[Chchgirl]

Good KT, just hanging in there at the moment, although things are up and down, he's been to hospital twice in three weeks with a high temp and a bit of pain here and there, and spent a couple of weeks practically sleeping, that's when it gets tiring for me!

We have been travelling as we are trying to do as much as possible while we can, although we have always gone on a holiday every year. I have a new part time job so have been able to get good airfares..we went to Hamilton island a month ago, and this wednesday are finally off to Christchurch, not having been there since july 2010 before the quakes..! We have tried twice, once in december and once in march and both times been jinxed by illnesses. Thankfully we take off in two days so happy about that. Christchurch is his hometown and i think he needs to go back for himself. It will be a bit of a shock to see any earthquake damage in person though..

Good luck to all for appointments this week, sorry will do personals when I get back, but am keeping an eye on everyone here..hope you are looking after yourself too KT..

[KT1978]

Chchgirl I'm glad you guys are getting out and doing some travel, must be hard while dh is so unwell.

Hope you are looking after yourself, in between work and family.

I hope the trip goes well. Xx

[*Chyloe*]

Notorico & TikkaB - hope today/this week goes well. Please update when you can.

Chchgirl - have a good trip away.

Well, DH is having radiation treatment no 12 in about an hour. 3 more to go after that and then we have to wait 6 weeks for another CT to see if it has worked. He is also doing various natural therapies, and he is so positive that he is going to cure himself. I am sorry to say that I am hugely sceptical about natural therapies/remedies, but I can't even mention anything against them or I am being "negative" etc. I am really scared, but can't talk to DH about it, and his parents are convinced the natural stuff will work, or he will get a miracle cure from God. How do I deal with this???? The inlaws have our boys convinced that DH is going to be OK as well, and I think it is setting them up for a lot of heartbreak. Am I a b**ch to be thinking this???

[Chchgirl]

Chchgirl I'm glad you guys are getting out and doing some travel, must be hard while dh is so unwell.

Hope you are looking after yourself, in between work and family.

I hope the trip goes well. Xx

Work is from home so that's great! amazingly dh is physically pretty well so it's quite deceiving knowing what is going on inside which doesn't seem to correlate on the outside!

Looking forward to taking him back home for the week, haven't beem since july 2010 before the quakes (when we moved back) so is going to be surreal and sad as well..

Just hope not too many aftershocks while we are there!

Take care everyone, will check in a week when we are back.!

[Chchgirl]

I'm in NZ now and don't particularly want to come back!

Take care all

[jules363]

So glad you made it over this time Chcgirl!

Have been thinking of every body.

[*Chyloe*]

DH is having his last radiation treatment today. Now just to wait 6 weeks for the CT to see if it has done anything. One thing is he is not having the amount of chronic back pain that he had before the surgery on 29 Feb. Fingers crossed that this is a good sign.

We've had some alone time this week as DH's sister has had the boys since Tuesday and they are coming home tomorrow. I always think I will enjoy the time without them, but must admit to missing them. Will probably change my mind tomorrow when they come home lol.

Hope everyone is doing OK.

[Chchgirl]

So glad you made it over this time Chcgirl!

Have been thinking of every body.

Finally eh! Been having glorious weather over here too!

[KT1978]

Chyloe I guess the natural therapies make him feel in control, and as long as he is still getting medication, then a healthy diet can only help?

Positive must be scary to you because the fear of disappointment.

My dp is the opposite.."whatever will be will be"...he eats fairly well and exercises but doesn't deny himself a glass of wine etc. He thinks more that it's luck if he gets sick again.

He can also be more negative, worries.

I think both approaches have their merits.

[Allymeg69]

Hi everyone, hope you are all doing ok. I am just sitting here in this rainy Sydney weather wondering where the lovely days have gone, and feeling glad I am heading back to Darwin tomorrow.

Chyloe I hope the next few weeks until your DH's scan are not too stressful and that you get good news. I have been wondering in the last few days what would be the best approach to talking to kids (and other loved ones for that matter) about cancer, how "realist" or "positive" one should be, it must be a very hard thing to balance especially with kids. I did find a publications by the Cancer Council called "talking to kids about cancer" which provided some good thoughts.

Chchgirl I hope you have had a great time "over the ditch", that's somewhere we'd love to go, I've been a couple of times but DH hasn't ever, and we know there is some good fishing to be done, not to mention the wines!

Sorry for missing other personals, time has been marching on.

Well that roller coaster I mentioned a couple of weeks back has certainly been in motion for me/us. When I arrived down in Sydney I had some breathing problems and some small areas of collapse and changes had started to show in my lungs. I was more worried about my brain though because there was a question mark over something showing there on CT so going for the MRI was nerve wracking. By the third day of pre-trial tests, my shortness of breath was getting so bad I could hardly walk a few steps without gasping and the docs were telling me that although everything else looked good for me joining the BRAF/MEK trial, including no brain mets, the lung thing was severe and needed urgent attention, and I could not go on the trial because of it.

I was packed off to a lung specialist who ordered every test under the sun to try and work out why I had something that looked like pneumonia and was sending part of my white cell count off the scale. He gave me steroids which were an instant help, and booked me for a bronchoscope the day after Easter. He quite confidently said it would not have any relationship to melanoma. Well, d-day rolled around yesterday seeing him for results, and surprise surprise, my lungs have some sinister little spots, can't be picked up on scans but seen during the scope, and a biopsy of one spot proved it is in fact melanoma. The whole pneumonia thing was my body's fighting response to it. The steroids are keeping the inflammation at bay so I am staying on them, and now it is a matter of waiting just a little longer for approval to be given the BRAF inhibitor on a compassionate basis. Apparently it is a vey effective medication but at this stage there are only fairly short term data available, use in humans has only been happening for about 3 years, a good majority of patients get some disease control for a period of time but then the cancer seems to become resistant and return, I just hope I catch a break and get long enough control to allow other breakthroughs to happen.

So this has ramped things up a notch, although it was clearly well established in a number of lymph nodes. I am feeling a mix of angry, sad and stunned, and have naturally been thinking the worst at times, I am so worried about how my husband and little boy especially are going to cope if I am gone. It hasn't helped that I have been stuck in Sydney and they have been back in Darwin, but I will see them tomorrow, and then I suppose we will want to start thinking about this next phase of our lives and making every day count. I don't want to necessarily call it a bucket list but there will definitely be some important things to plan and enjoy.

Cancer sucks!!!