My Husband, My Life, My Love, My Family, My Cancer
Comments
-
@irishlove So disappointed to hear about your family. You have gone above and beyond for your children and now in your time of need, they let you down. I think other people have no clue about the pain that we endure, especially you with MS on top of the cancer. I hope that the epidural will really help. In the meantime, you can distract yourself your Phillies and Eagles!
5 -
@irishlove - Oh I am so sorry about how you are feeling. I too get extremely lonely and have big family issues, but like you say, they are personal, and unlike you, I have not had the courage to talk about them. Please know that I am thinking of you and in your pocket through all of this. I have been truly amazed at what you do accomplish, given your multiple health issues. I could never be out there gardening like that, and taking care of all that outdoors (plants and animals) like you do, although I would love it. Know that we are always here for you and care very much! Hugs.
3 -
@irishlove I have not enough words to add to the eloquence of others, but I feel your pain. Having our family let us down is the worse pain of all. I am sorry this has happened to you, one who has gone through so much. My family is still somewhat supportive after nine years, but I think they are showing signs of disease fatigue too. I try to not complain, but it is hard when I have to accept more and more of their help. My four grandkids have never known a "vital" nana. My DGD and her mom live with us and she has never had a grandmother who was not sick. She sees it everyday and I try so hard to appear well. But it is her grandpa who takes her places, and gets her up for school when mom is still at work (she's a night nurse.) It's hard… I do all I can and she is my joy. My prayer is that she knows she is loved, and that it will build her character and forge a positive outcome in this hurting world. I will be praying this epidural brings you relief.
5 -
Wow you guys it’s just a huge amount of daily turnover to catch up on. I don’t know what I would do without this group of dear women here. From what I’ve read through I’ve noticed some things I had not been quite aware of. Ha !! that’s probably because I’ve been so sedated these days.
@irishlove , without getting too personal, I do really get the loneliness you are experiencing . I totally relate to those things you mentioned. Lately I feel like the identified cancer patient with my extended family.. Sometimes I think their lack of whatever , is their way of accepting the situation without me one day and are just busy in their own lives as young adults. I also feel like a grandparent who was always 1unable to enjoy them as a healthy vigorous Mimi. Ahhh @irishlove , Family stuff is always complicated and not without. Some kind of drama. Hang in there my girl
Right now I am in the car driving up to a follow-up visit with my my pulmonologist. ….Again we are staying all night at the Marriott, compliments of my DS who has points and our stay is free. Tomorrow is my Radio Frequency Ablation on the cervical spine 8 facet vertebrae. My Neurologist from the Spine Brain Ctr up there will do the whole procedure while I am sedated at 7 am tomorrow morning. So I will check in tomorrow sometime after I get home and sleep off the sedation. Love you all🥰🩵🌷
6 -
@shanagirl - In your pocket once again (did I ever leave?) and wishing you a very easy and successful procedure. Know that so many of us here will be thinking of you with our fingers crossed. Have a restful night. Hugs.
1 -
Shanagirl - best of luck with your RFA. I pray 🙏🏻🙏🏻 it works for you. I had it 2x for my SI joints and both times it failed.
Miss Mariah turned 7 today and spent a great day at day camp where this beautiful photo was taken:
7 -
@irishlove Sorry to hear that the loneliness that has crept in. You always give everything you have to your family even through all of your illnesses. You deserve so much more and I hope something snaps and makes them more aware of your daily needs. Meanwhile we are always here to listen and offer support , we all love you! Prayers up for a successful epidural this week. GO PHILS AND GO BIRDS! An very exciting time to be a fan and a good distraction in our lives. Big warm hug your way♥️
@goldensrbest Well Happy B-Day beautiful Mariah! Buster said she's a beauty and sends a sloppy kiss🐾
@shanagirl Sending love and prayers for a successful RFA tomorrow. You know all your sisters here will be squished in your pocket . Hugs💕
2 -
Good evening sweet ladies. Thank you for your support and kind words. My heart is full of thankfulness for you ladies, my sweet friends. I guess this journey is a very lonely one. I had heard friends either are with you for the long run or run the other way. But when it comes to family, I'm so hurt. I am fortunate to have a good relationship with my husband. God bless him he's not well and yet listens when I'm struggling.
@shanagirl In your pocket for tomorrow. I know you really struggle with pain and I wish you were feeling better. I hope the pain medication can give you better relief. I'm sorry you carry your hurt quietly. If only they had better insight.
@goldensrbest Well happy 7th birthday, beautiful girl. What a great smile and picture. Thank you for your supporting words.
@cookie54 Thank you for you kind words of support. And that big hug. Yeah the sports are a good distraction.
@intolight It's so hard when the grandkids are living with us and our illness is all they know. I sometimes wonder if my DGD (age11) is angry at me. She wasn't going to school for 2 years, home schooled (not very successfully) by Mom and we were always pushing for help for the little girl. I guess I raised my kids, but when you see something so off, you just have to say or do something. My immediate family is small, only one grandchild, and like any grandparent you want to seem them succeed They moved out not too long ago to a camper. It's better for all of us, I guess. Your daughter and granddaughter are so fortunate to have both of you helping. It does take a village.
@threetree Oh I'm sorry to hear about your family issues. When you you're ready, we are here. Or perhaps a therapist could help? Does it take courage to say I'm lonely or desperation? I think I'm just desperate and already suffer from depression. Never had this condition until Stage 4 MBC.
@chicagoan You know, you're right. We do all we can to see them succeed. I would just like a phone call or card or lunch once in-awhile. When did it ever become ok to not give your folks a card for Christmas or a call or Mother's Day. Guess this generation doesn't have time or appreciate such sentiments.
@eleanora Oh you are so sweet. Wish you could come visit and we could go stick our toes in the sand. I would never evict you, you're too sweet…
Irishlove (Laurel)
3 -
Hi and good morning to all, it’s been awhile and catching up on your posts. Hugs to everyone this morning as I get ready for work. All is well in its own way, Sun is shining and the breeze is cool. Family life and friendships are complicated and the living with constant change in MBC life adds to the load, but so lovely there is this forum for connection and affirmation. Squeezing into pocket duty for everyone as well. ❤️
4 -
Just wondering if some sessions with a therapist might help? I have a Zoom session every other week (could have it more frequently, but this seems to work for now). It is just "talk therapy", no medication prescribed, as she is a licensed social worker and therapist, not a doctor. Took a while to find the right "fit" , but it was worth the effort. I can vent to her and say things that I would not say to anyone else at this point and I find it helpful to get things out in the open. I am on traditional Medicare and the sessions are fully covered.
3 -
@irishlove , I am so sorry for you feeling lonely. It is a hard thing to deal with, of course you can talk to us about it, we all feel. I am also sorry about your sister calling you a drama addict. That makes me feel angry for you. You deal with constant pain from the MS and cancer effects, have cancer drugs and many other things. She should try to live a day in your body before dismissing you. I hope this group and any live action group or others in your life are able to listen with dismissing and just hear you.
I have my CT scan this afternoon which is fine, just have to finish a meal round 1030 am or 11am latest.
Got laundry on the go, flipped my couch cushion, feels so good after a good flip. Beyond that, not too sure what I want to eat. Easiest way to go would be some KD noodles, beans and an egg. I did not care for the egg I add to boiling water to heat up so thinking I will chop a microwaved egg and cheese and heat a pan with some precooked KD noodles, not the whole box, just part. Option two is to boil up the ramen, still add eggs and cheese and fry up everything. Need to decide soon though. Add some chipotle beans, I just realized which is dumb, I have chipotle may that could be combined with a bowl of beans. Need to add sour cream as it is not mild chipotle. The barbecue beans are not super appealing so may just take whatever I want and turn them into a chipotle bean.
Got some laundry and the dryer going, washer that had the stank smell was wiped down on the inside and lint filters emptied, realized they could be washed out in the smallest washers as it is gentle just to keep them cleaner. I would put them in a mesh bag to protect them. Dryer is going as well. Love the laundry.
Recycle put out is today, got a couple of boxes that need to go from stuff I ordered this week like the cat food etc. That is no problem to get rid of, got a couple of garbage bags to triple bag and add to my bin out back.
Meal has changed, a meat pie, regular size, heat up 6 mins. Will just add some beans to the mix, got my carb, protein and fat from any toppings added. Looking at some caesar, garlic mayo and have the chipotle from the beans. I only a tiny bit if blending different flavours that are liquid.
I hope all have a good day and in pockets for all as well.
,
4 -
@irishlove - I don't talk about my stuff largely because I don't think anyone wants to hear it, and I would feel like I was just "dumping". I do have a good old friend, and my sister-in-law (who's also caught up in some of the same stuff I am re the family) and they both know the parties involved and the behaviors, so they are some comfort and help for sure. They do understand and lend an ear, and in the case of my sister-in-law, she too is very affected by all of this, so we can share. It's just such a darn shame, as I'm sure you know - like you said, just a Christmas card or a call or an email now and then might be nice.
@eleanora - Good to know that talk therapy sessions are covered by Medicare, that's news to me. I did try a telehealth conversation with a social worker who used to be at my medical clinic a couple of years ago, and it was a disaster. I told her a little bit about my family situation and at first she said that as a social worker myself (I am) I would know that as social workers "we always meet the client where they are", and then she proceeded to tell me how wrong I was about my thoughts and assumptions that I had just shared with her re my situation! Seriously! Well, needless to say, I never wanted to talk to her again. She moved on to some other location and I had no interest in talking to the new or any other social worker there associated with my medical clinic. I totally understand, Eleanora, how you had to find a good fit, and that is so important. I don't know if it would be worth the effort of looking around and asking for recommendations or not. Even though I too am a social worker, I really don't have a lot of faith in talk therapy for a lot of reasons. When I was in social work school we had two groups. One that went into mental health counseling and one that focused more on things like running food banks. I was not in the mental health counseling group and was always a little wary "iffy" about that business. Oh well, life goes on.
@mara51506 - Good luck with your CT today; in your pocket!
Everyone else have a great day. This September weather can be so nice most everywhere.
2 -
Well, I was lucky. I booked the PT trips BUT was waiting and thinking it was weird I did not get calls to remind of pickup and drop off times, checked the booking and lo and behold no booking today.
I figure I got it all in there, reviewed it and did not hit submit. I was super lucky because they were able to get me a ride there and home. We are talking about 10 mins later a ride appeared.
The appointment went fine but screwed myself a bit by taking the elevator to the first floor. Normally I exit the cancer clinic and go up hallway and use those elevators so people came and helped me. Next time, need to go the same way all the time.
All in all, CT was fine and short as well. Waited a while, they had to stick me m ultiplaces for the contrast, that was fine, hurts a bit when needle moved around but whatever, finally they went through my hand and I bled. Good scan, will get results 29th when I see MO.
5 -
@mara51506 Glad to hear things worked well for you today. Sorry about the multiple sticks. Hoping you're not too bruised.
I had my port flushed today. It only takes about ten minutes but it is worth the drive and bother to keep it functioning well. At least this time it worked well. We met my DBIL and SIL for lunch after so it was worth it. We are home now sitting listening to the sounds of roaring thunder.
4 -
Yeah, overall it was a good appointment for me, the needle was annoying but did not fuss in front of the worker. Wish I could have my port accessed before appointments in CT and MRI.
4 -
Mara, I request my port to be accessed for scans but there is rarely a qualified nurse available to do it so I just accept the needle stick. Sometimes I get lucky and there is one, but not always at a clinic that is close.
4 -
They always ask me when I am scheduling a scan if I have a port, which I don't. I assume that is so that it can be scheduled when someone is available to access it. I'd be annoyed if I had one and they didn't use it.
3 -
@mara51506 Glad all worked out with your transit issues and you were able to keep your appointment. Multiple sticks stink for sure and you have such a good attitude about it. Fingers crossed all remains stable.
@intolight Glad you also added in a lunch date after access. Certainly nice to treat yourself.!
3 -
I had my genetics testing done and apparently my breast cancer is not genetic. That is good news for my kids but of course we should all be diligent.
6 -
@cookie54 Yes, I am glad I got a ride and made it with 5 mins to spare.
@intolight Yes, the needle sticks are fine, they went through my hand finally though if the tech could not get it, the vascular nurse could have. Not much bruising which is nice. I am glad you had a good lunch with friends.
The Paratransit still have to ratify a deal or they can go out on strike the 21st of September. If they do, I will be forced to take the bus. Still need to get over fears of getting off the bus. Those kinds of issues should be less once my treadmill comes back, DB has confirmed he will bring it. Clearing out area where it will go, if not, can use it elsewhere. Big box in front of closet can stay, other boxes go elsewhere.
I am presently doing some laundry, got a blanket and a few clothes to do up. Washcloths used for cleaning will go into smaller washers after use. Reusing wash spray bottles with a label for different cleaners. Cleaning out toilet but think there is scratches to porcelain because after scrubbing out and soaking cleaners, it will not come out. Happened during the plumber visit. Oh well, nothing I can do about it, keep rest sparkling as usual.
I feel like having bean centric meals, got chipotle and green beans mixed together so thinking of dumping a bunch in the steel pot, sprayed with canola oil, add a dollop of garlic spread, little butter, dump a generous amount of beans. Putting in cheese and some tortilla strips. Not toasted just soft, mix together, let sit on the burner with a lid. I can add flavour with any of the over abundance of stuff I have by adding tiny amounts. Should be a good meal with lots of protein, will not take long either.
I obviously forgot to post this, I did have the bean centric meal, put some tortilla strips in, some peanut butter protein powder and some cheese, it came together as a super thick and creamy refried bean texture. I was pretty good if I do say so myself. I did not get hungry for a few hours, that is for sure.
4 -
Well, I finally got my chest CT scan results back (it took a long time!), so all three are in. It generally looks like things are stable and essentially unchanged from June. I think of all this as saying I'm a mess, but not a worse mess for now. Still need appointment to hear the official word about all of this from the oncologist.
Having some very nice September weather and hoping all have a good day!
7 -
Well, not much sleep overnight but that is OK, feeling pretty good anyway.
Started laundry, not sure about my first meal. Thinking of a couple of eggs, add some beana and cheese into the magic bullet then add the mix to a muffin pan, fill up each one less than halfway. Bake on 375 and make egg muffins. Would be nutritious and a good way to use up food and get some protein. I have to say, having beans blended into eggs makes them more palatable. I do not love beans but since I am not really a veggie lover, easier this way. Option 2 would see a couple of eggs, whipped first to avoid an explosion, still have beans added and then chop the cooked eggs and beans, add to a pan to be fried in canola spray, bit of the plant butter which I do not care for and some garlic spread as well.
Also in process of moving large boxes off the end of couch just in case the treadmill shows up tonight, need to ensure there is enough room. I am waiting for DB to bring it, not calling him all the time for it though
I have also stumbled on to an assist in getting up, a lift chair should I fall in the house. Out of my budget currently but would be a good thing to have to get me up without calling an ambulance or brother. The one on Amazon looks to be foldable and does not weigh a ton. Now if I happened to fall outside, I may have to rely on regular bus if Paratransit votes to strike would have to call ambulance to get help getting up. Still am doing squats and bridge pose and the ankle rotations and the up and down to keep that up. Hoping the treadmill does its job and gets my legs to a stronger point knowing that if I do not make use of it I also plan to keep walking on the spot to make sure feet are lifting as the should be. Not a march but ensuring legs are lifting enough.
I do hope all have a good day and in pockets for all.
4 -
@threetree Glad to hear the scan results look stable. That is a win in my world.
5 -
Well, I did get my boxes moved over but was huffing and puffing after moving them, no idea if treadmill arriving today but figure is better to be ready for it. Still got two of the boxes to open as needed but not at this point as I do not know where else they would fit.
I also ordered a new pair of wireless earbuds because the other pair was missing and for the life of me, was not sure where they went but realized that on the afternoon I tried to walk to the pharmacy and then got lightheaded and laid down, the paramedic pulled the earbud out of my ear. Glad I put two and two together. I was irritated by the inability to find them.
5 -
Just got home from a grocery shop niece and nephews were in the van so I did not make a big deal about the treadmill for this week, I can march tomorrow when less tired. I got some M&Ms in a big container, the peanut flavour, got some hersheys chocolate almond and some tostitos tortilla chips and some bacon bits, thinking could heat up the bacon bits to add flavour to different stuff, no frozen foods and not a ton of refrigerator stuff either. Still pricey but that is OK.
3 -
Got bad news today. Two weeks ago, my CT scan and bone scan were good-my cancer was considered stable, no new activity but my right hip continued to hurt. I asked for an MRI of the hip last May when I first started having problems, but the PA said no, so I spent the summer doing PT and acupuncture, in pain the whole time. When I saw my oncologist and told her how much pain I had walking, she was a little skeptical (you hide it well) but when I reminded her that I had cancer in that hip 9 years ago, she immediately ordered an MRI. I had it yesterday, she called first thing while I was still asleep this morning so I knew the news wasn't good. Apparently there is a 4 cm tumor at the head of my femur that the other scans missed. We talked later today and she is trying to get me in a doctor who specializes in orthopedic oncology so that I can have surgery asap. She's worried that the femur might fracture. I'm grateful for her quick action but frustrated people did not take me seriously this summer. I thought it was simply being off NSAIDS that caused all that pain. Now I just hope I can get in as soon as possible, and have whatever surgery I need-thinking it might be replacing my femur with a rod and a new hip joint. Even though I was so reluctant to get a hip replacement before, now I just want to get it fixed, get the cancer out and hopefully not have pain. Trying to declutter and clean in anticipation of a hospital/rehab stay and then more time cooped up in the house. Was thinking of Sondra and all the trouble she had with her hip.
15 -
@chicagoan Oh sweetie, I am sorry to hear of this reoccurrence. I can feel your frustration through my computer. I will pray you can get a quick appointment and get this all fixed. Why oh why don't they listen to us!!!
@mara51506 I am sure you are disappointed you didn't get your treadmill but hoping you can get it soon—perhaps next week. I try to follow your information about the potential strikes, etc., but don't respond. You always encourage me to get up and get moving!
5 -
@chicagoan - I am so saddened to hear of your news. That's pretty over the top about how they didn't look very hard; especially given that you had had cancer there before. It's good that you were so vigilant and sensed something no being right. I'm glad your oncologist at least is on it, and that there some basically immediately available treatment possibilities in the way of surgery, etc. Will you have help during your rehab at home? Yes, Sondra had all that trouble with her hip. Chicagoan, I am thinking of you and have my fingers crossed big time. Know that so many of us here are with you and in your pocket. Please keep us posted. Wishing you all the luck in the world!☘️
4 -
so sorry to hear the gut punch of news and empathize with your frustration. It's infuriating that our comments are dismissed and diminished. We don't have medical training but we live in these bodies.
Having read all of your posts these past few years, it's evident that you are a strong woman. This is a temporary setback which will hopefully have a quick solution. If it is a hip replacement, please ask any and all questions. Squishing next to three tree threetree in your pocket.
5 -
Chicagoan- So sorry to read of your news. Please keep us informed of what the oncology orthopedist says.
3
