My Husband, My Life, My Love, My Family, My Cancer
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dodgersgirl - You and me both. Can't blame the steroids here, just can't get to sleep.
Sunshine - I hope the spaghetti-o's taste good and the ice cream goes down okay. I wasn't allowed to have them as a kid either. You'll have to let me know how they are.
We are going to be over 100 degrees here the next three days so maybe I'll have to pick up some ice cream myself.
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@emac877 — I found Klondike ice cream sandwiches recently. Yummy. Nice hand held treat with good, soft brown cake sandwich layer and cold, soft Klondike ice cream. Now I want one!
Going to try to fall asleep in a few. Hope it works. Hope you are also able to grab a few Zzzzz’s, too.
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Back home from daughters wedding. It was a beautiful fun wedding and the weather was perfect. Did dance for awhile but suddenly my body said you are done and slowly made my way back to the table with family and friends. Hallelujah it is over!
The next day had a 60th birthday party to go to for my cousin who was in Ontario from Australia with his family. Another great day! When I go to Ontario there are just too many family and friends that want to see you. Wow! Now I have to recuperate a bit. In a couple of weeks my daughter and SIL are coming to the island to our house. Also cousins from Ontario and Australia will be visiting the island!
I tried to read some posts while away. I know there were new progression, hospital stays, further health scares, sleepless nights, pet pictures and ice cream. Hot hot weather is all over.
Hello to everyone. In anyone's pocket who need a little company
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love to all. Dealing with mouth issues!
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Sunshine, what ever tastes good to you and you can eat, do so. Eat like they told you to at the start of cancer. I was told, whatever I could get down was good though it was mostly things like Ensure, got better when off the systemic chemo and bad again after the brain rads. I am greatful to be able to eat now.
Emac, still in your pocket for everything going on for you.
Living, enjoy your upcoming visit with you Ontario family.
Dodgersgirl, too bad I could not regale of tales laundry and soapmaking. Just turning liquid soap to foaming soap. That would put you to sleep early.
Had my visit to niece's apartment, very nice, two cute cats and 17th floor so really good view. .I had a good time visiting with niece. My DB got a job with Oskar Mayer which he is happy about so I am happy for him.
Got my laundry done, waiting for a call from my nurse this morning, usual call nothing bad happening. Watching ads for a bit of money, surveys etc. I already had my breakfast, two hotdogs and two eggs, nothing fancy. Hotdogs done up in the toaster for hotdogs and used my wee frypan. Put some salt and little mayo and ranch dressing. Was pretty good. Only snag I was trying to get the clamps out that I was trying to take the clamps to grab the hotdogs with and they are quite stuck in. Going to take some patience to get out but sure I can do it.
Have a good day everyone and as always, in pockets as needed.
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Dodgersgirl, I remember during chemo my house was never so clean as the three days I was on steroids. The staying awake all night I can do without! I hope you can get some real rest and sleep.
Emac, I’ll let you know. The little ice cream cone went down ok, but I think it had been in the freezer for a while. I found some protein smoothies that I’m able to sip and I may try the SpaghettiOs this afternoon.
The heat in some places is crazy. DH went to visit my dad in the desert. They are choosing pavers for the front courtyard and the back patio. I chose to stay here in San Diego. I think he’s going to get some watermelon for the two of them and they’ll probably go to their favorite Thai restaurant for dinner.
Irish, I’m glad you enjoyed (and survived) your time with family. Wow! That’s a lot of activity.
Hi mel! J
Mara, I agree. Whatever tastes good and I can swallow with too much effort is a win for me. It’s probably not the most balanced diet, but maybe the vitamins and fiber in the Ensure help. I can make a green smoothie, too. I can’t picture the hotdog clamps, but I like the idea of the toaster because then they’d get kind of blistered on the outside.
Had a so-so night last night. The usual coughing and trying to find a position which elevated my torso enough but still let me kind of sleep on my side.
Got a message from neurosurgery to schedule my follow-up with the doc. Had to schedule my MRI and then schedule that appointment with the doc. Those are both on the schedule now. Now I need to call neurology to schedule that follow-up. I think that one can be a video visit.
Waving hi to everyone and especially to those I didn’t mention. I have a friend coming over later this morning to “sit and knit” on our front porch.
Stay cool and safe, everyone.
Carol
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I am still here and reading all your posts.
Pretty quiet on the cancer front. Scans last month still stable. Still taking twice daily Lynparza and getting every 3-month Lupron. Scans right now are every 4 months, so next ones are in October. Dealing with the side effects still. But overall, not too much to complain about, esp with everyone's issues on here. Main issue is the arthritic hip.
I am not a summer person, so I spend my days inside the A/C and reading. Quiet life, but we all know it could be, and someday will be,worse.
Waving HI to all.
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Sunshine, I was never allowed things like spaghetti-o's growing up, either - I bought an organic version (just typing that made me lol) not too long ago, and they were...underwhelming. Hoping the original version tastes good!
Hilarious dream of my husband last night, he came home wearing a bright, hot-pink jumpsuit and black wrap around dark sunglasses (neither of which he would have worn while alive), and said he came back early from his trip because he didn't like it there. Made me laugh as soon as I woke up, it was like he was returning from the future.
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Hubs is currently stuck at the local big hospital outpatients waiting for blood test results. He sent a photo of his encannulated hand (what a rig! three of those 'tap' things sticking out). He's been having hand tremors lately, but also food avoidance, lack of hunger, and inability to sleep for several months. Today I had him go to the GP and they sent him straight over to the hospital for proper bloods and check up. Unfortunately he wasn't prepared with a power bank and of course its the second day of the doctors strike here so… not sure when he's going to be home and he can't text as he has to save battery power. Its been about 6 hours now, hoping he will be back soon. GP didn't think it was anything serious and mostly stress and anxiety related. Poor guy, this year has been tough on both of us so far.
On the other hand, The Human League are playing in the park tonight so I may go sit out and see if some of the tunes waft this way while I wait for him.
@sf_cakes I love the dream, I bet you woke up and felt warm and comforted?
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How do you edit your response??? I wanted to edit my post, but there is no edit button like before the upgrade.
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livinglife The wedding sounded fabulous, glad to hear you got some dancing in too! Future visits will give you something to look forward too aso, how nice.
mara Glad you got to see your niece's apartment and enjoyed your visit. It's always a bonus to have a nice view also.
emac Thinking of you and hoping your doing ok.
sf cakes Ha that dream made me smile. How great your DH is sending you some fun loving laughter.
sondraf Hoping your DH made out ok today. Glad you get to enjoy a concert while you wait, that's a nice bonus.
Mel Ugh the mouth, I'm sorry ,just stinks!. Sending hugs and healing thoughts.
Sunshine Absolutely eat whatever you can manage. Hope you got to enjoy something1
Candy Glad to hear your remaining. Agree I feel like my side effects are nothing somedays compared to everyone's struggles here. A/C and a good book sounds relaxing to me.
Getting a 6 week break from Xeloda due to radiation, so that will be nice! I know my hands and feet will certainly appreciate it. Mixed weather this weekend squeaked out a nice day today, was a glorious breeze on the water.
Hi to all the other lovely ladies here, sending good vibes to all.
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@candy-678, if you click the 3 little dots at the top right of your post, you will see an option to Edit. You can read more here:
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Thanks Mods. Got it.
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The SpeghettiOs were underwhelming, as sf-cakes said. Not bad, just not awesome. Oh well.
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checking in this evening. I felt so much better today. I must have had a 24 hour bug. As bad as I felt the morning I posted. With all the bone& body pain and headaches, I slept so good last night and woke up feeling great actually😊. I got some laundry done and cleaned. .So it was a good day.
Mel, sorry you have mouth issues. I had some annoying mouth sores the other day. Swished some baking soda and they went away. During my original cancer treatments, in 2009, someone on this BCO board suggested this for mouth sores during treatment. It’s always worked for me.
Good night everyone.💕going to bed now.
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Well I think I have settled in after the initial shock. I got in with a pulmonologist on Tuesday 7/18 and hope to have him review the CTA. I am a little concerned that I may need oxygen. When I'm up and around I am still having sats in the 92-93% range which isn't critical but not great either. I get so short of breath and I'm noticing my heart rate getting fast whenever I do something like fold laundry or clean the house.
I am shaking my fist at the insurance company today. Piqray has been approved for me but I have a $10k/mo copay which is unfathomable so I took in my financial info today to see if I can qualify for copay assistance from Novartis. Otherwise it looks like my MO may have to come up with something else.
On the up side, I have a friend who reached out and offered to let me stay in their house on the coast. She and her husband use it as an Air B&B. It's beautiful and has a great view of the ocean in Gold Beach, CA. I set it up for three days at the end of August and my folks and I are planning to go from there north to Bandon, OR for a day and walk around the shops and get seafood and chowder at our favorite restaurant there. I'm looking forward to it. In all of this I am discovering that I am just so grateful for so many things in life.
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Yeah so THAT didn't end as expected.
What a night. He's going back in Monday for U/S and additional bloods and surgery discussion, came home with all sorts of bits stuck all over him, and its looking like cancer. Hes 41. I am feeling really angry at the universe right now and wondering at the extremely small odds of two people getting cancer at the same youngish age. I know the story - this isn't a done deal until there is a final diagnosis and all tests and scans are completed but whatever it is, there will be medical intervention involved. At some point in the evening on his way home he passed out from exhaustion on the side of the road when running for the Uber and bit into his cheek pretty good. He was hauled into an ambulance, checked out and sent home without stitches! So we were both up until almost 4 dealing with ongoing mouth bleeding (and another call to overnight services) on top of it all.
Those with significant others/carers with their own serious illnesses - should I let my team know what is going on? How do you find the strength to deal with everything? Im so scared the bottom is going to fall out again on Monday or the week after. I suppose on the plus side I already speak fluent cancer and lord knows I have just about every side-effect medication known to man in the house. Except gauze. Boy was that apparent last night and its not like I have tampons laying around either that could have helped.
Hes resting better now and is drinking water steadily, so I think at noon Ill see if I can coax some yogurt into him.
This goddamn sucks.
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sondraf I am wrapping you giant hugs. I am sorry you guys are dealing with so much stink, it's just not fair! Yes we all know the cancer drill but we never want to do it twice in the same household! I pray that if it is it is very early and manageable. Yes we have to remind ourselves the jury is still out.
My husband is a heart failure patient at 56 after having a serious heart attack last year.He is doing ok now but is half the man he used to be. He owned his own home remodeling carpentry business so he was very physically active. Both of our docs are aware of our situation. I think it is important for them to try to support you and understand what else we are dealing with in our lives. They have the list of resources readily available in case we need a social workers etc. My head was spinning at first because I am always the medical resource ,reading, writing the list of questions for appointments etc. Somehow I was able to make it through and get him stabilized to deal with my own crap! Now we both just take it one day at a time. I try to look at each individual step and not whole whole staircase or I will lose my mind lol.
Hope you both crashed into bed at got some decent sleep❤️
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emac I am shaking my fist right along with you!! Not like it's bad enough what you are dealing with now dealing with the insurance BS🤬Fingers crossed that you qualify for assistance with Novartis. Glad to hear you're getting what sounds like a beautiful getaway! We all certainly need something to look forward to now and again and that sounds perfect.
Shana I'm so glad to hear you're feeling better. I can hear the pep in your step by your post and that makes me smile. I hope you continue with a string of good days!
mel Hope you are getting some relief a little each day. Hugs.
Waving to all and will continue to remember everyone in my daily prayers.
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Sondraf - I wish I could give you a big hug! You are right that this cancer stuff sucks. When I have my actual appointments with MO, I see young and old. All shapes and sizes. So much cancer🤬.
Cookie - it’s not just cancer, right? Your hubs is a prime example of how other crap can happen.
Emac - why have these drugs if we can’t afford them? The costs are crazy. But your little get away at the end of August sounds perfect.
Mel - sorry you have recurring mouth issues.
Sending positive vibes to all others who are having a rough time right now. May comfort and peace come quickly.0 -
@sondraf — hugs to both of you.
I think it is important that all doctors know what’s going on with both of you as it impacts everyone’s mental health.
As @cookie54 wrote, my DH had heart attack and open heart surgery when I went thru Stage 3 chemo treatments, had a stroke in one eye when I was hospitalized for extreme diarrhea after hip radiation, had a mitral valve clip inserted while I was in hospital this spring after 2 falls at home, has been diagnosed with CHF, and yesterday was diagnosed with squamous cell skin cancer with Mohs surgery scheduled. We just do our best to help each other and make sure doctors appointments work for us.
I will keep positive thoughts for you both. Hope your hubby gets the help he needs. Sounds like a scary day. Geesh… how much do we need to go through.
Hugs to you both. Wish my words were better. I really feel your situation.
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@emac877 — wow. That co-pay is ridiculous. Hope you get help from the drug maker.
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Sondra-I'm so sorry to hear about your husband. I hope that whatever is going on can be diagnosed and treated. Hope you both get some good rest this weekend and deep breaths as you wrap your heads around all this.
Emac-$10,000 co-pay?!? Maybe ask on the Piqray thread how others are getting their meds.
Mel-Hope your mouth feels better.
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Sondra- also sending virtual hug to you and your husband. When both partners are going through this BS we begin to question everything. As posted on this thread get a network of support from social workers and doctors.
Emac- $10000. Co pay? There has to be a way to get it paid for you. Here in PEI in Canada mine is paid by federal health insurance, provincial catastrophic drug coverage and Pfizer. In the meantime enjoy your time away by the beach and favorite food places.
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Candy, I can not handle the heat either. Prefer the AC as well.
SF Cakes, that is a great dream with your husband in it. Nice to laugh as you wake up.
Emac, hope the insurance issues you are dealing resolve but the AirBB
sounds lovely. Glad you will be seeing your folks.Sondra, I am sorry your husband fell and cut his mouth. As far as your question about notifiying, yes I would let your team know, they may suggest other services as you both need help. In your pockets.
Cookie 54, taking one stair at a time is the most realistic and manageable for me as well.
Dodgersgirl, in you and your husbands pockets too. I am glad you can lean on each other.
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sondraf: A moistened tea bag will work for bleeding especially those around the mouth or scalp. It can be fresh or used. Black tea works the best. The tannic acid in the tea stops the bleeding. DS bit tongue once (and actually needed stitches in it) gauze pads and ice pops did not work but sucking on a tea bag did.
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Nothing much for me, pretty hot so indoors I stay. Laundry under way, surveys etc for cash as well. Housework and that is about it.
Breakfast was nice. Garlic spread on english muffin, cheese on top. Toasted the english muffin on darkest setting. While that was going, took my wee frypan I found and added an egg. No other seasonings needed and it was basic but satisfying as well. Planning to walk 10 minute post meals again as well. Paul Eugene and Leslie Sansone.
I hope everyone who can has a good weekend. I am here for those who are not.
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Found a cute picture of my two cats, Tigger is the orange one and Ava is the tuxedo girl. Just love how they are sitting the same way. This about a week after we moved into this place.
I like how they are sitting the same way.
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Shanagirl, I’m glad you’re feeling better. What a treat to wake up feeling good!
Mel, I’m sorry you’re dealing with mouth sores. Those are no fun, and they seem like one of those things that you’re aware of every minute. For the most part, I’ve been able to keep them under control with Colgate Peroxyl Mouth Rinse. It’s in the oral care section of the grocery store. I think I used another brand for a while, maybe from OralB, and that also helped. I just looked for the words “mouth sores” on the bottle.
Emac, oh, I still feel so bad for you. I hope your meeting with your pulmonologist goes well. 10K A MONTH??? Who can afford that? Your friend’s beach house sounds lovely.
Sondra, I don’t even know how to respond. I did get a laugh out of the gauze/tampon thing. I had a friend who was an EMT. He said they carried tampons they could use to stick in a wound to slow the bleeding.
Waving hi to cookie, goldens, dodgersgirl, Chicagoan, mara, betrayal (I didn’t know about the teabag thing), and anyone I’ve missed.
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