Hi all, we had Steve's 3 monthly appointment today so thought I'd update you all on how he's going. The doctor is happy with his progress. He's maintaining his weight which is good but we still need him to gain alot more (mission impossible). No evidence of the cancer being present from just looking and feeling so that's great.

But his jaw bone is not good. We have been waiting now for 8 months for surgery for his dead jaw. What started out as a small area has grown quite conciderably. We deal with 2 hospitals. For those not familiar with the hospital system in Australia we have private and public health. Our cancer centre is a private hospital. The see all cancer patients for chemo and radiation etc even if you don't have private health insurance. When it comes to Steve's jaw bone and the maxillofacial surgeon it's through the public health system (no insurance needed). Still good doctors but long waits to get seen. This is why we are still waiting.

Our RO has been checking Steve's jaw every 3 months and last time we saw him he was very concerned at how it's looking. He has been in contact with the other hospital (maxillofacial) to try and get us pushed up the waiting list. So far this has not made any difference. Today we saw his RO again and his jaw is now worse. So the RO ordered a ct scan to be done of Steve's head, jaw, neck and chest. On the 15th of March we have to go back to the Cancer hospital and see a private ENT to be assessed. We will also see alot of other doctors at this time also. I think they are doing this in the hope that the private ENT will be able to get something happening with regards to Steve's jaw. It will be a 4 hour appointment, the same as when he was diagnosed. He will be seen by many doctors and then they will all meet together to discuss the next plan of action. Fingers crossed we get somewhere this time.


Got to admit I'm a bit concerned about the scans though, as normal. He hasn't had one for a year now and I really hope they show nothing but the dead bone that we are expecting. So the next couple of weeks will be a bit stressful but hopefully we will get some answers and some action finally.

I'll keep you all updated on how we go.

HI Wendy

Even though it sounds stressful, it also sounds like movement.

Maybe the private surgeon will move you up the list on the say so of the other specialists. But that 4 hour appointment ...

Alex actually makes himself ill just before the "group hug" as we call it. Stuck in a waiting room with some people who haven't even been told yet, is a misery as we remember that's where we were exactly 12 months ago (Alex rang me at work to wish me an unhappy anniversary for the 2nd March yesterday). However, after the appointment, he bounces out of the place like a kid let out of school and the discussion is around whether we should go to the pub outside the hospital or try and beat the peak hour and have a glass of wine at home on the balcony, overlooking Lane Cove National Park, watching the Sun go down and being deafened by the hundreds of cockatoos living in the trees.

Fingers crossed for a completely expected result on the scan and a date for Steve's surgery

Karen

Wendy, I am sorry to hear about Steve's problems. Here for a problem like that they would use hyperbaric oxygen treatments to try to heal the jawbone. If it has been going on for too long then surgery will be an option. Ive had my lower jaw removed and I know you were around here when I went thru that. It was not an easy time for me, but my case also had complications most do not go thru. Please, ask the doctor about HBO on the next appointment. I wish Steve the very best with everything. He already went thru enough, both of you have.

Hi Wendy

I really hope that Steve's problem gets resolved soon. It is such a shame that you have to wait so long to be assessed. And I pray that his scans will show the all clear! Good luck with it all Wendy.

Keeping you both in my thoughts and prayers

Liza

I agree Karen, it does sound like movement. I think the plan is to get another specialist to look at him so he can then get onto the other one to get things moving. Let's hope so anyway.

Christine, I wish HBO was an option. We tried that but because we had to travel so far each day Steve didn't want to do it. He found the entire experience very nerve wracking. Not just the hbo but having to go to sydney every day. He's a country boy and the crowds stressed him out greatly on top of the hbo. We had the option for accomodation down there at a reduced cost but Steve also wouldn't be in that. He is very much a home body and being away from home for him wasn't a great option. So we tried it but in the end he just couldn't cope with it. He did so well through treatment and was so brave but the whole HBO thing brought him undone a bit and nothing I can do will change his mind on that one.

Liz, we were told 1 month wait when they booked him in for surgery. It's been a very long month let me tell you.

I'm trying to stay positive that everything will work out ok and scans will come back only showing the bone issue and nothing else.

Found this great quote tonight so thought I'd post it here.

If children have the ability to ignore all odds and percentages, then maybe we can all learn from them. When you think about it, what other choice is there but to hope? We have two options, medically and emotionally: give up, or Fight Like Hell. - Lance Armstrong

Just updating everyone on how things are going. CT scan was done last Monday. Unfortunately they were unable to fit Steve into the next head and neck clinic on the 15th so we've been booked in for the 22nd. Because we are old hands at this and know the team we have been given half an hour off. No need to meet the dietician and social worker, we are already firm friends with both. We are going prepared for the marathon appointment this time. Taking laptop for Steve to amuse him between pokes and prods and textbooks for me to study between watching him get poked and prodded. Really glad we know what to expect this time.

Gotta say i'm a bit nervous about the ct results. There's something very un-nerving seeing in writting a scan that is to cover from the chest to the brain. Finger's crossed the 22nd brings only news of his damaged jaw bone and nothing else. And also that his jaw bone isn't as damaged as feared. Will keep you all updated with how we go.

Wendy, I will be thinking of you & Steve on Tuesday.....I hope it all goes smoothly for you,

Lotsa love,

Jeanna
xxxx

Hi all, appointment was today. Got to say today was yet another day from hell but we made it through it ok. Steve's ct scans came back good. No evidence of cancer showing in oral or chest area's. Big sign of relief here from me. He is however showing extensive damage to his jaw bone. The doctor's advised us today that it could be cancer there but they are leaning towards it being osteonecrosis. So they are booking him in for a full pet scan and a biopsy of his jaw bone and gum region. If all comes back clear then they are wanting him to try HBO again. This is where my nagging wife duties will have to come in because he so doesn't want to do this. If he doesn't do this then the doctors advised us that he is looking at a full removal of his lower jaw. So now we wait. One step at a time. Pet first, then biopsy and then take it from there. Sorry I can't update you with dates as yet. They are going to ring us to let us know what's booked in and when.

I have a copy of the report so have included the findings below. Not much of it makes sense to me. Hopefully it will make more sense to some of you guys.

There is an extensive bony defect in the right body of mandible measuring around 1.6cm in diameter. There is mottled radio density of the bone anterior to this. There is also a bony defect on the left side of the body of mandible measuring 2.5cm from front to back.

The structure of the mandible appears otherwise normal.

Amazingly this man of mine says he doesn't have any pain. He does have a high pain threshold so me and the doctor's seem to think this is more like it but he says no real pain so I'm grateful for that.

Amen to that x

Wendy, I am hoping that Steve can sail thru all these tests and show no sign of having cancer. To me it sounds like the jawbone took the brunt of radiation and is deteriorating. Im glad he isnt in any pain, jawpain can be really bad! If the doc says he needs HBO then he must do it. Its so much easier doing HBO than going thru those radiation treatments. Praying for good results!!!