My Husband, My Life, My Love, My Family, My Cancer
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Wow. Mae, I didn’t know you were a gourmet cook! That all looks delicious! You go girl!
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booboo, I’m not really. When I married DH, I could only make mashed potatoes, he was the natural cook but I got spoiled. After his job kept him away from home for long periods, I decided to learn and Hello Fresh helped.
It was exhausting but I took breaks between prepping. Turned out delicious though.
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That does look delicious. I’m a horrible cook for the most part. Pepper is almost too spicy for me. My poor husband has to put Cajun seasoning on justabout everything I cook to give it flavor. Lol
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DH does the cooking here also. He’s fantastic at it. Bakes also. He does really take care of the cooking and cleaning. I try to help when I can. But I’m usually useless. He is something else Thanks to all of our caretakers.
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BooBoo~yeah I’m having a hard time. I don’t Iike just one dog. They are a package. Deeohgee is lonely. He misses his barking buddy and his exploration buddy. They spent every day together also. He’s been sticking by me closer I’ve noticed. Which is a small change for him. I miss my sweet chestnut baby. My tiny dancer. Nothing could ever replace that dog. Nothing. Thanks for asking My heart is hurt for sure
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booboo, this virus time will pass, but still it's sad missing a big family occasion like a wedding.
Mae, driving 9 hrs and still being in Texas! Wow, that state really is huge! Your meal for hubby's birthday looks delicious!
Waving hello to everyone.
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BooBoo~ I am sorry that you missed the wedding in your family. I don't blame you for being upset.Even before Covid, I would catch people's colds now I'm freaked about anything. You can't chance it either
If it involves travel, forget it. Nine hours ? Mae wow. Only thing I could do for that long was sleep. I saw you anticipated being there by Halloween?, that's really exciting You're an amazing woman!
Bliss ~Hello there my friend ! Hope you're well.
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Bliss58, here’s a Texas map overlaid on part of Europe for an idea of size
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Melissadallas, cool map. I’m basically moving from SW Austria to Paris 😁
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Cross-posted with Ibrance thread, but back from second opinion and it was a good discussion. Leaning towards switching as I felt comfortable talking to her and the overall monthly management would be easier. She had my scan reports from last Wednesday already, and there was further bone resolution and the breast tumor shrunk some more, so good news all around.
Feeling a bit down as I had to relate the diagnostic process again, and feeling crappy at the randomness of it all.
I knew Texas was big, but its like driving from the UK to Russia almost!
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Mae, I don't think most folks who haven't driven it have any comprehension of how vast Texas is. So big we can take direct hits from huge hurricanes and much of the state not even getany rain.
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Santa~I am speechless, I am touched so much that you would think of me like that. I sent the masks because I care about my sisters. I appreciate the beautiful care package I just received. You're an amazing friend. To be so caring. I can't thank you enough. Honestly. The DOG magnet is perfect I love it. It's going right on my van. Immediately! I'm beyond touched. Thankyou from the bottom of my heart.♥️🥰you made my day!!!
like I mentioned before, if you need masks. I can send some. No pressure. Just putting it out there.0 -
Hi ladies.
Home from PCP appointment. Last one 4 months ago was telephone visit so last seen in office in January. So today went into office. Got flu shot while there. **EVERYONE GET YOUR FLU SHOT**. Also, I told PCP that new MO says I do not need a mammogram- CT would see what we need to see. PCP disagrees and said for me to get mammogram. So I need to make that appointment. BP readings list I took in still too high, so upping my BP meds.
We have 2 hospitals in our town. Neither offers Palliative Care. My new cancer clinic- larger city 2 hours away- doesn't offer Palliative Care either. So those that have that option for side effects of meds and help with the stress we live with---you are lucky. Thank your lucky stars. Frustrating.
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Here comes a little rant, aimed at your doctors and nurses, candy. If a patient comes to you with an arm that hurts badly after a fall, and you do not have an x-ray machine where you are, you send the patient to a place that does have an x-ray machine. If a patient comes to you with neurological symptoms but you are not a neurologist, you send them to a neurologist. You don't just tell the patient, sorry, I can't help you, go away. It's called a referral. The general idea is that if you can't help someone, you find a doctor who can. If you need to go outside your system, you do it. And this is the age of the internet and the year of telemedicine, so nothing should stand in the way. Candy is a whole person. Her quality of life matters. Stop being stingy and lazy and have some compassion. You can do better. Get her what she needs.
Candy I found this in your state. There is a map showing the service area; I don’t know if you are in their area:
https://journeycare.org/alleviating-pain-symptoms-palliative-medicine/
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Thank you Shetland, my friend, for your words. I looked at your links and the service area for this organization is the Chicago region. I am in Southern Illinois-- 5 hour drive south of Chicago. I would need to look more in the St. Louis, Missouri area if looking for something in a large city closer to me. I am learning that we cancer patients have to do our own finding. I asked old MO about Palliative Care and all they said was they did not have that service. Then new MO (in St Louis, by the way) said the same thing---no referrals or suggestions. Same with PCP today. No options or "You may want to look here___".
I attended the virtual New York MBC conference this weekend. They mentioned the use of Palliative Care a lot during the discussions and I know some on BCO talk about their Palliative Care doc. Maybe the Midwest doesn't think Palliative Care. Maybe more East and West Coast thing.
I will try to Google and see what, if anything, I find within a reasonable distance to me. But wonder how much help Palliative Care would really be anyway. I deal with my constipation and fatigue side effects. I do need help with the stress issues though. And I do need some advise/help on the pain issues. But having to travel to a facility would not be feasible for, say, acupuncture. Too many visits needed.
But thank you Shetland, for caring.
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Candy, my MO says the same, I haven’t had a mammo in nearly 4 years, the CT covers it. And I’m sorry they sent you off to figure it out on your own.
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my mo says the same thing to me too. No needed extra tests. It will be covered with the other testing. Which is just fine with me. The less testing the better. Now to get candys Mo a clue !
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Even in FL, we have the same. I’ve called several places that “claim” to have palliative care programs tell me , sorry, no. Even though it’s listed on their website. Really? Why? If I wasn’t feeling the way I am with my new treatment, I would pursue. And I will. I am so frustrated that my healthcare providers have this on their website but don’t seem to have it when you call.
Anyway, I’m not one to just let things go. Will continue to pursue and let you know what I find.
Love to all.
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that makes me mad. You ladies need to find yours !!!! I adore my Palliative group. They keep my medicine filled and they support anything you need. They are wonderful. I wouldn't give up looking. Even if you only have to visit every three months or less with virtual. Don't give up. There has to be more of them around, Larger hospitals seem to have them. Totally not okay in any way.
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Mel I'm so glad you liked your goodies. xxoo
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Dropping and catching up.
Mel wine one fine for me, but I stick with white mainly. My team have never said it’s not allowed - I did ask early on!
Moomala hasn’t been seen since August & I too am worried about her as she was a regular poster. I have seen Philly around though.
Sondra interested to see how you get on in private care. I also have that option but have been holding off much like yourself.
CT scan for me on Friday...almost a month overdue! It was requested by an MO to be done early because of the DVT in my knee. That didn’t happen, no explanation apart from it’s in the system just no date through yet. Only after chasing it up a couple of times did a date come through. If it was pressure on the system understandable, but my friend’s mum is at same hospital and her check up CT was requested and done in less than a week at the same timescale!
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Mel- PM'd ya.
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Karen~I didn’t think so. But I wondered if I could have a pina coloda on my week off. Yum! I miss those.
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Karen - the tech at last week's CT said they were only operating at 65% right now, so its blissful and easy to get things done (no waiting an hour + for blood test, or 2+ hours at clinic, or almost an hour for my injections as it was before Covid). Also, keeping random family out of the way helps a lot too in reducing the noise levels! Private clinic is attached to an NHS hospital with the big UK cancer research centre associated with it, which made me feel a bit more comfortable than going to one of the big Harley street clinics, which are just too sterile. (and lets face it, they are really for the Chinese and Middle Easterners).
I did find it interesting how fast private was able to access my current files - some were sent by my GP, but they got my current scans too within 24 hours! But who knows what else is managed by faulty Excel files within the depths of the NHS. I guess I would like to get ahead of the wave of undiagnosed people once Covid starts to clear.
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Sondra - I picked up the Excel thing too re Public health / NHS gathering the COVID data. Having dealt with NHS systems in my working life I’m not in the least surprised they were using outdated and not fit for purpose systems!
The ONS ( office of National statistics) data seems to be the most accurate.
My MO works between NHS and private care locally, so I’ve spoken with her and I’d stay with her if I moved to private.
Next thing will be getting the report done from the CT on Friday. That’s taken anything from 1 week to 5 so far....they’ve given me an MO appointment next Wed, so that gives them 2.5 days to do the report assuming the radiologist doesn’t work weekends. There will be pigs flying past my window if that happens! 🐖🐖🐖.
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Wow, Sondra and Karen,
Listening to the two of you trying to navigate the health care system in the UK makes my head spin! It's hard enough in the US to figure out what's best to do and where to go, and you guys have a whole other level of considerations. At this point, I'm not sure which system is better to deal with when you have cancer.
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BevJen,
It has been fascinating to learn about other health care systems on this board. I now have a better appreciation for the US system-probably because I have access to Medicare and also a "cadillac" private insurance as my back-up. I was so surprised to learn that in some countries your doctor is assigned to you. Now I would be hesitant to have the US jump into a different system without really thinking things out. Any treatment or test my doctors have wanted for me has been approved-even if sometimes there was negotiation with the insurance companies.
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Chicagoan,
I agree, especially since I know that some of us switch providers if we don't exactly "mesh" with the ones we've had. I have Medicare as well, with a supplemental insurance plan, and I've only been turned down for a Pap test that I had in 1 year rather than 2 (Medicare rules).
Now as to drugs -- that's another story for me. I am on Part D, and on Ibrance, which is quite pricey.
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