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What cancer patients, their families, and caregivers need to know about COVID-19.

Back home-update

Jenner86's picture
Jenner86
Posts: 13
Joined: Jul 2013

Hi everyone!

tonight is my first night home after surgery.  The whole thing seems like it went by so quickly..although,  boring nights in the hospital were a little slow.

Here's what I Have observed.:

1) although Mass General is a wonderful hospiial, I'm very glad to be home.  I think it's easy to fall into "patient mentality".  I found myself being scared to go home because I wasn't "ready", wasnt "feeling well", needed "more time". It's best to go home.  I felt 10 times better when I was in my own house.

 

2) feeling cautiously optimistic about future.  Apparently the Doc said that the Mass was "clear cell" and contained, which I'm being told is a good thing. 

 

3) feeling puffier than I think I should... Hoping the swelling in my stomach area goes down soon.  For those of you who have done this before, how long does it take to have a semi normal stomach? And how long until I will be able to get up from the sofa without help?

 

i want to thank all of the great people here who REALLY helped me 'pre-surgery'. I wouldn't have been as prepared as I was without your wise advice!

 

jen.

 

 

Texas_wedge's picture
Texas_wedge
Posts: 2799
Joined: Nov 2011

Very good to hear, Jen.  You looked for advice, got some here, listened to it and followed it and it seems to have worked out fine.  Already you're passing helpful counsel on to the patients just about to go in!

As long as it really isn't too soon, we do feel much better when we're at home, don't we!   You'll get much more information in a few days time, in your pathology report but you've already had the excellent news that the tumor was contained.

The tummy puff will probably subside steadily over the next few days but we are all different and our ops vary widely too, some having a lot of gas pumped into the cavity to give more space for the surgeon to work in, so it's impossible to predict precisely.  The same applies to the sofa question, except that that will probably become easier very soon - it's amazing how we develop skills for manouevering ourselves around to make such tasks less awkward and you'll maybe figure out how to locate things you can lean on, or pull against, to make getting up easier. Once you're able to make bold, fluent moves it becomes a cinch - it's so much trickier and more daunting while yuou're still moving slowly, bit by bit, and getting stuck in awkward positions.

The useful information we all pass on to our successors is that, as long as things go normally, each day is better than the day before and in a week or so you'll be feeling very much more like your normal self.  Two keys are to make sure you have plenty of fluid intake (and water is always the best drink) and that you try to do a bit of walking as soon as you can - the more you can manage, the quicker and better you'll heal up, so long as you don't overdo it (and I imagine there's not much risk of that for you for a little while yet).

Get well soon and keep us posted on your progress.

[PS  - you may want to compare notes and possible tips with LuckyDucky who is having the same problem as you right now.]

GSRon's picture
GSRon
Posts: 1304
Joined: Jan 2013

Hi Jenn... nice to hear you are home.. and the deed is done..!   We are all a bit different.. some people heal up faster than others.. be patient, it takes time...

Be Well All..!

Ron

garym's picture
garym
Posts: 1651
Joined: Nov 2009

You've passed the required initiation and may proudly display your badge of scars!  Remember walking and water, they kelp the recivery process, you'll be back to your ole self in no time.

Texas_wedge's picture
Texas_wedge
Posts: 2799
Joined: Nov 2011

Gary - "they kelp the recivery process" - that's Darron talk!  But, I think you don't have his excuse (mobile predictive text) - looks like you need to turn your engineer's eye on your keyboard design!

One time I was collecting some particularly hilarious examples of predictive text - took over from the old 'machine translation' game (e.g. the apocryphal M. T. of a Russian engineering study with its mysterious references to 'water sheep' which was its best attempt at translating 'hydraulic rams').  I lost track of those examples - does anyone know of a collection of really funny bits of failed predictive text?

garym's picture
garym
Posts: 1651
Joined: Nov 2009

My excuse is fingers with a mind of their own, besides kelp grows in water so its not to big a stretch Smile

Darron's picture
Darron
Posts: 310
Joined: Jun 2013

Well, I am honored that my comments are memorable, even if in the wrong way :)

I don't have your translation from Russion info, but at one point, I was an ex-pat working in Mexico. In a welcome speach I was giving at Thanksgiving (it was in our honor, since we were the only US citizens at the language school) I called my host family mama "the best woman eater in all of Cuernavaca"....and yes, there is apparently a sexual connotation in Spanish there.

To eat - comer

to cook - cocinar

....so I am no stranger to a slip of the tongue. Hope Ann or Michael reads this one and laughs a stitch right out of her incision.

All dood crumb the G man!  :)

anmazon
Posts: 144
Joined: Jun 2013

The best woman eater in all of Cuernavaca!

I'm having trouble with ENGLISH these days. It's been raining like crazy in Albuquerque (hurricane force winds Friday noght-94 mph),  and, observing a really large pool of standing water, told my brother that someone was going to get key lime disease (I was thinking West Nile Virus).

Glad you're home, Jenn!

Annie

Darron's picture
Darron
Posts: 310
Joined: Jun 2013

Great to hear you are back home and well in your way to full recovery.

On point #1, had the exact feeling. I think I mentioned being scared to ride in the car, basically the same thing. You will be amazed how much better you feel every day. Take baby steps every day and you will be amazed how quickly you are back to normal and the surgery will seem like just a memory.

on #2- contained is great, sounds like they got clear margins (look for that in the detailed report). i won't comment on clear cell, it is the most common, but my knowledge in the technical side isn't strong enough to comment.

on #3- I am either still A little puffy, or the incision is making my body fat lay a little different around my waist. I Lost up to 25 lbs post surgery and have gained about 12 back. I am not overweight, but have never had six pack abs. I am thinner in the abdomen due to the weight loss, but I am not symmetrical. I puff a little on the surgery side above the scar ( also hand assist laparoscopic)

You'll be 100% in no time, slow and steady wins your race.

shoet walks and lots of water!

-Darron

DonMiller's picture
DonMiller
Posts: 109
Joined: Feb 2013

It is great to hear you are home.  I think it makes it a little easier that although you are in a lot of pain you feel a little better every day.

The people on the Board cracked me up this morning because it is so true that you develop little tricks of moving around in the first weeks.  I noticed that even this morning I got out of the car by bracing my arms on both sides of the door and pushing myself up and out.  I started it a year ago so I wouldn’t move my stomach muscles and I guess it’s now a lifetime habit.

I really think it is important to walk as much as you can.  I used my iPhone and really blasted old time rock & roll which so some reason kept my mind off the pain and improved my mood……..the kind of music that sooths the soul.

 

I admit it started to annoy me that everyone was being nice to me.  It gets old pretty quick………but at least in my family that ended in a few weeks and everything was back to normal.

Djinnie's picture
Djinnie
Posts: 945
Joined: Apr 2013

Hi Jen, I am glad to hear you are back home and everything went well. All you need now is patience and and rest. Getting out of chairs and sofa's reminded me of being heavily pregnant, very difficult. You will find that a lot easier after the first few days though.

The swelling in the stomach takes a while to clear. I found sitting upright very difficult for several weeks. I was better in a recliner, I also used to recline the car seat to alleviate pressure. I had six incisions from the robotic surgery, and so a lot of tissue and muscle had to slowly heal. It took me about 4 weeks before I was anywhere near normal. Although, I still have a small pouch under my right rib where a major muscle was cut. 

When you feel up to it try doing some deep breathing exercises, it will be difficult at first but it will help. Also gently massaging warm oils such as wintergreen or organic castor oil over the swelling,then place a covered heating pad or warm water bottle over the top helps a lot. As has been recommended already a gentle walk everyday is a must, don't push yourself too much at first, just listen to your body. 

You may find that you will need to take constant naps, your body may feel very fatigued for a time. Don't be alarmed by that it is normal, it will take a little while before your body recovers on every level, which is to be expected.

All the best

 

Djinnie x

anmazon
Posts: 144
Joined: Jun 2013

Stay hydrated, walk a little bit every day and it will get easier every day.  I'm almost two months out, still not 100 percent but doing pretty well--better AMD stronger every day.

Annie

LuckyDucky
Posts: 8
Joined: Jul 2013

Hi Jen!  Nice to be home huh?  I felt the same way as you, not sure if I was ready to go home or not, but home is the best place.  I read your comment under my post...yes to leave the hospital looking and feeling pregnant..oh joy! lol   Like you, I am pretty impatient to lose the bloat.  I look to be about three months along now...but it is just starting to come down, it was worse.  I have been told by many to walk and drink water, that's the biggest thing.  I don't think there is any "magical" cure for the bloat.  If there was, I would have found it.  Water, walking and time...doesn't work at warp speed, but I guess we will learn patience.  I hope yours falls off faster than mine has for your sake! 

Just don't push yourself too hard to get back into things....I am two and half weeks out now, and I just got to the point where I can get in and out of my own bed.  Takes a while to get off the couch alone too...remember your tummy muscles are not the same.  I put two pillows behind me so I am more forward on the couch, easier to push up on your own when you are ready. 

I was told mine was cystic renal cell carcinoma...but like yours, was contained to one area so that should be it!  Take it easy and best of luck on a speedy recovery!Smile

TillieSOK's picture
TillieSOK
Posts: 252
Joined: Jul 2013

And along with the " post pregnancy jello belly", you will have gas!  Ummmm, maybe I should have said G.A.S.!!!!  I am three months out from surgery and still have some jello belly bloat, but it's getting better....I only look 11 weeks pregnant now! ;). I've been eating large amounts of vegetables and fruit, and apparently veggies cause gas as much as the surgical procedure did.  I think KC patients could possibly solve the world energy crisis, if we all got together and "pooled" our natural resources.

Hang in there.  You will do great and be getting up and down out the chair easily in no time.  I took a 3000 mile trip, by car, 3 weeks post surgery....slept a lot amid pillows....but it helped me navigate getting up and down as we stopped every hour so I could rest and walk around. (Had to make the trip!  Our son, a USAF Lt. Col. was getting his first command!  HAD to be there!)

icemantoo's picture
icemantoo
Posts: 3242
Joined: Jan 2010

Jenn,

 

That did not hurt, did it?

In another month you won"t even remembe the pain. Yea.

Well maybe in 10 years you won't remember the pain. Now that's a possibility.

In all seriousness each day gets a little better. Soon you will be wearing that new bikini.

Do what you can each day. Each day should get a little better.

You will heal. Soon you will laugh about it.

 

Icemantoo

 

GSRon's picture
GSRon
Posts: 1304
Joined: Jan 2013

OK, no surprize.. after my surgery, I was a bit blown up everywhere... and on the first day, I thought it was B.M. time.. wrong.. just gas.. well.. I tried to get the Nurse to leave the room..  No way, she said.. "Let er rip.."   So I did.. then she said.. "is that all ya got.."  OK, game on... needless to say.. It helped me feel better faster.. well that is my story and I am sticking to it...   Relieving the gas only fixed part of it all... but, it felt good to me..!!

You will heal up.. and that is a great thing..!!

Ron

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