Astrocytoma

Personal stories from survivors
Deanne
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Location: Perth

Post by Deanne » Thu Jan 21, 2010 4:57 pm

Thank you for your kind words Kenobewan.

Montaldi, I'm so sorry to hear that you're also going through what we're experiencing.

My husband turned 50 in August 09, like you with your son's birthday, we organised a large party to celebrate. We didn't invite family as we wanted it to be a happy occasion (family members constantly break down in tears) and most people at the party didn't know what we were going thru. I know we were being a bit selfish, but I wanted the night to be as normal as possible for John and the kids.

So I can go to work, we have carer's coming into the house 4 mornings a week. I have reduced my hours in the office, so he is only alone around 3 hours a day, which he's in bed having his afternoon sleep (in theory).
John hates having strangers in the house, but I need to work and have piece of mind that he's safe.

alley
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Location: Melbourne

Post by alley » Thu Jan 21, 2010 7:38 pm

Hi Deanne, only just read your post - thankyou for your kind words. I'm sorry to hear about your hubbie, but he is obviously very lucky to have you by his side and as you said, where else would you be as you love him! We take each day as it comes and fill it with happy memories with the kids. I do try not to think too much about the future but like you I am a big control freak. I also get angry, sad and scared about what the future holds, and I also envy loads of my friends who compain about how bad their lives are when in acutal fact they live pretty good lives. I also don't suffer fools gladly (anymore!!) much like yourself. On a brighter note I do find a lot of comfort in this website as it provides me with loads of advice, ideas and support even though I don't get to write on it as often as I would like.

Stay positive and my thoughts are with you and your family
Alley

Morpheus
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Location: Sydney, Australia

Post by Morpheus » Wed Jan 27, 2010 8:28 am

I've been thinking about you both since you posted. I've been searching for the right thing to say, and the only word that comes close is "solidarity".

I don't know if this means anything to you, but I've thought about both of you and your families in my prayers.

alley
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Location: Melbourne

Post by alley » Thu Feb 11, 2010 5:33 pm

Well it is that time of the year again, MRI on Fri and then off to Neuro next Thurs. That week is a killer....... Hmmm does anybody else live their lives in 6monthly intervals???!!!!!

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kenobewan
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Post by kenobewan » Thu Feb 11, 2010 9:11 pm

Just had my latest after 4 months. I have a sympathetic neurosurgeon and my wife doesn't take no for an answer ;).

Not sure about these radiologists. We made the mistake of reading the latest report that said that there was new growth and described my latest scans as "worrisome". My neurosurgeon this week confirmed that they had misinterpretted the scan. The increase in gap that was measured and the cause of concern would actually have shown that my tumour had shrunk by 6mm, but the slices where not exactly the same as previously.

Not sure that my wife needed to worry needlessly for a few days. Unfortunately this is not the first time they have been wrong. So far they have been wrong in my favour and the original report said I had a GBM not a mixed glioma, which pathology confirmed as OA. I guess as long as they continue to be wrong in my favour I'm not complaining ;).

Now that I am following the advice of the "Anticancer" book and other research I personally don't feel that I'm living from scan to scan. But it helps that I am getting good results in the gym and my quality of life is improving all the time :). I wish the same for everyone here.

Deanne
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Location: Perth

Post by Deanne » Wed Apr 21, 2010 4:13 pm

Hi Montaldi

How are you and your husband going?

I'm finding life pretty tough at the moment.

Deanne

ABL87
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Post by ABL87 » Fri Jun 25, 2010 11:30 am

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Last edited by ABL87 on Tue Feb 08, 2011 4:37 pm, edited 1 time in total.

alley
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Location: Melbourne

Post by alley » Tue Jun 29, 2010 2:15 pm

Hi April, the last MRI was in Feb and no change. We are due back again early august. My time flies!! We have struggled this year personally, we have come very close to separating but it breaks my heart to think that he would go through all this on his own. He has finally acknowledged that he has some issues that need to be sorted and is back seeing a counsellor and things have slowly started to get better but it will be a long road. We just take each day as it comes and I guess that is really all you can do. Somedays I don't even think about the tumour as he appears so well - the worst thing is explaining it to our nearly 5 year old who knows that we go to the doctor to see about the growing in daddys head. Thanks for asking how we are....I have found great support through this forum.

Cheers Alley

alley
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Post by alley » Fri Aug 06, 2010 5:20 pm

Hi guys, holy cow where does the time go?? Just had another MRI and get the results Tues week. can't believe that 6mths has just disappeared! But I guess on the other hand it is a good thing as J's tumour is not constantly in my thoughts all day every day anymore......It is hard to believe that he actually has one as he is so well physically. So shall let you all know the results......until then stay well
Alley

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kenobewan
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Post by kenobewan » Fri Aug 06, 2010 5:47 pm

That he is so well is a great sign. Without further symptoms its unlikely that things have changed. I'm sure that its down to good fortune and family :).

alley
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Location: Melbourne

Post by alley » Thu Aug 19, 2010 7:12 pm

Hi all, as Kenobewan predicted there has been no change in the tumour. Nil uptake of the contrast which is excellent news so next checkup in 6mths!!

alley
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Location: Melbourne

Post by alley » Fri Sep 24, 2010 7:51 pm

Guys an update. Jus is fine but we have just lost our 2year 10month old daughter suddenly. Our beautiful and precious girl lost her life.....I never expected to be burying her. Jus is gutted and I have no idea how life will ever go on. Can life deal me any more blows?????? My heart is completely broken and empty.......

hugsnkisses
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Post by hugsnkisses » Sat Sep 25, 2010 10:53 am

Hi Alley,
So shocked. What happened? There is nothing I or anyone else can say to make this any better for you, just know we are all thinking of you and if you ever need a friendly ear....well you know the rest.

I have three friends that lost children, all suddenly taken away, one just four weeks ago so I can only imagine how you are feeling. One of my friends lost her daughter suddenly at the age of 9 from an undiagnosed genetic disorder. There was nothing any of us could do to lessen her pain just be there for her. She found talkng about it helped immensely and I can't tell you how many times we listened to her story and cried with her. Perhaps the only advice I can give is lean on your friends, those who are real friends will support you through this and will be there for whatever you need and part of your friendship is you being able to lean on them as well. Don't be afraid to ask for help, you are going through the unimagineable. I wish I could help. Sorry seems so inadequate. Just know you are in my thoughts and prayers. One day you will reach a point where the pain you feel now will be a lot less, just takes time. Just take each day as it comes and it really is a case of putting one foot in front of the other. If you work, then that is good. It can be an escape for you. In times like this your head can be your own worst enemy. Just be kind to yourself and don't expect too much of yourself. There is no pressure on you to be the supermum, superwife, supercoper. Give yourself the time and space to heal. Talk to a psychologist if you need. You did nothing wrong and there is no reason for something like this to happen. It is just fate. To feel gutted and hopeless is normal but if it goes on too long...see your doctor. What you are going through is probably the hardest thing youwill ever face but you will come out the other side, just take baby steps.

Sending you a big cuddle,

Sue xx

montaldi
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Post by montaldi » Tue Sep 28, 2010 9:46 pm

Oh Alley, there are no words that can describe the utter feeling of loss, pain and grief that just washed over me as I read your post. I am so deeply sorry for your loss. The words fail me, other than to say go gently with yourself. I send you my condolensces, but know that I send them with the deepest of love. My thoughts are with you and Jus. Rest easy little one, may your angel wings carry you high.

alley
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Post by alley » Fri Oct 08, 2010 6:27 pm

Hi guys, thanks for your very supportive words. We have no answers as to why we lost our beautiful Gracie. An autopsy has been performed and the police and coroner have commenced an investigation so we are in limbo...... but nothing will bring back our precious little girl. And just to kick us whilst we are down I have just found out one of my girlfriends has just been diagnosed with a grade 2 brain tumor and is now awaiting surgery for same....man life is truly shitting all over us..........hard to stay positive when life keeps on throwing you curve balls!

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