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My young caregivers

bspangler47's picture
Posts: 145
Joined: Sep 2010

Since being told I had Colorectal CA stage back on 16 Jan 2009, my 2 young children have been there thru think and thin.  They seen me go thru several surgeries, come home with a feeding tube, seen me with a ilescompty (sp), dressing changes, being connected to TPN via PICC lines, more then once, several times.  I am in remission now but I do wear diapers on a every day basis.  We did go on our first outing last yr Labor Day Weekend we went about 2 to 3 hrs away from where we lived.  We enjoyed ourselves, of course since I no longer can control my bowel movement I had a few accidents on the road trip that I had to pull over on the road and change myself etc.  They were there for me.    We have cried, screamed and laughed together.  I have reassured them as they have done the same to me.   I do get tired more easier than usual.  There are times I have to use my walker or wheel chair.  I wish I could take them to Disneyland or Disneyworld.  But I am afraid to go with just us, because of my condition and my health.  My right urterer is severly damaged due to the radiaton. I have been told it is beyound repair.  They have done a renal scan, it shows my right one woring 11 percent which means it is getting worse, and the left one is getting worse also.  What that means is my urine output is very low.  For over 2 yrs plus I go in every 4 to 6 months to have a stent exchange, they take out the old and of course give me a new one.  It is a minor procedure.  But still takes alot out of me.  I also receive a B12 shot every month and an IV of Zometa every 6 months for bone loss, which both will be a part of my life the rest of my life.  I just wish I could afford to take them on a mini vacation that they so well deserve.

Posts: 1607
Joined: Aug 2012

I know...our baby is just 15 mos old. The older 2 are 12 and 15. My husband was diagnosed stage 4 in august. I hate what this has done to our family. The 12 yr old was diagnosed with diabetes in november and is showing signs of anxiety and depression. The 15 yr old is doing horribly in school. I hate cancer. We have had to tell the kids no for activities and thngs because we are now buried in debt...but we have agreed that we will try to vacation as much as we can and the docs will have to wait for their $$...they are getting a ton from the insurance company...wish they would forgive a bit from our share. Do you have a family member who can go to disney with you? I know we just a post card from disney offering their free dining plan...i think the travel dates were in feb and march. It does save a bit of $ and if someone can split the cost of the room that would be fairly inexpensive.

Lovekitties's picture
Posts: 3356
Joined: Jan 2010

I suggest you write to Disney and explain your situation, including your military service.

It just may be they will help you make that vacation possible.

Hugs to you and your young care givers.

Marie who loves kitties

annalexandria's picture
Posts: 2573
Joined: Oct 2011

even when you have the money to go places, all of the side effects we deal with can make it hard to plan any decent vacation.  We ended up canceling a trip a few years back when I felt like I didn't dare go more than ten feet from the bathroom.  Really puts a lot of limitations on having fun.  I hope there are some enjoyable activities you can do with your kids closer to home, that aren't so expensive...we spend time at the bowling alley, local science center, parks, etc.  Not as exciting as Disneyland, but I bet your kids are very happy to spend time with you, no matter what the circumstances!  Hugs from one mom to another~Ann Alexandria

tommycat's picture
Posts: 790
Joined: Aug 2011

If my memory serves me right, weren't you seeing about having an ostomy put in because of all the troubles you were/are having? It sounds like the bathroom urgency issues controls what you can and cannot do.

Is an ostomy still an option?

Hoping you find better health and lots of strength to enjoy your time with your family~


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