Can someone make me understand

Nana b said:

It's a tough ride!
It could be many things, white cell blood count could be down, he is sluggish because he is unable to go to the bathroom (try suppositories). But as his caregiver, I would just give him space and love. This is all very mind boggling. My saddest moments were when I thought of my family, and the weekend after chemo. I just didn't feel right and felt like I was in a fog. Food didn't taste good, drink didn't taste good. b Just an overall blah...... And he could be digesting the news and not want to rave about it because after all there's another CEA test in a couple weeks. It can be anything.

Hugs to you!!

Sundanceh said:

He May Not Even Know Himself...
Tina

It's alot to wrap one's mind around when you are getting started out on this...most men are not good at "externalizing" their feelings. What he is thinking or feeling, he may not be sharing, because he does not want to burden you, or he simply just does not how to go about this yet.

The cancer ride is alot like a rollercoast ride, with many highs and lows, and at any given time of the day.

Sometimes, one just has to "ride it out" and let one's feelings and emotions wash over them and then they will pass - and you move forward.

He could be thinking about his own mortality - he might be thinking about what this is doing to you - he may be thinking about the worst case scenario and leaving you behind.

And combined with feeling crummy from treatments...well, you get the idea.

I'm well into my 6th year now, so I see things much differently than I did when starting out. It's all so scary and new - new terminology, procedures, treatments, and surgeries...it's a world all its own.

I don't think you are doing anything wrong at all - as a CareGiver, you are along for the ride as well, and your feelings are in this as well. Right now, your focus is on him and trying to make everything "better." Sometimes, this will work and other times it might not...again, sometimes we just have to let it go....this might happen to you as well, with all the energy you are devoting, remember to take a moment or two, here and there, to take care of Tina...by doing that you can continue to care for Jorge.

Remember, that this is a marathon and not a sprint - there are no quick fixes and no right or wrong answers, or ways to do things.

I would say, just support him and be there for him - if he stays down for too long, we don't want that - we don't want him to slip into a depressive state. Being down for a day or two here and there, or even having a mini pity party, is part of the normal feelings we all experience. But if they begin to stretch into weeks or beyond, then perhaps some medication to pull him out and/or therapy.

I went through the first 5-years of my journey by myself - it was extremely difficult, but I persevered. And then, I found this board and knew that I could apply what I had learned and experienced to help other people going through this - people just like you and Jorge.

Support could be a good thing - you might tell him some stories from the board about people overcoming odds and doing quite well...(if he's open to that). And perhaps one day, he might consider joining the board so he could read on his own and/or express his thoughts.

Right now, it's all real early for Jorge (you too). When you first start out, you are more in a "reactive mode." As time goes by, you change as people and will become more informed and begin to take a more "pro-active" approach to your situation. But TIME will take care of this.

For now, just take it in small bites and try not to get overwhelmed.

-Craig

AnneCan said:

Tina
First of all, I don't think you are doing anything wrong. This is like a wild rollercoaster ride we are on. Sometimes the drugs we are taking can bring us up or down, as well as the fatigue we experience while undergoing chemo or radiation. Good news like you two received is great, + personally I think it is important to celebrate. Whenever we get good news my husband + I open up a small bottle of champagne. We are saving all the empty bottles - they are on top of our china cabinet + are a reminder to me of good news we have received. That being said, I find later I ask myself "what's next", "what if?". Sometimes I myself don't even know why I am feeling so up + down. Don't doubt yourself; it sounds like you are there for him every step of the way, including being here. I am guessing tomorrow will be a little brighter. Make sure you do some nice things for yourself, too.

CherylHutch said:

You are doing just fine!
Hi Tina,

Just jumping in here to add my .02 to the conversation. I'm sorry, I haven't found your original messages so I'm not totally aware of your and Jorge's situation, but I'm assuming from what is said here and the responses that Jorge has been fairly recently diagnosed with cancer, has gone through treatments/surgery(?), etc. and is still relatively new to this journey. Everyone in this forum is on the journey... and since the journey is unique to everyone, we all are at different stages on our own journeys. But there are lots of similarities, which is what brings us all together on this forum. And might I add, that whether you are the one with cancer or the caregiver, both are on the journey. Yes, one can say "Oh, but the one with cancer has it worst... us caregivers are there to support and care for them but we don't have it half as bad as someone WITH cancer". Wrong answer! The caregiver has it every bit as trying, scary, confusing, frustrating and all those other things that the person with cancer has.

When one is first diagnosed, everyone's world turns upside down, and then settles on fear, terror, and OMG!! The terror is, of course, because we've all heard the stories where someone is diagnosed and no sooner is told they have cancer and they are dead within months. Or those who put up a long battle with cancer and died 3-5 years later. For most of us, neither is acceptable prognosis'... we want to hear that we are going to live long lives and we are in an absolute panic to find out if this is possible and if so, how? We don't tend to hear a lot of stories of folk who have gone on to live healthy, long lives because... well, those people are literally out there living long, healthy lives and have put their cancer scare behind them. Good for them... but it would be nice if they'd all come back once a month to remind us that there are lots of folk who have beaten the odds

So now... is what Jorge going through right now normal?? Totally!! It's not just about today, or something that was said/not said today... it is an accumulation of everything that is going on in his life and how his world was thrown upside down. He's still having to adapt to that and it doesn't happen overnight. Heck, I was diagnosed back in December 2006 and the terror was so strong, I could taste it. Of course, with the advance of time and all the treatments, doctors' appts, scans, etc., my mind sort of became number so I wasn't living in a constant state of panic... but even now, almost 4 years later, I am doing really, really well, but I still have my moments when I think, "What is going to become of me?? Am I still going to be alive next year?" and when I dwell on that, it can get me down.

So instead, I have learned the happy place for me is to be in denial. I can live my life, taking whatever meds I need, and just enjoying life and what I have chosen to do in my retirement ... life is good! As long as I stay in denial, I have no fears/depressions/sad moments. It's only when I have to force myself back into reality... like when I have to go for a CT scan, or an oncologist appt., or blood work. That's when I'm reminded exactly what's going on in my life and I'm actually on this journey.

I'm not suggesting that denial is the best route for everyone because there are those who would get into it so deep they would refuse treatments/appts/blood work because as far as they are concerned, everything is fine. But if one can live their life where cancer is not allowed to rule their lives, yet still get the treatments and checks that are needed... it's sort of the best of both worlds.

But until Jorge finds that "comfortable" point, it is totally normal for him to have highs and lows. And guess what? You aren't immune to them! You, too, are going to have highs and lows! And anger/frustration/confusion. The worst part is you are going to feel guilty when you feel any of these things... but that is what you are going to have to fight, because you are NOT to ever feel guilty for any feelings you have. It is normal (and healthy) to get angry! Cancer sucks... and it makes everyone angry, even the doctors and researchers who spend their careers trying to tame the beast. So if everyone is angry at cancer, why should you feel guilty for getting angry, or frustrated, or confused?

But, like Craig said... keep an eye on how long Jorge is feeling depressed and down. If it's more than a couple of days, then it would be a good idea to go see his doctor. The chemo and any/all related medications can play havoc with one's chemical balance and if that gets off, even by just a little bit, it can cause mood swings, depression, feelings of helplessness, etc. and with the right anti-depressant, it can straighten that all up so that life is worth living again

There is absolutely NOTHING WRONG with asking for help. We have the technology and the medication to fix a lot of problems so why not take advantage of that rather than suffer? That goes for both the patient and the caregiver! Don't be brave... ask for help when it's needed, and you both will feel so much better for it.

Cheryl