[notorico]

Scarfie, don't apologise, that is what we are all here for. If we can't get it out here where can we. Hopefully the counselling will help for your DH I know it really helped me - I always feel a bit lighter when leaving a session.

We don't have the option of resection at this point so will only be doing the biopsy. We have been told that he will be in hospital anything from 5 days to 2 weeks depending on how everything goes. We are preparing for the maximum stay, but obviously hoping for a shorter stay. DS hates staying in hospital, so is quite anxious about it all.

[mrsgm]

Thanks everyone...yes am just recovering at the moment. Every day is a little bit better and I get a bit more mobile but trying to take it slowly, still can't walk far etc. Have my mum here for another couple of weeks, and then after that will probably just have help during the day and DH to help at night. I am worried about not having someone here full time as it's hard with the boys and not being about to pick up DS2 who is only 17 months and just doesn't understand, but I guess we will figure it out as we go.

My pathology from the surgery was pretty good and they were happy with margins so at this stage no radiation. I thought I might have to as it had fused to my bladder but it's not recommended at the moment. I know I am lucky, but was almost hoping to have it as a bit of an insurance policy to make sure all the cells are gone. Now it's just a wait and see and having regular checks and hoping I don't get any other symptoms back.

My oncologist thinks there is a 90% chance the surgery is all that will be required. Given there is a less than 1% chance I should have even had cancer, 10% chance of recurrence feels like of high to me at the moment, but I guess it's just something I have to learn how to live with.

Lou, I am so sorry to hear about your diagnosis and surgery. How are you feeling post-op? Hope your children are ok - mine found it hard when I was in hospital but have been much happier since I got home - hope it's the same for you too.

Notorico, that sounds just so hard, I hope the meeting with the surgeons goes ok today. I hope your boys are coping ok, it sounds as though they are close?

Scarfie, don't feel bad at all, it's better to get all your feelings out and to be honest, I found it good for me to read. I am trying pretty hard to just keep things as normal as possible at home for us all, and it's good for me to have a reminder to not let this horrible situation and my feelings about it take over everything, and to make sure DH and I still have normal conversations and I ask him about work etc. I have no doubt there are some days it will be harder than others, and we are going to have a lot to work through together, but it's good to hear from other people who are also living with it and how it affects them too.

[Chchgirl]

Hi guys, haven't checked in much lately as been pretty busy (and admittedly sometimes I forget!), but thinking of all who have gone through or partners have gone through surgery..

Hang in there Lou, I know someone who went through the same, just focus on your recovery and mental wellbeing...

Thinking of your dh, Chlyoe..remember there are a lot of things they can do, this is just the first step..

Scarfie, all I can say is rant away, it is needed, I wish I could have done that in here 2 years ago! ( I still go on a bit!)..

Mrsgm, glad you have joined, as the others have said, give it time to sink in first..

Hope everyone else is hanging in there, KT you too...

I'm not always good with words in writing ( you should see me in real life though, I am a talker and don't stop!), but one thing I can say to anyone new who joins this thread (Mrsgm hear me ) is two things,

1. Don't be freaked out by other's stories too much, every case is different and what may be bad for one person may work well for the next, everyone reponds differently and every person's case is different. Don't be freaked out by my dh as others are different.

2.Stay away from google if you can. Too much bad crap on there..

Take care all xxxx

[*TikkaB*]

Wishing you a speedy recovery LOU.

Love from Angela & Saffron (DD)

[*Chyloe*]

Lou..glad that your surgery went well and hope you get to go home today.

Mrsgm - welcome and sorry about your diagnosis also. Hope you are feeling better soon.

Notorico, hope all goes well for your DS.

DH is still in hospital. They sent us to the Wesley on Wednesday to have radiation planning done but they couldn't do it due to staples still being in incision. Now next Wednesday instead. They are trying to get his pain under control before they let him out. Radiation 15 treatments over 3 weeks.

I told the boys on Saturday. The oldest pretty much knew and the youngests first question was "is daddy going to die?" Heartbreaking...I am doing OK..some days better than others..some days completely sh*t.

[LilWil2]

OMG!!! Scarfie! Did I meet you at the Kollig institute on thursday? If I didn't actually meet you, you might remember me anyway - I was the one running around with the camera - and my dad was doing the registration (mum was there too). small world!
You mentioned your husband is self absorbed and starts/stops sentences md thought. Before my surgery I was exactly the same. I am much more aware now. I am so glad to hear you are going to do resection. I was given the option of watchful waiting, biopsy and resection for my 'low grade' glioma. I figured that the end result either way was going to end in resection so did that first. who is doing the surgery? I'd be happy to have a chat about what you might expect. PM me if you wish.

Notorico - how old is your son? good luck with the biopsy results.

apologies for not singling out others for personal response. My heart goes out to you all, but I can't concentrate the way I used to!

Renee

[scarfie]

LIWII2, I didn't meet you on Thursday, but I do remember you, you were sitting (when you weren't up taking photos) a few rows in front of us! I'm really pleased we went. It made the reality of it all more, but also gave us comfort that we are not in this alone. As someone in my DHs sharing group said "this is the new normal". One of the women in my sharing group gave me her phone number so I have a 'buddy' which is great, also a couple of women from the BTAA and Cancer Council told me to phone them and they can help out with the practical side of things.

After hearing the costs involved, we are now thinking we may go publicly, but not sure how to go about doing that. We are happy with the Neurosurgeon and Oncologist we have seen so far, but not sure we can access them publicly, so much to work out. Having a 'one stop shop' would def be a great idea!

Resection seems to make more sense, both the Neurosurgeon and Oncologist have recommended this, I can't see the point in putting DH through surgery twice. I have moments when I think we are doing the right thing, and then moments when I freak out, thinking what if it is growing while we wait, and when we have the next MRI done it is much bigger? But then think we just need to trust the decisions we are making. It is in a sh*tty spot anyway and they are not going to be able to get it all out, so just leave it for a bit.

Hope all others are well.

[*Chyloe*]

Scarfie - It is so hard to know what to do/say - what is right/wrong with treatments and the like. Sort of like you are damned if you do and damned if you don't. Totally hear you about the cost of everything also. Before DH first got diagnosed back in 2007, he used to whinge about the cost of the health insurance I insisted on having for the boys more than us. Since diagnosis, the insurance has been a godsend, and we've found that you get way more benefits if you're an in-patient at the hospital (for example a test that DH had back in 2007 would have cost us heaps, but because he had been admitted, the health fund picked up the whole lot and we never even saw the bill).

DH came home on Saturday. He was very happy to be home, especially as the food was crap (not that he is eating a whole lot anyway). They discharged him with heavy duty pain relief which seems to be working Ok. He was OK Sunday but not as good Monday and today.

We're off to The Wesley Hospital in Brisbane tomorrow for radiation planning. Actual treatment will probably start next week.


This post has been edited by *Chyloe*: 13/03/2012, 10:28 PM

[Allymeg69]

Hi everybody,
I have not been into this general chat thread before, but today I just feel the need to come in and have a bit of a rant/pity party etc. I won't bore you with repeating my history, if you want to look it is contained in this thread http://www.essentialbaby.com.au/forums/ind...howtopic=898586 .

In short I have melanoma, I was hoping by now I could say I HAD melanoma, but today I got the fairly bad (but not entirely unexpected) news that 5 moles taken off various parts of me last week have all turned out to contain evidence of metastatic melanoma. GRRRR. I went to have the stitches out this morning expecting that to be all, and my plastic surgeon called me in with that sort of look on his face and told me that he had already spoken to my oncologist and made an appt for me for next Tuesday morning, and that I will need to have some sort of re-staging procedure done - I imagine that might be another PET scan but will find out next week.

And into the bargain I discovered some swelling in my groin area a few weeks ago, I had a review with my general surgeon (who did my axillary clearance last year) a couple of days ago, and he advised doing an ultrasound to try and see what is going on, which may be followed by a fine needle biopsy, so I suppose I'll talk to my oncologist about this next week too - I have a suspicion this could all be tied in to these spreading malignant moles that seem to be cropping up all over my body - every time I look in the mirror at the moment I seem to find some new little bugger, and I know my skin pretty well by now! If I have to keep having them all cut out I'll look like a pincushion.

Just so annoyed and angry with my body for doing this too me!! I suppose that is a common feeling. And every time I think of my little boy I am so worried I will not be around to see much of his life. I know I just have to stay positive, and I am ever so grateful that my plastic surgeon was suspicious enough last year to order extra tests which meant we got onto the mets in my axilla at a very early stage.

I have been in to read this thread before and send my best wishes to all the rest of you who are either battling cancer yourselves or supporting someone who is. Thanks for listening, I'll probably be back from time to time for a general chat.
Ally

This post has been edited by Allymeg69: 15/03/2012, 02:50 PM

[mrsgm]

Hi ally
Sorry to hear about your update. Hopefully it wont be too long until you find out what is going on, i found the waiting hard.
I feel the same about my body failing me, and the fear of not seeing my boys grow up.
I have found a lot of support here and just knowing that people understand what you are going through has been a help.
What day next week is your appt with your oncologist?
A:)