My Husband, My Life, My Love, My Family, My Cancer
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you’re not alone. I limit spice eg heat because my tongue objects. I live with people who think 3 star is mild. When I visit my son they go crazy with hot food
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@micmel, I have what I call "the eating thing". It has kicked in 3 times in the last 20 years for me and how it affects me is that I totally lose my appetite. I look at food or alcohol and my stomach does a slow roll and I decide thanks, but no thanks. As I am overweight, I have previously welcomed it with open arms as a fantastic diet aid. No dr has ever been able to tell me what it is - plenty of guesses, but no definitive answer.
But now, after losing about 40 kgs since de novo dx, onc team and gp are starting to get a bit worried. I think they thought I was fabricating stories when I first raised it and tried to explain what it does. Now I think they understand I was not lying about it. I derive a small satisfaction in being able to take the little judgmental looks from their faces - lol.
Even though I used to enjoy a social drink or a wine with a meal - I can't touch it now - I just about cry when I realise I haven't had a drink for 11 months.
On the plus side I am no longer pre-diabetic and other bloods look good, too. So we shall see how much longer it sticks around - the last time it was about 12 months.
However today I will be having homemade mushroom soup.😀
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Good early morning all. Following severe weather with tornado outbreaks expected Fri., Sat., and Sun. We are not in the projected path at this time, but the plains area and Illinois and I believe Michigan are. Gonna be a long weekend for these folks. Saying prayers for all in the path..
Mara, I'm so so happy that I'm gonna do a little Irish jig for your stability… Never mind, I'll probably fall on the floor, so I'll have a cup of good cheer to you and all the folks that have stability. Cheer is code word for cranberry/grape juice. No alcohol either. Mel, if it's too soon, just hold on to your thoughts. You'll know if and when you are ready. MissMallee, had a family member that suffered from anorexia. Curred with a drug that contained marijuana (can't recall the name of the drug). It was a miracle as anorexia is so deadly. This person was very, very ill and we could not locate a facility since the patient was a male. Wound up in a hospital for mental patients and mentally violent patients. It was scary all the way around. Give MJ meds a try for nausea and appetite.
Abdominal pains have returned. They say diverticulitis is severe on the CT scan and recommend surgery. I wonder about colitis as this pain is not lower left quadrant. I read the stats for mortality rates if it's an emergency versus elective. Guess I'll surrender and do elective. Our DD lost her colon to toxic colon death and lives with an iliostomy. No one knows what caused it, but she was very close to death and had a 7 week old baby. One thing I did read a couple times is acne meds and sometime birth control pills can affect your colon. I don't have diarrhea at the moment, but am going 6 to 7 times a day and it's painful.
Be well sweet friends…
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Congrats on the stable Mara🎉🎉🎉.
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Mara Coffee cheers to you and stable!! Treat yourself ,as you deserve it.
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Congrats Mara on stable. ⭐️
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Irish~ I hope your pain improves. I’ve had bouts of diverticulitis and it’s so damn painful I feel so bad for you. I’m so sorry. Thinking of you today! Sondra as well.
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irish, I'm sorry you continue to be in pain. I hate that I feel like my life needs to be scheduled around the possible need for emergency bathroom access.
Carol
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Thank you for the well wishes, I do appreciate hearing stable in my head as well as honestly not sure what they would do about the bleed in my head which is not in the brain. No idea on my end as to the cause of it either.
I hope everyone has a good day and in everyone's pockets as well.
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Hi @irishlove, thanks for the tip about MJ. Onc was quite despondent when I told her that MJ didn't do a thing for me when I was younger - so that is out as a potential painkiller for me - but we might explore it for the appetite side of things.😀
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Hello all. I hope you dont mind me intruding. I have posted on the not stage 4 but worried page. Was hoping someone here might give me some guidance please?
Hope you dont think i am being rude/insensitive asking but I have a conundrum .
I would like to ask if anyone knows what the right thing to do is where a partner has stage 4 mbc.. They are 7 years in now.
They have had all the endocrine therapies and targeted therapies available and are on the third line of chemo (if xeloda oral counts?) .They have never and do not want to know their own situation and dont want their partner (me) to know, the exact nature of the situation.
I completely understand and respect this, and have never yet questioned this.
Even from the beginning they were not interested in knowing where biposies were being taken from.Its proving a bit tricky now though as although they (non binary) look well at the moment, they are on 3rd line chemo and when i go something to the onco with them, i sense something has changed. The onc gave some vague indication that the mets had spread to the abdomen and i think they said lung from a bone only situation, but they are not specific as my partner doesnt want to know.
Is this something to worry about or not? My partner seems to think not and is continuing life pretty much as usual, although I feel they are taking risks going into crowded places after chemo , football matches , concerts etc etc. even though they are waring themselves out for days after.
I am trying to prepare mentally and practically though for possible caring duties and as they refuse to discuss the matter this is tricky.
. Am i wrong wanting to know? Forgive me if I am please. I know its not me going through this but am trying to anticipate practicalities etc. Thanks
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Mel - In regards to the eating thing I pretty much eat whatever I want too. I have so many days where everything I try to eat won't stay down so I will eat whatever does. I do try to focus on nutrient dense things but am known to ask my brother to swing through the drive through after an appointment and grab fries or a DQ Blizzard sometimes. Right now my brain is a little impulsive to it's just random some days.
Sweetpea - You are in a hard position for sure. I don't know that I can offer any wisdom but just opinion. I would respect their wishes not to know. Just me being me, I would want to know at least minimal details so I could have a plan but I wouldn't ask for those without their permission. One thing I have learned here is that cancer is so different for everyone and we all have our own way of coping with it. Is this a conversation with them you would feel comfortable having or that they would be open to? I am very open to questions from friends and family but understand not everyone is.
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Thankyou emac. No they are not up for any discussion whatsoever. Therefore I wont ask. I am trying to second guess the position so that I can decide whether I need to make some significant decision re work, income, caring etc etc for the future. This is an expensive time for us, and I am trying to make sure that if I do need to be worried, I have got some kind of plan in place so we can keep the roof over our heads if possible etc. etc.
I know I shouldn't second guess and I guess even if they were up for speaking to the onc, the onc probably wouldn't be able to say anyway ?
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sweetpee, I'm sorry you're in this position. As I think about what you've written, it sounds like they want you there for care and comfort, but they don't want you to know the status of their illness. That doesn't feel "fair" to me, although that's not quite the right word.
I wish you and your partner the very best. These are tough times, and to be going through them alone, but together, has to make it even harder.
(((hugs)))
Carol
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Thankyou Sunshine. They dont want to know themselves and were quite surprised when they had a biopsy as they literally ‘go deaf’? if thats the right description when the onc speaks. They dont want to know the name of the chemo or anything.
I am pretty sure its because they are either petrified, or, (as they are quite a proud sort of person who “doesnt so illness”), they just dont want to admit there’s anything wrong.
It is a difficult situation for sure.
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Sweetpea, you are in a tough place since the financial affects you and I know you love them and want what's best, but I have no words of wisdom. It sounds like they don't realize that eventually the burden of care will be on you and they will be forced to come to you for help.
Well, I spoke too soon about the arrival of warm weather. This morning I woke to this, and the high is predicted to be 36° today. Ahh, Spring in the Rockies!
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intolight, that's crazy. The temps are pleasant here in the Palm Springs area, but the wind blew our patio furniture and BBQ off the patio and into the planter yesterday. Right now, it's perfectly calm.
Carol
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sweet pea. Your partners doc can’t talk to you without the partner’s permission. Can you ask to speak with a social worker there? Perhaps a lawyer for advice as well because of financial considerations. It’s not fair to you to be in the dark. Partner may have many years ahead although lung Mets don’t sound good. Ask the mods if they can recommend sites that may be more helpful or start a new topic. I’m sure you’re not the only one in your position
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@Sweetpee Wow, you are in a difficult and delicate situation and it’s hard to give much advice based on so little. But from the vague details you know, I wouldn’t be as concerned about exposure to crowds as I would be of properly preparing for the inevitable. Do they have a DNR or a living will? These documents are so important. I’m attaching a link that you might find helpful. I hope you can broach this subject with them. I find discussing end of life decisions with my husband (and son when necessary) a relief, a burden lifted. I’m surely not happy to die but I know my husband and son will help me die “my way”. Obviously your partner does not feel the same way so if you can’t have this talk, maybe her doctor or even a third party that isn’t as emotionally invested could help get the conversation started. Best of luck. Hugs.
It’s also important that all bank accounts and insurance policies are written down somewhere. I don’t know the heir situation but if she doesn’t have a trust or will, things can get ugly and drawn out in court.
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Hey Wren and RK. Thanks for the advice.
From reading I understand you can live along time with some mets, even your normal lifespan, but best to be prepared.
Third line of chemo also seems quite a lot to me , but i could be wrong. I think as they have been going along for years now, they may , and may rightly think, all is going to be well.
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Thanks for the thoughts and prayers everyone, its really means a lot to be able to come here virtually at least and talk to.people who get what's going on.
I had a bone biopsy yesterday to check out exactly what the hell is in therr since this has just been more or less sitting in thr hip for ages now. I may get cryoablation, or it may switch up my treatment plan to a short course of iv chemo to clean it out, give me taxol and carbo as per the liquid biopsy recommendation last year. But I'm not going to lie here, I don't feel ready for iv chemo yet and it scares me, even though I was just speaking with some women a few weeks ago at the coffee morning about how some of them got that combo first and have been doing well on pills since. Trying to be positive about it I guess, I've been assured ifnits still hormone positive and correct we can return to the pills just need something more substantial right now to improve my quality of life.
Still having low grade fevers associated with increased hip pain events and I done with being this medical anomaly on the hospital. Supposedly they will let me out Wednesday, but ill believe it qhen I'm home..the iv antibiotics at least stop tomorrow after morning dose. This is all so tedious!
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Mara, congrats on stable 👏 !!
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@Sweetpee, I am sorry for the very awkward situation in which you find yourself. It can be very difficult to know what to do when the patient appears so disinterested. Sometimes the more they are pushed, the more they withdraw. The family members who know of my diagnosis also know that the appropriate and necessary paperwork has been completed. I did not want them burdened with a mess and I wanted no confusion as to my preferences about treatment etc. I send good thoughts to you and your friend.
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Good evening ladies.
I missed a few days and had to read for awhile to catch up.@threetree i hope the fatigue is letting up from the faslodex. I have mine Tuesday. Preparing for fatigue.
@mkestrel beautiful trees in bloom full of buzzing bees. 🐝 I have a jasmine tree like that. I can feel their hum when I stand underneath. I’ll have to try a chair.
@micmel Theo is cute and I’m happy DH likes him. It always makes for peace.
@malleemiss251 I envy your mushroom 🍄 soup. Yummy
@sweetpee welcome. Sorry you have this tricky thing to navigate through. Legal advice and preparation is important whether you know the medical parts or not.@emac877 I’m happy you feel some improvement and that you get help from your DB. Mara and Mae have so much experience with WBR and sage advice.
@sandraf hospital stay and inpatient MRI is a terrific test. I hope the doctors team can figure this out and get you home by Wednesday.
@sunshine99 enjoy your desert getaway sounds lovely.
@intolight beautiful snow picture of spring.
@irishlove ibwas happy to read to the conclusion of your DH tests. He sounds like he needs a nap with all the walking swimming shopping.
@mara51506 congratulations on stable and feel better. You’re gonna have to share more about setting up for the super hero dream 😴
@goldensrbest the weather is warm here - cooler in mornings. Very dry I’ve been watering but not too much.
Visited mom past week. Went to Longwood gardens visited DD and GK in Chester PA. Did everything I wanted and then threw my back out. It’s getting better. The price I had to pay for a nice trip with DH changing my injection infection bandage 🩹 and getting an atta boy from wound doctor for all his hard work when we got home.
I’ll try to send some tulips and Lillie’s. Spectacular Longwood gardens.
Waving hello to Wren Candy Mae RK2020 anyone else I missed
Tanya
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Tanya ~ I’ve been to longwood Gardens several times. I love it. The light shows around Christmas are the best. I am about an hour from Chester. That’s not that long at all. I would love for st some point to be able to meet someone. I was going to meet BooBoo but she started to get sicker and we were never able to make it happen. I think that would be wonderful m. I think SeeQ and KBL met each other recently and had a nice visit together, which is awesome.
mom thinking of you all. Hugs and love. To you as well.3 -
Tanya - Thanks for thinking of me. I'm actually still pretty fatigued, but I think I might have wound up with some low electrolytes too. I've got pretty chronic low sodium with all this business. I'm seeing the doctor next Thursday, so I will ask him what he thinks. Good luck on Tuesday with your shots! I hope all goes well and that you don't wind up fatigued or achy.
Beautiful gardens for sure! And all the flower photos - so nice and pretty. Thank you for posting those. I just can't get enough of spring.
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Evening everyone. Cool and very windy here today. Had what I believe was a juvenile parakeet at my bird feeder. Need to do more research as it was completely green. But a right plump birdie.
Sweetpea, my DH doesn't share everything about his cancer with me. I get frustrated but realize this is his decision. However, you are in a financial worry and that needs to be addressed. I'd call a family member or speak to a social worker for suggestions.
Tanya, Loved your pictures so much. When I lived in Reading, Pa., we would visit Longwood frequently. I loved the huge lily pads most of all. It's been 45 yrs. ago. We do visit Biltmore in Asheville, which is gorgeous but not as vested in floral and fauna.
Hi Mel, sondraf, mara and all. Anxious to hear when sondraf gets home. Mara, I don't have a head bleed but do have blood in my urine and they don't know why. Been that way years. I guess some things are just not answerable, but I know I try to find out. In pockets for all your needs…
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Mara, great to hear that things are stable!
MKestrel, that is a beautiful apple tree.
Mel, Theo is the cutest pup ever!
Irish, so glad to hear that about your husband.
Intolight, I hope your toes look fabulous.
Sondraf, sending you lots of love to get out of the hospital, and to get some answers and relief.
Emac, so hoping the WBR will work and your side effects will subside quickly.
Tanya, beautiful flowers, tulips are my favorite.
Three months out from spine surgery, and my doctor cleared me to do some gentle gardening, hurrah! I have a big old long list of things I want to do, but will go slow and pace myself. Meeting a friend tomorrow who is going to take me to some, ahem, Younger People's clothing stores (she's a decade younger than me), in search of some super comfy and stylish pants. Had my hair trimmed up for the first time in three months also, and feel decent about myself today. We'll see how I feel after going into hipster stores tomorrow, lol.
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nice to see you Sfcakes. Always good to see you back here. We think of you often.
I live about an hour away from reading pa also ! So a few of you are from my general area or visit frequently. That’s nice. I’ve really never been west. I went to Colorado and California but only in lax airport in California. Colorado was magical and I didn’t want to leave ever. The mountains are majestic and even look unreal , they are so beautiful. I wish I was able to travel more. There was so much. More I wanted to do. I’ve been to Hawaii which was mind blowing. Bermuda for a honeymoon. And that was also absolutely gorgeous with pink sand and colored villages. It was a dream. I wish I could go back.
sending love to all. Going to be nice weather here. I have one errand to run then I’ll be in nap. Seems like I look an awful lot to my naps. What a way to live. Fatigueville USA3
