, Dec 15 2011 08:12 PM
507 replies to this topic
Posted 09 January 2012 - 07:54 AM
Haven't been on here much but enjoying a summer break. Dp is back at work, feeling better as he's on his two week break. I'm taking dd down the coast later for a few days with mum.
Hi lilwil! Glad you joined us.
Posted 11 January 2012 - 09:23 PM
Hi all (and welcome Lilwil2!)..
Hope everyone is enjoying their school holidays etc as much as possible..
Good luck Lou, I hope you can make a decision soon, what a hard one to make...
Glad your dh is back at work, KT, mine went back last wednesday, he's all good and we are off to Qld this saturday.....
Posted 12 January 2012 - 12:24 PM
Hope everyone is doing OK. Well I'm back at work now and all is going well.
The kids are back to school on January 23rd.....our big boy is stating high school at a small private school about half an hour away from where I work. I think I am over-protective as I am not keen on the idea of him going on a school bus, but its the only way. I can't believe my baby will be in Year 8 this year and is turning 13 in less than 6 months!!!
DH's back is still playing up.....he has had all the necessary scans etc, and his next MRI is in about March. Apart from that he is good.
Posted 17 January 2012 - 07:56 PM
How is everyone going?
I saw plastic/reconstructive surgeon yesterday before my 7th chemo for his opinion. Because I have to have radiotherapy after mextectomy, he won't do any sort of temp or permanent reconstruction until 3-6 mths after radio is complete. So I have to finish chemo (6th feb is last one), have mastectomy (early to mid March, should have date next week when go back to breast surgeon) and then radiotherapy April-May (5 wks) and then wait 3-6 mths before reconstruction. So I'm bald, no eyelashes or eyebrows, FAT (7kg up and counting, thats all my baby weight carefully lost before I got sick, now back on) and uni-boob for months. I am absolutely GUTTED. If My boobs weren't quite so droppy after 2 x babies and extended breastfeeding, he would at least give me an expander (temp recon), so I am severely p*ssed off with my body.
Posted 18 January 2012 - 06:43 PM
Lou, oh lovely, I can't even imagine how p*ssed you are at the universe
My mouth (and fingers on the keyboard), are all flapping about uselessly, I just don't know what to say
I wish I could make it better for you, it just sucks. So much ahead of you. Can I just suggest getting through one day at a time, and trying to find enjoyment where you can. Just survive, and worry about thriving later? That might sound incredibly patronising...I'm scared it does
We are doing fine here. The dreaded incontinence has reared it's ugly head. It's only stress incontinence, and that is something I am very familiar with after birthing four large babies. I know how frustrating it must be, and he is quite annoyed with it at times, but he knows that in all likelihood he will achieve normal continence in the future.
We are no further along with regards to pathology. We SHOULD have had an appointment by now, it was scheduled for early January, but we were still on holidays, our first decent length family holiday for year, and DH found out while we were there that he was supposed to have his blood test a full WEEK before the appointment..and he simply didn't want to cut our family holiday that short. The appointment is now mid Feb. In our case, no matter what the outcome, it would not change much in the short term, so it's all good....as much as I would like to know what our future will be. He is good at the moment, back at work. Still a bit sore, but nothing too much.
Thinking of you all - time to check in!
Posted 18 January 2012 - 10:35 PM
Hey Lou, thinking of you..
Haven't been on here much as in qld (yes made it without any dramas for a change...)
Hope everyone is ok, have an appt with the liver specialist on monday 23rd, then another scan, then the oncologist 31st, to see how the chemoembolization went.
My dh had 18 months of chemotherapy, including Erbitux which Kristian Anderson fought hard to successfully get on the pbs, but all was stopped in october last year as everything had stopped working.
he had a new treatment called chemoembolization, which the radiologist injects chemo beads directly into the liver, which is why we are off to see the results..that was the sickest he had been in nearly 2 years, but he's a trouper and have to say it's me that handles things less than him..
I'll drop in when I can to see how you are Lou, KT and everyone else is when I get a chance..
Edited by Chchgirl, 18 January 2012 - 10:35 PM.
Posted 20 January 2012 - 09:34 PM
I'm so sorry Lou. Dp feels like this too, he has kept his hair but his skin is pimply, bags under his eyes and of course the colostomy bag doesn't make him feel handsome... It's not forever though and I still think he is handsome! Hang in there. You deserve a massive pamper/hair/nails/clothes day once this is over and you recover!
Jules tell dh that bladder incontinence is nothing! It could be bowel incontinence!
Glad to hear he is recovering though. You must be anxious to get the all clear?
Chch...how did you guys ake the news that Kristian had passed away? I must admit seeing another young dad with the same cancer as dp passing away was hard. I know it's possible it will happen with us but I don't usually "confront" that feeling. It's a mixture of disbelief, denial and positive thinking!
Dp has had a fantastic break from chemo. It's like he is himself before cancer this week, except for the bag! 8 weeks down, 24 to go!
Posted 24 January 2012 - 03:43 PM
just wanted to pop in & give everyone here a huge cyberhug! This is such a traumatic thing to go through:(
I lost my father to pancreatic cancer I cared for him for the whole year we had him after diagnosis it was a very tough time of my life & I miss him everyday.
Be strong & when you aren't - lean on someone for support there are so many who have been through it 'personally' or have had a loved one diagnosed with cancer of some sort.
So pls accept my hugs.
Posted 24 January 2012 - 09:11 PM
Hey Kt, it sucked actually hearing about Kristian, I have been following his blog for a long time as my dh is exactly the same, but he doesn't want to and never has wanted to know his prognosis, he likes to keep positive and that's how he gets through things. I prefer to know the nitty gritty and have had plenty of private conversations with the oncologist over time but that's how I deal with things.
It was hard reading Kristian's blog but at the same time helped me as we have pretty much been in sync so I have known what to expect..I don't want to freak you out as your dh is much less advanced so don't let my straight talking worry you as your dh is much more curable, I have learned a lot about cancer in this time!
The good news is he has a scan tommorrow and oncologist is next tuesday so see how things go this time..
Sounds like your dh is doing well so glad to hear it!! Love hearing positive stories so much..
Posted 28 January 2012 - 09:30 AM
Just checking in to see if everyone is ok here...back to school for kids next week, youngest will be in year 5 (nsw) and oldest in year 8! Time flies...
Posted 28 January 2012 - 10:52 AM
I'm doing ok, into my "good" week now with next chemo on 6th Feb. Then mastectomy booked for 5th March (and radiotherapy after that). Dreading surgery, really really dreading it, brings tears to my eyes just thinking about waking up with nothing there (recon at end of the year). Charming disease this, I will be bald, no eyelashes/eyebrows, overweight (7 kg chemo weight and gaining) and uni-boob. Fabulous. And still upset about no 3rd baby and that I had to wean DS when and why I did.
Hope everyone else travelling ok?
Posted 30 January 2012 - 07:19 AM
I know it sucks Lou. But after surgery is over, you are the the "worst" point in terms of how you look/feel...and from then on you will be able to be on the upward side of getting better and getting back to normal? How long is the radiotherapy for?
The baby thing is bloody hard, I've struggled with it. I can't help but at least you aren't alone.
Posted 31 January 2012 - 10:29 PM
Pretty crap atm, but will explain later when i can..
Good luck Lou, sounds dreadful, but by the end of it you will be better, I know someone who had gone through the same, and as crappy as it all sounds, by the end of the year you will be feeling a lot better..I know how you feel about the 3rd baby..xx
Posted 01 February 2012 - 06:06 PM
Hope everything is ok chch
Posted 03 February 2012 - 12:33 PM
Not the best mate, prognosis not good but although I have known this for a while, the closer it gets the harder it gets.
Chemoembolization in december didn't work, liver tumours have grown more, so one more try of treatment and this is the last they can do..it will be infusion once every six weeks and then tablets for 2 weeks..
Dr's guestitmation when I spoke to him on my own in october when they stopped regular treatment was between 3-6 months, this time is 3 months or so..
So back to it and wait and see what happens! Being positive is his key and mine (most of the time..)..
Hope everyone else is well and I haven't scared anyone, remember everyone is different and do not google!
Posted 03 February 2012 - 01:24 PM
chchgirl - I am so sorry.
Can I join this group? It is not me or my DH but my MIL. She is only 59, and my 9yo daughter's best friend. She was diagnosed with breast cancer in October and secondary (bone mets) in November.
On Tuesday I asked the oncologist, who said the prognosis for the top 10% is 4-5 years and median 22 months. Just awful, especially as she is so well and pain-free at the moment, and still thinks that the chemo will shrink her cancer so that she can live a relatively normal life.
At the moment she is on hormone treatment but it doesn't seem to be working, so another appointment with the oncologist in a month to see how it is going and possibly move to chemo.
Posted 03 February 2012 - 04:34 PM
Can I join this group too? Not that I really want to! DH has been diagnosed with a brain tumour. He had a seizure last Friday, (first one ever!), had a CT which was clear, then his GP sent him for an MRI which showed a 4X3X3cm tumour in his brain. We saw the neurosurgeon today who has suggested we also see an oncologist. DH is booked for a PET next week and started on anti-epileptic meds today.
We have 4 kids who range in age from 9 to 18, not quite sure how we are going to tell them yet, but we are going to sit down on Sunday and tell them the basics.
DH and I are trying to be positive (cliched I know!), but there really isn't anything we can actually do about it!
Any advice on how to tell the kids and any supports that might be available to them would be appreciated.
Posted 03 February 2012 - 04:57 PM
I too found the issue of trying to help my then 7yo now 8yo DD.
I took some brochures from the Cancer Council to school to try to give the teachers the information that they needed, and to try to explain that her behaviour was typical of a young person in her position, but I don't even think they read them.
THere are many programs out there to help young people deal with cancer in the family, but found that my DD was either too old or too young for any of the programs offered.
She had to deal with taunting from a few classmates that are damaged children, and who kept telling her I was going to die. She blew right up at them when they would not stop teasing her after she asked them to stop. She ended up with a red card, but the agressors - nothing.
A very hard task to deal with when it comes to getting support for children who fall between the age groups being targeted with therapy.
I hate the fact that I'm irritable, hot and sweaty then cold and shivering and have very little patience. I've tried my best to explain what is happening to me, but feel awful that my temper is so up and down.
Umm, maybe I need to become an advocate for cross age assistance?
Posted 03 February 2012 - 05:03 PM
Welcome to the thread guys, more than welcome!
I can't offer much advice as everyone is different, but definately a chat when needed!
Scarfie, are you in Nz? I thought I remembered that a while ago..we were and came back in july 2010..
The subject of this thread is not a good way for everyone to meet but a place where others can understand..
Posted 03 February 2012 - 06:49 PM
Chchgirl, I'm in Sydney. My eldest was born in Dunedin though, and my next two were born at home in Geraldine. Been here since Aug 2000.
You know, when we first thought about telling the kids we worried more about the three older ones (13, 16 and 18) because they have more life experience. DS1 who is 13 had a friend lose his Mum to cancer last year, so he is going to have a good idea of what is likely to happen. The two DDs are typical teenage girls, will cry at the drop of a hat, so not looking forward to their grief. DS1 and his Dad don't have a great relationship either, so I think he will really struggle. I hadn't really thought too much about how it would affect the youngest, but the TikkaB's post was a bit of an eye opener to the issues he might have! I have been seeing a counsellor at work through an EAP for other work related stuff, so hopefully he will be available to the kids too. DH has an EAP at his work too and will access some counselling through there. How do we find out about Cancer Council etc do we just contact them?
Posted 03 February 2012 - 07:27 PM
Ahhh bugger, I had a long post all typed up then lost it! Try again …scarfie
~ your DH’s diagnosis sounds lot like my cousin’s partner – one year ago had seizure and diagnosed brain tumour. One year on he’s had surgery which removed 40% of it and then radiotherapy which further reduced its size and last I heard he doesn’t have to go back to doctors for 6 mths. Ring Cancer Council directly, I did when I was diagnosed and they put me straight through to an oncology nurse who helped me with what to tell DD (4yrs) and mailed me out a bunch of stuff too. And definitely use your/your DH’s EAP too.Chchgirl
~ so sorry to hear about your DH, I have everything crossed this next treatment does help.*TikkaB*
~ poor you feeling so crappy, I’ve also got chemo-induced-early-menopause (I’m only 36) and its just lousy, like we need extra symptoms to deal with!Reality Bites
~ your poor MIL and your family too, I really hope the hormone treatment (or chemo if it come to that) helps her, I’m really so sorryKate
~ surgery 5th March then radio from mid April for 5 weeks and then I can recover I guess, although reconstructive surgery (which is quite major surgery) won’t be until later in the yearme
~ struggling with tiredness, DH was away at sales conference all week and DD slept badly all week (missing daddy I think) so I have been up lots in the nights and I seem to have no stamina (I blame chemo). Next (last) chemo on Monday. I'm also very teary anytime anyone asks me about the mastectomy (or anytime I let myself think about it) so I suspect I'm heading for some counselling, I see my breastcare nurse on Tuesday after my chemo and see what she says.
Posted 05 February 2012 - 04:56 PM
Well, we told the kids
. I think it kind of went over DS2s head, but the older three were upset. DD2 got pretty angry too, and when I suggested that they could see the school counsellors she was really upset and said she didn't want to talk to anyone about it. I think I made a mistake and told her best friend that I was going to be giving her some bad news and that she might want to talk with her later, DD2 wasn't impressed with that either. DS1 has been very quiet. One of his friends mothers died from multiple cancers late last year, I reassured him that his Dads wasn't the same, but cancer is cancer as far as a child is concerned I guess. We gave the kids each a notebook and suggested that they might want to write their thoughts, or draw them, as DD2 and DS1 are very artistic, or any questions they think of, or, they could do nothing with them.
God, it was so hard, I have had myself in knots the last two days thinking about how they would take it, and they did take it better than I thought, but then DH did tell them that the neurosurgeon told him about people who he had treated who lived 20-40 years after surgery, I kind of wished he hadn't said that, as the reality is that its likely to be 5-10 in the best case senario.
DH has started on the anti-convulsants and no side effects so far, so he's happy with that, he's going to go to work tomorrow, trying to keep as 'normal' for as long as he can.
Hope everyone else's journeys are going well.
Posted 05 February 2012 - 05:34 PM
They will be ok. Remember the shock when you first found out? They will need time to process it all. I'm guilty all the time now of saying to people, yeah dh has chemo on Tuesday (in a tone that sounds like dh has a cold!) and I shock them. Over time you get used to it a bit. They will too once they ask lots of questions etc.
The cancer word is the scary bit, we avoided that word because of the connotations. Dd knows all about bowel tumours, chemo, stomas etc but hasn't really connected it to "cancer".
It will help for them to see "normal" as much as possible. Normal dinners, normal bedtimes, normal friends dropping around...every little thing that makes them feel like their world isn't going to stop. Even watching the tv shows we always watch (in hospital) etc helped dd I think. It might also help to explain in simple terms the "plan of action" so they feel a sense of control over the situation. We talk to dd about how the surgery cut out the tumour, the chemo stops it growing back, .....dd is nine though so it might change things.
Chchgirl please don't sugar coat anything for me! I have googled...we are fortunate at this stage that dp is possibly cancer free. But I would rather you share with us and we might understand a bit of how you feel than try to spare us. Hopefully I can understand your feelings even if dp is at a different stage to my dh.
My dh still having a hard time emotionally. Asking about finances and wills, getting very upset with his stoma, very insecure about his body. He's working really hard and probably pushing normality a bit too much, not taking anti nausea tablets and putting up with being tired rather than going to bed early. It's really hard to get him to look after himself because he thinks "it's defeating me" if I start going to bed at 8:30. I feel a real disconnect between us right now, I'm retreating a bit because I feel a bit aimless right now. I'm working again which is good but I feel "stuck" with my life a bit, hopefully it's Pms talking.
Posted 06 February 2012 - 09:41 AM
That would be the hard part KT, I know one great thing about dh is really is positive and refuses to give up, which is what has got him through, he's fantastic!
By the way received a call from the hospital this morning to start new chemo this thursday, which is good..
Take care Scarfie..
Posted 11 February 2012 - 09:14 AM
Just bumping up to see how everyone is travelling at the moment..
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