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The waiting game 
Started by Marymary
08 Apr 2021, 6:28 AM

Hi all:  

Seems like we're always waiting on something hey? 

Waiting on dr. appointments,
waiting on tests,
waiting on results,
waiting on procedures/treatments. 
It's a vicious cycle - waiting.  

I've been on & off here since 2015.  And guess what we are waiting on more tests/results.  

My son's dad had kidney cancer in 2013/2014 & just about died like 3-4 times, then 2015 Inoperable Stage 4B throat cancer & shouldn't have lived through treatment & yes we're thankful n grateful he's still with us.  

My son's dad is my ex, we split in 1999, we've always gotten along like siblings for our son's sake.  In 2015 I moved in there/here because it seemed dire again & I wasn't going to allow my son to caretake for his dad on his own, it was his graduating year & I also wasn't going to pay rent for months again & never see my place so, here I am....still but now 

He went back in beginning of Feb/21 for CT scan on his 1/2 a kidney to seee how its doing he had a kidney stone during treatments in 2015 but they didn't want to touch him bcuz of that so results back & they saw something in pancreas & off for another CT scan & await results again, got results yesterday & pancreas seems ok but now something on his lung so now again another CT scan & await results.  But have to WAIT wait wait. 

This is not happening to me directly as he so lovingly (major sarcasm) reminds me but oh my gosh...try to be supportive & tell him look, we've been here before, my son & I are here for you & we'll get through together again ok.  He said no this is happening to me, its my 3rd cancer & its a mass so.....  Argggg.  

So he said alot there....1st it was they just see something on my lung to then its cancer & a tumor, a mass.  Got to fix the roof & sell the house etc. etc.  Like WTH?  
He is not 1 to talk/share, old school mentality where men are men blah blah blah.  

I honestly do not think I can do this again, seriously?    He is honestly just a miserable grumpy ol man since throat cancer diagnosis, that is putting it mildly.  Nothing brings him joy, our son use to be his pride & joy but not since 2015.  His choices to be that way.  He is PO'd @ his body,  our son & I know both know that.  There's no way he can live on his OWN no way, he has no short term memory due to radiation on neck.  

I'm sorry just need to vent I suppose, frustrating, irked & him not being open is what does it.  So we will see.  Last 2 times he took awhile to tell us, 1st one over 1 month, 2nd one, few weeks then  this time just over a day so that progress LOL.  

We will get through I know,  I am here for my son (24 yrs) period & at least we have each other. 

I'm just as concerned as he is & yes a 3rd cancer pretty much not good.  But we'll deal with 1 thing at a time and wait for scan, wait for results again.  Wait wait wait, we been doing this since 2013 whoa

sorry just had to vent - thank you 
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Reply by Seeker
08 Apr 2021, 3:08 PM

Hello MaryMary: I am glad you are taking the time out from all the worry and frustration to vent on this forum.  It can feel very lonely to go through the "waiting game" over and over again.  Many of us on this forum would probably agree that waiting for test results is often the hardest time of all; it can be exhausting.  Sometimes it is easier to deal with the results, whatever they are, than to wait and wait and let your imagination run wild.
It sounds like you are trying very hard to be there for your ex husband and your son, despite the ups and downs of your relationships.  Not easy.  I hope you can take a moment to acknowledge how hard you are working and how supportive you are trying to be.  It sounds like they are both lucky to have you in their corner!
I bet it is very hard at times to take time out for yourself but I also bet you could use a break.  Even a short one, like getting out for a walk, or a breath of fresh air on a balcony.  Just a moment or two to breathe and rest.  I hope you can.
I wish you those few moments of peace, whenever you can snatch them.
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Reply by Marymary
08 Apr 2021, 5:29 PM

Awww thank you Seeker for the reminder, so much appreciate it.....

I have to do more of that, get outside, walk/fresh air & NO I haven't been doing for me & unfortunately I'm paying the price for it now (healthwise) but will do so for sure.  Just been advised this AM, I have to go see a cardiologist in May so? 

I'm not going to go there and stress about him or I, but deal with things as they come, because stress is so not good for the body.  Holy moly.  

So yes 1 day at a time, what can be dealt with today & go from there. 
Thank you for your reply, Seeker  
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Reply by Marymary
22 Apr 2021, 5:58 AM

Well update, just advised by my sons dad, he spoke with lung specialist on Monday & not looking good.  He always keeps things to himself - god only knows why?  

So now they are doing a biopsy of sorts, a PET scan all next week I;m assuming to figure out the extent. 

Specialist well if it walks like a duck, looks like a duck - its most likely a duck...ya ok then....hi way of saying yes its cancer & a mid cancer, he says? 

Oh my, this is exactly why I advised him to have his son or me on phone so we can hear what he doesn't.  He so doesn't get it, you can't answer our questions or maybe he doesn't care to admit it because then he'd be admitting it to himself out loud.  Honestly, I'm just dumbfounded. 

He doesn't want to worry us or stress out about it - Hello?   Been here - done that since 2013 my gosh.  But I think this has more to do with him than anything else.  The severity of it all?  This being his 3rd cancer = this would be it in his eyes, something he said before.  

I mean once again, I asked straight out ok did they say a Stage, whats the TNM?  Oh its a mid cancer I told you, well what the heck does that mean its not 1 & its not 4?  So they gave you a stage then oh its probably like a 2 well 3?  Oh my, its a mass/tumour thats like 4.5 cm or something like that. 

Like pulling teeth, so I gave up.  I am concerned about my son through all of this too but he is strong. 

Thanks again, waiting results from all tests coming up over next 1.5 weeks so fingers crossed. 

Hope y'all doing good.  Stay safe gnite 
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Reply by Marymary
06 May 2021, 11:54 PM

Well this afternnon, right now as I type he's getting results whether he shares them right away or not....well that is not a given.  He refused either his son or me listening when doctor to call him with resuts so....

I honestly don't know if stubbornness or not carig anymore?  I don't know? 
I know he loves n cares a lot for our son & cares n loves me too but there he can't protect us from stress or worry, that part I don't get?  He is old school way of thinking but being all manly is not going to change any cancer results, not goin g to benefit anyone, ya know what I mean.

For some reason he's put our son & I in a family unit & him on the outside, not sure why that is? .Whereas our son & I consider all 3 of us A FAMILY!  Yes (son & I)we talk about everything under the sun, spiritual, his friends, aliens, NASA, gov't, cars, his goals/aspirations, outdoors etc. etc. 

Just coming to me as I type, I'm thinking its his way to cope with it all, segegating himself already, hmmm?  It'll be less pain, less dealing with emotions/feelings etc. if he distances himself which he has been doing over last 2 weeks, not talking etc.

Can only hope n pray - that's it. thanks for lending an ear,  Will provide another update when I know for a fact what is going on.  Hopefully sooner rather than later but have to let him digest it all first. 
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Reply by TrevorL
07 May 2021, 1:26 PM

Hello Marymary,

Thank you for sharing your experience as well as updating us. I am glad you are part of our community and sorry to hear that you are going through so much frustration and uncertainty with your son’s dad. I can imagine how aggravating it can be that his way of coping with experience of cancer is to separate himself from emotional experiences including his family. I am glad to hear that you communicate so openly with your son and am curious how that relationship has helped through the many challenges you described over the past few years? The deep care and time you continue to invest in your family is evident in all that you have written and I look forward to hearing more of your journey in the days and weeks ahead.



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Reply by Marymary
10 May 2021, 10:13 PM

Update (kinda) 

Thurs he received call from lung specialist & so not good news.  As he stated:  it's a bit worse than I thought, its Stage 3 but inoperable because its affected his lmpyh nodes but they are going to "try" radiation & chemo but looking good.  But I'm working on having you covered for when time comes (referring to our son whose 24).  

I of course had questions as well as our son.  He was quite flustered & couldn't answer our questions at all.  I asked for name of cancer & what Stage, and what's TNM, he yelled it's lung cancer stage 3 - that's it.  I advised him we require more information than that to fill out all necessary forms, that'll be required for CPP disability, insurance companies etc. Yes Stage 3 but Stage 3A/B or C?  Advised him what TNM was & he shut down, got real upset.  

Our son, said dad we love you & care about you & we're naturally going to have questions so you are going to have to suck it up.  He said what else do you need to know its inoperable lung cancer & probable going to die from it, yes I'll fight but this is my 3rd cancer & so its not looking good ok. Within next 2 weeks the oncologist will be talking to me & I'll be advised of radiation/chemo treatments, so there that's it.  Meaning I'm not talking about this no more - there you have it.  

My son told him we are going to be on that call period dad, do you hear me.  Then it was I don't even know when they'll phone.  

I told my son, he will only hear it's for sure cancer but that'll be it - he'll shut down, which is exactly what happened.  

I can only do what I can do, you can't force someone so....it is what it is.  I'm an not uncompassionate, but I'm also of the mind, you have to leave someone be who they are & if that's all you know or want to know then so be it.  I'm not going out of my way this time around (3rd time), he does not want help, he does not want us communicating with dr's, he wants to do this on his own, well ok then.  I so feel for my son & I'll be there to support him in absolutely anywat I possibly can but nothing I can do for his dad.

Then his dad advised our son, you are going to have to step up & drive me everyday to hospital & dr's & take care of house, get prescriptions, lawn care etc. etc.  so realizing he can not do it on his own.  

I so get he's absolutely scared shitless, I so get that but segregating himself (distancing) is not the answer also.  I think---he thinks by distancing himself it'll hurt less when time comes?  only thing that comes to my mind, no other reason for it - none.  

I of course will be here & we'll try to convince for us to be on call with oncologist & only reason he'll agree is because I'll let him know, our son will need to know for medical reasons, for when he's older.  

So, that's all we know for now & I hope its a better outcome than he has in his mind.  I asked did they give you a timeline?  He didn't answer & just talked of treatment & oncologist.  So?  

Thank you for listening/hearing.  Prayers for him & my son.  

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Reply by Marymary
16 Sep 2021, 7:38 PM

Hello - a quick update, time just flies by - my My oh my.

It's been 4-5 months since I last posted, whew.  

Well, he managed the radiation & chemo, they (drs) decided to shorten the chemo to just 2 instead of 4, 30+ radiations, so he finished treatment end of July. 

His body had a bit of rest 3 weeks break before they decided to start immunotherapy, every 2 weeks for 1 whole year.  a bit of confusion there, no one told him about the therapy. 

Aug 31st 1st treatment & he seemed ok but this past weekend he was coughing bad.  Last week ct scan, chemo dr & blood/urine tests.  tues was scheduled to have 2nd therapy treatment but no go since he has inflammation in his lungs.

Boy oh boy, he came home & I said I didn't think I'd you so soon & he proceeded to tell (yell actually) he can't do treatment because he had pneaumonia, had 2 prescriptions, I so felt for pharmacist, he was beyond cranky.  Bitchy, irritable & god forbid anyone get in his way - holy moly.  Yes you have a right to be cranky but its not anyone elses fault this is happening to you.  Im cranky - deal with it.  So, day 2 of prescriptions, coughing has lessened as has his crankiness.Today its not pnaumonia its just an inflammation he says? 

Our son is doing ok as I am too, during treatment there was only a couple times he got all riled up which is really good for him. 

But this covid world we're livng in has absolutely got him terrified, I can't get this on top of this or I am deadman.  Not much we can say or do about that, our son & I stay home mostly & we do things outside with friends not in anyone elses homes. We switch off, I stay home he goes out, vice versa.

Unfortunately last week our neighbours got it & she passed away, she was/is a beautiful genuine down to earth woman.  He is recovering but still has symptoms, we're making him food etc. without being nea him naturally.  He's real scared now.  

I so understand this Delta variant has to be very scary for people with cancer or any other disease they have. 

I pray for all concerned in this crazy world we live in now!   Stay strong & SAFE Y'ALL

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18 Sep 2021, 7:31 PM

Dear Marymary,
So good to hear from you again - but I am sorry that things have been so difficult. You are taking care of so many people. Your husband, your son and your neighbours with such caring and love. What do you find helps you get through the days. What have you learned or found helpful?

Warm virtual hugs,
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