Hi Jay,
This post makes me smile!!! I love when "miracles" happen!! The way she has gotten through this is a testament to your faith I believe. So glad to hear she's getting better and better. Enjoy these next few weeks.
Kathy

Jay, I hope you, Jen and Hunter are having a peaceful and happy day!

Hi all,

Firstly - Merry Christmas and I hope everyone had a chance to take a break from the big C and enjoyed the festive season with loved ones.

Jen recovered very well over the past week, and her RO was very pleased with how she was progressing and we took out the Nasal Gastric Tube last Friday (Jen had actually gained around 1kg!) meaning that it was only in for around 8 days total.

This means, she is now taking all of her medication & food orally and the pain in her throat has all but subsided. Unfortunately, taste has yet to come back but I am sure this will come back slowly but surely reading what others have posted on this forum.

The radiation burns on her neck have all but disappeared, and her 'tan' is now coming back to her usual skin tone and colour. Also, the swelling around her neck caused by the scar tissue has become much better as well and she was confident enough to go out for a BBQ with friends for the first time since treatment last Saturday.

Medication wise, we are on around 10mg of MS Contin once a day, and taking paracetamol every 4-5 hours just to be safe. She is feeling a 'tingling' sensation in her tongue and I suspect this is because of her body trying to recover from all the damage done in that area, and new tissue & cells forming which I can visually see happening on a day to day basis.

As you can tell from above - the physical recovery has well and truly started and it is incredible how the human body is designed to recover so rapidly.

Unfortunately, the mental and spiritual aspects are a different story, and I can now relate to everyone's view point that Cancer will be around for a very long time, even after the physical symptoms are all but gone. I guess this will be the next challenge that we must overcome, and I look forward to 2013 (good or bad) and all God has in store for our family.

With all that has gone on this year, every Christmas as a family will now be a time to celebrate and be grateful for, and I hope there are many many MANY Christmas's to come.

God bless you all and I hope that despite all the challenges, sufferings and losses in 2012, I am sure that this experience has made all of us and all those affected stronger, more resilient people who are able to appreciate life and all it's wonders in a different shade of light come 2013

Seasons Greetings & Happy New Year!
Jen, Jay & Hunter

Hi Jay,
Yes, the new normal has set in, but it does get better the further out you get. The first few months are the hardest. I believe it's because while in tx we are DOING something to get rid of it, but after that is done, there is this feeling of...hmmm...now what. I know that our faith is supposed to keep us going, and in the long run it does, but it is a struggle in the beginning. I will continue to pray for peace over you guys!!
Thanks for your update. Wishing your family a Happy New Year too!!
Kathy

Belated Happy New Years to all the members here on OCF!

Another week gone and we are over 4 weeks post treatment and things are slowly getting better and better which is good.

Jen has now regained certain tastes back although not to the full extent (about 15% taste in specific foods) and is trying different stuff out on a day to day basis.

It has also been around 10 days since she has stopped all medication and boy was that another journey getting off the morphine! In saying that, managing the medication and getting off it so quickly was probably one of the best things along with the nutrition aspect we did, as she has now got her mental 'vibe' back and is thinking a lot more clearly compared to when she was on the pain meds.

We have our final meeting with our RO this coming Friday, then 2 month follow ups with our ENT docs thereafter. First PET / CT Scan was also scheduled in for the 19th of March so plenty more hospital visits to come...

I am so proud of Jen on how she has coped and recovered from all that has happened over the past 6 months, and I am praying hard that the effort put in does not go to waste..

It looks like it is going to be one interesting 2013, and I hope this time next year I am still able to write this in such a positive spin as I have done today..

Awesome! So glad she is doing so well!

Jay, I have been following your posts since my husband's diagnosis. Your journey has given me a great deal of encouragement and hope when things did not go well for us and we got hit by all kinds of curve balls. You and Jen both should be very proud of yourselves. Best of luck in 2013!

Well, another week down and we are now 5 weeks post tx.

I really don't know whether or not I should continue to write in this post, as we are technical in after treatment and don't know how relevant the information I am posting here has on others who are currently going through treatment. Just want to keep everything in one place so that others who might want to read through can see the full story as time has past but if need be, I am happy to create a new thread if required.

Today, we had our meeting with our RO & Dietician at our Cancer Treatment hospital for the very last time as Jen was discharged due to the fact that the RO believed that her recovery from her treatment was well on track, and that ongoing check-ups should now go back to our ENT doctors moving forward.

Our first PET / CT scan was also scheduled for the 19th of March which is a date that has started to bring a little bit of anxiety to both myself & Jen. The fact that we know that the cancer was fairly advanced with negative prognosis factors such as ECS really does play with your mind and I guess the countdown starts from now until that date to know for sure we have beaten this thing through and through.

Jen continues to search for her taste buds but is getting a lot more adventurous with her food intake trying anything and everything just to see if there is any taste. Currently, we are able to taste lettuce, milk, cheese, eggs, chicken, certain breads, fish all at about 15% of the normal level but I am sure that list and percentage will increase as the ulcers on her original tongue subside and heals. To everyone's amazement, Jen is not suffering from severe dry mouth, and her saliva function is almost back to normal. Inside the mouth, there is a small 'lump' which is scar tissue forming along with water 'blisters' that come and go, but none of it seems to be of too much concern as per the doctors visual scope that was done today.

It felt good knowing that there was one less hospital to visit, but at the same time there was this sense of void that came with knowing that there was one less set of eyes to watch over Jen from now onwards. I really don't know why it scares me to think that we are slowly getting back to a normal routine as I would have thought it would have made me a lot more happier.. Perhaps overcoming this anxiety & fear is the next challenge in this fight against Cancer and I am curious to know how others have dealt & continue to deal with this...

I know that faith has got us this far and I am grateful for it but we are all only human and as I have more time to think about what we have gone through over the past 5 months, the more questions I come up with that linger in my head...

Jen,Jay & Hunter

It really does sound like Jen is doing very well. Getting back to normal and to a new routine can be scary. Any change in life brings stress - even happy changes. I think lots of us have had that "what now" feeling. When my son completed his Rad Tx, I felt a certain insecurity in knowing there would not be the regular doctor visits to check on his progress from day to day. Getting used to a new routine and keeping busy helps and soon the changes bring the comfort of the new routine and of knowing things are ok.

Jsy

It's perfectly normal to worry about the Petscan in March especially since petscans have such a high rate of false positives. I'm pretty nervous about my upcoming 3 month MRI myself especially since I'm pretty much out of options if this is bad. Still, focus on today, Celebrate each little recovery of Jen's. If worrying could stop a recurrence, I would never had had even one, the way my wife worried and still worries.
Easy to say, but hard to do.
You mention your faith, and that's a good source of strength for many posters. I still get tears hearing the song Hallelujah - with its verses dealing with keeping the faith in the strength of adversity and sorrow like we all experience
[quote]It's not a cry you can hear at night
it's not somebody who has seen the light:
it's a cold and it's a broken Hallelujah...
there's a blaze of light in every word
It doesn't matter which you heard
The holy or the broken Hallelujah...
And even though it all went wrong
I'll stand before the Lord of Song
With nothing on my tongue but Hallelujah
[/quote]
So even though so many many things are wrong about what you and Jen have endured, there is still a lot of good news and new life with your child. If you can focus on that, it does help.
I just realized I'm on my 13th scan this Sunday and while I do try to practice what I preach, it's hard. Last but not least, I think that the anticipation and worry over scans is much worse for caregivers like yourself than for patients like myself. At least that's true in my household.
Keep the Faith
Charm