Life does not end with a stage IV diagnosis (really!)

Patti,

I'm so happy you spoke your mind to the hospice nurse. It's annoying when we're all lumped into a group of cancer patients with a one-size-fits-all response. How could that nurse possibly "know" you after one meeting? Did she think she was going to change your mind about DWD? She was disrespectful, IMO, but fortunately listened to you and change course. I'm sorry you are in hospice and hope from this day on your needs are met, your friends and family are there to provide comfort and that you can continue to live large, as much as possible. We will be with you by your side, throughout and although physically none of can be there, know that we're hear spiritually and emotionally.

I like what DivineMrsM said, you taught that nurse a better way for future patients - that will be one of your lasting achievements.

Amy

Artist, it's not fair that your evening out was marred by the nosy, ignorant, rude questions of that woman. Times when we are happily not thinking of cancer are precious. I made my cancer center stop sending the automated appointment reminder phone calls because they always seemed to come when I was enjoying some "non-cancer" time. You know, a possible answer to this person's first question would have been, "How odd, no, my daughter is fine, thank you." You don't have to be so darn honest and forthcoming. With your move and fresh start -- have you considered not telling anyone in your new town? You have experienced living with having your health status public knowledge. You might try it the other way now and see if that works better for you. There are pros and cons to either decision, but you have the perfect opportunity with the move. If you choose to keep it private, I think the number of people who do know has to be really small, because everyone thinks they can tell just one or two people and when they do, it is public knowledge again.

She is my granddaughter ,my first grandchild.

than you

Satti, I am glad you set your boundaries and expectations for your care right out there from the start. You will have such a better relationship with your nurse now. In the beginning of my Dx I had a small confrontation with my Onc because she contradicted me, not too nicely, and I later proved her incorrect. After I told her how that made me feel we had a much better time. I'm so glad you are feeling much better today. Going from miserably sick to feeling fairly well is like Nirvana!

Divine, You are so correct about many people just wanting the "scoop" so they can report to whoever about MY situation. I can usually tell who they are and it just gets under my skin. So I have learned to put out my "bio" pretty sparingly. It's a fine line to figure out who is truly inquiring from concern and would not want to put those people off. But that nurse the other night was just so loud and in my face, it was super awkward, and it took me a moment to realize she was "looped". We haven't talked to them for several years so why she thought it was any of her business anyway is beyond me. After that I extracted myself as quickly as possible, but still wish I had a quicker comeback. My DH is the king of quick and wish I had his finesse!

Shetland, That's a big YES! I am not telling anyone in my new "hood" about my health. It is in a bigger city but still a small community neighborhood with a clubhouse, pool, sauna ect. You are so right, it starts with a few and balloons into everyone knowing so quickly! I yearn for anonymity! Just a plain Jane regular ordinary citizen. The only reason I filled in the nurse was because if I lied or denied she would find out eventually anyway since everyone knows everyone. So I prefer to tell people the "true" version.

Shutter, You have a good point. I think people try to figure out reasons so they can feel safer too.

Bjs, Are you still in Squaw Creek tonight? Is it wet and wild here in Tahoe or WHAT? High wind, pouring rain, flooded roads, mudslides...Sheesh. Honestly though it gives me hope for another snow day from work tomorrow so I can keep packing boxes! Heaven!

Yes, I know things are progressing, but I will try to live as full a life as I can in the time I have left.

Me in Joshua Tree National Park on Thursday, last week.

I'm thinking of requesting a different hospice nurse. This one just doesn't listen, and operates as if she knows what I am going to say, and interrupts me. She did this 3 times while we were going over meds for which I needed refills, and I stopped and said, I think I need a different nurse, you aren't listening to me. She said something like, 'you are a very special lady' which seemed completely ingenuous and then said, why don't you test me. Say something, and I'll repeat it back. I said, Don't be ridiculous. I'd like you to listen as we're talking, not just when I'm testing you. She said, no go ahead test me. I said I'm not doing that. Just stop thinking you know what I'm going to say, or what you want me say, and we should be fine.

Ugh.

She's not young and/or new.....From comments she makes, I suspect she deals mostly with family or patients who are further down the mental capacity ladder. I feel like I'm in kindergarten with her.

I just don't need the aggravation.

On another note, I wrote a draft of my obituary today. I'm a decent writer but I can't force it. While I was watching the Packers/Falcons football game, it came to me. I sent the draft to a couple of the Death Squad for their review.

Hope you all had the weekend you desire. I had baby therapy yesterday with a friend's sweet, calm, cute 7-month old girl.

Lita and Satti, great photos. I admire you both.

Satti, yes, I think a new nurse would be in order. I don't like that this woman thinks because you are at the point in the disease where you need hospice that it has affected your brain, diminishing your mental capacity. It is the completely wrong approach and insulting to someone who's been tough and tackled living with mbc for years. The right nurse will see you as the whole person that you are and be respectful of that.

Lita57, Love this photo! You are on my list of heroines! MJH

Thanks for posting info about the cruise, Deanna! What a fabulous idea. Wish I could go, but I already have plans for that week in May. If I'm still here in 2018, it would be a fun thing to do, and since it will then be their "2nd Annual" by then, they'll have had time to work out the kinks.

Thanks again.

I thought after my diagnosis in August 2016 life was coming to an end, my ONC told be 2 years 5 years best. I was beside myself with grief, and like many others started to get my end of life documents together to best support my family (Husband of 25 years, 34 yo son, 21 daughter, 20 daughter). It wasn't until I joined this forum that I realized I wasn't going to dye today or tomorrow but could live many years. I want to thank all of you who post on this site you offer so much hope to those with this disease...

Many thanks,

Ronnie

Dlb823, could you pm me the info on the cruise? I think that would be awesome to get a large group to go.

Great advice ladies to Dee, Paul's, and any other newbies. It does suck to warrant advice on how to manage Stage IV, but on this thread you don't have to keep re explaining your situation. We understand. I struggle with being on other boards where women who aren't stage IV are "keeping it positive UNTIL it's all over". Well for us Stage IV's, we don't want it to be "over". We just want to manage life and our feelings well.

I always share my "word" with newbies, and that is "fortitude" which means "courage in the face of adversity. I'd encourage newly diagnosed people to find a word or phrase that resonates with you and keeps you reminded to stay positive. (Allowing for venting periods too of course!) Go forth with FORTITUDE ladies!

God bless,

Shelley--Wasilla, AK

I received a Burpee catalogue in the mail today. The timing was perfect since we have had 18 inches of snow in the past two days and are expecting 8 to 12 inches of additional snow tomorrow. It is nice to be able to look through the catalogue and dream about what flowers I will add to my perennial garden and which vegetables I will plant this spring. I have to admit that when I was diagnosed with mbc in June of 2015, I did not expect to be sitting here todaydreaming of harvesting vegetables next fall. My, how my outlook has changed! I look forward to posting pictures of my garden for you this summer.

DevineMrsM, 60 degrees in Ohio? What a treat that is for you. What kind of apples do you grow? I am sitting here in New Hampshire. Sometimes I wonder why I still live here because I don't enjoy the cold weather very much, but then I look around and realize that this is just "home". I do like to look at the fresh snow when it is still covering the branches of the trees. I feel a spiritual, peaceful strength in the scene much as I feel when I look at the ocean in the summer.