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PostPosted: Sun May 03, 2009 1:15 pm 
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Dear Kristalee
Why us? Why now? I don't know how many times we have said that. The word "devastating "does not do it justice. Don't let other people dictate your choices. While it is best for a child to have 2 parents, one good courageous parent can head a wonderful family. I have read President Obama's story (his mother died of cancer). Am still amazed by the American people for electing him.
I was goiing through old photos with a friend yesterday and when we got to the birth of my first child I could honestly say "that was the best day of my life because I became a mother."I can say that about the births of all 3 of my children. I have no regrets ever on that side of things. It sounds like you have thought long and hard about the implications. Sometimes you need to take a leap of faith. All the people warning you against it, aren't they going to be there to help you . If not then they should be quiet.
Your husband is really the only one who can help you decide this.
All the best
Love
Wendy


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PostPosted: Sun May 17, 2009 10:52 pm 
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Jus saw Neuro on THurs and he said there was no change from the latest mri compared with the one done in November. He also said that the regrowth is more spread out which to me only means only bad news - what do you guys think?? He said the original tumour was fairly well encapsulated but this one is more diffuse.....is this because J has a cavity where the original tumour was resected???

We are going back for another mri in 3 mths. The neuro spoke about doing a biopsy to see whether there were elements of oligodendrocytes as they respond well to chemo but I told him that if he is going to cut J's head open then he had better be taking as much of the tumour that he can!! Both Jus and myself agree with this. We also chatted about the 2nd opinion and I explained that I needed a Dr who is going to fight to save my husband so he can be around to see his family grow up and as he had given J 5-10yrs I wasn't happy with that. He said that the tumour would shorten J's life but he couldn't really predict by how much.

Actually the consult was the best one we have had - the Doc was very chatty and helpful and I think that we are now on the same page - however I haven't sent J's mri's to Charlie Teo and not sure whether I should do this now or wait a while?? What do others think???

The neuro will operate again in one of two situations - if the tumour becomes larger or if it enhances on the mri both of which it is not doing at this stage. The waiting is killing me however I look on the bright side that every mri he has from now on that shows no change is a good one as it means the tumour is very slow growing! The doc said that the regrowth is just in front of the speech centre so he is reluctant to be too radical as it could affect J's speech - even after the initial op Jus had difficulty getting his words out but this rectified itself within a couple of days.

Alley


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PostPosted: Mon May 18, 2009 9:55 pm 
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Does Jus take melatonin? My latest information tells me that this slows the rate of tumour growth, although it doesn't get slower than grade 1 :).

Opinions I have read also do not just favour biopsies, if you are going to have an operation anyway see how much they can get out; they can then sample that. So I would go the same way as you, in fact I am planning a second operation and taking these sort of things into consideration. More aggressive surgery is favoured in the hope that the tumour can be totally resected before it turns into a higher grade; within safe limits.

Of course, this is a calculated risk. Apparently, 30% never become high grade and surgery has its risks as you know. I am going with the weight of probabilities and an ounce of prevention. I have a 2 year old who I would like see to grow up :).

I believe the decision whether to see Charlie should depend on what you need. Are are getting the right service now? Can your current team provide you with the treatment you are seeking? If yes, there is a strong case for continuing with the same team. In my case 2 neurosurgeons have now told me they can safely, but potentially with more deficit, get 90+% of the remaining tumour out.

I feel empowered when I make such decisions. Sure, I read others opinions and research, but like you I make the choice myself. I believe that we have enough knowledge to make the right decisions, this gives me and hopefully you the confidence to make these tough calls.


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PostPosted: Wed Aug 05, 2009 1:35 pm 
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Hi guys, well time has rolled around again for us and J is off for his MRI on Thurs and we see neuro on 13th - such a stressful wait that week. THings are naturally getting a little tense in our house and J has been having some very down days- very natural of course.

Hopefully next time I write we will have some good news to share but as always only time will tell!

Alley


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PostPosted: Fri Aug 07, 2009 9:48 pm 
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Alley,

I'll be thinking of you all. Stay strong. We have our next one in September. I'll keep everything and then some crossed for you for good luck.


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PostPosted: Sat Aug 08, 2009 7:19 pm 
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Hi guys, well can you believe it, the neuro rang to say that the appt would have to be put back a week as he had to go into state. How stressful - as J's mental health would not have lasted that long I spoke to his receptionist and explained the situation (she was great I have to say) and Prof rang that same night and spoke to jus. There is no change from his previous MRI taken in May so for us that is the best news we could have gotten. Certainly J's demeanour has lifted slightly which for me is great as I feel so helpless when he is so down.

We still have to go and see him on the 20th Aug to discuss when the next MRI is and as per usual I have questions for him - man he must think I am one bossy nosey wife!! I am not sure whether anybody else has had an awake craniotomy but as J's tumour is right in front of his speech centre I believe that that is his best option in order to decrease the chances of him having speech difficulties post op. Not sure whether our neuro does those but plan on asking. Anybody have any thoughts on that??

Alley


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PostPosted: Tue Aug 11, 2009 12:00 pm 
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Hi Alley,
I would go for the awake surgery, they can get more tumor out that way.My Mark had MRI mapping of all of his speech and thought areas before his surgery. I wish Mark was able to the awake surgery!
Krista


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PostPosted: Fri Dec 18, 2009 7:31 pm 
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Hi guys, haven't written in a long time but need some advice. For the carers out there what coping mechanism do you use for dealing with your loved ones mood swings? I am never sure from day to day whether J is going to have an up or down day. Personally I am a very positive person but have found recently that his depressive episodes have been getting longer and more depressive and they are really pulling me down and I just can't allow that as I have to stay up for the kids......as well as myself.

On a more lighter note may I wish each and every one of you a safe and happy xmas with your families and thankyou for just being there whenever I have needed.......from my heart thankyou.

Cheers Alley


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PostPosted: Fri Dec 18, 2009 9:02 pm 
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To be completely honest, I had to try a little bit of "tough love".

I love my husband to bits, we've been together for 12 years, all of them fabulous years. Physically, mentally he was a very tough man (with years of martial arts training behind him - 2nd dan black belt) but he was bottling everything up and taking it out on those closest to him. I've been by his side through everything and would NEVER want to be anywhere else, but the same thing happened to us about three months ago. We had a blazing row, I am sure the whole street heard it. Maybe we needed to get out all our emotions and get "real" with each other. Since then, it has been really good. I am very sad to say that it took me threatening to leave him to make some changes and I am very glad that it worked, but I had to do it. Someone had to tell him that yes, his brain tumour is terrible (everything about it is terrible) but that he is not going to die tomorrow. And I couldn't live like that anymore. I asked him to see a counsellor and get some support and not because "I wanted him too", but as of yet we haven't got there, but he is doing much much better. I try to shoulder as much of the load as I can, and that at times is very tiring (as all of us carers would know).

Have you got a good mutual friend that you could get to speak with him, maybe try to find out exactly what is going on in his mind? Is a counsellor an option for him? Do you get out and about much as a family, even just for short trips for "fun"?

Massive hugs and same wishes to you for a very merry and happy Christmas :)


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PostPosted: Sun Dec 20, 2009 7:35 pm 
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I think the tough love approach would have worked on me should I have needed it, but it is not for everyone. If he is suffering from serious depression he may need medical intervention. I think there is a difference between those who can talk through their fears and those who have sunk into dispair.

As a parent, I am a great believer in logical consequences. If my wife had brain cancer, threatening to leave her would not be a logical consequence of her disease. My approach, based on my parenting, would be to talk about the problem - "when you are depressed it is getting me down." Then comes the tough love component, "if you don't do something about I intend to do.."; the logical consequence. After this warning it is time for action if this fails to motivate change.

Recent research has shown that we men are lucky and our loved ones tend to stick by us. You certainly find out who your friends are. Depression is common side effect of this illness, whether facing the bleak statistics or as a direct side effect of the disease. You know your husband and all I can say use that knowledge to decide what approach is most likely to work. Good luck - a little understanding and a lot of love is likely to go a long way.


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PostPosted: Sun Dec 27, 2009 7:40 pm 
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Thanks guys for your advice. We did end up having quite a heated debate shall we say and since then things have certainly improved. I am also going to try and get him to see a counsellor. He did see one this year for one session, but never went again as he felt that he didn't need to have anymore sessions!

Life continues on........I often wonder what life must be like for people that are not touched with this.......imagine not having to worry about this every single day of your life.........oh how free one must feel!!

Cheers alley


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PostPosted: Mon Dec 28, 2009 9:30 pm 
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I am sorry that you had an argument. It's never nice to argue, and certainly not when faced with the problems we all are.

I guess from my post, I wanted to point out to you also the need for you to get as much help as you can (easier said than done) so that you are best able to meet all the demands placed upon you. I've had a very rough time lately (three year old son is having behavioural issues, my mother in law had a stroke, income protection insurance decided to stop paying, my family live over an hour away and all our friends seem to have abandoned us), so I really felt I was at the end of my tether and just couldn't cope anymore. Doing it all alone is tough :(

It all just bottled up, and when it exploded, it exploded. As my counsellor pointed out, a lot of relationships cannot handle the stress of something like this. Having said that, it does take 2 to make a relationship work. The dynamics of the relationship change, you may take on a different role than what you are used to before, but it still takes both of you to make it work.

That's why I think getting J to talk to a close friend might be a good idea, maybe he will let more out then he will to you. It's important to make sure you get a chance to look after yourself so that you can look after J.


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PostPosted: Mon Jan 18, 2010 4:46 pm 
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Hi Alley and Montaldi,
I'm now described as a carer. I'm also a mum of two kids and work full time. My husband's condition has deteriorated a lot since xmas day. In the last couple of weeks, we've had the house modified with rails, wheel chair ramp, shower heads changed and now a wheelchair and walking stick have become a standard piece of furniture in the house.

In November, we spent a week riding bikes around Rottnest Island, wow things can change fast.....

In the past I didn't see myself as a carer as John was able to do things himself. Now he is very dependant on me.

All I can say is that being a carer is dam hard. I find it hard to accept help from other people, but all of the sudden I'm saying yes to meals being delivered by school families. I'm also learning to delegate at work (I'm a bit of a control freak). I'm not taking things so seriously anymore, and do not tolerate idiots or drama queens.

I've accepted that I can't go out with the girlfriend once a month for dinner unless John is in bed, had all his medication and feeling safe. I'm trying to have the kids do a bit more around the house even though they are young (10 and 11yo).

One of the hardest things I've discovered, is that I have to take responsibility for everything now. Before I was the inside of the house person and John was the outside house person. Learning the reticulation control system and pool maintenance has been a challenge.

My sanity at the moment is my job. I enjoy the break from being ordered around at home. I get angry some days, sad the next, but keep going as I love this man and know thats its not his fault, it's just our lot in life, so I soldier on.....


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PostPosted: Tue Jan 19, 2010 8:33 pm 
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Deanne wrote:
Hi Alley and Montaldi,
I'm now described as a carer. I'm also a mum of two kids and work full time. My husband's condition has deteriorated a lot since xmas day. In the last couple of weeks, we've had the house modified with rails, wheel chair ramp, shower heads changed and now a wheelchair and walking stick have become a standard piece of furniture in the house.

In November, we spent a week riding bikes around Rottnest Island, wow things can change fast.....


I could have written your exact post Deanne! In November we had a holiday on the GoldCoast. Christmas Eve the oncologist gave us the news we had been dreading for 18 months and we have found ourselves in the same situation as you. Our oncologist even referred us to the palliative care hospital but never told us about the referral. So even though their phone call was not unexpected, it still would have been nice for him to give us the courtesy of telling us that they would be getting in contact with us.

So things that used to be just manageable are sliding out of his reach. He can't write his name anymore, difficulty standing.

We just celebrated our sons 3rd birthday party, we had a huge party at a local play centre. We wanted to make a big deal of it and it was a lot of fun. Even still, there were of course lots of tears...... lots of tears everyday :(


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PostPosted: Tue Jan 19, 2010 9:58 pm 
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My heart goes out to the both of you. I count myself lucky to have such a loving wife who supported me when times were tough. My hope is that she won't have to go through what you are both going through.

I agree that false people become, perhaps unnecessarily, annoying. I judge people by different standards now. Health issues really brings things into focus, especially what is important.

Both your husband's are lucky and I am sure that they know it - to be so loved. Cancer is certainly a test of the character of the patient and family. While I wish both a Lance Armstrong recovery, if this is not their 'fate' I hope that they find peace.

One thing that has given me some peace is that if I die more than 30 years younger than average, everyone faces the same challenges. I vividly remember visiting an aged care facility when at school, where people were frail and afraid. They remembered 50 years ago like it was yesterday and didn't understand where the years went or how they went so quickly.

May you find your own peace whatever the outcome.


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