Jump to content

Cancer support
General chat


  • Please log in to reply
507 replies to this topic

#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 Ragdoll*Lover

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 Ragdoll*Lover

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 Ragdoll*Lover

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 Ragdoll*Lover

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


2 user(s) are reading this topic

0 members, 2 guests, 0 anonymous users

 

The day my daughter almost drowned

We had six adults standing there, so I felt like I could relax a bit. After all, what could go wrong with so much supervision?

Sydney siege survivor names baby after victim Katrina Dawson

A Sydney barrister who survived the Lindt cafe siege has named her newborn daughter after her best friend who died in the tragedy.

Banishing bloat

How to avoid a bloated tummy

Here are some foods to eat in order to escape feeling ghastly and gassy.

The great new picture book for anxious kids

My son is a worrier by nature. I learnt long ago that it was completely pointless to say to him "Don't worry about it!".

Budget stripped more than $15b from families

The combined impact of the two budgets for low and middle income people was "devastating", new analysis by the Australian Council of Social Service shows.

Pregnant women urged to get flu shots

As the winter chill starts to arrive, NSW Health is urging pregnant women to get their flu shots.

65-year-old gives birth to quadruplets

A 65-year-old German woman, who already has 13 children, has given birth to quadruplets.

What you need to know about pregnancy and health insurance

It's not just waiting periods that couples need to consider - there are other factors to consider when thinking about health insurance.

Yummy mummy

Nicole Trunfio breastfeeds baby on Elle magazine cover

Australian model Nicole Trunfio has taken the concept of multitasking to a fashionable new level for Elle Australia.

Warnings after baby girl died while sleeping in bouncer

Parents have been warned about the dangers of letting babies sleep in bouncers and swings following the death of a three-month-old girl.

Coping with fatigue as a parent

Sleep deprivation is a real hazard of caring for a baby. But there are ways to manage the challenges of fatigue better.

A very 21st century issue: parents, parks and smart phones

It's not all the parents, and it's not all the time, but there is often at least one doing it. And sometimes, that 'one' is me.

Appliances

Faulty washing machines linked to house fires

More than 80,000 faulty Samsung washing machines pose a fire threat in homes throughout Australia despite a nationwide recall of the machines.

'I had a lotus birth and I loved it'

Lotus birthing is not all that common, but for a number of women it feels like the most natural thing to do.

7 things you might not know about postnatal depression

Despite its widespread nature, there is still a great amount of mystery surrounding PND - and it's important to try unravelling as much of that as we can.

Is your family's car part of the world's biggest safety recall?

More than 50 million vehicles recalled for potentially lethal airbag fault - is your car affected?

Why drinking water can be deadly for babies

H2O is one of the necessities of life, but for babies a seemingly harmless amount of water can be fatal.

Mother-in-law faceplants during proposal

He had it all planned: a romantic proposal on a windswept beach. The whole family would be there so they'd all be able to celebrate the joyous moment together.

A preschooler suddenly goes mute - and it's not just shyness

When our son stopped talking, our sense of loss was painful and acute.

The mums who ask for a 'wife bonus'

They run their homes like domestic CEOs and work tirelessly to improve their family's social standing. And now, according to a new book, they want an annual perk from their husbands.

Woman shares photo of dimple on breast to warn others of cancer risk

A widely-shared Facebook photograph of a British woman's breast has raised awareness of a more subtle breast cancer symptom.

Starting a family despite a low sperm count

"I'd never really failed a test - how could I fail this particularly manly test?"

It's official: we must better protect our kids from toxic lead exposure

New guidelines have been released, aimed at reducing children's harmful exposure to lead. But they still don't go far enough.

Trouble-shooting toddler social skills

Chances are your toddler's behaviour is all completely normal - but here's how to tackle some common social problems.

Helping your first-born welcome a sibling

We did sigh with joy at the arrival of a royal princess - but, mostly, we sighed with pity at the sight of Prince George being taken to meet her.

Farewell, daytime nap

I've been in denial and I'm not too proud to beg, but it appears I must accept the fact that you have gone. I need to let you go.

The identical triplets who are one in 50 million

The father of identical triplets born in a Texas hospital says his three daughters, including conjoined twins, are "a miracle" sent by God.

Seven questions you should be asking about your health cover

If the last time you assessed your health cover was five years ago, there?s a chance it may no longer suit your needs. To ensure it?s still right for your family, click here for seven questions to ask.

 
Advertisement
 
Advertisement
 
 
 

What's hot on EB

How to use gas effectively in labour

Many women in labour don't use gas effectively and suffer more side effects than benefits. Here's how to get the most out of this pain relief option.

'He has gastro but that's okay, right?': sick kid etiquette

We cannot place all children who are sick in a bubble till they recover, but we can give other parents a choice about exposing their kids to them.

Welcome to Winter

Now that the colder months are here, Essential Baby as all the information you need for staying healthy and happy during the chilly season.

Ada Nicodemou: 'I can never be completely happy again'

Home and Away actress Ada Nicodemou has opened up about the loss of her stillborn baby.

10 things to consider when you're thinking about trying for a baby

Before you start tracking your menstrual cycle and reading up on the best positions to get pregnant, there are a few other things you may want to consider.

How special surgery and IVF can create a post-vasectomy baby

Cricket legend Glenn McGrath and his second wife Sara are expecting their first child together, thanks to IVF and a delicate surgical sperm retrieval process that helped the couple to conceive.

Belle Gibson's mother 'disgusted and embarrassed'

The mother of disgraced wellness blogger Belle Gibson has accused her daughter of lying about her childhood in an attempt to garner public sympathy.

Doctor's mobile phone 'left inside c-section mum'

A new mum claims a doctor left his mobile phone inside her after delivering her baby via caesarean section.

I'm a mum and I'm following my dreams

I want my kids to know that no matter what happens in life, you can still be who it is that you've always wanted to be.

Those first daycare days

I had this innate 'mum' moment the other day.

'If one person had listened, my life would have been so different'

Katherine's father will die in prison for the horrifying sexual abuse of his daughter. Yet she is the one with the true life sentence.

This new plan undermines breastfeeding and baby health at everyone's expense

Mothers, babies, the health system and the wider society are going to pay the price of this new budget.

Couple to celebrate terminally ill baby's birthday in unique way

Baby Jai Bishop has lived at Starship Hospital for the past seven months, with his parents flying back and forth from Hokitika, 1100km away, to be by his side.

Life On Mars

It's men who need 'retraining', not women

We are all responsible for our own behaviour. Telling victims to harden up is wrong.

Baby Gammy's dad tries to claim charity money

The biological father of baby Gammy has reportedly tried to access charity money raised for the little boy's medical costs.

Where are the childcare places?

It?s all very well to encourage women to work if they choose to, but how can the measures lead to increased workforce participation when women are once again left holding the baby?

The pain of not having babies and not knowing why

After seven years of wishing, hoping, crying, punching pillows and shouting "why me?!", the end result is more than I ever thought possible.

Getting your family finances in order

Whether you're after a new car for a growing family, a bigger house, or are just fixing up your finances, here are the basics on borrowing.

Mum shares graphic selfie to warn against tanning

A mum has shared a graphic photo of her skin cancer treatment as a warning to others.

Does parenthood make us happier?

We can certainly gain higher levels of happiness when we become parents, but the trick is to not get overwhelmed by the pressures of raising our kids.

No, having a dog is not like having a human child

It's obvious these people dote on their pets, but they're barking up the wrong tree.

 

Top baby names

Baby Names

The numbers are in and we can now bring you the 2014 top baby name list for Australia.

 
Advertisement
 
 
Essential Baby and Essential Kids is the place to find parenting information and parenting support relating to conception, pregnancy, birth, babies, toddlers, kids, maternity, family budgeting, family travel, nutrition and wellbeing, family entertainment, kids entertainment, tips for the family home, child-friendly recipes and parenting. Try our pregnancy due date calculator to determine your due date, or our ovulation calculator to predict ovulation and your fertile period. Our pregnancy week by week guide shows your baby's stages of development. Access our very active mum's discussion groups in the Essential Baby forums or the Essential Kids forums to talk to mums about conception, pregnancy, birth, babies, toddlers, kids and parenting lifestyle. Essential Baby also offers a baby names database of more than 22,000 baby names, popular baby names, boys' names, girls' names and baby names advice in our baby names forum. Essential Kids features a range of free printable worksheets for kids from preschool years through to primary school years. For the latest baby clothes, maternity clothes, maternity accessories, toddler products, kids toys and kids clothing, breastfeeding and other parenting resources, check out Essential Baby and Essential Kids.