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#151 Chchgirl

Posted 25 March 2012 - 09:03 PM

Kt, my dh has the portacat thingy in the chest, and always took the bottle home every fortnight. Now he gets the infusion every 6 weeks and takes two weeks of tablets in between, which is what he did in NZ except that was every three weeks..

Hope you are coping well, I know it's not easy at all..

No time tonight for personals but keeping up with all your stories..

#152 KT1978

Posted 03 April 2012 - 01:27 PM

How is everyone?

We are going along well, DP missed his chemo last week (feeling stressed, overwhelmed with work) but went back this morning.  He seems to be less stressed and anxious at the moment.  We've been going for a walk everyday (only 20 minutes) and just focussing on him feeling good.

Only 9 weeks to go I think... Its getting closer!

#153 ~*Lou*~

Posted 03 April 2012 - 08:15 PM

Hi ladies

I went back to work on Monday (only half day) and again tomorrow (also half day). I start 5 wks of radiotherapy on Thursday next week. Op recovery has been much slower than I expected, which is starting to put me off having reconstructive surgery.

Lou xx

#154 *Chyloe*

Posted 04 April 2012 - 10:14 AM

Lou - recovery after surgery has always been pretty crap for my DH.  He is 5 weeks post-op today and is having good and bad days.  The last couple have been bad.  sad.gif  We are still hoping to go away for the long weekend tomorrow after work, but not sure if he can cope with the 3 hour car trip. Will have to wait and see.  Good to see you are going back to work for half days.....hopefully it will help you.  Good luck with your radiotherapy.  DH is just over half-way through his now.

KT - hope your DH is OK, and you too of course.  original.gif

#155 notorico

Posted 05 April 2012 - 06:35 PM

Chyloe - half way through - must be a good feeling, hope it has the desired result.

Lou - so sorry that your recovery is so slow. I hope the radiation goes well.

KT1978 - exercise does wonders to relieve the stress. I haven't been doing enough of it. Good for DH to be focused on feeling better but don't forget about yourself.

Haven't been around for a while - we had a lot to digest after our last appointment. After lots of politics doctors have decided not biopsy. We are in a bit of a stale mate. Surgeons won't operate, oncologists won't proceed without a tissue sample. Surgeons won't consider biopsy until he is more symptomatic. We had another appointment in Melbourne on Monday that doctor believes we are at that point now. We now need to meet with the Sydney team and discuss the Melbourne advice and see what happens.

I haven't been coping well at all. We have had so much on. DS1 constant appointments, DS2 broke his arm and DS3 has been super sensitive. Then today we get the scariest news of all. DD has been complaining of a sore leg for ages, she is very sporting so I put it down to a sports injury. It didn't seem to be getting better so we took her to the doctor two weeks ago - he said nothing wrong. It has been getting worse over the last two weeks - took her again today. The doctor is concerned that she may have a tumour in the bone of her leg. He has arranged a bone scan for first thing Tuesday morning. I don't know how we will get through the weekend with this playing on our minds.

#156 *TikkaB*

Posted 05 April 2012 - 07:45 PM

Lou, you will find the radio a doodle compared to everything else. When I was having mine, I saw lots of suited up women coming and going early in the morning - off to the office. My radio onc. says that the radio you have after breast surgery should not stop you working. I doesn't affect you the way chemo does.

I have just had my check up and I need to go back for more tests next week as some the glands under my left arm are swollen - crossing everything that it's just because I've been feeling unwell and sneezing my head off over the last week. Am I anxious? You better believe it. Had a bit of a cry on the way home.

And I'm supposed to be putting on my 'happy face' tomorrow for the photo shoot about breast cancer survivors.

Angela

#157 KT1978

Posted 06 April 2012 - 08:13 PM

Notorico  sad.gif

I hope it's not what you are thinking.  I'll be thinking of you Tuesday.

Our walking has been good, we take our dogs to the beach and walk the length f it before dinner.  It's time to chat and unwind in the arvo.  Dp is so much better for the fresh air and exercise which is great for me too (his grumpiness is better).

Ange  You sound a bit panicked, it will be ok.  Deep breaths.  original.gif

Dd and I had a great day today, we took our bikes, caught a train to kiama, rode around, got lunch and came home again.  Dp went fishing with mates.  A beautiful sunny day.  Hope everyone is having a good Easter.

Edited by KT1978, 06 April 2012 - 08:14 PM.


#158 Chchgirl

Posted 08 April 2012 - 05:56 PM

Just checking in to see how everyone is, hoping everyone is having as good an easter as possible.

original.gif

#159 KT1978

Posted 08 April 2012 - 09:19 PM

Chchgirl how are you?

I stalked your profile yesterday! biggrin.gif  saw you went away on holiday, I hope you had some nice family time.
What is your family doing over Easter? How has dh been feeling?


Xxx

#160 ~*Lou*~

Posted 09 April 2012 - 08:05 PM

*TikkaB* and notorico ~ I have everything crossed for you both that this week's appts brings reassurance and not further worries hhugs.gif

Lou xxx

#161 Chchgirl

Posted 09 April 2012 - 11:05 PM

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..

#162 KT1978

Posted 10 April 2012 - 06:50 AM

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

#163 *Chyloe*

Posted 10 April 2012 - 09:36 AM

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

Chchgirl - have a good trip away.  original.gif

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???

#164 Chchgirl

Posted 10 April 2012 - 11:09 PM

QUOTE (KT1978 @ 10/04/2012, 06:50 AM) <{POST_SNAPBACK}>
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.!

#165 Chchgirl

Posted 12 April 2012 - 06:59 AM

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

Take care all original.gif

#166 jules363

Posted 13 April 2012 - 06:23 AM

So glad you made it over this time Chcgirl!

Have been thinking of every body.

#167 *Chyloe*

Posted 13 April 2012 - 09:18 AM

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.  original.gif

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.  original.gif

Hope everyone is doing OK.

#168 Chchgirl

Posted 13 April 2012 - 07:29 PM

QUOTE (jules363 @ 13/04/2012, 07:23 AM) <{POST_SNAPBACK}>
So glad you made it over this time Chcgirl!

Have been thinking of every body.



Finally eh! Been having glorious weather over here too!

#169 KT1978

Posted 14 April 2012 - 07:40 PM

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.

#170 Allymeg69

Posted 17 April 2012 - 06:17 PM

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!!!

#171 notorico

Posted 18 April 2012 - 02:50 PM

Allymeg - so sorry to hear what you are going through. It will be so good to be back with your family. I really hope the next news you get is better. Take care.

Chchgirl - glad you we able to make it to NZ.

Chyloe - woohoo to the final radiation treatment. Fingers crossed for the CT scan.

Just a quick update on us - thankfully DD's bone scan showed no tumour (thankfully) so can relax a bit with her - just an infection that antibiotics should clear up. We are sending copies of DS's MRI to the US to a few specialists there with the hope they can shed some light on what can be done.


#172 jules363

Posted 18 April 2012 - 07:15 PM

Allymeg...no words sad.gif

#173 KT1978

Posted 18 April 2012 - 08:00 PM

Allymeg that sounds horrible.  It must be even harder to be away from family while getting treatment.


Jules, how is dh?  All recovered from surgery now?

#174 *Chyloe*

Posted 19 April 2012 - 08:46 AM

Allymeg - you are right, cancer does suck.  sad.gif  I am so sorry to hear your news.  sad.gif  I've also got that book from the Cancer Council about talking to kids about cancer, and found some great info in there on how/what to tell them.  I am still not overly sure that my 8 yo DS "gets it" but we also are just taking it 1 day at a time.  

Notorico - good news for your DD.  Hope the US doctors can give some info about your DS.

Jules - hope your DH is doing ok.

#175 mrsgm

Posted 19 April 2012 - 01:14 PM

Allymeg, I read your post the other day and I haven't really known what to say, but I have thought about it often.  It sounds like a nightmare, and am just so sorry to hear it.  I hope you are back with your family soon and that helps a little, and that you are able to do some nice things with them and are able to enjoy some "moments".  Thinking of you, and hoping you are coping as best you can x


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