I posted about a month ago, soon after my husband decided to end all cancer treatments. I thought I'd post an update as some might find our experience helpful.
We decided not to do any more imaging as it wouldn't really tell us anything that we don't already know: that the cancer is progressing rather rapidly at this point. My husband has been dealing with leg pain, spasms, and weakness since February--it started right after his for Moderna shot--so initially we thought that the pain was somehow related to the vaccine, but subsequent blood work showed high levels of inflammation but nothing that would tie it directly to a vaccine reaction (Sed rate, C-reactive protein, and ferritin all very high). He is also quite anemic: weak, short of breath, and high pulse rate (over 100).
We have initiated hospice referral but haven't met with them yet. Asked our doc about a blood transfusion but he's not sure that would be covered under hospice.
The pain and weakness began to become unmanageable as his narcotic pain meds weren't providing adequate relief. Increasing prednisone helped, but not much. A week ago I asked the doc if gabapentin might help--he started on that and wow, what a difference! Clearly there has been a lot of nerve involvement, no surprise given his extensive spinal mets. Anyway he's been having much better days on the gabapentin and we are hoping this might continue for a while.
We borrowed a rollator which allows my husband to be mobile around the house and yard. Peripheral edema is an issue--we try to balance times up and moving around with lots of time with his feet elevated. He's doing some gentle PT as lack of mobility is exacerbating the leg & hip stiffness. He has trouble getting comfortable in bed so most of the night is spent sleeping in the recliner. I got a sheepskin for the recliner which helps to reduce pressure points.
Our priorities are: 1) pain management; 2) mobility (keep moving, gently, with lots of rest; 3) frequent naps/rest time 4) nutritious, calorie-dense, tasty food; 5) keeping our spirits up: visiting with friends, reading to each other, watching nature shows and comedies, etc.
We've taken care of final arrangements, advance directive, and the POLST form. We have talked with his doctor about how he wishes to die when the time comes. We're going around the house and yard and he's telling me about all the stuff that he has been taking care of, and how I can either do it myself or who to call to do it for me. (I'm using that as an excuse to take long videos of him, as he generally dislikes having his picture taken).
In some ways it's unimaginably hard, and in other ways it seems right and natural to be spending our last days like this. I have the luxury of being able to be home every day with him...we have a lovely garden to sit out in and visit...we have friends bringing us meals and checking in on us. We have known this time would come someday, and we are so blessed that we have everything we need to make this time together peaceful, gentle, and joyous.
Wishing Peace to all who are nearing the end, and to those who are walking this path with them.
Every Day is a Gift.
Stay strong in your Love for each other. 🙏❤️🌟
Written by
WildRose6
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Thank you for sharing such an amazing update. You both are in our thoughts and prayers. May God bless you and give you comfort and peace during this challenging time.
My heart dropped for a minute and then I was very relieved. Thank you for this detailed post. There's so much good info, the best being you are both doing so relatively well. I wish you both my best and I truly hope these next stages take a very long time.
Oh WildRose6, this reminds me so much of my husband and me. I know how difficult and painful those days are. You laugh, smile, and make the best of it, but I know there are also many tears happening. And that's ok. I still remember when Cleodman held me and told me, "let it all out." I am glad to see that you are taking videos of him; They become gold. Also, make a list of all the things he is telling you. Cleodman made a house list for me. It has been my saving grace. Make sure you have all his passwords also. I am also glad to read that he got all his affairs in order. I can't thank Cleodman for doing that before passing.
I know you are already doing this but, tell him you love him. If there is anything unsaid...this is the time.
I wish I could stop time for you two
Keep enjoying each day...I am sending you both a big hug.
I'm glad the gabapentin has helped you, it has helped me immensely. Share and cherish every minute. My wife and I are working hard to hold everything together as you are. I am not near my end yet, but working to get everything done. Bless you and thankyou for sharing your life/love/end time. It means so much to all of us.
That was beautifully written... it brings both tears and smiles. Thank you.
There is an emotion I never knew existed until a few years ago, and I call it "gratitude." I experience it first as a loss of something I held dear (for example, knowing my grown kids will never be little "kids" again), but then I am struck by an overwhelming sense of how lucky I was to ever even have that which I miss so much.
If I am not crying and laughing at the same time, then I don't call it "gratitude." I think another term for it is "God's grace." Even when the cancer seems like a curse, that doesn't change the fact that everything that came before it, and much of what comes DURING it, is a blessing and a gift.
I've been teaching my boys the chores like strimming and grass cutter (we have 50 acres), filling log shed safely etc. It's nice they're so helpful and that we get to do quality stuff together.
Didn't know they had grass in Estonia. 50 acres is astounding. I think you said your bow and arrow days were pretty much at an end. Wishing you the best.
The international competition side is over for me, I still get to shoot/compete on my home range. I just got myself a PCP Air rifle (accurate to 100m), I'm looking forward to playing with that, advantage being no walking to collect arrows. My eldest boy (12 years) is really enjoying as well.
Thank you beyond measure for relating your calm, natural approach to the endgame, and your suggestions on managing pain. You are an angel, not only to your courageous husband, but to us all.
My wife and I are just about on the same track. I have an incredibly supportive wife. My cancer has pretty much spread throughout. I have an ostomy, nephrostomy tubes running out my kidneys and partial paralysis on the left side of my face. Not a pretty picture LOL. We are enjoying, and are so thankful for each day that we are given. I really appreciate some of the detail you’re posting about as there is a lot of information that needs to get passed along to my wonderful spouse as to house management. Videoing is a great idea. The ending time is hard and you two seem to be doing it well. Or at least as best as can be handled in such a difficult transition. We have been blessed with a great love for each other. I pray you’re time together is blessed and marked with lots of special memories and that the time is pain free and full of peace.
Steve, thank you. Yes, the practical daily matters are important but often not as widely shared. I hope your wife has people she can talk to and share her daily struggles with.
Blessings to you and your wife. May you both also make tender memories in these final days, and that both of you find Peace. 🙏🌟❤️
Well I've been doing alot around the house so when I go to that comedy store in the sky my wife and son will have very little upkeep to do.
Before I forget: 1 Diltiazem 30mg when my pulse rate was over 100 (as needed) prescribed by my cardiologist.
Well Mr. WildRose6 (wish I knew his name) is a lucky man to be with you. It breaks my heart to see such a lovely couple have to think of what's in the near future instead of just spending all that time in your wonderful garden. He is a gentleman who wants to take care of you forever. Give him my kindest regards and hug/kiss/laugh with him as much as you can.
Thank you.... My oldest brother's name was Steve and that's my son's middle name. In the even you don't know "Steve/Stefanos" means "crown" in Greek. Again Steve is lucky to have you around. God Bless you all........
Thank you for sharing with us what seems like the beginning of the end for your husband’s pca journey. I hope and pray that when the time comes for us, that we will be at peace and be able to graciously accept and be brave about it like you and your husband are doing right now. Sending you love and light. May God bless you both!
So much grace and poise. You are a strong woman. Much respect. Going with dignity shall be your outcome. Your spirits will be united for eternity. Peace❤️Mike
Thank you for your uplifting post. When this time comes for my husband I will remember your grace and poise and take inspiration from your love and caring. I hope the rest of your journey is well managed and that your loved one is pain free and peaceful.
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