[KT1978]

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.

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.

[jules363]

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 I am glad you are finding some sort of rhythm though. A two week break from chemo should be fantastic!

[~*Lou*~]

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

[jules363]

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

[Chchgirl]

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.

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..

[lezah]

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. :-)

[~*Lou*~]

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)!

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

[KT1978]

Just had a good weekend away but dp got a speeding ticket on the way home. 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!

Glad to meet you Lou.

[Chchgirl]

Just had a good weekend away but dp got a speeding ticket on the way home. 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!

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....

This post has been edited by Chchgirl: 18/12/2011, 09:13 PM

[muminbusiness]

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.