cancer treatment. When my doctor offered an expensive (im not rich) treatment with 3% 5 year survival rate i concluded that its not worth it. I rather invest it on some pain medications and palliative care which are another problem on its own. Opiod is a taboo subject here and its pretty hard to find a doctor who have a license to prescribe morphine.

    But all is not lose for me i guess. I heard that pneumonia is a relatively pain free and stress free way to die. They say its "the old man's friend", and people who died from pneumonia often died peacefully in their sleep. Nature sure has its way to show its compassion and mercy on us cancer people with very little options.

    When the time comes, Ive decided to go on such a route, my only problem now is convincing my family to accept such plan.

    I sure hope that no one will be upset of my post.

     

  • Hi there Joyful, I guess we are fortunate here in Canada,at least to some degree. Things here move too slow some times, but overall in comparison, we do have opportunities that are not often found in other countries. It took a long time to get Assisted Death on the books and its' here finally. Its' not ideal for all illnesses and some of those will require applying to Court. We have Universal Health Care and it is quite good for the most part, not perfect for sure, but much better than before it was brought in. Treatment for cancer is quite good, but there is always room for improvement. Chemo, Radiation, and of course surgery is covered, but not all drugs for cancer are covered and like you say, the expensive ones are out of reach for most people. We have government sponsored drug plans that we have to pay for monthly, plus a co-pay and not all drugs are covered under this plan. It could be a lot worse though, I realize that.

    I hope you are able to exercise some control over your end of life care and that it can go the way you would like it to. As for your family, surely they can get past their own personal opinion on dying and all that it involves, to give you the right to do what works for you. Has your family had much experience in dealing with death and dying, especially deaths from cancer? If so, surely they have some understanding for what it is like to linger on at end of life. I wish you a peaceful journey with this terrible disease and when its' your time, I hope it works the way you want it to.

    Take care my friend.

    Lorraine 

  • Hi Donna, I didnt mean to intrude on your post. My heart goes out to you at such a difficult time. I know you must be struggling with your husband being so ill with with terrible disease. I hope you will gain some support from others here on the forum who are, or have struggled with a similar challenge. Please come back to the forum and let us know how things are going for you and your husband. Just writing about your fears and concerns is very helpful in and of itself. Getting responses from other forum members is very helpful as well as there are many people on here who have been in a situation such as you are now dealing with.

    Take care and all the best to you and your husband.

    Lorraine

  • I hear you, I was diagnosed a year ago, and all is well now as far as I know.  I cringed after the hundredth person told me to stay strong.  I am not afraid to die, I thought until the C word entered my life and then I found out I was more than terrified.  If it comes back I don't think I could go through the chemo and radiation again as much as I don't want to leave my family. Live throws all these challengs at us and I guess we all deal with it differently.  I found that prayers from others really helped me, I truly do believe in good thoughts and love from others.  God bless you, Linda

  • Thank you all for your frank and wonderful replies which I sat and thought about........ lots.  Result was a frank discussion with my husband to say he's not to fight for my sake.  He was so overwhelmed by my statement, although I said though tears.  You are all so right, the cancer sufferer shouldn't have to suffer any more than necessary, especially to please family members.  

    He has a CT scan this Thursday and MRI Friday to see what has gone on with the cancer in this last three months.  

    I really do appreciate your replies and send big hugs to you all xxxx

  • Hi Donna,

    I'm glad you managed to have your discussion with your husband. At least there's now less chance of any misunderstandings. 

    I had a similar conversation with my wife quite early on in my cancer journey. For as long as I feel there is hope of meaningfully extending my life, I will do whatever it takes. Sooner or later I know I'll reach the stage where I will need to say enough. I went through a similar experience with my Mum who fought cancer for several years, but eventually reached the stage where the benefits of chemo were outweighed by the side effects with almost no chance of improvement.

    Best wishes

    Dave

  • I hope that it will help you to focus more of your efforts into enjoying your moments together and making things as comfortable and stress-free both for your husband and yourself.

     

    Clarity, peace of mind, and unconditional love.

  • You will find your dear husband is excepting his fate b4 you do . I had the same with my beautifull mother she excepted what was going on . You want them to fight to stay with you . But when this vicious thing takes hold of your body when it reaches a certain point you have to except what is going to happen . I could except or believe right up until the night she past with me by her side . A feel for myself I struggle more now ( a year and a half after she died ) because I couldn't except at the time . It's the hardest thing you can do you need to except my sweet it's not giving up on him it's just being along side him on this part of the jerney . Make what moments you can count and love him and look after yourself . Give him your support  in what you call losing the will all the best will in the world can't fight this if that were true my beautifull mum would be with me today . It's a painfull jerney for you and your husband . Snatch what good you can and see the husband you know and love not the cancer take care and love him all the best kim xx