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Coping with the ups and downs and all the hurry up and waiting

VivianLee5689's picture
VivianLee5689
Posts: 546
Joined: Aug 2012

I am curious how everyone handles the initial diagnosis and then the constant hurry up and waiting. I am having such a hard time with all of this. I guess some would say I'm a control freak, most would agree that I am a bit obsessive compulsive and most who know me would say that if you need something done well call me. So you can imagie the anxiety I feel having absolutely no control. What has helped everyone cope? I know my husband and I are new to this, but seeing that there seem to be so many here that are beating this thing and staying strong. How do you do it?

cureitall66's picture
cureitall66
Posts: 862
Joined: Aug 2012

VivianLee5689,

I so much can relate to your anxiety. Our diagnosis was just last week. Shock, scared, and emotional are all the phases...and even some anger. My loved one and I are probably quite similar to your personality. I think that makes it harder on people like us. But regardless of personality types, it's hard on everyone to accept this. I am a big control freak...the only way I know how to adjust to traumatic things is by putting my bullet proof vest on and being the strongest I can be and march forward. I have to be for him. Stay positive. Try not to look so far ahead and deal with the information as you get it. Focus on the next step that you are given. I know this is all easier said then done...but what choice do we really have? They need our support and our stability in keeping things in order.

As you see on these forums, there are so many people that are or have dealt with this very same issue. Somehow they have gotten through it. They suggest one day at a time. Force yourself to think that way, or you will drive yourself crazy. I know the waiting is hard....I too, wish the days would hurry up so we know where we are at...I'm now looking back to last week and can't believe how far we've come. The hurdles are high, but nothing we can get over. Hang in there. You can message me aside of here privately if you would like. Let's keep each other posted. I've been on a lot lately...not sure once treatment starts...but will try and check messages frequently. I tend to browse alot for others experiences to share with him...seems to help.

Take Care,

Cureitall66

cureitall66's picture
cureitall66
Posts: 862
Joined: Aug 2012

I meant " The hurdles are high, but nothing we "can't" get over." Sorry.

blackswampboy's picture
blackswampboy
Posts: 341
Joined: Jul 2012

depends on your protocol, I guess...but for me, there was a constant barrage of appointments, tests, and procedures once the diagnosis was made. ENT doc, radiation onc, chemo onc, dentist, hearing test, HPV/HIV/hep tests, radiologist (for implanting PEG tube and chemo port), PET scan... it was quite a whirlwind, and I just took it one appointment at a time.

then once the actual treatments started, that was a major chunk of every day too.
don't remember much waiting around...it was more like an full-time job that came with a lot of stabbings, pokings, and proddings.
but after treatments ended, that's a different story. lots of waiting to heal, and that's kinda tough.

and you do have some control, with attitude and discipline in following instructions and taking care of yourself. there's a lot of daily things to do, to get healthy again.

CivilMatt's picture
CivilMatt
Posts: 2964
Joined: May 2012

VivianLee5689,

When the realization of the initial diagnosis sets in (assuming you’ve chosen to treat the problem) you come to grips with everything changing in your life for awhile (both patient and caregiver). Enjoy your hurry up and wait time, go out to eat, go for a walk, take a drive, visit friends and family, etc. When treatments take hold in full force, your world will get more concentrated on the basics, i.e. driving to treatments, resting, sleeping, eating and then those items get more complicated.

Learn to accept things as different, expect the unexpected, be prepared, and ask questions. The doctors and nurses will let you know what is coming (a little at a time), they don’t want to freak you out too early. It is doable, I made it and I am not the bravest person in the room. Before you know it, treatments will be over and you can work at getting back to (new) normal.

A (new) normal moment for me today, was finally changing the oil in the riding mower (which I put off because of treatment sluggishness). Last week I cut down a tree, to make room for a new sewer line. Life is great!! So, get on board this bus, buckle up (if you want) and let us guide you through this maze in your life.

Best,

Matt

Click on CIVILMATT for details (about me)

Billie67's picture
Billie67
Posts: 834
Joined: Jul 2012

Matt couldn't have said it any better. It's true that things are crazy right now and the waiting game can be so nerve racking. I wish I'd have had someone tell me to enjoy that waiting period by busying myself with pleasant things like visiting friends and family, going to a movie or out to dinner.
As Matt said once treatment starts, life gets a little hectic with appts and whatnot and then you start to feel less than wonderful and all you want to do is rest, sleep, rest more.
He's also right in saying it doesn't last forever but trust me, you will find times of wondering when life will be normal again so please, try to enjoy this time because it will be a while before he feels 100%
that being said, I'm 9 weeks finished with radiation and chemo and I am starting to feel pretty good and getting out more. It does get better honestly but knowing what I know now, I wish I'd played a little more before I didn't feel well.
Just some food for thought, which you should totally eat now because later you won't want to :-)
Take care,
Billie

VanessaSLO's picture
VanessaSLO
Posts: 280
Joined: Jul 2012

Yes, the waiting period is the hardest. When my father was diagnosed it was 30th May 2012. Firstly we had to cope with fear, anger, crying, comforting etc... Rollercoaster of emotions.
Then (as I am also a control freak and quiet impatient person) I wantet the tx start immediatelly :)... This was of course impossible. At first we thought my dad will have an operation so he was in the hospital, but after further examinations they came to conclusion that operation was not possible due to lymph node too close to the arthery. Then another waiting period for cancer board (which is once a week), and then another waiting for final tx plan (number of chemo/rads).... It took almost 2 months before tx actually started.

It was soooo hard for us in the mean time. But my dad tried to eat a lot, excersize... Then we just let it to God's hands. If God wants him to live, he'll live. We can all read and see every day in our neighbourhoods, newspapers how people simply die of a stroke, car accident... It is just destiny!
And the same will be with all of us. No matter how much we worry, no matter how much we are anxious, scared, depressed, in the end it will be as God wants it to be.
When my dad asked his onc doctor about his survival chances... Doc said: "No one can tell you that for sure. Everyone is different. And you have everyday 50/50 chance to live or die just as you sit in your car and drive or just as you walk down the road to get to work."
And this is true.... We just have to learn to live with that and to tell you the truth it calms me down truly.

VivianLee5689's picture
VivianLee5689
Posts: 546
Joined: Aug 2012

Thank you very much for your input. I am starting to chill out a bit, but it is hard. I have started my paperwork at work to allow me to take the Family Medical Leave as appropriate. I'm a school psychologist, so I have some flexibility in my schedule, but this is going to require more than my schedule allows. My husband's mother is 75 years old and just lost his father the end of May. I am his primary caregiver and I hate to say it, but he doesn't do all that well with pain. After seeing his recovery after the biopsies, I know he will need me. I currently drive 45 minutes one way to work so I am not very accessible to him when I am here. I am trusting God to work things out for me. That is all I can do at this point.

hwt's picture
hwt
Posts: 1935
Joined: Jun 2012

Like others, I wish I had done more "fun things" during the 2 weeks between diagnosis and surgery. You can drive yourself crazy with all of the "what ifs" and reading the internet, wasted worry and time on things that may never happen. My best advice is to take it as it comes and deal with it. As caregiver, try to set aside a bit of time for yourself each week to have lunch, shop, whatever just to step away from the situation for an hour or so. You will do just fine if you cross one bridge at a time.
God Bless!

Candi

ditto1
Posts: 630
Joined: Mar 2012

I was dx back in March 2012 Base of Tongue with lymphnode involment. Im 56 and needles to say it took me and my wife by storm. If we had not found this site not sure what we would have done. The folks just walk you thru it from being a newbie to post tx. So now that I have gone from hurry up to post tx of 33 Rads and 11 Chemos, im now in the recovery stage. Its been a tough journey and really I would consider myself in the middle of the whole process based on what I have learned on this site. I would suggest going back to older post they always offer me something new not to mention new post that help everyone. So good luck and God Bless. But no matter what tell him to EAT, LAUGH, LOVE, now for its likely the next 6 = 12 months will be a little uncomfortable, but doable.

phrannie51's picture
phrannie51
Posts: 3730
Joined: Mar 2012

The Docs seem to move to slow....and there is so much (and many) to coordinate, Oncologists, Rad docs, ENT's...I think we all find out just exactly what control freaks we are...especially at a time when we're scared and feel so helpless. We've just entered another planet.

From my perspective now, I agree with Matt....go out and eat all you want, whatever you want...visit friends, go somewhere you've wanted to go....our life circle gets very concentrated once treatment starts...food is iffy, tired is a big part of the day....and you'll be in that treatment time faster than you ever thought it was coming.

Stick around here after treatment starts....the advice and help are what got me through...and the love and sincere caring will buck up your spirits.

p

Tim6003's picture
Tim6003
Posts: 1495
Joined: Nov 2011

to be 100% honest as to how I handled it...I had no choice! At times I had no choice but to wait event though I knocked, asked,looked through, and sometimes even banged on doors (metaphorically speaking).

The doctors I grew to appreciate most were the doctors who gave me more time when I needed it, did not make me feel I was bothering them OR the doctors who more prone to be aggressive.

You are your best advocate..so don't lie and wait around, but I know where you are coming from...you push but you have to push diplomatically, you pursue, but you realize in your pursuit you are the layperson and at the mercy of the trained doctors...and the questions, boy the questions! You have sooooo many and your realize it could take 2 hours each visit for them to answer all of them..so you find yourself trying so hard to "pick the best questions" and not ask others...then kick youself later for not asking "that question".

So in all honesty...it's not that we can handle it always, it's that we have no choice...but I am speaking for me not the others.

My greatest comfort came when I felt I had done all I could do and then prayed and surrounded myself with my family (who also prayed). That always gave me the greatest comfort.

Best,

Tim

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