I'm just here to vent a little. My husband had a CT the 25th of October after having a sore throat that wouldn't go away. It was another couple of weeks before the biopsy was back but we essentially knew he had cancer after that first CT. Seven and one half weeks have passed. There have been biopsies, CTs times 2, a PET scan, 20 teeth extracted over 2 sessions, 2 weeks of healing time (a welcome calm patch in all this), a radiation planning session with mask making and more scans, a session with the medical oncologist, a consult with a surgeon for PEG placement and then the PEG placement. It is all pretty standard and familiar to everyone here.

I've watched as my robust husband has gone through periods of feeling really awful. I'm watching him get weaker and skinnier. I'm seeing the lymph node swell on the side of his face. And I won't even comment on the fear that both of us try to keep in check. I've been looking forward to the day the treatment begins that will kill this thing that is trying to take over his body. And now it is upon us. He starts radiation Monday in chemo within a couple of days of that.

I want to talk about roller coasters now. Recently I took my 10 year old son to an amusement park near where my family lives. You can see this one coaster from MILES away and it looks absolutely wicked. Huge hill, steep descent. I've been to that park a few times in the past few years and wanted to go on that roller coaster but know I just don't have the stomach for that sort of thing anymore. There isn't anything fun about being scared shitless at my age. But I was there with my kid and against my better judgement I went on it. I can still feel the visceral reaction when they locked that bar down over my legs and it started to move forward.

Tonight I am feeling that feeling amplified about a million times. I am locked in and starting to move forward. I want the whole thing to be done but DO NOT WANT TO GO ON THIS RIDE. I can't even scream and swear my way through it. And I dare not close my eyes.

I admit to liking the roller coaster after going on it. Fairly certain I won't like this one. I just want us (our family) to make it through in one piece. Thanks for listening. Laura

Laura - This is the place to be whether you need to vent or ask questions or just find a soft place to fall. It really is a roller coaster ride that nobody wants to be on or deserves to be on! It's been almost 6 years for my son and me, and without the compassion, information and downright good sense of everyone that helped me through the dark days, I don't know how we could have made it through that dark tunnel. It won't be long until your husband starts Tx and you will both be on your way to fighting and having a sort of routine to get you going each day. There is a certain comfort in knowing what is going to happen and how to cope with it. It can be a rough ride for some but there have been others who have a much easier time and just sail right through. Use the "waiting" time to find out everything you can - there is a wealth of all the latest information available on this site. Write down any questions you have for the doctor or for anyone here. As a caregiver, you need to make time for yourself, so you can be there for your husband and your son. Sending positive vibes for everything to go well on Monday. Please come back often and let us know how you all are doing.

Laura - we had Christmas and New Years between the diagnosis (Dec 6) and the radiation planning. Ugh. The first Cetuximab infusion was January 14 - and radition on the 21st. It was a relief getting started.

I found that meditation helped me mangage better - I'm not very good at it, but my BIL's advice to do breathing exercises was a real lifeline. The other thing that helped was to concentrate on the things I had some control over - learning about the disease, learning about food and nutrition, buying skin creams, stuff like that.

Please try to find pleasure you can in the holiday session. A drive together, a favorite movie won't generate happy-go-lucky glee, but my husband and I had quietly happy times as we worked the tunnel hand in hand. You are stronger than you think.

Hi Laura, boy those words you have written there take me way back. We were once where you are and I remember getting ready to take that roller coaster ride. You will get through this, I promise you. At the time I could never imagine that I would be looking back on that moment thinking wow, we made it but we are. It's tough, I won't pretend it's not but you will get through it.

My best advise is to get your husband to eat as much as he can. He will lose it but put on what you can now so that it's something he has to lose. When my husband Steve was diagnosed he was a thin 66kg. He went as low as 51kg fully clothed during treatment. He's 181cm tall. He tolerated the radiation ok but wasn't a fan of the chemo at all. Steve had 3 lots of Cisplatin over the 7 week course of radiation. Steve also had a peg tube inserted. This was a godsend to us. Some people go without it but Steve had it. He hated it initially but eventually saw how useful it was. I do believe it was a major part of getting him through his treatment.

I wrote a blog called My Steve, on this forum, that you may find useful. I tried to record as many feelings as I could on how it was for a carer. How I felt and how our progress was. It helped me to cope with what we were going through. I'm very glad you found us here. The guys here are a godsend and will help you through this in every way they possibly can. Even if its just to vent and get some emotion out, then come here and do it. We've all been or are going through the same thing so we understand.

There are few of us Aussies on here as I'm sure you will find out. We were in NSW at the time of Steve's treatment. At the Mater hospital in Newcastle. If by some chance you are at this hospital you are in good hands. Keep us posted on how you are going and remember we are all here. We are all around the world so you will find someone on here most of the time.

Wendy

Hi Laura. Reading your post took me right back to where we were exactly 3 years ago today. John's first appointment with his doctor was 3 years ago today for a non-painful lump he found in his neck. Wow how far we have come. I remember the absolute terror I felt hearing the word cancer since I had just lost my mom to pancreatic cancer the year before. THANK GOD and Brian Hill for this website and message boards. Feel free to come here and vent, ask questions or just check in. Remember to take time to take care of you. Being a caregiver is so emotionally and physically draining. Hugs, Wanda

Thanks for reading guys. He felt like dirt over the weekend after the PEG went in and looked like he'd aged 20 years. I suppose he would have bounced back (to a degree) but he is right into radiation and chemo. Started radiation yesterday and got the call to check into the hospital in preparation for the first round of chemo immediately afterward. The plan has changed and instead of having weekly cisplatin he is going to have 3 cycles of it. I knew this was coming within the next couple of days but I don't guess one is ever really ready.

11 years ago yesterday I was checked into that same hospital in preparation to be induced for labour with our firstborn. Fast forward 11 years and he is being checked in in preparation for chemo. Its a good thing we don't know what the future has in store for us.

Make sure to report ANY ringing in his ears or change in hearing. My husband has permanent hearing loss from the Cisplatin. His didn't show up until the last week of treatment.

Hi Laura,
As you know my treatment was very different to Ricks so I will leave it to those that have the expertise in that area.
I just wanted you to know I am reading and keeping up with all your posts.
Some coincidence in the 11 years at Gosford hospital and I am hoping for a great outcome while you fight this awful disease together.
Love - Gabriele

Hi
Your story is so familiar as my husband also had tongue cancer and node involvment exactly one year ago (Oct 4th) with 1st surgery and then chemo and rads ending Dec 19th. And I can say you can make it to the other side, just know it will take awhile. If you read my previous posts you can see our journey. Emmett had his peg out yesterday and we got a report of no visual sign of cancer! It took us until Sept. 2011 to get our first good report so you are right this year was a hugh roller coaster ride but there is hope at the end. Hang in there because the only way to travel is forward and keep the positive spirit going. The track will smooth out.

Being the one with cancer, I have observed the Caregiver is the one at the Point-of-Pain.

It's easy to be the patient, we're just moved about, told where to go, what to do, we just go into a trance-like period, where we are out of control with what happens.

Care-Givers have very few options to handle the new situation, they have to get thru 'normal-space' as always, perform the normal duties (that have always taken most of lifes' energy), and now must do so while making all the new and Very Scary decisions while their Spouse/Friend/Lover/Partner is undergoing some very scary procedures.

Care-givers are then told to "Get rest, and don't worry, it won't help".
Yeah, well, good luck with that.

GOD Bless you Care-Givers, YOU are who and what we are fighting back to life for.
Thank you.
All.