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So I over did it.

elthia
Posts: 11
Joined: Sep 2013

Well my first chemo session went ok. It took three tries amongst three nurses to access my port, and two of the nurses were highly exeperienced.  One is an old friend I have known for 13 years, and she felt terrible. Thank goodness for EMLA cream, all I felt was pressure, and a teensy bit of pain when there fingers touched the actual incision.   I had a sinus headache from the cytoxan, but it didn't start till the bag was nearly empty, so the nurses said the next time they will slow it down. 

The next day the Neulasta shot went well.  I saw the social worker and got a prescription for a cranial prosthesis, otherwise known as a wig.  My insurance will cover, but the nearest place that is in the plan that will accept the script is about 45 minutes away.  Went shopping with my mother, because she wants me to wear brighter clothes, because it will not make me look so pale.

Felt very hopeful, and we went out to dinner, and ran into an old colleague. Updated him on my progress, laughed and had a great time joking about cutting my hair to look like PINK or Miley Cyrus.

Went home and that night freaked out over a tiny bump by the side of the port that my husband says looks like a tape burn/blister, because my skin is that sensitive. Took a shower, and while getting dressed afterwards, I swear I pulled a stitch.  It hurt so bad I bent over double, let out a small scream, and had tears in my eyes.  Pain went from my port across my breast and into my shoulder.   Laid on the couch, took a norco, and called the advisory nurse.  The norco put me out, and when she called back, she said if the pain was managed to notify the clinic this morning. 

My shoulder and arm are still tender.  It feels like it did the DAY OF the port surgery.  Hubby blames it on my carrying and lifting too much at work, and dressing too quickly.  He also says I need to quit doing housework. 

I am trying hard to keep up the good spirits.  But the shoulder pain just brought the seriousness of it all crashing down again.  I am sick, and this isn't the first time. But it is the most serious.  I have had bulging disks in my neck, I have had severe migraines that I have been hospitalized over multiple times, I had severe endometriosis that left me incompacitated.  I beat all that, I can beat this.  I was happier and healthier than I had been in a long time.  I am going to get that back.  I just hate feeling dependent again.

eihtak
Posts: 870
Joined: Oct 2011

It took me a long time to realize it, but all things in life have their place and time.......this is your time to be "dependent." Let others help you now so that you will be position to pay it forward later.

Love the term "cranial prosthesis".......... thanks for making me smile today!

Hoping your day goes well.

fauxma's picture
fauxma
Posts: 3542
Joined: Dec 2008

Elthia,

I would try to put it this way in your mind.  If you overdo things then your loved ones may end up having to do even more for you.  But if you let them help with housework, heavy lifting and taking some of your burdens on then you can do what you feel comfortable handling and you will share the jobs with them.  Perhaps after your port heals more it will hurt less.  I did not have chemo but my sister did and she needed more help than I did.  She also had a mastectomy and I had lumpectomies.  I took her hat and scarf shopping and even bough her a couple new outfits to brighten her day.  She did well with her chemo and both of us have been NED (no evidence of disease) for 5 years. 

My best advice is be kind to yourself and ask yourself what would you do to help a loved one or close friend through this.  Then graciously and gratefully accept that help from them.  You don't need to be superwoman to battle this dreadful dissease.  Form a team of super heroes with your friends and family and fight this together.  There is power in numbers.   And honestly it lets them feel they are doing something proactive in your care.  It is okay to ask for what you need or want.  Fixing a meal, cleaning the house, getting groceries, help at work,  a ride or company for chemo, etc.  You choose what you want just don't feel you have to do it all.  This battle isn't won overnight and it helps to have people in your corner.  And choose those people.  If someone is toxic or just not the right fit, tell them nicely that you have enough help right now and that you will call if you need them.  This is all just my opinion but I remember needing to do some of the directing in what I wanted or needed.  I liked that my mom went with me to rads for my uterine cancer but didn't feel I needed a buddy for the breast cancer.  Took my hubby to the first appointments so he knew what our game plan was but didn't have him take off work to go to check ups.  Had a good friend who brought dinners by after surgeries cause she knew what we liked and didn't like.  My hubby did the heavy housework and laundry and did dishes and light stuff.  I worked during both my rads but napped when I could and went to bed early. 

Others will chime in and some will have other ideas.  Use what works and you will find the best path for your journey. 

I will keep you in my thoughts and prayers.

Stef

elthia
Posts: 11
Joined: Sep 2013

The port feels better today, the clinic had me go in and have it looked at under fluoroscopy. Everything is in the right place, it is just a pulled stitch.

 

I must just get better at pacing myself. I still have a lot of denial to get through, it is just hard to admit it.

disneyfan2008
Posts: 5451
Joined: Oct 2010

IT is so EASY to over do it...we think we can do anything and everything-don't beat yourself up but try to take things easy as you can and be comfortable.

 

Denise

Cricket64
Posts: 63
Joined: Sep 2013

This cancer journey is just simply difficult.  Gather up your support system, ask, and ask again for help dealing with all this stuff from both your professional and personal support team.  Vent, rage, cry when you need to, and sometimes, allow youself to pretend that you aren't walking this journey.

VickiSam's picture
VickiSam
Posts: 8342
Joined: Aug 2009

I 2nd that ... 

 

 

Vicki Sam

32wig
Posts: 4
Joined: Sep 2013

Hi Elthia

 

I have a port too. The initial surgery was no small thing, was it? My little boy has accidentally smacked my port a couple of times and MY GOD does it hurt! the pain lasts for a while after - so I can only imagine what you must have done to have it hurt that much for that long. Take it easy - respect the port!!

I do something similar with my lymph-cleared underarm. I reach around behind me in the car to give my daughter something and then get my arm trapped by head-rest - thus stretching the underarm too far. Hurts like hell and I've done it stupidly twice! My chemo-fogged brain doesnt help to remember the important things like - don't do that thing in the car which hurts your arm!

We're all dependent in some way or other - whether you have cancer / illness or not. 

I hope you feel good again soon.

ps. if the neulasta shot gives you bone ache in about 5 days time (starts out like a mild back ache and turns into the 'throbbing skeleton' requiring something really strong like oxycodone to deal with it) there is a little trick I learned on a forum and ran past my onc who agreed to try it. Take Clarityn (anti-histamine) the day before the Neulasta shot and every day until say, day 7 or beyond, and the most you will get is a little back ache. Hope you don't need it - but if you do, that's something you can talk to your onc about.

xx

elthia
Posts: 11
Joined: Sep 2013

I did take claritin with the neulasta and it helped.

 

However the "blister" on the side of my port was actually where my body was rejecting an absorbable suture and pushing it out of my skin.  It got to the point where it felt like I had glass in my wound until it poked through and then my husband was able to cut it off (per my surgeon's advice). About a day after that everything felt much better.

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