So tomorrow we drive a couple hours to go to hubby's first appt. The journey will officially begin. Is it normal to have my stomach feel like I just went down the biggest slope on the biggest roller coaster ever?
Oh yes. I remember this.
We had to drive 2 1/2 hours to our treatment centre for our first appointment with the tumour board. Our accommodation had been booked at the Cancer Lodge just down the road.
I could not get out of the car. I just burst into tears and told Kris that we just shouldn't be there. We shouldn't be there and this should not be happening to us.
Poor guy, he got out of the car and sorted things at the reception desk. I literally felt paralysed with grief and fear.
Of course things got better. Once we knew the treatment plan I felt so much better and able to cope. I put my Caregivers hat firmly on and once again became the control freak I am.
So yes, you are completely normal. I promise you it will get better. It sure is a hell of a roller coaster , but you both will get through this.
Tammy
Oh thank you, I so needed to hear that! You sound a lot like me, and my Chris may actually be talking me out of the house tomorrow! Doing a lot of praying and deep breathing. I feel once I know what is going on more specifically I'll be able to handle it better. I sooooo don't do not knowing very well! Plus, I don't feel in control right now and I sooo suck at that, too!
Going to take my unisom and get some sleep now! Thank you so very much, I actually have a little smile right now!
It looks like fear of the unknown is your biggest problem. The OCF website has lots of stuff to educate you about the disease, it's treatment and getting past the fear it causes. It was written to help turn the unknown into known.
Your husband has cancer, he needs you to be strong right now. It's time to get our of fear mode and into fighting mode. Knowledge is what will lead you there.
He's been on deployments and TDY's before. You had to be strong then, this time is no different.
I know you can do this.
Tony
If someone didn't have some type of fear/anxiety, I would say something is wrong, and don't really care what happens then. It's what you do with this fear that matters..fight or fight!
Good luck.
Many of us have written detailed summaries of what we went through during treatment in the Currently in Treatment forum. It will do a lot toward educating you as to what your husband will face and side effects he will encounter during treatment.
Mine is found on page 5 of that forum if you are interested, entitled Old B-52 Bombardier #2. Many other worth reading treatment threads are there also.
I hope my previous post wasn't too upsetting, but now is the time for you to be strong.
Tony
I certainly remember the horrible anxiety, inability to sleep or focus, desire to runaway together (maybe it will go away if we don't go to F/U appt, and stomach bottoming out.
Two things helped: I told MO that I had some idea about how brutal this tx was going to be. I could toughen-up if there was a chance for a cure and they were not just experimenting.
The other thing that helped, a treatment plan was put into place. That put me into battle mode and I never felt that helpless again. Even while waiting for F/U PET scans, I felt we had done the best we could.
It also helped that I was busy all the time providing care of one type or another. You become focused to cope with all that needs to be done.
Hello again. How did your day go?
When we were given the treatment plan the radiation oncologist specifically said
" the aim of treatment is cure" . That boyed me a lot. Yes ! This was curable. I then felt that we would and could do anything and everything to facilitate that cure.
I set about planning for everything I could think of. I fed Kris up with lots of added calories and managed to put 5 kilos on him before treatment began.
I rang the hospital weekly to ensure all appointments were booked. Chased up the Dental team for the necessary tooth extractions he needed before radiation started. Chased the surgical team for the PEG placement he had to have before they would start radiation. Not to mention the chemo team and the mask making department . Through this period we celebrated Christmas with our family and yes, it was a happy time. I knew the treatment plan was in place and that this was curable. Hang on to that.
You will both get through this.
Tammy
You guys are so amazing! I so appreciate everything y'all have said, it truly helps! I have read of what some of y'all have posted on what you've gone thru and it has given me strength. I was able, because of your sharing, to meet with his doc educated and prepared for the right questions. That itself was empowering! (Doc even asked if i had medical training! :P ) I will forever be terrified of that which i don't know-the unknown is my undoing on bad days. I have coping skills that help most of the time, but every now and then the whirling worry overcomes until i fight it back. We now have surgery planned for him and what seems a very great team taking care of him. Still much unknown but am now going to focus on what i DO know and go from there. Not entirely sure how to enter the upcoming surgery info in the signature, but will do my best! Thank you all soooooo much! Never worry about being too blunt or direct, i usually respond quite well to that!
Good for you, jklamert! Sounds like you are in "fight" mode and taking care of business! Information and education is very empowering. Your signature line looks great. You can add more info after surgery or whatever else you want to add. On the day of surgery it really helps to have someone else go with you. On my son's surgery day, my daughter and a nurse-friend of mine came with me and the surgery took several hours. Afterwards, the ENT came and talked with the three of us in a smaller room adjacent to the surgery waiting room. Having others there really helped me to think about the positives and remember what the doctor said. My daughter and friend also had questions that the doctor answered which I hadn't thought of. The more you know about what's happening, the better you will feel about being in control and helping your husband to stay positive, too.
The unfortunate part of this whole experience is that you will become an expert in coping.
David,
Your response about becoming an expert in coping made me think - yes, unfortunetly, we have this unwanted opportunity to become coping experts.
On the other hand, it's a goal worth keeping in mind. Trying to turn anxiety into a focus for improved coping.
Not sure I am expressing this quite right, but when I read it, it struck me as very important. In the past I've mentioned, you never know when a particular response might help someone else.
Thank you,
Laottie
Just remember JK, its a marathon not a sprint. This is the longest roller coaster you have ever been on. Keep your expectations in check and don't be too frustrated if the progress seems to bog down. Keep talking to the doctors and nurses, ask them all your questions, you'll find it empowering to understand why things happen and how you can make the treatment and recovery go smoothly.
Of course don't forget we're here for the long haul, so if there's anything you need to know or to vent, we're here.