My Husband, My Life, My Love, My Family, My Cancer
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moth: "enigmatic" - undefined, inexplicable, puzzling. Last night I did my churning shit over and over in my head. The bone scan shows noting so we'll do a bone biopsy. Will I need an amputation? I cannot do that! I live to sculpt and draw and cook. Waaaaaa!!!
I have to live long enough to see my kitchen renos done
SeeQ: Holding onto your meme. Add to that - my cat's soft paws patting my face when I am in bed. .
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Moth and Mae- thank you for teaching me to use these darn icons
Moth I'm so happy your dog is ok . What a scary situation.
Elderberry- some things just can't be explained. If it was aliens maybe they have a cure for this cancer !
My day didn't start out the best. I got up at 6:30 to let the dog out. There was a beautiful sunrise over the water so I got my phone to take a picture. When I went onto the grass I stepped in a pile of dog doo doo! I had my slippers on but it was slippery and I fell up the stairs to the porch. I was so pissed off . Little did I know the dog also stepped in it so we both had to wash up. My DH did clean up most of the mess and I went back to bed!
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Elderberry, I'm sorry you're worried. I get it. I also have NF1 and for years, when I was going to UCSD I used to get all the Ophthalmology (sheesh, I had to look that one to get it spelled correctly) because I have an enlarged optic nerve and there was always concern that it was an optic glioma. It never was, but I was followed closely by the neuro-ophthalmologist. I hadn't seen her in probably 20 (?) years, or so. I saw her last year on the recommendation of my optometrist and she still remembered me.
Apparently I was "unusual" enough to where she used my example in lectures and wanted the residents to come in and look at me and my right eye. I guess I was a textbook example of something. It became quite entertaining. We had a fun reunion when I saw her this time. She did recommend an MRI of the optic nerve region to make sure nothing new was happening, but it all came back OK. That happened to be right before my MBC diagnosis.
So, for you, I'm hoping that the "thing" in your arm is just related to NF1 and not anything related to cancer.
LivingIVlife, we lost our Airedale Terrier in January of this year. I still step cautiously in the back yard when I go out there at night. Nothing like a squishy pile of dog poop to wake you up.
Carol
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Moth~ very thankful that your dog is ok. Poor puppers. I think they bounce. Traumatizing to say the least.
Living ~glad you weren't hurt worse and or didn't slip more on the poo . Nice DH for cleaning it up.
Reporting for any pocket duty in the morning. Or whenever. DH is on a pumpkin cooking binge. Having a yummy soft treat for my mouth. I so appreciate it. Such a delight.
Mae~ glad you're adjusting to the altitude!
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Hi to all! I've been reading all the posts here, just don't have the energy to comment on everything. I spent last Sat. night in the hospital with very low blood pressure and a blood test that indicated a blood clot was possible. They gave me an IV and also Heparin and, thankfully, things resolved. The hospital was so full I spent the night in a room in the ER. They were treating people in the hallway with privacy screens around them! MN is #1 in the US for Covid cases and the hospitals are at capacity. Why don't people get the damned shot???
A CT at the hospital showed the nodule in my left upper lung has increased in size and is suspicious for metastasis or a new primary. I have a PET scan scheduled for Mon. morning. I am really anxious about what will show up and would really appreciate your good vibes. Not necessary to bring treats, just bring your spirits. I will also be thinking of you who are having scans and tests. Next week sounds like a busy one for sure.
Have a great weekend and thank you all for being available.
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Sunshine: Yes, I am hoping it is something like that. You'd think cancer would show up ether in the PET or the MRI. I am glad your optic nerve is still okay. You must have made quite an impression on the specialist.
Living: Yuck and glad you didn't hurt yourself. The worse thing I ever stepped on, in my bare feet, was a slug. The horror! :-)
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Lee~you can count on us to be with you in your pocket. We're all food junkies so sorry for the mess ahead of time. I will be sending good vibes out to you for sure. I understand when you just want to quietly follow along. Sometimes I even do that. It gets me overwhelmed that I can't help my sisters. If only we were really able to help each other. That would be the most amazing gift of all. Love to all!
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I'll be there for sure Lee, sending you good vibes in the meantime.
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In your pocket too Lee
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Lee- definitely with you in spirit and sending good vibes
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Lee: Sending you a virtual hug for Monday!! It is okay to lurk and not feel compelled to post. Just know that we are all here for each other.
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Lee,
Count me in for pocket duty. I’m praying for a good outcome for you.
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Lee, were all with you for support, no treats as requested. Please take it easy and just read our support if need be. We are all here.
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Lee- I will be thinking of you on Monday. I am adding you to "the list".
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Lee, I’m in for pocket duty on Monday!
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Good morning ladies. Well it’s been a rough week for me. I had to leave work early on Wednesday because of breakthrough pain on my left side. First time I had to take my IR meds since I switched to morphine. I was up every 2 hours that night. Then at 4am I woke up with a pounding headache. I took some Tylenol and then within minutes I was throwing up! It was awful, full sweats, chills, and pain. Finally decided to go to the ER. I got the full work up there but every time they moved me for test I was back to throwing up. We got it under control finally and all my labs and tests seem to come back okay, nothing acute, so they discharged me after about 7 hours there. My lovely DH stayed with me the whole time and took such great care of me at home. I finally started feeling a bit normal last night but my throat is still raw from all the activity. So I’m hoping for a low key weekend!
Lee, welcome! You can count on me for pocket duty! I’ll hop between there, my scans, and candy’s pocket! We are always here to support
Sending happy thoughts to everyone
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Lee I’ll be jumping in quietly with the ladies fir Monday’s scan.
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Candy, I'll be in your pocket for your scan on Monday, I'll bring some Timtams.
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Katy, I'm SO sorry you were so sick. I wish they could have found a reason for it. Sometimes, giving "it' a name makes me feel like I have a little more control. Kudos to your DH for staying with you the whole time. I hope you keep feeling better - especially your throat.
Carol
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Wow Katy sorry you were so sick. They don't know the reason? Hope you can have a restful weekend now. Hug.
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Katy~omg sounds awful. I'm so sorry you felt so badly. I know no one enjoys an ER hospital run. I hope you're feeling better now. Sending you lots of good thoughts and hugs.
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Katie, I am so sorry you were so sick as well. Feel better for sure.
In everyone's pockets who need it as well, thoughts to those dealing with such heavy issues as well.
I have not done much today. Did find that my food delivery service will deliver chocolate bars today. Decided to order some since I had some credits from the last meal which arrived 90 mins late when the first driver drove off into the sunset with t he first one.
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We passed by a large herd of donkeys today. I counted 7 marked in yellow but I think a few more were laying in the shade making them much harder to spot. Usually we only see 1-3 wandering around, this was a treat.
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Lee - in your pocket for your scans Monday.
Katy - so sorry about your ER trip. Yay for your dh attending you so well.
Monday is a busy day for scans. Add me to the list with a PET-CT Monday afternoon. I'm hoping for 'routine' but...you know. This scan is my last before our move, and will let me know if I can be patient about transitioning to a new PCM/MO.
Mae - I love your wildlife pics.
Mel - we do really help each other here. The emotional support we get here is unparalleled.
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Katy, I hope you are feeling much better,, it's no fun spending the night in the ER. Great pic Mae, enjoy your time at the cabin. SeeQ in your pocket, I hope it's all good and your move goes smoothly. I'm having a lazy day after chemo on Friday I've got not one ounce of energy left. I hope you're all having the best weekend you can.
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Thanks everyone! Today was definitely better. We had a nice lazy day around the house. Did have some tummy trouble this evening but I think I’m okay. Hoping everyone is having an enjoyable weekend.
Pocket duty for those who need it. I’m also getting my first rescan on Monday. This will be after 2.5 cycles of ibrance. I’m hoping for at least stable. No news is good news
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As usual this thread goes way too fast for me!
Re the DNR chat I did my power of attorney in the summer and my solicitor advised that unless I was absolutely sure about a DNR to leave it out and deal with circumstances as they arise. Since there are so many variables that’s what I’ve done….DH and DB know my wishes. Incidentally DH did his POA at the same time which STILL hasn’t been registered with the ‘office of the public guardian’ which is a legal requirement. There’s an 8 month delay!! Mine was done in 2 days because I put in a request for expedition due to the MBC and possible end of life.Also here there’s a government push on stopping people attending A&E (ER) unless they are life critical ( stroke, heart attack, extreme loss of blood). This to reduce pressure on the departments. Instead we have to phone NHS 111 for advice on where to go…..which is just great if you can’t get through! In fairness there are a massive amount of people presenting at A& E with stuff which is minor. I’ve been told by my team that if something occurs severe pain wise or extremely breathless to go to A&E if I can’t get a hold of them. Luckily I now have one of the really good respiratory nurses on my side who’s told me to ring her directly if I have issues….the lengths we have to go to!
Pocket duty for anyone who needs it!
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Sunday morning all.
Here is the "pocket duty list" for the week of Nov 22----
SeeQ- PET Monday
Lee64- PET Monday
Katyblu- Scans Monday
Kittykat- Surgeon appointment Monday
Candy (me)- Scans, Labs, and MO appointment Monday
Cowgal- Bone Scan Monday and CT Wednesday
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Monday looks busy! Here for pocket duty and wishing you all an as relaxed week as possible.
Here’s a calming mountain view for the morning.
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that’s lovely Mae. ! I am also available for any needed pocket duty! Holding you in my thoughts and good vibes. Much love to all !
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