Introduction from Australia - Oral Cancer Support

Hi Everyone,
I have been a carer to my partner prior to him being diagnosed in March, when he started suffering from severe anxiety attacks that were at the time suspected to be an ear infection. I wish it had just been that. He finished treatment 3 weeks ago, is now bored & very frustrated at the fatigue, but it is slowly sinking in that this is one of the main side effects. I only discovered this site 3 days ago and am amazed at the support & love spread between everyone. I can relate to everyone, and to all members of the 'cancer club' as we call it here, I think you are all so very brave. My heart bleeds at what I read, but being in the same group as the carers, and looking after my beloved knowing that most of you are either going through or have been through the dis-ease, I feel that I already have friends through this site, even though most of you are thousands of miles away. I hope to be back tomorrow, sorry for the time delay!

Jeanna

Hi Jeanna

welcome to our family.We have quite a few Ozzies here so you won't be short of company.Its funny how we all manage with the different time zones and it means there is always someone on the boards when you need an ear.
Lokk forward to hearing more of your story.
love liz

Thanks for making me feel welcome Liz, work gave me 4 weeks compassionate leave and I return next week. I've felt very lonely this past week, especially yesterday & today, so 'the family' have given me inspiration to join. I'm not computer literate and it took me a while to get the courage, have never been in a forum before, but have never lived through hell before either....so really need you guys and hope I can be of support to others in other ways too. Rod seems to be recovering from the treatment really well but tried to mow the lawns on the weekend and subsequently spent the next 2 days sleeping. The sleeping has sometimes been good as it has given me some 'me time', although I spend most of it doing the washing or crying for us. His erratic unintentional verbal abuse has receeded, his skin has healed great, my main concerns are his anxiety levels [and the meds taken which are long term addictive] & getting him to eat again to gain weight which is hard due to no teeth. When these concerns are under control, fear of the unknown & furure will take hold again I'm sure. I feel blessed I have people to hear me now, and someone to talk to. Wish I'd have found the site months ago!

Jeanna

Hi Jeannna

I'm another proud Aussie on this site and also a care giver. We are currently in treatment, week 6 at Newcastle NSW. This site is wonderful. I couldn't find anything on oral cancer on our own cancer websites but luckily from a post I put on there I was directed to this site. I haven't looked back since. I came onto this site so overwhelmed by the things I needed to know and didn't know. Before long I felt I had a grasp of what to expect from treatment. Make sure you stay on this forum. You will get the much needed support that we all crave.

Jeanna, welcome to OCF. You will find lots of support to help you both get thru this. Even though treatments have finished, the radiation continues to work, making your partner feel lousy. Please remember that if they arent the nicest its due to the treatments being so difficult.

Dont forget take some time for you everyday. Even if its just to sit outside for 10 minutes. Thats 10 minutes that are yours to think about things other than whats right in your face.

We have several wonderful people from Australia on here. Maybe you will be fortunate enough to have someone near you. Ive met many people in my area from OCF and Im very proud to call them my friends. Only a caregiver or patient can understand how this terrible disease affects every aspect of your life. Its like oral cancer is in a seperate catagory due to the sometimes harsh side effects and medical procedures. We also have quite a few that are on facebook too.

Best of luck with the healing process. Your partner should turn around very soon.

Thanks Wendy, I found the direction to this site through the Cancer Council site while looking for answers on just about everything that I couldn't find either. I went to the Peter Mac site where Rod had his treatment to get confirmation for example that suger feeds cancer, but to no avail. The 'Peter Mac @ Home Nurse came today and confirmed it isn't true, which I was relieved at because when he has weetbix in the mornings before his peg feed, I have to put 8 teaspoons on it before he'll eat it!
A lot of people feel abandoned when their treatment is finished, we were told to expect this, but we couldn't have been more relieved. At the end I couldn't sit in the small waiting room where the Rt was taking place because I wanted the noise of the machine out of my head before the last Tx so I wouldn't have nightmares. God knows how our loved ones feel as they are going through it!
It was really important to keep the pain controlled as it stopped other issues, he was on 100mg of MS Contin twice a day which is now down to 80mg x 2. Fatigue, depression & anxiety are 3 big side effects. The 1st 2 weeks after treatment were the worst for Rod, the radiation is still burning, the chemo is still working, but he struggled to understand this. Only now is it sinking in.
My next goal is to start building our 'new normal', the old 'normal' has long gone.
Sorry to waffle, haven't had support like this before, feel like I'm releasing a 6 month diary!
Till next time....

Jeanna - PS - what does 'send a PM mean? Slow on acronyms unless on number plates!

Chistine, I have been following your journey, I think you are one of the bravest, strongest people I have ever heard of. If only every living person could take a note out of your book. Joining this family is making me stronger again already, I was beginning to weaken, but I cant let that happen, I need to be brave too, and you and everyone here have helped me heaps in the 3 days I have been reading the posts.
I would love to think there is someone from OFC near me, I have lost a 22yr friendship, and have had only 2 people call me in 3 months, not just asking how Rod is but how I am too which is nice. My folks have been my biggest support and how I love them for that, I owe them so much. Rod has 2 adult kids and I'm close to taking out intervention orders on them - say no more! [apart from ignorant and 100 other things on that list...this has been hard on me & really hurt me as it has also hurt Rod. His sisters have called every 3 - 4 weeks. Initially I was calling everyone with updates but have stopped.....is that mean??

Jeanna

Wow, being alone in this battle sure is not easy. Having cancer or another very serious disease canbring out the worst in people. Sometimes it brings out the best. It lets you know who is on your side and who you can count on. People show their true colors when faced with a close friend or relative who is ill.

One thing to remember...from now on...YOU ARE NOT ALONE!!!! You will have your own little team of supporters who will pick you up when you need a lift. I couldnt do it without my OCF family. I dont have much family, few friends and have gotten thru this twice by depending on my teenaged son. While helpful, its not the same as having a real caregiver who is an adult.

Try to make the most of every single day and do something nice for yourself. It will help you to be cheerful when you dont want to be. Dont allow Rons demeanor play a part of your moods, take a walk if it becomes too much.

You will discover all the wonderful people here. They will greet you and guide you thru the healing process. Im waiting for Gabe to post to you, hope she is near you.

Thanks for your support Christine, my thoughts are with you also...and...I hope I can be here for you as well...
xx

Jenna F,, here is an address of a very funny survivor from Australia. She is my ET " Evil Twin " LOL her email is [email protected] you will find her very easy to talk to like everyone in this site is. She doesn't post much anymore but reads what we others post. Jim

Christine is my hero too. For sure she is a one of a kind lady that knows how to fight. Christine doesn't talk about herself much, but likes to boost others into being positive.

Hi and welcome Jeanna,
As you have discovered this is the best place to find information and support for OC.
I myself am a nearly 3 year survivor but from what you have described you and WendyG are travelling a very similar and difficult path at the moment.
The Lyn that Jim has mentioned is also in Melbourne and posts here under the name LynfromOz as well as Karen Rose and Sue G.
Wendy and I are both from NSW as are some friends who post under the name of Tizz and Aussieh.
There are also a few others who post from time to time.
Even though there are a few of us from Downunder the disease is international and even though we are all from different countries we all consider ourselves to be part of a family.
Some of us including Liz, Christine and Jim are also friends on facebook where you can see a little more about us and what we look like.
http://www.facebook.com/oralcancerfoundation .
Am at work writing this and just wanted to say hello for now and as Christine wrote we want to let you know that you are not alone.
Welcome {{{{{hug}}}}}Gabriele

Hi and Welcome Jeanna. I am glad you found this site. There are a lot of wonderful people on here. This is my "family." As the people here know what we go through and the emotions that can hit us when we least expect it. Keep us updated on Ron's progress.

Thank you all so much for the support you have already shown me & my other. I like it that you all still manage to have a laugh - that is really important. I had to laugh at the person who woke from some sort of surgery & started hallucinating...Rod did the same after his peg was inserted, can't quite remember but something about a wheelbarrow on the ceiling...he told me he had everyone in recovery laughing but was a bit embarrased when he found out what he was like. I went to my chiro this morning & was telling him about this site. I said I felt so much better mentally after coming across this support.

Rod had 4 weetbix this morning for breakfast, I said if he ate it all he only had to have 1 x formular via the peg. He did good. He said he will try & eat something else at lunchtime, I would assume it's very hard for anyone with no teeth. Eating anything is a good thing. His next follow up is on Tuesday next week. I'll be decreasing the MS Contin again tomorrow.

Question - I would have expected the small lymph node to go by now but it hasn't. The large one has decreased in height more than size - is that normal for 3 weeks post Tx?

that's great news Jeanna that Rod had weetbix. Every little bit counts. Steve had 1 today plus 4 glasses of icecream so I'm happy with that. Plus he's on 5 cans of 2cal via his peg and his weight is slowly climbing back up. I'll be interested to see what answers you get to your question. Steve also has 2 tumours still showing and we are nearly at the end of treatment. I'm concerned as well but figure treatment continues to work for a bit after it ends so I'm hopeful they will continue to shrink. I will be thinking about you and Rod and wishing you all the luck in the world.

About no tetth. LOL If it can't be gummed to death, trash it. I have been trying to eat for 20 months without chompers. It just doesn't work so great. It's a lot like a Bear trying to not empty out in the woods. LOL hard to do.

LOL Jim, but all he wants for Xmas is a full set of teeth & an eye fillet steak!! Are you going to eventually invest in some chompers yourself? I've heard a lot from my mum about people gumming to death & being fine with it. Rod hates it, think he wishes now he'd looked after his before gtting them all out!!

Thanks for your ET's email add, once I get used to this site, I'll write to her.

J

Oops...well, just in case you wanted to read that twice!!

Note; if I don't laugh once a day, I'll cry inside all day.....you guys rock.....