My Husband, My Life, My Love, My Family, My Cancer
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BevJen & Chicagoan - as an American trying to figure out this system its been even a bigger pain - in the US you would just check your insurance provider website if the, say, gynecologist you want to see is in network and then you go see them. Here everything is run through your local NHS GP, which can be really terrible (mine was - their phone system never worked, I received a flu shot last year post diagnosis standing in a hallway with no sterilization of my arm or gloves on the providers hands, and don't get me started on the horror that was my pap smear). You do not go for yearly lady exams and the thought of going to a gynecologist for that is unheard of. Not all GPs offer the same services, but you are mostly stuck with the one(s) assigned to your postcode. I have gone to private GPs when I needed drugs for a sinus infection or something, but I could never figure out if there was a private GP I could just go see on a regular basis and get to know.
The upper levels of care the NHS do acute care really well. Im not going to lie its really nice to walk out with a bag of Ibrance or after a 4 night hospital stay and no stopping at the payment window. Some ladies mix and match NHS and private - my insurance will pay me if I get radiation or chemo via the NHS (which is how I made £500 last winter when I had rads to pelvis). I can see my current MO (who is a big big deal) privately at a fancy private hospital and get a half hour of his time monthly, but he also has to provide services in the NHS (where mostly a team takes care of his patients so I see a range of MOs or other doctors, not necessarily the same one). Then you have the poor people outside the major cities who are stuck with their local hospitals and in some areas it can be really substandard. They will only allow drugs to be used if it fits certain cost vs life parameters - so a new drug in the US may not necessarily be accessible in the UK very quickly (or at all) on the NHS (private it may be). Ibrance was one of these and is still considered new since it was only allowed to be prescribed since 2018 I think.
And that is before pointing out that NHS England and NHS Scotland are technically two different entities
I believe there should be a certain standard of health care available to everyone for a small fee, as well as a private system for choice. The UK and US systems both have entrenched interests limiting change to improved efficiency - which makes them wasteful. At the same time, in the US the waste may go on new facilities and salaries, while in the UK I am not real sure just WHERE it goes - layers and layers of management I guess. However, the insurance companies act/cover similar to US insurers of at least 30 years ago because of the NHS counterweight - I was shocked at the significant level of coverage they will provide for cancer on my policy and I receive it free through work, no copays or deductibles. So why not use it?
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hey Tanya~ remember this last year ??
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Yikes, what a day. Packing went well until I was cleaning out a bathroom drawer and sliced my finger open on a damn razor blade discarded by DH in the drawer instead of the trash. I freak out at blood, so I texted “help upstairs now” while rinsing it under water. He got to me super fast but it hurts and I’m still kinda pissed off. It’s wrapped and I’ve been holding it up for 2 hours but haven’t checked it yet. Minor on our scale of issues but still. Glad I wasn’t alone though because when I’m injured and bleeding, I totally forget everything, I’m almost helpless and borderline hysterical 😩
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Oh no, Mae! Have you considered going to urgent care to make sure it is set to heal well? I went to urgent care with an alarming finger slice one time and they used medical grade super glue on me. It gave me peace of mind to know it was properly cared for. Of course, it being late at night on Easter made things interesting, finding an open place. I squeezed in the door at the last minute after hiking around outside trying to find the place.
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Shetland, we have liquid skin here if I need it. I’m just so uneasy about blood, I would have been screaming, if my vocal cords actually worked, lol
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Poor Illimae! I can’t look at needles. All we have been through, one would think...
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Use a wet tea bag to staunch bleeding. It works. Keeping finger elevated is a good thing as well.
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Thanks ladies. The bleeding has stopped and it’s all wrapped up still, we may check and rebandage before bed but it sure is sore.
I can’t look at needles either, it took me over a year to stop crying every time I just stuck for labs, lol
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Mae ouch! I hate the sight of blood if it’s mine or my loved ones.
Betrayal thanks for the tea bag advice.
Wow Mel a year ago. It’s also been a year since I’ve seen my mom. We talk all the time but it’s tough to be apart. Ahhh Covid.
Waving hello to all and reading everyday
Tanya
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Hi guys...
Just tuned in....Mae, I hope your cut isn't too bad. Those slice kind hurt! Hope you have some neosporin on hand. That stuff is good.
It's chemo day. It's not too bad so far. Some nausea and a lot of fatigue, but what else is new?
Hoping you all have a good day.
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Mae~I am sorry that you cut yourself. Geeze that hurts for sure. Annoyance cut. As well. I hope each day it will hurt less. I would have freaked out myself. I don’t like that. Blood stuff !
Tanya~yup a year for you.since your appearance on GMA Sorry you haven’t seen your mom. I think it’s been 19 years since I’ve seen mine. We talk everyday though.
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Morning all.
Mae- Ouch. I use the disposable razors and one time I was taking out my trash and sliced my finger on the razor I didn't see in the trash bag (and forgot was there). Was sore for days.
Getting scanxiety for Saturday's MRI. First, I do not like MRI's-- a little claustrophobic. No meds for me-- I have to drive myself. I will just do deep breathing and listen to the music they offer. Then, nervous about the results. Last CT saw a 7mm new questionable area in the liver. MRI will get a different view of it.
I do not want this cancer. I am tired of the side effects of the meds, the tests, the poking and prodding for the blood tests, and the scanxiety. I have had MBC for 3 years--- 3 years of side effects, every 3 month scans, and all consuming thoughts of cancer--- and sometimes I feel the precancer days were lloonngg ago. Like a lifetime ago.
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Heading to a an appointment with my PCP this morning and I’ll have them look at it. It bled as soon as we unwrapped it last night, might need stitches. I’ll update later. Ugh.
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Joining you in the 'fed up club' Candy - CT for me tomorrow, almost a month later than it should be at nearly 7 months, despite chasing up - feeling pretty anxious too AND I don't think the report will be in for my MO appointment on Wed....it's never been that quick before. Big Sighhhh....
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Mae- In your pocket for PCP.
Karen- In your pocket for CT.
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So, the slice is very clean and didn’t bleed today, so no stitches, just bandages for a week. And, I escaped a dreaded tetanus shot since the blade was clean and finger looked infection free.
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Candy - with a liver mri do you get to go in like feet first? What a way to spend a Saturday - I hope you can find somewhere nice to get a takeaway lunch or something to make the journey less arduous.
Karen - wow 7 months?! I know its nervewracking but other than your DVT it seemed like things have been going well? I hate those MO calls when the scans arent back yet and there is nothing to talk about
Good luck to you too.Mae - the first and only time I attempted quilting I sliced off the side of my index finger with the little rolling cutter. With a blade that surgical and clean its usually just a case of stopping the bleeding which it sounds like you finally did
Ugh - I can't do blood or needles either.Going a little nuts here - this week was intense with too many demands. Tomorrow I have my flu shot (weeee!) and when I called to reschedule (shipment hadn't arrived) she asked if I was on the vulnerable list after I gave my birthdate. Its supposed to be I think for folks 65+ and specific conditions, and she had made the comment that I was far too young for the list. Yeah, tell me about it lady.
Hello to all including boo and Tanya and Mel and moth and Serenity and all the other ladies who lurk in the lounge!
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Yep - You’re right Sondra, thank you! I needed a wee reminder that things have gone well for me so far apart from the DVT. Onwards!
Candy in your pocket too for Saturday.
Hugs to everyone... my friend taught me to do a back to back hug, just the contact is better than nothing at all. Did anyone read the new research on the power of touch? Will see if I can find it.
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Candy, in your pocket for Saturday. 💪
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Thank you all for the pocket duty---- I will think of you all during the MRI. And thanks for the virtual hug--- wish we could hug for real. I need it.
Sondra- I do not know if I will go in feet first--- hope so. Was thinking of getting to-go lunch, but don't know. Lots of Covid in our area and the area where I will be going. Food supposed to be safe-- to-go and eaten in vehicle. But think about if an employee of the food place is sick and went to work anyway. Coughs on my food. So, I don't know.
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I agree with you Sondra. I have gift cards from my birthday in May not used because of that reason. I want to go out to eat. Not eat in my car or at home after everything gets soggy. Ugh! Covid so annoying.
Reporting for pocket duty for sure with snacks ! Choco covered strawberries from that fruit store that dips everything in chocolate Just can't remember those name of the store right Now lol. Wow. Chemo brain moment.
Mae~ I am really sorry about your finger. Those are Soo annoying. That damn drainage that doesn't stop. I'm so glad you're ok though my goodness scary stuff. Could have been a lot worse. Just nurse it. No infection!!! Sending hugs.
Good to see you Karen!!!🌻🌻
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hey where is our Mara?
Hello Shetland! 🤗. Hello betrayal ! Good advice.
Hi Rosie! Hello Tanya, hello sweet BooBoo!
I spoke to Philly. She’s changed her treatment and she looked great. She’s become A mentor for people to raise awareness of MBC. She’s made her own platform of awareness within her social media area. She’s made videos and is discussing mbc with people who have no idea about The disease. It was nice to have a message from. Her. We use Marco Polo to keep in touch or we text. She’s so lovely. I adore her. I definitely don’t want to loose touch.
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I am here Mel, reading what is happening more than posting. This thread moves fast. In Candy's pocket for sure.
I haven't been doing anything but the usual walking, laundry, survey stuff. Enjoying myself in general. Looking forward to an early thanksgiving dinner on Saturday with DB and family. My window AC is leaking water in the house so after this week, will have old DB take it out and clean the drain pan. Might as well have him store it too.
Mae sorry to hear about the finger slice, depending on where it is, it would be painful and a PIA for sure. Glad you avoided the tetanus shot too.
Mel I hope you are feeling better now as well.
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Mel = thank you for that update about Philly. Totally sounds like what she would do, and I am so glad to hear the new treatment is working well for her.
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Candy,
Reporting for pocket duty. I'm bringing cheesecake. I make a mean cheesecake, and it's nothing but...8 bricks of cream cheese, 7 eggs...you get the picture. The recipe is from an old Philadelphia restaurant called “Bookbinders". I make it for special occasions and for DH's birthday. So you are in that “special people" circle! Please let us know the outcome. We are here for you no matter what.
Hi Mel. I am SO encouraged by the report on Philly. She is a perfect advocate for those of us with MBC. I am going to pray that her outreach is vast and deep.
Hi to everyone else. Sending hope and love for a good day for all.
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Hello to all!
Candy, I hope the MRI goes well tomorrow. Just so you know -- you don't go in feet first -- it's the same routine -- but they usually put like a belt-type thing on your middle area -- I'm guessing to focus where they are shooting the MRI films? You do have to do some deep breathing, which is not the same with every MRI that I've had. Good luck through this next adventure.
Hope everyone else is doing okay and that you all have a lovely day.
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Glad to hear that Philly is doing well and feeling like advocating for MBC. I wonder what treatment she is on now. Do you know Mel? She was on Ibrance. Wish she would post--would be interesting to hear about the new treatment (I like to read how others are doing with a treatment in case that treatment is in my future). And would be interesting to be able to see her videos that she is doing for MBC.
Mel- Chocolate covered strawberries sounds delish.
Boo- Cheesecake sounds heavenly.
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I think she said Tamoxifin. Was what she was taking now. (Spelling)
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waving hello to all.
Pocket duty for Karen and Candy I think I want cheeseburger sliders and onion rings.
Pool water is cold from a few cooler nights but I managed to psych myself and jump in. My DH is thoroughly entertained but has swam maybe once this year.
Take care all.
Tany
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Tanya, the burger and onion rings sound like the lunch I usually get when I take myself out.
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