Tom Galli Posted September 17, 2020 Share Posted September 17, 2020 Steve, I believe you made the right decision in choosing hospice. We have a one story ranch house so there were no stairs involved. If you have a multistory home, you might consider having a hospital bed placed on your bottom floor. Stairs and hospice treatment don't mix well. Also check to see if hospice will change the bed sheets and blankets every visit. I was told room temperature regulation would be a challenge as hospice care progressed. Your wife may feel chilled in otherwise temperate room temperature. Stay the course. Tom Link to comment Share on other sites More sharing options...
LexieCat Posted September 17, 2020 Share Posted September 17, 2020 Hi, Steve, I'm sorry, of course, for your and your wife's situation, but I agree it sounds like you made the right decision. And I always think making the decision in itself provides a measure of relief. Sounds like you've got a lot of good support around you--remember to ask for help when you need it. Sending hugs of support to you both. Link to comment Share on other sites More sharing options...
D iane Posted September 17, 2020 Share Posted September 17, 2020 Best wishes to you Steve. I trust you will have time together. You can only stay in the moment. That's what we did. Link to comment Share on other sites More sharing options...
MyWifeSCLC Posted September 18, 2020 Author Share Posted September 18, 2020 Some things that I have forgot to post: Although my wife's memory is still not so good, it has improved. Since the Memantine meds she has been on for the past several weeks does not improve memory we believe the chemo brain has finally worn off. Chemo was completed in mid April and the chemo brain seemed to have lifted about 2 weeks ago so this means about 4 1/2 months after chemo. My wife has had a month of not having to have Mg IVs. All her salts are good and steady now. As you will recall she has had ongoing K, Na and Mg issues which are typical for small cell and the ensuing treatment. This means about 4 months after chemo for salt stabilization. You may recall that my wife has had high blood pressure issues and sometimes low blood pressure. Her blood pressure appears to be very stable now in the 1teens and 120s over low 70s and heart rate in the low 70s. Over the last several months it has come down from the 140s to the 130s, etc. As you can see things were trending good (except for the weakness) so it was certainly a shock when we found out about the liver metastasis. I didn't get to talk to any doctors about the trends but my opinion, the primary cancer tumor shrinking and being stable for about 2 months have contributed to the above. Symptoms from progressive liver metastasis will most likely be popping up soon, if not already. Steve Link to comment Share on other sites More sharing options...
MyWifeSCLC Posted September 20, 2020 Author Share Posted September 20, 2020 Update: just a little more confirmation of hospice as the right decision - although we have crying moments, my wife seems to feel better about things right now. She seems to smile a little more now and perhaps she is settling in with the decision a little better than me. Temps were in the forties this morning (east tennessee) when we got up at 5:00 AM. My wife asked me to make a fire and we drank coffee and talked about life and the things we have done together ... It was an incredible moment for me ... I guess I am sharing this to let folks know a spouse can get comfortable with end of life decisions. It may take a while sometimes. There is not a lot of small cell stories that go well but I hope to give others some thoughts if they have to go through this. I'll keep posting things that may be important. Steve P.S. I don't think I have mentioned that the docs said 2 to 4 months, unless some non-liver cancer related problems pop up. Link to comment Share on other sites More sharing options...
LexieCat Posted September 20, 2020 Share Posted September 20, 2020 Thanks for sharing this, Steve. I'm sure it will be reassuring to others to know they can have some really meaningful time with their loved ones after the shift in focus to comfort care. I hope you have many more together and can build some wonderful memories. Link to comment Share on other sites More sharing options...
BridgetO Posted September 20, 2020 Share Posted September 20, 2020 I also want to thank you for sharing this. I hope some stress will be relieved for both of you by not having to worry about how/whether treatment is working or what side effects it may cause. on Focusing on comfort and getting the support of hospice workers may help to make your time together more meaningful. I wish both of you comfort and peace. Bridget O Link to comment Share on other sites More sharing options...
Judy M2 Posted September 20, 2020 Share Posted September 20, 2020 Steve, I know how difficult this decision was to make. I hope you will take advantage of all the services hospice offers. Not just medical and palliative care, but other support, including spiritual even if you're not religious. These people can be such a comfort and they have seen it all. Your hospice social worker can help with all their resources. Hospice will also provide all accessories your wife might need, like a hospital bed and shower chair. Just ask and they should deliver to you. My 98 YO father has been under hospice care for more than a year now and he has improved, even though he has congestive heart failure and COPD. Our hospice company has been wonderful and responsive. I wish you both peace during this time. Link to comment Share on other sites More sharing options...
0621121974 Posted September 23, 2020 Share Posted September 23, 2020 Steve - I am so sorry to hear this news. I appreciate you sharing your story. Small cell is horrible, and you are absolutely right, there aren't a lot of SCLC success stories, and I know at some point I will be in the same situation with my hubby. Thank you for sharing and I am praying for peace and comfort for you and your wife. Link to comment Share on other sites More sharing options...
just me Posted September 23, 2020 Share Posted September 23, 2020 Hi Steve, I have followed your journey . My husband has tumor spread to his brain, and afteer a craniotomy to determine diagnosis, they are recommending WBR. He is so weak, it has been suggested we contact hospice. I am not sure I am ready for this. After reading your post and seeing your wife's relief, maybe it is the next step for us too. Enjoy your time together. just me Link to comment Share on other sites More sharing options...
D iane Posted September 24, 2020 Share Posted September 24, 2020 Steve and just me Please know I am thinking about you both. Anything I can do, please let me know. I am currently still using those coping skills of cherishing each and everyday, staying in the moment, that's how I am living. I just had to go in for a diagnostic mammogram and then they took me back for an ultra sound. I really hate cancer. I am OK so they say. Still having scar tissue changing by comparison. I've already had one biopsy since my treatment ended, which was benign. That's how I started this horrid year of 2020! Nerve wrecking but I have to remember I'm getting excellent follow up care and trying not to worry about anything until I have to. One blessed day at a time. Take care Link to comment Share on other sites More sharing options...
LUNGevityKristin Posted September 24, 2020 Share Posted September 24, 2020 Thinking of you and your wife, Steve. Please let us know if there's anything we can do. Link to comment Share on other sites More sharing options...
just me Posted September 24, 2020 Share Posted September 24, 2020 Steve and Diane, I think of you too. This cancer is horrible. We have refused whole brain radiation and hospice has been called. In 24 hours he has lost all ablilty to take care of himself. Steve I wish you the best with your wife. Diane praying for you that your mammogram stays clear. Just me. Link to comment Share on other sites More sharing options...
BridgetO Posted September 25, 2020 Share Posted September 25, 2020 hi Just me, I'm sorry to hear about your husband's sudden decline. I hope hospice will be a support to both of you, and that you booth can have peace and comfort. Bridget O Link to comment Share on other sites More sharing options...
MyWifeSCLC Posted September 26, 2020 Author Share Posted September 26, 2020 Hi Just Me ... I am so sorry to hear your husband has declined. My wife and I were so scared of brain mets that we decided on brain radiation soon after chemoradiation. We were so focused on the lung cancer shrinking, no brain Mets and improved blood work that we were shocked at the news of liver mets. I guess the bottom line here is that health is a key issue for continuing treatment. Every time my wife's health started to improve something knocked her back. Ultimately her health never recovered enough after chemoradiation to have additional treatment. I do hope you and your husband have some meaningful moments with the time you have left. Steve P.S. I made pancakes for my wife this morning and you would have thought I had made a birthday cake. Link to comment Share on other sites More sharing options...
Blossomsmom Posted October 31, 2020 Share Posted October 31, 2020 Steve, Not sure if you are checking in on here but just wanted to let you know I’m thinking about you during what I know is an incredibly difficult time. Hoping for strength and peace for you and your wife. Erin Link to comment Share on other sites More sharing options...
Lisa Haines Posted November 1, 2020 Share Posted November 1, 2020 It sure does suck and you are right it's not easy! Thankfully, they are so many new improvements in treatment Lung Cancer these past few years and I sincerely hope wife will find a treatment that works well for her SCLC. I happen to have NSCLC, but had an excellent response with Immunotherpay and know that are now also using it for Small Cell. Hopefully, it's something for her to think about, if needed! Sending your both positive thoughts and best wishes for successful treatment. Lisa Link to comment Share on other sites More sharing options...
MyWifeSCLC Posted November 6, 2020 Author Share Posted November 6, 2020 Update: it's been 2 months since my wife left hospital for hospice ... She is completely bedridden now. Recently, I have noticed her sleeping more and eating less. Hospice sends out a nurse and someone to bath her on Mon and Thu. I've learned to let them bath her fully on these days and I wash certain areas everyday. Fortunately, bed sores have only been minor. Unfortunately "diaper rash" has cropped up recently. Her skin is very fragile and constantly bruising which scares me. She has always bruised easy but this is nuts. Lots of small clear bandages when skin breaks through (not bed sores). She was having quite a few headaches so I was worried about brain mets. Recall she had brain radiation (HS-PCI). The nurse took her off Dexamethasone recently and that seems to be the trick. The nurse did tell me that sleeping more and eating less is a sign of deterioration. As I mentioned in a previous post, we are hoping to get through Christmas. Steve Link to comment Share on other sites More sharing options...
LexieCat Posted November 6, 2020 Share Posted November 6, 2020 You're a great husband and partner, Steve. You're both in my thoughts. I hope you're able to make it through the holidays. Are there no suggestions from hospice for her skin condition? Link to comment Share on other sites More sharing options...
Rower Michelle Posted November 6, 2020 Share Posted November 6, 2020 Steve, I am so sorry that she's going through all of this, hoping the hospice care team can keep your wife as comfortable as possible. My prayers for peace to you. Link to comment Share on other sites More sharing options...
Tom Galli Posted November 6, 2020 Share Posted November 6, 2020 Steve, Thank you for reporting your beloved wife's hospice experience. Our community has so little insight into this treatment condition and we are learning through your dilligence. I pray for you both each day. Stay the course. Tom Link to comment Share on other sites More sharing options...
GaryG Posted November 6, 2020 Share Posted November 6, 2020 Steve: As I said earlier I have been in your shoes and understand and feel what you are going through. When my first wife was treated by Hospice at home, pain and all, she looked forward to the day the lady come to give her a bath. One day Hospice suggested that it was time to move my wife to a Hospice facility where she was given morphine and kept comfortable till the day she died. I hope and pray you get strength and will to cope the best way you can. Best wishes. Link to comment Share on other sites More sharing options...
LUNGevityKristin Posted November 6, 2020 Share Posted November 6, 2020 Thinking of you and your wife, Gary. Please let us know if there is anything we can do to support you. Link to comment Share on other sites More sharing options...
BridgetO Posted November 6, 2020 Share Posted November 6, 2020 As Tom said, it's helpful to hear what you and your wife are going through with hospice. Thank you for posting this. You are indeed a wonderful spouse and partner. I'm thinking of both of you and I hope you have peace and comfort. Bridget O Link to comment Share on other sites More sharing options...
Judy M2 Posted November 6, 2020 Share Posted November 6, 2020 Steve, thanks for the update on your wife. You may want to mention your wife's skin issues (and possibly text a photo) to the hospice nurse. Their pharmacy should be able to deliver something for it, possibly even a diaper rash cream. At this point, her skin is very delicate, so be extra gentle. Also, they make special cushions for pressure wounds (bed sores) that you can order from Amazon. I ordered one for my 99-year old father and can get you a link if you need it. Rely as much as you need to on the hospice provider. You need lots of their support right now and that's their mission. I hope your wife is comfortable when she is awake and peaceful when she is sleeping. Take care. Link to comment Share on other sites More sharing options...
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