Hi everyone. I haven't been on for a while and thought I'd better update everyone on how we are going. Still no movement on Steve's jaw issue as yet. We are getting absolutely no where with our local hospital even though our other hospital are pushing them as hard as they can to do something. So we are still dealing with an untreated jaw with osteoradiocrenosis that has been like this for more than a year now. On the up side we have an appointment with the RO next Thursday for Steve's 3 monthly check up and will be getting him to transfer all of Steve's medical care to another hospital, in our hometown. We are finally returning home and there is a HBO chamber there so we will be able to follow this step further when we get settled back home in north queensland.

Today Steve told me that one of his teeth is loose. I'm not sure where we go with this. I will speak with his doctor about it next week and see what he says. But on the up side Steve is now 20 months cancer free which I hope and pray continues. The fears never go and the what if's always remain but we are slowly but surely starting to live life again. Take care all. You are all always in my heart xx

Hi Wendy,

Congratulations to Steve and to you, dear friend, on 20 months!

I am so sorry to hear about Steve's jaw issues not being resolved and about the loose tooth. I can only imagine the frustration you two must be feeling. I hope everything goes well as it transfers back home. You are so busy right now! I'm sure it will be a comfort to go back home to North Queensland. Starting to live again is huge and is, I'm sure, what everyone hopes to accomplish after so many trials.

Keeping you and Steven in my thoughts and prayers. You are in my heart, as well.

Love ya!

Sandy
xoxoxox

Thanks Sandy, we do have alot going on at the moment. But we'll get through it, one bit at a time as always. I made a mistake in my previous post, it should read 22 months cancer free. Can't lose that 2 months, they count too much in this battle. Hopefully everything will work out ok for us with our move and mostly with Steve's jaw. We can only try our best but yes the jaw issue and lack of medical care is extremely frustrating. Hopefully when we move onto a different hospital things will finally get done. I'm just so thankful he's not in pain. That would be miserable for him.

As for starting to live again, it's baby steps but its going forward so that's all that matters. I don't think many people understand us moving as we won't have any family support up there but we have many, many caring friends that are there if we need them and I always have you guys. I'm constantly being reminded of the what if's at the moment. I know it's just from caring people who worry about us but we can't spend our life being scared of the what if's. For some reason all I hear is what if it comes back, but I'd prefer our what if to be what if it never comes back. Either way we intend to start living life, not just sitting back waiting for it. If I've learnt one thing from this its that happiness is key. Living our life to make us happy, not other people. So that's what we are doing.

Anyway just lots of frustrations lately with medical and people. People that care but just never get it. Somethings in life only us members of this exclusive club ever get. No matter how much you try to make others understand it just never quite gets through. Anyway hope you and J are going ok. Take care my lovely friend xxx

Hugs to you both 22 months - awesome!! Ignore the what ifs... You can't live your life that way. Have a great move - and yes hopefully things will get sorted out with his jaw and tooth. Take care and best of luck!

Thanks for the update Wendy. Glad to hear that Steve should be able to do HBO in the near future. Im sure his jaw hurts terribly! Congrats on the 22 months being cancer free!!!!! You are so right, only the members in the OC club really 'get it'.

Best wishes with your move and wishing you both good health!

22! You are right, those months were hard-fought and hard-won. It is important not to short change yourselves and what you two have accomplished.

It really doesn't matter what lies in the future...the "hit-by-a-bus-tomorrow" scenario has been done here on the forum before and so have recurrences. You (collective not personal) can spend your life worrying about something happening and it will either happen or it won't. But, in either case you will have wasted precious time worrying when you could have been living! Wendy, you are a wise woman to try to put it aside and live! The icing on the "don't worry" cake is the "be happy" part! You have a great recipe for a lovely life!

We're managing. I'm still in my Happy Place. It's lovely here, but I know that it will be back to reality soon...vacations can't last forever. There's a scan looming on the horizon and it will chart our course for the future. Nothing is scheduled yet. I'll let you know what happens. Thank you for thinking of us.

Yep, people outside OC don't get it. Not having been through the whole thing, I'm not as helpful as I would like to be to you and other friends. But, I do know that when a friend yelled at me for not being more positive, I had my first taste of WTF stew. Lots of people don't realize it is a process of hearing, comprehending, mourning, and then acting on news...and it happens over an over and over as new things crop up. There's the helplessness, the worry, the frustration and the mixed bag of things caregivers go through. Who can be hit by this diagnosis and be positive at first pass? It takes some adjusting and some bouncing back for both the patient and the caregiver. And, it helps to have great support to get there. Thank you, my beautiful friend, for being kind, supportive and for understanding even the small amount that J and I have been through.

I'm so glad that you get to close an unpleasant chapter. Here's to being happy!

Love,

Sandy
xoxox

Hi Wendy

Wishing you and Steve a very happy move back to the land of sunshine!! Congratulations to Steve for being cancer free for 22 months too. Sandy has said everything so eloquently..I can only add that the 'what ifs' will always be a monkey on our backs but I am learning to brush it aside when it rears its ugly head..not an easy task when you have been dealt OC 3 times in a matter of months! I like your philosophy when you said 'what if it doesn't come back'? I am definitely going to adopt that as my new way of tackling the 'monkey'!

Thank you Wendy for your support and encouragement during my journey with this illness. I appreciate it a lot. Enjoy the wonderful sunshine back home and think of us poor people who are shivering in the cold (Perth is not too bad..I just feel the cold more!) Lots of love and hugs xxoxo

Thanks so much for your love, support and well wishes everyone. We still have a long road ahead of us but we are heading in the right direction. Christine he says his jaw doesn't hurt but I would imagine it would. I know he has a very high pain threshold compared to others but still I think there must be pain. Hopefully soon HBO will get all of this sorted. I will keep you all updated with our progress. First step is 3 monthly appointment with his RO this thursday. Fingers crossed all going good still and we can start the medical transfer to the new hospital and get the ball rolling with hbo.

Liza, keep in mind that what if's go for good things too. That's how I like to think about it anyway. You will come through this and we will all see brighter days. Steve is like you, feels the cold alot so being back in sunny Nth Qld will be very nice for him and me. Anytime you need to visit the barrier reef and feel the sunshine just let me know. Lots of love and hugs to you too xoxoxo

Doctor's appointment was great today. PET scan come back showing all clear which is wonderful and the doctor's check up of him today was also good and we were given the all clear again. The doctor started organising for Steve's medical care to be transfered to Townsville so the ball is rolling forward which is great. HBO is being organised up there as well but the starting point will be an appointment with the RO sometime after we arrive. As for Steve's jaw, not so great. The damage caused by the Osteoradiocrenosis is worse and he is going to lose that tooth. The doctor said there is nothing they can do to stop it falling out. They have put him on a 6 month course of medication to slow the damage to his jaw bone, hoping this will help to keep it ok until HBO can begin. He's taking a medication called Trental or it's other name of Oxypentifylline. This is to help increase his circulation in the hope that it will improve the blood supply to his jaw. Hope it works.

Anyway mostly good news. No sign of cancer, he's maintaining his weight so now all we have to tackle his the jaw bone. But at least now we feel like we are getting somewhere. Hopefully things will improve at the new hospital.

That is sooooo great I am so happy for the both of you - best of luck on your move. I'm Sure once he gets into HBO he will improve greatly! happy travels!

Hi Wendy! So glad that it is mostly good news! I hope the HBO and the meds to increase circulation help Steve's jaw. I'm glad things are falling into place with changing his doctors. The move sounds like it is already making you happy. What better way to know you are making the right decision? No matter what anyone else is telling you and bringing you down, your heart knows best. You aren't letting fear act like an anchor and control your life. Congratulations on being a co-survivor.

@Liza: I'm sorry about that awful, nasty monkey that keeps antagonizing you. I know he won't ever go away completely. Let's fast forward through years of clean scans for you...that monkey has grown quiet and tame. Right now, you are giving him a fierce whacking! Keep going, gorgeous girl! You are doing great--you are amazing! Turn on auto-pilot when you don't feel like thinking about it or if things get hard. Your army is with you...we all love taking shots at that monkey!

Sending hugs and kisses to you both! (And a smack upside the head for the monkey.)

Sandy
xoxox

So glad to hear you are returning to Townsville (or is it Cairns?) - I know that is where your heart is. Also makes sense that HBO would be readily available there and maybe this time Steve will tolerate it without having to battle Sydney traffic. Also fantastic news that Steve's scans are still clear. Just a bugger about the jaw. Who would have thought our health system was so dysfunctional that this could be happening to you. Maybe once you get to QLD, things will improve for you guys.