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Stage 4 Cancer - Chemo Treatment has been cancelled

Stage 4 Cancer - Chemo Treatment has been cancelled

Posted by ValMul on Oct 27, 2020 1:57 pm

My husband has 4th stage bladder cancer, now in his liver  and lymph nodes was told yesterday he no longer can be treated with chemo.  He now has 2 choices, being immunotherapy or palliative care at home with doctor visits and extra nurses coming in. We are confused on what this really means.  What time does he actually have now.  What do we do with this time?  How do we tell our family and friends.  And the worst of all is how do we say good-bye to each other.  He is my rock, and I am his, we do everything together.  We are getting through covid19 because we can do it together.  I shut my phone off so I wouldn't have to talk to family and friends yet.  We cannot come to grips with it.  
Our battle began on August 3rd, it isn't even 3 months yet, but he has lost weight, he is exhausted, he has a yellow tone to his skin, no appetite, on pain pills. He has nephrostomy tubes that have been a problem. He tried the chemo but failed being able to handle it.  His liver has been damaged.
We have to make a decision on his treatment, do we try the immunotherapy?  Will that buy us more time together?  Will we have some quality of life? 
 

Re: Stage 4 Cancer - Chemo Treatment has been cancelled

Posted by Treepeo on Oct 27, 2020 3:51 pm

Hi ValMul‍ 

I am so sorry to hear about your husband and what he is going through.  All I can suggest is that you speak to his oncologist about immunotherapy and what to expect from it.  Then your husband can decide what he wants to do.

I have Stage 4 breast cancer, and my oncologist wants me to restart either chemo or immunotherapy (if he can get me in on a compassionate basis) come the New Year.  I guess I will do one or the other, but quality of life is important as well.  So if it becomes too much, I am going to stop treatment.

That is the dilemma those of us who are metastatic face.  Do we opt for more treatment and put up with the side effects, or do we opt out of treatment and accept that our lives will likely be cut short as a result?  There is no right or wrong answer.  It is a personal decision, and a very difficult one at that.

You are your husband have some serious thinking to do, but hold off on making any decisions until you know what immunotherapy will entail.  You need to make an informed decision.

My heart goes out to you and your family during this difficult time.  Sending you cyber hugs.

Re: Stage 4 Cancer - Chemo Treatment has been cancelled

Posted by ashcon on Oct 27, 2020 4:15 pm

Hi ValMul‍ 

I'm so sorry to hear that this has progressed this way for your husband. I can certainly appreciate how hard this must be, especially that you are each other's rocks in these tough covid times.
Treepeo offers some great perspectives. I'm also wondering about the either/or choice you were given. Is it not possible to elect for both immunotherapy (if it looks like a right thing to do) AND palliative care?
I've heard of folks in palliative care getting cancer treatments while also managing quality of life, and living longer because of this approach.

These links may be of some help in the coming days and weeks:
Webinar: End of Life and Palliative Care in the time of Covid19
This discussion in Caring for Someone With Cancer:  https://cancerconnection.ca/discussions/viewtopic/35/66469?post_id=332295#p332295

I don't blame you for putting the phone away at this time.  Taking the time to regroup, learn the option available, and leaning on each other before you engage the rest of the world makes sense.

Do either of you have access to the Social Worker at your husband's cancer centre?  They are great to talk to for emotional support, as well as a place to tap into other resources and support systems for both of you.
---- "Nothing ever becomes real till it is experienced." ----

Re: Stage 4 Cancer - Chemo Treatment has been cancelled

Posted by Brighty on Oct 27, 2020 4:19 pm

ValMul‍  I'm heartbroken  for you.   Excellent  advice from Treepeo‍ .   After a talk with your oncologist you  have a big decision  to make.      As someone  who lost her partner  to stage 4 cancer  I understand  how heart its a wrenching it can be to let go.     All the memories,  the time that was ripped away that should have  been ours.     It is so unfair.     Although my situation  was  different  , in the end it was either letting him suffer as a vegetable  or taking him off life support.   He was only 42 and too young to go .  But to prolong the suffering was not a choice we could consider.  He would not have wanted to live that way.           The last few months he had no quality  of life and I decided  to just spend time with him and live in the here and now.      
spending time reminiscing,  looking at pictures  and making memories  is a good way to be with him.    Listen  to favorite songs together. . Share recipes.. watch TV together. .just spend time. let him take the lead of what he wants to do.   And when you're ready open up and let others in to support you.    Thsnk you for letting  us support you and we will be here for whatever  you need.     I want to introduce you to @@westcoastsailor
and @kuching (sorry my phone not tagging)   who can offer their perspectives . .both lost their partners  to cancer.... as well as @kims1961 who has experience on end of life matters  and will give you great advice.     
 
Help is out there. All you have to do is reach out.

Re: Stage 4 Cancer - Chemo Treatment has been cancelled

Posted by Kims1961 on Oct 28, 2020 7:16 am

ValMul‍ Your post is so powerful and you have some excellent responses. You are not alone.

I see that you also had cancer, over 20 years ago? Now to find yourself as a caregiver and during COVID must be so hard .

Do you have some support for yourself as well? A trusted family/friend that you can share with? Good for you with the phone , setting boundaries is reclaiming some control in such a difficult situation.. I’m also glad you reached out here.

Facing stage 4, in such an abrupt way doesn’t give you time to just breathe and consider the options yet. Can you meet with both the medical professionals for immunotherapy and palliative? As the others have mentioned palliative care can sometimes open comfort options during treatment.

In a similar family decision, once our family got over the shock of my mother’s diagnosis at 69, we asked her what was important to her. Even had the tough conversation about how she wanted to see her end of life. It seemed having the tough conversation then allowed us all to be confident in knowing what she wanted and how to move forward. 

We are here. Please continue to feel free to share,vent . Thank you for posting , you have also helped others by doing so. 

Kim
Her2+, ER+ Bilateral mastectomy in 2017, followed by chemo and radiation. Mack and Hannah's mom

Re: Stage 4 Cancer - Chemo Treatment has been cancelled

Posted by ValMul on Oct 28, 2020 8:11 am

Thank you so much everyone!  
I am talking to my husband about opting to get both immunotherapy and at home doctor visits.  Hopefully today we will get the oncologist team on board with us to get things moving.  I cannot just sit and do nothing. If the treatments don't work we will still have the doctor visits to help us make decisions.  
Wishing all of you the best in your health, certainly is a difficult time.


 

Re: Stage 4 Cancer - Chemo Treatment has been cancelled

Posted by Essjay on Oct 28, 2020 8:46 am

ValMul‍ You sounds so much more positive today. I have no advice, just virtual {hugs}. Essjay xx
Triple Negative Breast Cancer survivor since July 2018

Re: Stage 4 Cancer - Chemo Treatment has been cancelled

Posted by Lacey_Moderator on Oct 28, 2020 12:32 pm

Good to hear back from you  ValMul‍ . I thought you might find this booklet helpful: Advanced Cancer

Please keep us posted, add us to your support team!

Lacey

Re: Stage 4 Cancer - Chemo Treatment has been cancelled

Posted by WestCoastSailor on Oct 28, 2020 8:35 pm

ValMul‍ 

I stumbled into this thread by accident but see I have been mentioned already. From diagnosis to death, I had about six weeks with my wife after she was found to have pancreatic cancer. I had been diagnosed about four months earlier with terminal lung cancer and male breast cancer. Gah I read that and it sounds so bad. I guess that is the perspective gives you after two years.

That time is so precious in my mind. Until the final hospitalization about ten days before she died, we were filled with hope. We spent time talking and she spent time tracking down old friends to let them not what was happening. We enjoyed the final flush of our dahlias and a few limited fall walks in the trees and by the seashore. As death grew near we played Scrabble together and colored a mandela together. We had some hard conversations about what she wanted played at her memorial service and asked that I try and make it a celebration of life.

Friends came by to say farewell as did family. She handled it with grace and humility as she did many things in life.

If I had it to do again (and I guess I do - for myself) I wish we had engaged the palliative services earlier. I had the typical association with them as the death squad but really they are Pain and Symptom specialists. We had a round of delirium as morphine accumulated in her body. When we got to hospice, within hours they gave me my wife back, managing her pain easily without resorting to morphine. I'm a convert to the point where I ask each time I see my oncologist if it is time to engage with them yet, knowing that time will come with my diagnosis.

You have received some good suggestions. Let me add that immunotherapy is a ray of light. It is changing so many prognosis. If your partner responds, it will be like a new lease on life. Engaging both is an excellent idea and there is no reason why it shouldn't be tried. If it is too much then you will be happy knowing that you tried and not have to second guess whether you should have or not.

Let us help you as you walk this path. It can be lonely but there are a few of us here who have walked it and are walking it. We are happy to have you join us.

Angus
My story: http://journey.anguspratt.ca

Re: Stage 4 Cancer - Chemo Treatment has been cancelled

Posted by ValMul on Oct 29, 2020 5:24 am

My husband decided to try immunotherapy.  Next week the process begins. We have a phone meeting with the oncologist, which is fine, but the oncologist doesn't have the full picture, but he will have his test results. Covid19 certainly changes a lot of things in our lives.
We started to tell family yesterday, again by phone.  My daughter lives in Philadelphia, working long hours right now.  She facetimes with us everyday, but this week she is working late, we say goodnight to each other, and I cannot tell her just before she goes to bed.  
We currently have home care because of his nephrostomy tubes.  We have access to care 24/7 if needed, but a nurse comes in twice a week for dressing changes and other general health care. I can ask for more help if needed for now. 
Thank you everyone for the input, it is helping to have your support and kind words at this time.

  

Re: Stage 4 Cancer - Chemo Treatment has been cancelled

Posted by Treepeo on Oct 29, 2020 11:54 pm

Hi ValMul,

Now that your husband has decided to give immunotherapy a try, I am glad that you both have a few days to mentally prepare for it.  What a whirlwind of a journey you have both been on.  Good grief.  I hope you can get some rest this weekend.  Try to relax and have some laughs.  My thoughts are with you.

Re: Stage 4 Cancer - Chemo Treatment has been cancelled

Posted by ValMul on Nov 26, 2020 7:11 am

My husband George's fight with cancer is over.  He passed away peacefully at home November 20th.  His fight was tough, he was strong, we were so positive he would have more time.  Cancer is fierce.  Cancer took a beautiful person from me.  
We were such a team.  We had the most wonderful 9 years together. We had what everyone else wanted in a relationship.  Facing life without him seems so cold right now. Friends and family are trying to fill the void, but I will need some time to settle in, and to digest what 2020 has done to my life.
The morning before he died we held hands, we played "Let It Be", and we both knew it wouldn't be long. Our families visited briefly on Thursday.  A night nurse had come in for the first time, I was able to get some much needed sleep (6 solid hours) for the first time in weeks.   
Today is George's funeral.  After today life will go on, as if he was never here in the first place for most people.  But for me a huge hole has been created in my heart and in my life.
Keep up the fight everyone.  I wasn't in here very much, but it was good to have a neutral space to share some of the hard things we go through.
 
 

Re: Stage 4 Cancer - Chemo Treatment has been cancelled

Posted by Brighty on Nov 26, 2020 7:18 am




ValMul‍  I'm so deeply  sorry for your loss.    That is so beautiful  tbe memory  of holding  hands and playing 'let it be'. Thsnk you for trusting ys with this news.    Please continue to check in from time to time to let us know how you are.    
Help is out there. All you have to do is reach out.

Re: Stage 4 Cancer - Chemo Treatment has been cancelled

Posted by Runner Girl on Nov 26, 2020 9:28 am

ValMul‍ ,

I am so very sorry for your loss.

When you are ready, please join our Coping with Grief group.  I think you may find it helpful in the days and weeks ahead.

Runner Girl
Never stop believing in HOPE because MIRACLES happen every day!

Re: Stage 4 Cancer - Chemo Treatment has been cancelled

Posted by Lacey_Moderator on Nov 26, 2020 2:08 pm

ValMul‍ 

Thank you for trusting us with the news. My condolences. 

I could tell how special your relationship was from your post. That is a special kind of love.

I'm thinking of you today please reach out again when you're ready.

Lacey

Re: Stage 4 Cancer - Chemo Treatment has been cancelled

Posted by Kims1961 on Nov 27, 2020 6:45 am

ValMul‍ 

Beautiful....the image of you holding hands with your husband and singing “Let It Be’”. We can live a good life and have a good death. What an honour to be able to share this time with George.

I can only also imagine the grief, so am so grateful that you took the time to post here. It goes to show us all that sadness, love, grief,exhaustion can all exist at the same time and sometimes at the same moment.

We are always here for you still. Embrace the love around you....”When the night is cloudy, there is still a light that shines on me”....

Rest in peace, George.

Kim
Her2+, ER+ Bilateral mastectomy in 2017, followed by chemo and radiation. Mack and Hannah's mom

Re: Stage 4 Cancer - Chemo Treatment has been cancelled

Posted by Cherry on Nov 27, 2020 6:07 pm

Valmul
Indeed you have made beautiful memories that you will cherish all your life. May God bless you and give you the strength to bear the loss.
cherry