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#1 KT1978

Posted 15 December 2011 - 08:12 PM

As requested!  A thread to chat instead of all having our own separate threads.

How is everyone?  We are good, cancer is becoming the new normal like people said it would.  Third round of chemo done, dp has had some side effects (nausea, tiredness) but so far potato chips and 8:30 bedtimes seem to fix it.  He's like a pregnant man.  biggrin.gif

His first break will be two weeks from the 2nd jan... I feel like the first round will fly because we are busy with work, Christmas etc which is good.

#2 jules363

Posted 16 December 2011 - 02:49 PM

Gaz is home, albeit with the dreaded catheter still in situ..  You are right about the man bits shrivelling up, he says they look like a sharpei dog.....I admit it is not a great look, but don't think mens bits are particularly attractive at the best of times!

We watched the dvd they gave us at the hospital about the care etc of the catheter, but don't think they really furnished us with as much knowledge as they could have.  They didn't tell us to change the leg that rubber line is stuck too, for a start, so it was starting to wear at the skin on the leg they had originally put it.  They also didn't supply any strap to strap it down,, so the tube kept twisting inside him, and really hurting.

After night after night of no sleep, and discomfort from the catheter, he finally called the hospital yesterday, and the urology nurse consultant told him to come straight in and get some of these straps.  She shortened the line, and we put the straps on, and last night he had his first full nights sleep since the op.  He was practically hallucinating with sleep only coming in 10 minute fits and bursts..so it did him the world of good.  We managed to get out and about to do some shopping today.  He is quite tired and sore now, but starting to see the light at the end of the tunnel.

He goes in next Thursday to have the catheter removed, and he has to stay at the hospital most of the day, long enough to satisfy them that he can void properly, and he will have the staples out at the same time.  Pretty certain he will feel like a new man, after that.

Kate, it sucks that cancer has to become anyone's new normal sad.gif  I am glad you are finding some sort of rhythm though.   A two week break from chemo should be fantastic!

#3 ~*Lou*~

Posted 16 December 2011 - 06:33 PM

Hello ladies

I have breast cancer, I've had 5 cycles of chemo, with 3 more to go (next one 28th Dec). Then mastectomy, then 5 wks radiation treatment, then reconstructive surgery, and 5 yrs hormone treatment.

Jules - yay that your DH is home, but poor you having to go back for help with the catheter.

Kate - yes, there are definitely some aspects of chemo that resemble morning sickness, only without the potential joy of a baby at the end that makes m/s bearable!

Lou xx

#4 jules363

Posted 16 December 2011 - 08:27 PM

Lou, had a look at twitter, and a bit of a read, even though I don't really understand twitter, lol....

How brave and beautiful you are original.gif

#5 Chchgirl

Posted 18 December 2011 - 08:06 AM

Very good idea for a thread, KT. I think it's a good idea, as you will find as you go on, nobody will really understand what you as a partner will be going through. I'm a veteran of 18 months now, (with dh), and I know I seem matter of a fact and a bit cynical and clinical at times, but that's how it's rolled with me.

Plus I don't want anyone telling me to be positive and giving me hearts and puppies and flowers. I know they mean well, but it makes me cranky lol!

Hence I'm not really good at knowing what to say to others going through similar journeys, so you'll have to be patient with me there!

But KT I am glad to hear dh is home and doing good.

QUOTE (~*Lou*~ @ 16/12/2011, 07:33 PM) <{POST_SNAPBACK}>
Hello ladies

I have breast cancer, I've had 5 cycles of chemo, with 3 more to go (next one 28th Dec). Then mastectomy, then 5 wks radiation treatment, then reconstructive surgery, and 5 yrs hormone treatment.

Jules - yay that your DH is home, but poor you having to go back for help with the catheter.

Kate - yes, there are definitely some aspects of chemo that resemble morning sickness, only without the potential joy of a baby at the end that makes m/s bearable!

Lou xx


Hi Lou,

Good to meet you..original.gif

#6 lezah

Posted 18 December 2011 - 10:47 AM

QUOTE (Chchgirl @ 18/12/2011, 08:06 AM) <{POST_SNAPBACK}>
I don't want anyone telling me to be positive and giving me hearts and puppies and flowers. I know they mean well, but it makes me cranky lol!


ROTFPMSL .... I'm so not a hearts, puppies and flowers girl, either.

Ah - I think I've run into all of you on other threads - Wayne was diagnosed with Multiple Myeloma in September 2007. And while everyone talks of hope and cure and remission, I do have to bite my tongue. MM is treatable but not curable. There's no silver bullet around the corner - just new ways to keep it under control.

Anyway, after our local pharmacist trying all sorts of avenues to get himself registered with all the right federal bodies and suppliers to be able to dispense Revlimid (it's the most expensive drug per dose on the PBS - $6968.50 for a 21 day supply), I tracked down a pharmacy in Brisbane that specializes in dispensing oncology / hematology medications to outpatients.

He started yesterday - so far so good. Also on high dose dexmethazone, which he hates since he reckons it makes his sinuses stuffy and gives him headaches... haven't got the heart to tell him that its probably psychosomatic .... if anything, dex would have the exact opposite effect - he's just associating it with his early chemo and zometa treatments, which gave him a flu like symptoms.

I don't know if its a good thing or a bad thing to be so inquisitive when it comes to understanding his treatment protocols - I think its just one of those side effects of not being in control.


Now. enough about me.....

KT - I hear you about cancer becoming 'normal' to you. Sometimes its overwhelming and other times, you can quite literally 'forget'. I find it hard to explain Wayne's cancer to new people I meet, since my calmness and comfort with his disease can come across as confronting and hard by some. I try and preface statements with "Obviously, I've had a lot longer to get used to this than you...." but I can tell that they're like "How can you be so calm?" .... 11 years of marriage with almost half of them dealing with cancer does that to you.

Jules - I understand why they send people home so quickly, since you're most likely to pick up an infection in hospital than anywhere else ... but with a catheter? Can't say I've ever had to deal with that.

Lou - thanks for popping in. Feel free to give us a voice of reason / first hand experience, if we're being too harsh on our partners. :-)



#7 ~*Lou*~

Posted 18 December 2011 - 06:53 PM

QUOTE
Lou - thanks for popping in. Feel free to give us a voice of reason / first hand experience, if we're being too harsh on our partners. :-)


Good grief no, I was going to ask how I could be a better patient, make it easier on DH (and my family and friends)!

QUOTE
And while everyone talks of hope and cure and remission, I do have to bite my tongue. MM is treatable but not curable. There's no silver bullet around the corner - just new ways to keep it under control.


Yeah I know what you mean, I have "locally advanced" breast cancer but everyone, when i tell them I have BC, say "oh well, they caught it early, thats great" (they ASSUME it was caught early) and I tend to smile and nod, because explaining anything else is just too hard and I don't have the energy.

JULES - how is your DH doing now?

LEZAH - yay for you finding a way to get Revlimid for your DH

CHCHGIRL - yep, I hear you on the hearts and puppies thing too - I'm more practical, if someone wants to help, they can cook my family dinner!

Question - anyone have any experience with Taxetere (think I have spelt that right) - its a chemo drug and I'm really not liking some of the side effects- my first 4 cycles were Fek100 and that was sooo much nicer!

Lou original.gif





#8 KT1978

Posted 18 December 2011 - 07:37 PM

Just had a good weekend away but dp got a speeding ticket on the way home.  blush.gif  he has been busy for work including his first overnight trip since the op this week , so it was good to relax.   We also did something else for the first time in months *ahem*...apparently cancer patients can still do that lol.  Hooray!

Jules at least the cath will be out for Christmas. He will be sore for awhile.

Chchgirl, I hate the "I hate cancer fb status".  I feel like replying instead of making that your status for an hour, come mow my lawn!  biggrin.gif

Glad to meet you Lou.



#9 Chchgirl

Posted 18 December 2011 - 08:35 PM

QUOTE (KT1978 @ 18/12/2011, 08:37 PM) <{POST_SNAPBACK}>
Just had a good weekend away but dp got a speeding ticket on the way home.  blush.gif  he has been busy for work including his first overnight trip since the op this week , so it was good to relax.   We also did something else for the first time in months *ahem*...apparently cancer patients can still do that lol.  Hooray!

Jules at least the cath will be out for Christmas. He will be sore for awhile.

Chchgirl, I hate the "I hate cancer fb status".  I feel like replying instead of making that your status for an hour, come mow my lawn!  biggrin.gif

Glad to meet you Lou.


Lol KT, I refuse to re post those bloody things!


Just a question, does anyone have any ideas on hobbies? I work from home at the moment (although I am looking into buying a business again next year, we want to get out of Sydney, need to do that first), I'm thinking I should do something to take my mind off things...one of my school friends does fantastic painting but I'm not very good at painting, but it made me think I should take something up....

Edited by Chchgirl, 18 December 2011 - 09:13 PM.


#10 muminbusiness

Posted 18 December 2011 - 08:52 PM

Hi all.
My dh has hodgkins lymphoma. He was told on the 2nd September,after many tests including a bone marrow and pet scan that he had it. I remember falling to bits when he rung and told me,he had gone to the appointment expecting to be all fine hence I didn't go with him.
He is currently in hospital as he is neutropenic and has thrush all down his esophagus. He is doing really well in general still doing 12 to 15 hour days at work.
At the start I tended to start making all decisions for him knowing he was really sick,but as he should he got really upset with that so I stopped.
We are nearing the end of  round 4 of becop21 with another 2 round to go. He had a pet scan at the end of round 3 and it showed the cancer was 99% gone:)
Now I'm going to go back and read everyone else's.

#11 Naomi*

Posted 18 December 2011 - 08:55 PM

Hi,

Sorry for intruding I was just wondering if you could answer my question.

I found a lump in my breast Friday night and have an appointment with my GP tomorrow. What sort of tests would I expect to be sent for and what is the waiting time to find out what it actually is???

Thanks
Naomi

#12 KT1978

Posted 19 December 2011 - 07:00 AM

I think it depends on your age, if you are younger they send you for an ultrasound rather than a mammogram.  I had one checked out a few years ago (turned out to be nothing) and needed an ultrasound as I was younger. Results took a day I think.

Good luck with the gp.

#13 KT1978

Posted 19 December 2011 - 07:20 AM

Muminbusiness you spoke about making all the decisions and Jules spoke about her dh getting cranky when she is helping him...maybe this will help?

Dp and I had a huge talk last week about that because I was tying myself in knots trying to help him with things like preparing his colostomy gear, medicines and he was just short with me all the time no matter how much I helped.  I was feeling like his punching bag and worn out.

He told me that when I help him that much "he feels so useless he should just give up and die".  He was getting angry at me because he felt reliant on me. So I've stopped babying him thinking I was "sharing" the burden of all the medical stuff.  He still asks me to help somedays but he is in control of how much help he wants now.  He is also more confident in managing his own gear now where before I did so much he didn't get confident doing it himself.

He also for the first time confessed that he knew he was sick for longer than he told the doctor before he sought help.  The oncologist got it in one when he said "you are never going to leave something that long before you see a doctor again". He spent months terrified and hoping it would go away.  The same months I thought something was really wrong with our relationship because he had no libido, wasn't interested in ttc, distracted etc.  I can't believe he didn't tell me, he is usually so bluntly honest.  I hear this is common with bowel cancer, I imagine prostrate cancer would have a similar embarrassment factor for men, where women are more used to doctors looking down there because of pregnancy etc.

Anyway, this might help someone else.xx

#14 ~*Lou*~

Posted 19 December 2011 - 06:34 PM

Naomi* - KT has already pretty much answered but you will be sent for either ultrasound or mammogram, or maybe both. I'm 36 yrs and they sent me for both. Then depending on results of that, they give you a fine needle aspiration or a core biopsy, and then they do pathology on those.

Hopefully Christmas won't slow down things too much, the waiting is so hard - I was lucky - I saw my GP on a Tuesday morning with lump under my arm, by the end of that day I'd had chest x-ray, blood test and ultrasound, and had appt to see breast surgeon the next day. The Wednesday I saw breast surgeon who looked at my ultrasound films, and sent me straight for mammogram, more ultrasound, fine needle aspiration x 2 and core biopsy x 2. The next day, Thursday, I saw breast surgeon again and she had diagnosis for me - admittedly my father is a breast surgeon too, so I think some strings were pulled for me to be seen so quickly (I don't usually pull strings but in this case, well it was different). Then on the Friday I had bone scan and CT scan of torso, which showed it hadn't spread any further than breast/lymph glands - thank goodness. Needless to say I didn't get to work that week, non stop appts and waiting in waiting rooms! On the Monday I saw the medical oncologist and started chemo 2 weeks afer that.

HTH

Lou original.gif

#15 KT1978

Posted 19 December 2011 - 06:48 PM

Hey Lou, how are you coping with chemo and looking after kids? Were you working before diagnosis? And now?

What's everyone's plan for Christmas? Lou do you have chemo Christmas week?

#16 ~*Lou*~

Posted 19 December 2011 - 08:55 PM

I was working 3 days a week (I'm an accountant, so a desk job)  before i got sick. I have the most fabulous employer who brought back the person who covered my last maternity leave and told me I would keep being paid regardless of how much work i managed, to forget my leave balances etc, so cut a long story short I usually work 2 weeks out of 3. So I have chemo every 3rd Monday, one week in bed, then one week feeling ok-ish, very tired but mostly functioning as usual, then the 3rd week i feel pretty much normal. This week leading up to Christmas is my 3rd week so i feel pretty good, I can enjoy my work Christmas function on Thursday etc. Next chemo is 28th Dec.

I am very lucky that my mum can help so much with the children, plus they are in child care when i work and i have wonderful friends who help a bit too. My work colleagues take turns in filling up my freezer (did i mention I was lucky ....).

My mum actually had breast cancer herself earlier this year, diagnosed June, lumpectomy and then 6 wks radiation therapy and now 5 yrs hormone treatment, her last week of radiation therapy was my first week of first chemo cycle, so she couldn't help with my first cycle but she's been a powerhouse ever since. Also DH is very good, he's clearly got more on his plate now than before! And his employer has been equally good, telling him to take whatever time off he needs - generally he only takes one day off per chemo cycle, around child care days, but we expect he'll take more time off next year when i have 2 x surgery.

I'm heading off to bed now ....

Lou xx

#17 KT1978

Posted 20 December 2011 - 06:53 AM

That's great.  Dps work are great too, he has every Tuesday off.  Plus four weeks after surgery.  At full pay, even though we offered to do it as unpaid leave.

Sounds like your chemo is pretty full on though, dps is not as strong I think, maybe because he had the tumor removed first.  I think breast cancer does have harder chemo regimes than bowel cancer from what I've heard.

I hope you have a wonderful Christmas.  Our next chemo is 28th too...it's nice dp will be at the best part of the cycle for Christmas day.

Jules how's hubby?

#18 jules363

Posted 20 December 2011 - 07:50 PM

He's not too bad, thanks for asking original.gif

We go in Thursday for the catheter removal, and he can't wait.  He has to stay there all day to make sure he can void to their satisfaction, and if he can't, the catheter has to be put back in.  This thought is extremely alarming to him, but the nurse said that it hardly ever happens, so we are holding out for that.  Two more sleeps, until he hopefully feels like a new man.  We are not going to worry about the pathology / clear margins thing until it happens..it seems this year has been filled with worry, enough already!

Will be back in a day or two for a good chat...sorry about no personals tonight, I am totally beat.  What an insane time of year it is!

#19 *Chyloe*

Posted 21 December 2011 - 04:37 PM

Hi.....

Hope I can join in here.

DH has ACC (adrenocortical carcinoma or adrenal cancer).  First appeared in Aug 2007, removed surgically, much larger than thought and originally they did not know what it was....re-occurred in September, 2010 - major surgery again.  No chemo/radiation (he could do mitotane which RBH would have paid for, but DH decided against it with dr's blessing).  High chance of recurrence.  sad.gif  3 monthly ct scans and alternating visits to oncologist/surgeon.  

At the moment he is great.....last visit to oncologist was Monday just gone.  Next ct/mri will be about March next year.

Cancer sucks.

Edited by *Chyloe*, 21 December 2011 - 04:39 PM.


#20 KT1978

Posted 21 December 2011 - 08:33 PM

Hi chyloe,

Sorry to hear about hubby, the "waiting" sounds as stressful as treatment!  Hope you can get your five years up (do they say that with his type of cancer?) and be done with it.

Kate

#21 jules363

Posted 22 December 2011 - 03:13 PM

Hi Chyloe original.gif  I think we were in a due in group together, way back.  With our 8 year olds....were you a due in September?  Doesn't seem that long ago.....I am so sorry you have to be here sad.gif

Good news for us today, Gaz went for his trial of void, and passed with flying colours.  There is some stress incontinence, but overall, much better than we had been led to believe.  I don't think I have ever seen a man happier, since he has had that dreaded catheter out, it really was doing his head in.

I hope everyone gets some good rest, and happy times over the Christmas and New Year period.

#22 Chchgirl

Posted 22 December 2011 - 05:10 PM

Hope everybody has a good weekend, and christmas, and takes your mind off things..distractions really work well!

Sad today though because dh's cousin in NZ passed away today from lung cancer, really had enough of this thing..

#23 *TikkaB*

Posted 22 December 2011 - 07:05 PM

I'm so looking forward to Christmas this year (I had chemo 23rd, 24th and 25th of December last year) so I couldn't eat a thing. My daughter was 7.5 and she wanted the Christmas feast with all the trimmings. I'm making up for last year - and I'm going to eat myself silly.

I've seen my radio onc, surgeon and med onc this week and they were all so happy with my progress, and now I'm down to three monthly instead of every six weeks.

St Vincent De Paul dropped off a laundry basket full of goodies last weekend, so I really don't have to shop for very much other than a fresh chicken and some vegies. I was so surprised when they said that they were bringing over a hamper - they have been so kind to us.

My brother's work gave him a Westfield voucher as a bonus, and he gave it to me to spend, he only asked that I buy an electric shaver for him out of the money.

We are feeling very spoiled - although I did drop $50 dollars today - but I've probably made someone else's day.

#24 *Chyloe*

Posted 22 December 2011 - 10:21 PM

Kate.....Yes, we are in the five year cycle......got to pretty much 3 years to the day last time.  Funnily enough, so many people have said to me that recurrences tend to happen at 3 years, and bugger me down, when DH got sick again last year, the boys' prep teacher's 16 y.o. son had issues again (he and DH were sick at the exact same time in 2007), and also one of the teacher aides - her husband has pancreatic cancer and it was 3 years for him too.  sad.gif

Jules - Yes!!  I was in due in September 2003......I can't believe that those babies are now all 8 years old!!!  Sorry also that we have to meet again in this forum of all places.  sad.gif  Glad to hear that Gaz is doing better, and I am sure DH (Pete) can sympathise with him as regards to the catether....rotten darn things they are.

Hope everyone has a Merry Christmas!  original.gif


#25 Wishing2011

Posted 22 December 2011 - 10:36 PM

Hey ladies not sure if I fit in here. Just reading ur posts took me back to this time 8 years ago. Dh ( who was my boyfriend at the time and only 21) had just had an op to remove testicular cancer. As a partner i did not cope well at all. I cried at the drop of a hat and just had a Sick feeling constantly in my stomach . It wasn't me that was sick but I felt Like he handled it much better than I did. I had chest pains for weeks which I have Learnt now only pops up when I am extremely anxious. And I don't think I could even eat. I was a mess!

You are all so brave but I know you just do what u have to. But you handle it much better than I ever could.

Wishing you all and your partners all the best for a speedy recovery original.gif


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