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Port leak... sigh...

Re: Port leak... sigh...

Posted by Janegj on Apr 2, 2019 7:42 am

Christine, I am so very sorry that you are having to endure all of this. I cannot add anything more to the advice than others have already contributed, but I wish you all the very best on your journey and look forward to hearing of your progress.
In the meantime, think about changing your mantra to "I'm a horse, I'm a horse, I'm a horse."
Much love and support to you.
Jane

Re: Port leak... sigh...

Posted by Gabriel on Apr 2, 2019 8:56 am

Haven't had an issue at the clinic but the end cap on the tubing from my port came off, while I was wearing my bottle. I was out riding in my side by side, with my two grand children, at the time and of all things, wearing a red tee shirt. I didn't notice but my granddaughter did. By stomach was covered with a chemo/blood mixture. Luckily there was a stream by the trail. I closed of the clasps on the tubing and washed myself and my tee shirt in the stream. Then I washed down the side by side seating, as I was telling my grandchildren that everything was okay. I have a spill kit but keep it in the truck. Lesson learned.

The nursing station was closer than my home so I headed there and the nurse panicked a bit. I was her first spill. I called my wife for a fresh change of clothing and she panicked. However me and the grandchildren were calm as could be.  

I must have dealt with the spill quickly enough as there were no issues with my skin afterward.

Now whenever I leave the Cancer Clinic I always check that all the fittings are tight. And as a precaution, I try not to do silly things while I am on chemo. 

Have a Great Day
Charles

 

Re: Port leak... sigh...

Posted by ChristineH on Apr 2, 2019 11:23 am

Janegj‍, hahahahaha! I’m afraid it’s a bit late for the horse mantra to have effect on me. But I’ll try to get my adult children on it, they very much take after me but it might not be too late for them yet!

Gabriel‍, good on you and the little ones for remaining calm! Things always go much better that way. I’m happy there was no apparent side effects for you :)

My leak was a bit different being an internal one, while chemo was being administered. 

Thank you all for the ongoing support!
“Never a horse, always a zebra”

Re: Port leak... sigh...

Posted by ChristineH on May 2, 2019 4:48 pm

Well, I guess it’s time for another update, in case someone else ever gets this and searches it out. 

I’m still at a standstill. I’ve been at a standstill for 3 months. My eschar doesn’t appear to be changing. It’s as big as it was (we measure it). The redness around it makes various patterns (hey, I have to be entertained by something, right?). The swelling has diminished a bit. Three months later I can finally wear a bra for a couple of hours per day. I’m still on percocets and I’ve managed to lower the dose a bit. I’m taking about 30% less then at the beginning. 

The doctors are still at a loss for words. Every doctor or nurse tells me how sorry they are that this happened. Unfortunately, it doesn’t make it heal faster. 

As I see it, the problem is not the pain, not the lack of stamina, not the fact that I’m stuck home. The problem is that the burn takes so much energy to heal itself that I can’t get chemo before the burn has resolved itself. From what I read in medical books, it would take years for a 3rd/4th degree burn to heal itself. I have an active cancer that has so far responded well to chemo. I need to get back to chemo. The oncologists and plastic surgeons are eager to get me back on chemo. I’m starting to see that the resolution is probably going to involve  surgery to remove the burnt parts. And since, as the plastic surgeon says, if they take it out, there’s nothing to put back in, I’m hoping that they’ll be able to remove the bad parts and just do a breast reduction to close up everything. I haven’t talked to them about that yet as I’ve just come to that conclusion. 

That’s the point I’m at. My moral is overall good, but some days are harder. Hopefully, the nice weather will get here soon! The birds chirping always make me smile 😀

Christine 
“Never a horse, always a zebra”

Re: Port leak... sigh...

Posted by Lianne_adminCCS on May 2, 2019 5:46 pm

ChristineH‍ 
Thank you for the update though I am sorry to hear you are still dealing with this. I can't imagine how frustrating and disappointing this must be. At least there are a couple of wins with the diminished swelling and decrease in pain med need.

When do you see your doctor next?

Lianne

Re: Port leak... sigh...

Posted by ChristineH on May 2, 2019 9:07 pm

Thank you Lianne_adminCCS‍. I see the oncologists next Thursday. 
“Never a horse, always a zebra”

Re: Port leak... sigh...

Posted by Kims1961 on May 3, 2019 12:28 am

ChristineH‍    Thank you for the update - i had been wondering how the healing is going.  I'm glad you get to see the doctor next week - I wonder if they can give any time frames? Your attitude is so amazing.  Thank you for keeping us in your loop.  Kim

Re: Port leak... sigh...

Posted by ChristineH on May 3, 2019 3:58 pm

Hi Kims1961‍,

I see the oncologists every two weeks. And I see the plastic surgeon as necessary (sometimes once a week, sometimes once a month). 

What’s frustrating is that every single dr or nurse I’ve met has never seen this in their lives. So, there’s no timeframe. At the beginning I was told “at least a few weeks”. A month into it the eschar showed up and I started to hear “a couple of months”. Now I simply hear “months”.

I’ve recently asked to see a burn expert. I’m at Juravinski in Hamilton and there’s a burn center in Hamilton. I know the drs there are plastic surgeons but they deal with burns on a day to day basis. So, they might have info/experience to share. 


Christine 😀
“Never a horse, always a zebra”

Re: Port leak... sigh...

Posted by Essjay on May 3, 2019 4:11 pm

Oh my ChristineH‍  I am so sorry you are going through this.

a friend has been having a terrible time with a mastectomy scar that won’t heal, a massive void and an oozing hole. After months of trying everything they have decided to do a reconstruction taking out the dead skin and replacing it with tissue from her back. Sounds like you need some pretty serious surgery so that you can move on with your treatment. 

You are are so strong and a great advocate for yourself - I hope they are listening xx

Re: Port leak... sigh...

Posted by ChristineH on May 19, 2019 9:33 am

Ah, and we have a new development!!! Not the one I’d like thought. FYI, this post might be a little gross.

The eschar is still there, the pain is still there and the lack of energy is still there. But now, I’ve developed an infection somewhere “underneath” the eschar. How do I know? Well, a section about one inch long has become detached from the skin and pus is oozing out of there. I managed to track down someone to look at me on Friday (of the long weekend) and to prescribe some antibiotics. I’m getting good at this. I was able to tell her “I need 500mg of K-flex, 4 times per day, for 7 days, and reassess”. She was good, she laughed. 

I already have an appointment with the plastic surgeon this coming Tuesday, so that’s handy. 

Isn’t life entertaining? LoL!!!

I hope everyone is having a great long weekend!!! 😀


Christine 
 
“Never a horse, always a zebra”

Re: Port leak... Great news!

Posted by ChristineH on May 22, 2019 10:18 am

I received two different pieces of news yesterday. I’m sure one aided the other. 

First, my scan results. It was to be expected, being off chemo for more than three months. All my lymph nodes have swollen back up to where they were before I started treatments. 

Second, when the plastic surgeon heard that, he offered surgery on an urgent/on-call basis. He’s going to remove the burnt area from my breast (he marked an area of 11x6 inches) and do the reconstruction with a latissimus dorsi. I signed the consent form on the spot. 

Now, the waiting game starts. I’m so looking forward to not being in pain anymore. And in a weird way, looking forward to resuming treatments.

Yay!!!


Christine


 
“Never a horse, always a zebra”

Re: Port leak... sigh...

Posted by Lacey_adminCCS on May 22, 2019 10:22 am

ChristineH‍ 

Great to hear that things are moving again and getting back on track. Not being in pain anymore is a great benefit to look forward to.

You have been a trooper through this whole experience with such a positive attitude. Fingers crossed that you get a date soon.

Take Care,
Lacey

Re: Port leak... sigh...

Posted by Lianne_adminCCS on May 22, 2019 7:02 pm

ChristineH‍ 

Sorry to hear about the infection but had to chuckle a little about your new found medical knowledge ;)

I am happy to hear that there is a plan in place to keep you moving forward and I will be crossing my fingers for a surgery date sooner than later.

Thanks for the update

Lianne

Re: Port leak... sigh...

Posted by Kims1961 on May 22, 2019 10:02 pm

ChristineH‍ So great to hear from you!  I've been wondering how you are doing.  Your spirit and attitude continues to inspire me.

You are so right - treatments are going to be so much better than the pain you have endured and the waiting.....

We are here for you and thinking of you.

Kim

PS - I also love watching and listening to the birds - bird therapy!

Re: Port leak... sigh...

Posted by Essjay on May 23, 2019 7:25 am

Hi ChristineH‍ Glad to hear from you! And I’m glad things are moving, finally, on dealing with the damage to you. Fingers crossed the plastic surgery happens quickly and goes smoothly so that you can get on with the rest of your treatment.

best wishes Essjay