My Husband, My Life, My Love, My Family, My Cancer
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sadiesservant
How about a loose caftan-type dress over pants? There are lots of inexpensive options on line and I see women of all ages wearing this combo. Some are described as beach cover-ups - perfect for wearing during your imaginary trip to Mae's beautiful beach shack.
I think of you often as you work your way through this new challenge.
Hugs
Eleanora
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Thank you for the obituary, I'll copy it and see if it is already added to the Brain Mets thread.
Sadies servant, I was having much the same idea, really loose pants that would not impede the function of the catheters.
Today, I have decided to retire the outdoor walking except to the bus stop, I am a high risk for falls and will have to practice walking indoors as well as squats and getting off the floor. I don't feel safe anymore. Will eat better and stay inside, perhaps walk around the parking lot. Got 2400 just walking through on grocery store, mall walking is an option too.
Laundry is done so am just messing around with an old broken laptop to see if I can fix it. I don't tend to throw stuff away when it comes to technology, I think computers are my favourite things to tinker with, tablets come a close second.
I am going to have some beans, ground up, add some beefless ground, cheese and wheat bran. Probably bind with mayo and chop up about 3 or 4 doritos chips to add some crunch. Will season with measured garlic, keep adding too much and it is not that good and finally add some salt, we will see how it is. I also bought some chocolate bars so thinking that I can chop them and add to a small amount of chips and peanut butter that is melted. I also bought some almonds to use in the tiny cluster mix as well. My chocolate chips are nowhere near done.
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what a wonderful woman. So sad. I hate you cancer. Thanks for sharing that with us I would have wanted to see this.
Mara~Good Choice not venturing out. Just stay safe , don’t take any chances.
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Me again, got a response from the property manager that supposedly a plow and truck will come by to remove snow and add salt, she also asked when I fell so I told and described the fall and my rescue from DB and SIL. I am skeptical. I thought she mentioned she would bring shovels and salt too. I know it would not be my job but I would do that selfishly for my own safety. If it is not here by Monday as she mentioned, I will order the shovel and container of salt off Amazon. Pain has set in around shoulders, neck and head because of the fall. Forced to take it easy today. Stretching and squats were about all I could manage.
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Thanks for the suggestions everyone. I need to add some longer shirts/tops to my wardrobe for sure. Just need to push myself as I hate shopping. Longer, looser tops might also hide how rail thin I’ve become. I keep laughing at the irony. After struggling with my weight down for years, now the struggle is to keep weight on! Life sure likes to throw us curveballs.
Susan was an incredible person. I hadn’t realized we were so close in age - she was two years younger than me. This disease is so unfair….
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hi again.
Yet to start herceptin only infusion, so not sure of procedure.
Mara51, or anyone, cd i ask more info?
When u get only herceptin, do u get any pre-med before it.or do u just get herceptin only infused straightaway?
Any different from 1st infusion to later infusions?
Mara51, sorry u had a fall. Do be careful when u go out.
71 yrs old
Er- pr- her2+, stage 4
Phesgo till nov 2022
Herceptin injection till dec 2022
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Sue, assuming you’ve already had chemo, you probably wouldn’t get premeds but if you’ve never had Herceptin before, they might have the 1st infusion for 90 minutes (loading dose), then usually 30 minutes after that.
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I am in less pain than I was yesterday. Still not going out, too much snow. By next week, will be above 0 which will help with some of the melting
Doing some laundry and will put my dishes on to soak, lazy and don't feel like scrubbing. I could not stand looking at my apartment hallway so used my little Bissell stick vac and picked up as much as I could but only doing my floor, up to the other residents what they may want to do. I am also getting movement thoughout the day, marching for 3 to 5 mins, aiming for an hour of that, squats and other leg exercises don't count, just extra. The marching keeps me from dragging my feet, the hour or whatever it works out to will help add much needed activity. Don't even need music for that. Debating selling the treadmill but will keep thinking about, I really am not using it but could probably leave it set up and do the short workouts as well on it. I just have no desire to long workouts when small ones through the day are just as good. Paul Eugene workout will come back once the shoulder and arm pain go away.
Breakfast was higher calorie hit. Had a pepperoni pizza slice to which I added green olives and extra cheese. Planning to cut it in half next time, it is certainly big enough. MIght do the same with my hashbrowns, we will see.
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sue51: My first infusion of H was an hour, maybe it was 90 minutes, I can't remember but it has been 30 minutes ever since. Every three weeks. No pre meds needed. I don't have much in the way of Se's afterwards. Some days I feel "vaguely yucky" for a few hours afterwards but to call it nauseous, sick or whatever would be a huge overstatement. It migt be the perjeta I also get
You might want to ask about getting a port.
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Hi! I don't comment much, but i do learn from all your experiences.
thks everyone for info.
Afraid of having a permanent port - surgery and maintenance. But only can use the right side for infusion since the left side had lumpectomy 3 yrs ago.
How do people who have double mastectomy manage blood draws and infusions? Port is the only solution then?
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Sue 51, a port is preferable when you getting long term drugs via chemo. Blood draws will depend on your hospital and if blood draws are done through a vein. In my case, port is mostly accessed for chemo, my veins are used for blood draws, contrast injections and that is about it. I wish a port access was possible for scans too but that is not the case. Wish everyone used my port. As far as maintenance, there is no real maintenance once it heals, just make sure you do not bump it, otherwise, I mostly forget the port and it offers less chance of infection.
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sue51: the surgery was done under Twilight sedation. It has never required maintenance since I don't require special flushing as I go every three weeks for infusion. It can be removed. It saves your veins and your hands are free while you are having infusions. The only downside for me is cosmetic. I am thin and it really sticks out.
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I am in less pain each day from the fall. It is also warmer. Property manager dropped off shovels and salt, will let the snow melt down some and then put salt tonight to prevent ice forming. Planning to walk in cleats outside as well.
I am also getting my steps inside and did my squats, hamstring curls and calf raises in an effort to build up the strength there, I increase by one per day for each, only on 11, working up to 100. Protein will be my friend this way. When I am not sore will practice getting up as if I have fallen. I can easily do it in front of the chair but I also want to get to the point that I can do it from the ground.
Waiting on Amazon to arrive with my order, got some turkey stuffing to use with canned meat and beans, just needed something a bit different than rice or pasta. In the meantime, washing clothes and my cleaning cloths, yay! I also found a site through facebook called cheap meal ideas. Giving good ideas for different things to have.
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Just me yapping again, this time about a decent breakfast. When I shopped last, I accidentally picked up canned wax beans. I don't like those but decided to just chop up along with the black beans and some chickpeas. They are stored together so there was 1/4 cup of that, I chopped one hashbrown I warmed in the microwave as well and chopped spinach last, added 1/4 cup beefless ground. Put all in a frypan until warmed through. To bind, I used 6 zesty cheese doritos, one tsp of taco seasoning and one tsp of garlic seasoning and ground up in the spice grinder. Added the sour cream and stirred together. Figured sour cream is lower calorie but would also tame any spiciness. I must say the food was quite delicous.
Next cooking adventure might be to scrape off the pizza toppings and add to rice or pasta with 1/4 cup bean mixture. The pizza is rectangle. Wipe off the topping and try making toast out of it. Not sure if it will work but my mind keeps imagining new things to eat. I also want to get a proper pantry in the living room to keep all the canned stuff together as I don't have room for another freezer. That will be later after bills are paid.
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Sue51 — I had my port removed shortly after I finished chemo because I developed a clot in my jugular and since I was stage 2 they decided it was safest to remove it. I got the rest of my H&P infusions only in my right arm since they don't do any procedures on the left after nodes were taken.
By the time I was getting my last infusion they could barely find a vein in my rightarm and were stuck re-using the same vein in my wrist over and over again. Now a year and a half after finishing treatment, they still can't find any other veins for blood draws. I also really missed my port during infusions because when the needle was in my wrist or arm I had to be really careful how I moved and was stuck trying to read or operate my iPad and phone one-handed.
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hi melbo. My experience with veins and infusions will likely be like yours.
Just wondering, how often do u use your one remaining vein for blood draws now? Did the nurse say the other veins are damaged since they can't be used? Were they used for years before?
It must be painful too. I had 10 and more infusions done on my right hand only and the skin is now thin and gets scratched easily. I also have to use the same right hand for dyes in ct scans.
Pains aside, the fear is permanent damage to the over-used veins. How then to draw blood if these hand veins cant be used?
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I have had a port for 2 years now. After it took 7 different medics to try and get access to a vein. They can only use my right arm, as left has had nodes removed. I did have a blood test from my arm recently as the medic wasn't port trained but he got in easily, maybe the veins have had time to recover a little? I have had the port flushed once , and it occasionally plays up but, it is so much better than being stuck numerous times!!
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now that I am done with active treatment I only have blood draws once or twice a year. Before cancer and chemo (I was told chemo damages veins) I used to donate blood fairly frequently, usually from my right arm since I’m left handed, and there were never any issues. I’m not sure what they will do if I need more frequent blood draws again, but I know a couple of times nurses have suggested using my right arm despite the node issue. I’m guessing if I have anything that requires frequent IVs they will recommend a port and put me on blood thinners to prevent another clot. Hopefully it never comes to that though
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Melbo, my veins are terrible as well so need to do scans that require contrast with a vascular nurse. I was spoiled in the past to be able to have my port accessed which was good but no longer happening. I have to change my appoint to M to F and they have to be able to get permission for a port access if they cannot get my vein from the oncologist and she is there M to F as well.
Not doing a lot as of yet, wand washing some clothes, hanging to dry instead of the dryer. Using a regular fan to speed the drying. Feel like I want to treat my clothes better. Gives a good arm workout anyway. Still have 12 reps of my squats, hamstrings and calf exercises, I will probably keep mentioning the reps so I have a reminder. I also plan to put cleats on and find someplace to push all the slush since we have salt and a shovel to avoid it refreezing again. The property manager realized finally that salt and shovel would be a good idea. The snow is softer but I want to move it since it still goes below 0 at night. I know I am not responsible for it but I am doing for myself. I will wear cleats.
Breakfast will be 1/4 cup pasta, garlic, 1/4 cup bean, chick pea and wax bean mix, 1/4 cup beefless ground. Chop the beans up and add cooked pasta, tsp butter and garlic mix, top with the beans and beefless ground, add a small sprinkle of cheese. Unsure of other seasoning yet. Will be cooked in frypan til cheese melts. Sprinkle wheat bran and peanut butter powder for fibre and protein as well, should taste good and not be too bad calorie wise. The shovelling and leg exercises will function as exercise, will be walking to the hospital tomorrow. Will be there for a while so put some extra money on my debit card to get a meal between doctor app't and Herceptin.
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mara, it just annoys me that they "dropped off" the shovel and salt. They should be doing the work themselves. I know that's not going to happen, but SHEESH!!! Stay safe out there. Do any other residents ever pitch in? Do they at least thank you for vacuuming the hallway or taking care of all the stuff you do? ("Annoy" is rather a weak word for what I really want to say!)
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Mara, they are plain rude. They suck and should know it!
i agree with sunshine!!!
We celebrated my son 26 th birthday yesterday and I was struck by how fast they have grown. Made me have. To reel in some tears with joy and sadness that my time with all of them being toddlers and happy go lucky. Is gone Now they hold their breath right along with me when I scan or anything comes along medically related. They get angry at why I had to have cancer. Not to wish it on any one else never. But they feel cheated also. I am only 52 diagnosed at 45. All young. Ages. A long 7 years. Hope I get more than that more. It’s so hard. I’m sending all off. You ladies hugs.0 -
Mel, no, I only do my own floor to please myself. No one else has ever pitched in. I was unable to shovel due to my back deciding it was going to go out, not sure the cause but already taken advil and using a tens device. Will use a ball with blunt spikes to massage later and have voltaren. Also, snow bits have not become softer yet. If my back was OK, I would have been able to lift the salt bag to start the melting. I will need to be patient. The back hurts but I think part of it is my poor posture when sitting, I was not sore in my back after the fall. I will survive. The TENS device feels good right now. I will wait until it has been long enough for the snow to soften up and see what I can do then.
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sue51: I used to get bloodwork every three weeks and now it is every six. It requires trained people to do blood draws from a port. That usually means my infusion centre. I don't want to wait for a few hours after the draw to then get my infusion. I just go to the local LIfeLabs that is only about a block or so from where I live and they just use the elbow vein. I go the day before. When I show up for my infusion the centre already has the result. My contrast dye for the PET is the back of my hand but that is only every six months so lots of time to heal up.
When I am in the centre, feet up, plugged in I can see other people getting their arms wrapped up in warm blankets, nurses smacking their arms to find a decent veins.......the occasional leak that stings......
I am happy to have the port. Some ports require Heparin(sp?) after the infusion to prevent clotting but I just get a fast saline flush
Don't be afraid of getting a port!!
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don’t know what I would without my port. I have no veins.
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Whooshing in to wave hello. All is holding steady here, with me, but it seems Hub's turn to slowly fall apart. This getting older is for the birds. As is this ongoing, mushy, icy, gray, endless winter. Enough already! I want spring to come so I can light stuff on fire! Thought about lighting stuff on fire today but getting wet, soggy wood to burn after I dig it out from under the snow .... this requires a lot of accelerant and then I run the risk of burning my hair or eyebrows. Wouldn't be the first time. So no fires today, in the snow, despite the fact that I really want to burn some junk, like that scabby looking lawn chair that looked pristine, then interestingly weathered, and now just looks shabby and old. Time to go! Hugs to all!
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Giving an update on my scans/MO visit. I did the MO visit per phone call today - telemedicine - with my scans and labs done last Friday. (So I wouldn't have to go back there Friday AND Monday)
Scans stable. I cannot see the report yet via patient portal. But she said lesions on liver stable with nothing new anywhere else. Labs looked good-- I did see them on the portal.
I had questions for her-
1. I want my Port out. I have had it 5+ years now and I want it gone, and we can put in another when I need it later. She agreed to that. I have to call a local surgeon and see who will take it out locally.
2. Change scans from every 3 months to every 4 months. She agreed.
Saying HI to everyone. I read here daily. I might not post, but I care about all of you.
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Well no salting or shoveling occurred, I threw my back out bending over, in the worst pain ever for me Fine when sitting but so much pain otherwise. It wasn't sore after the fall last week, just came up today. Hopefully it eases up before Wednesday's appointments. Did not get garbage out either.
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Hello, ladies. I'm still reading along. Really feeling the weight of bad news here lately - sad for others and powerless. I just read on another thread that B-A-P passed in November at the young age of 34. It seems grossly unfair and it makes me fear for my (grown) children when there's no logical reason for me to do so.
Mara , so sorry your back is acting up. I'd still blame the fall - you've been stiff and sore and that probably changes how you're moving.
Candy - yay for stable! And for getting the changes you wanted. I only scan every 6 months. I've never had a telehealth appt, but it sounds a lot more convenient.
Hi runor! Hurry up Spring for you!! Our weather is crazy. We had 3 days of freezing rain and ice last week, and today it was 70°F.
Waving to everyone, hanging around in pockets, as needed.
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SeeQ thank you. It is better today, doing some more squatting vs bending over and already have taken a couple of advils. It is definitely muscular feeling. I was able to take out the garbage as I woke by 5 am and it had not been collected yet. I am going to get up every once in a while for an indoor march but as it will help the back loosen up. I should be more improved by tomorrow for going to the cancer clinic.
Edited to add, the marching has made a huge difference and I am finding that doing a squat to reach for things on the floor has helped alot. I have a stepbench that I march on top of for a minute or two several times has done wonders. I may go out today but we will see. I was craving and egg mcmuffin so allowed a Mcdonalds order as well as another Amazon order for laundry supplies.
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Candy, congrats on stable.
My scan results are stable too, although I was expecting better in the brain, oh well stable is still good. I will be getting a dose reduction, hopefully that helps the fatigue.
Pre birthday dinner tonight with DH and a few friends at Fogo de chao, yum!
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