PART 2. NO to radiation treament - SHARE Metastatic ...

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PART 2. NO to radiation treament

kearnan profile image
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After being very stressed about her telling me someone would call and it would be about more than likely getting radiation FIVE DAYS a week from 3 to 6 weeks. I know from a friend that had stage 2 and had chemo, mastectomy, radiation and that the radiation for her was the worse part of it. She said I have a strong support. She has her husband and three single adult children living with her. She said the fatigue was beyond description and that being alone, she would expect it would be worse for me.

I finally sent my onco an email asking her to call me and saying you can't give me that type of news, no name or date or even an explanation and I was so stunned by what you were telling me that it hadn't had time to sink in but I would like you to call me rather than put what I am going to say in an email (She hates that bc I think she gets scared).

Anyway, she called me and I said I have decided I am NOT doing any radiation PERIOD. I said I have an fairly good quality of life now and am done with this and I am feeling no pain bc of the pain medication.

She calmly said okay, I will cancel the call. (Just like that) I said who ordered this, who suggested this, was it someone above you. She said no, nobody can order something for you without my okay. Nobody can go above me.

She just said she thought it was better to have it done but if I felt that strongly about it, she could just cancel the call. I said I feel its more of getting money infusion into the cancer center and that you can't just tell a patient that out of the blue. I said I am tired of having to figure out what you mean because you never really clear on what you are saying and it's just stressful.

So just like that it is okay, but she said let's keep it on the table (LOL...that is where it is going to stay, on the table). My pain onco then called me and asked if I wanted my pain meds upped. I said no right now three 10 mg. of percocets per day is working fine so for now I am good with what I have.

On top of all this I live in a Brooklyn high rise, 12 floors and the penthouse floor. Usually our central air is usually turned on by Memorial Day. They also had installed a brand new inground pool and redid the whole back yard (but I never use it anyway...very cliquey, but many of the retired women basically live out there.).

But removing the old "chiller" (which does the central air for the entire building) was a massive undertaking. For weeks, the constant banging and drilling was enough to drive me crazy. Then just as they started to install the new "chiller" the pandemic hit and the company did not come again for two months. I know it is not the building's fault but now we will NOT have any central air until July 8th. I won't make it. Yesterday was our first humid day. I feel like I am in an oven. It is going to be 95 tomorrow with high humidity. Its humid today. I can't stay here and they do NOT allow us to install air conditioners in the windows (some regulation). I am sure many of those who are more elderly or have young children and now no pool are suffering also. it is unbearable and I cant even imagine having to live like this for weeks. Of course, on top of the protests that are going on. Last night in Brooklyn, four men ambushed two cops at the protest in Brooklyn (a different area in which I live) and they stabbed a cop seriously.

There are many protesters who are doing it calmly and peacefully but there are bunch of them that are now (not just in Brooklyn, NY for sure) are breaking into stores, stealing and causing more rioting. These are people that are using this opportunity to do what they want. The police officer is in seriously condition. They freaking just jumped him. Meanwhile, we are still in pandemic and now on top of the pandemic, we have curfews here in Brooklyn, NY and other areas of NY because of those damn few rioters just to start trouble.

So now we have curfews of having to be home by 8:00 pm. I am 60 years old and now on top of everything else I have a curfew (not that I go anywhere anyway).

And obviously the protesters here in the the US and those abroad are NOT SOCIALLY DISTANCING so I expect we are going to have another resurgence of a large number of people being infected.

I cannot stay in this apt. I won't make it. So hard to breathe and fans don't do much of anything.

A friend in SI said I could stay with her. Nervous bc she has two children, a 22 year old son and an 18 year old daughter that are in and out and I doubt very much they are social distancing when outside with their friends so very nervous about that. My onco advised against it.

But at this point, I have no choice bc I cannot live in a one room oven. I don't have a balcony or a backyard. I dont really want to stay with my friend because of living so long alone, I have my "routines". My friend is great to offer but she is also very lax with housekeeping but promised to disinfect before I come.

Plus for all I know I can be the person who can infect somebody and I don't need that on my conscience but it seems like I am going to throw caution to the wind and go stay there because I cant deal with the stuffiness and heat of my apt and the amount of time before our central air will be working.

So I pick up my pain Meds on Sunday and my friend will pick me up. She does not have central air but she has an air conditioner in her living room. She said I can have her living room and she will close the french doors. She said her kids are always out and don't even use it.

So I am going to have to go there and stay until a few days before my next 6/25 (also her daughter's virtual graduation day) so will have to come home. I have not stayed or really even seen my friend in two years (last year her father suddenly developed dementia and it was very stressful for her and her sister and then she passed away two days after their very tough decision that they could not handle doing 12 hour shifts at his home and put him in a nursing home which they had promised him they would never do. He died two days later nursing home which I think was a blessing for him and for my friend and her sister.

I just tried to convey to her that I am not as well or energetic as I was two years ago so I wanted to prepare her for that.

Anyway, so no radiation and that was a relief. We have curfew again tonight. I was sickened to read four agitators (they are not protesters just using an excuse to destroy, burn and loot) ambushed and stabbed this police officer. They do not make enough for have to deal with this kind of nonsense.

I expect a major resurgence in various of the US where there are protests in just about every state and they even though many of them are wearing masks, they are not socially distancing so I just feel like things are going to get worse again by end of summer as we see a sharp increase.

I am praying hard to God bc the world is a mess right now. I hope everybody stays safe, uses a mask, practices social distancing. I wish I lived in a rural area where I could sit or walk around with a mask but it is what it is so I wish the best for us all.

Thank you all for your good wishes. I lost two friends because I was furious they posted photos of them in upstate NY at large barbecues not wearing masks and not social distancing. Total disregard for flaunting the rules and then having the nerve to condemn the protesters. Just because they say "it is tough to stay home and they have husbands with them". Well, its tough on all of us but more so for the families of the 20,000+ people that died from this virus.

It's like everybody already forgot that in lieu of the protests. What the hell is wrong with everybody?

Just tired and wish I could go somewhere. I keep thinking I will go to the library, and then you remember you cant. NY is trying to start phase II but now have pushed back the date bc of these protests. It was very disturbing to watch that video and look at the hell that one racist cop incited all over our country and in other parts of the world. They now have arrested the other three officers who were there and watched and did nothing.

Cancer is actually in the back of things right now. To me (as stupid as it sounds) not having an air conditioner and how stuffy my apt. is so hard to deal with. I pay for car service to take me four blocks and home again. I hope these protests end soon and now I fear for the cops' safety. Sorry for the long email, but this is my "conversation" for today. Wishing you all better times and pls remember to practice social distancing.

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kearnan
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12 Replies
Barbteeth profile image
Barbteeth

Hi there

It sounds horrendous with those riots going on...there was a big protest in Hyde Park London and in the news you could see no social distancing was going on...I really despair of humanity...what the hell are they thinking!!

About your hot flat....I know you’ve organised to stay with a friend now but if I was in your position I would have ordered a plug in air conditioning unit...there are some very reasonable priced ones...if anyone complained I would just explain your health problems ....I’m sure plenty other residents will be complaining...it’s ridiculous

My house is the opposite...freezing in winter but cool during hot weather...it’s horrible to be too hot and I don’t blame you for moving out

Also I’m glad you were assertive about the radiotherapy...I don’t think you were treated well or your opinion even considered...we do have to stick up for ourselves...shouldn’t have to though

I wish you well and I think a change of scenery and different people to chat to will be of benefit

Barb xx

hdhonda profile image
hdhonda

Oh Ann Marie,

I can't imagine being with out ac that long. Would two or three fans make it bearable? I can send you a fan if that would help. Have you talked with your landlord. Maybe, they could get you a small portable air conditioner that you could put wherever you are.

I don't know anything about radiation, so no opinion but certainly support any decision you make. Where were they going to radiate?

I can't believe the whole world is in chaos. New York has been especially bad. People are not wearing masks or social distancing here. I just hope a treatment and vaccine come soon.

I hope you can find a solution other than staying with your friend. That is a long time to stay with someone. I am afraid you both will want to kill each other ☹️.

Best wishes for this to workout for you. Hang in there. You have many friends here. Blessings Hannah

mariootsi profile image
mariootsi

Maybe you can start looking for another place. Your situation without ac sounds horrible. I wish you well and be careful out there in nyc! The US is going crazy! People are nuts right now!

kearnan profile image
kearnan in reply to mariootsi

Turns out the AC was actually on the whole time. I didnt know this because I never left my apt. where there are signs all over and I missed the email. So for those three days I felt like I was going to do, the stupid central air was on the whole time. Only me as my friends would say.

AnnaP668 profile image
AnnaP668

There are room air conditioners that you can buy that are totally contained in the room. I think they are around $300. Try not to focus on all the negatives. You are so blessed to have a friend willing to help.

BluHydrangea profile image
BluHydrangea

I was 9 months pregnant without air conditioning in Aug years ago..... I feel your heat. Hope the situation with your friend works out well. 🌵🌵🌵

Sunnydrinking profile image
Sunnydrinking

Hi

I really feel for you ... being too hot is far worse than being too cold. I would definitely get something sorted to help you - do you know anyone who could lend you something to help?

The protesters in The USA & now London in the UK are not socially distancing and I fear that more lives will be lost to COVID-19 & stabbings, shootings etc ......

All this on top of MBC & worrying about progression & best treatment options etc - not good times .... I always try & comfort myself by thinking there is always someone worse off but sometimes it’s easier said than done.

Take care & I hope it helps you staying with your friend for a while.

Jo xx

kearnan profile image
kearnan in reply to Sunnydrinking

Turns out the central air was turned on the whole time. With these new percocet meds and other meds, my thinking is foggy. I suffered and never left my apt. so did not see the signs in the lobby that the AC was turned on and I never tried it because I assumed it was not on. I barely looked at my emails in which they sent us emails it was turned out. I suffered to the extent I felt like i was going to pass out and it was on the whole time. I just had to put on the switch LOL

I went to do my laundry and I felt faint and said to super I wont make it and how is everybody else handling no ac. He said what are you talking about...its been on the whole time. I said are you kidding me. Ran back up to my apt. and hit the switch and felt the blast of cool air.

I tire myself lately LOL....

I’m so sorry to hear of your discomfort. We live 3 rd floor in an apartment in a City Centre. We have a floor to ceiling wall to wall window with the sun on it all day. It’s like a greenhouse some days. We open our front door and fortunately have a balcony so we open that door. Our temperatures in the UK aren’t as high as yours. As suggested maybe you could purchase an ac unit or more fans. It’s not ideal but may help. As far as radiation goes. I had it for five days three weeks with weekends off. My skin was a little red and I couldn’t wear a bra. Apart from that I was ok. At the time I had a 50mile round trip each day and drove myself. We lived in a remote part of Cornwall in the UK and hubby had to work as he had started a new job and I wanted to be on my own. I have been offered radiation again on my pelvis and ribs but I have declined for now as I don’t know how bad my mets are going to get. When the time comes I won’t hesitate in having it again. I hope this helps and I’m sure you will make the right decision. Best wishes

Cheryl

kearnan profile image
kearnan

I'm an idiot. I think all the meds I am taking (more now for pain, etc.) make me foggy I suffered for two days sweating so much I could barely move. They usually before they put on the central air for the building, come to each apt. , change the filters, vacuum the vents, clean the water plate, etc. Usually, it is done before Memorial Day. We got a memo about two weeks ago and my floor 5th is not being done until June 23rd. They start from penthouse floor and would be done with lobby on July 7th.

I thought I was going to pass out. I just stayed inside and didn't even have the energy to read all my emails and such. I decided to do my laundry the other afternoon and when I went down there (plus I had the darn mask on which makes things 10x) I seen the super and his wife and I said I don't think I am going to make it until July so I am going to have to spend some time with my friend which I dont want to do but I cant live with the central air.

APPARENTLY, THE CENTRAL AIR HAS BEEN WORKING THE ENTIRE TIME!!!!. I never checked bc I assumed from that memo that it would NOT be on until mid-July from that memo. I was like WHAT. Ran back upstairs and turned it on and OMG....my apt. went to ice cold (the way I like it within 20 minutes).

Then I saw I missed an email that it was ON. So I suffered needlessly for three days and felt so sick and it was working the entire time. I keep to myself so I don't really know people here except to smile and nod my head (that is ny for you). I felt so stupid. The super could not believe I thought it was OFF.

Sunnydrinking profile image
Sunnydrinking

Thank goodness you now have air conditioning and it’s a funny story to share... stay cool 😎

I bet you now appreciate a/c more than ever. Our UK weather has taken a turn for the worse again and we definitely don’t need a/c here at the mo.

Take it easy .... stay safe

Jo x

NPmary profile image
NPmary

I am so sorry, that is all so hard to cope with. I couldn't deal with that a apartment and no air either.

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