Cancer Support and Caregivers Who Are Trail Blazers!

[TruTexan]

Originally Posted by LeftWriteFemme

Okay, so today my sponsee went to the medical oncologist's office and her number is 17 and this means she will have to have both chemo and radiation. 4 rounds of infusion chemo and 28 treatments of radiation. She will begin the chemo in a couple of weeks. I am shocked.......none of us thought she would need chemo. I haven't stopped crying since I found out and I am going to have to get a grip because I will not show her how upset I am, she needs my strength not my distress. I simply don't want her to have to go through this and I have no control....none of us do. She is being a trooper, I offered to come get her or go stay with her or have myself and others come take her to a meeting, but she says she's okay (her sponsee is away this weekend)

Any advice you can offer about surviving the chemo....or the radiation for that matter is appreciated.

Earlier this week the cosmetic surgeon had to cut away her dead skin....it freaked her out, when I asked her why she said because he did it right there in his suit......guess she thought he would gown up??? This has been such a learning experience.

The medical oncologist says when this is all done her chance of occurrence will be 10% so I'm going to hold on to that......until I can find something better!

Thank you again for all the support and encouragement, it really helps!

Many prayers said for your sponsee. I know she is in need of your support and you need support of us here at BFP. I haven't done much online posting , just reading and forgot about reading this thread as well. I"m here and I support you.
A wife of my cousin is finishing her chemo this week, she had ovarian and uterine cancer which spread to her lyphnodes. She starts radiation therapy next week and should be finished with it by the 1st of next month. It's been a long road for her as well as those of you that have gone through having cancer and getting treatments. Chemo and radiation take a toll on the patients involved and they all need support as much as they can get to keep strength to fight the fight. I commend you LWF for being so diligent in your support to your sponsee. Keep up the good work. I will keep you in prayer as well as your sponsee and all members here that are dealing with the this.

God Bless you all.

[LeftWriteFemme]

[DapperButch]

So, i had a little freak out yesterday. I was calling my doc's office to find out when I should schedule a CAT scan. It had been a long time and couldn't remember what the plan was as the time frame changes on various tests the further out I move away from when I had my surgery/chemo treatment.

I found out that I actually missed a CAT scan appointment 4 months ago. I am pretty pissed because I am confident that they did not call me to tell me that this was scheduled. I recall the conversation with the assistant I had at my last oncology appt. She was to set it up when it was time for me to get one and let me know. She of course thinks she DID tell me. I don't recall that phone call, or receiving those prescriptions.

It doesn't matter at this point.

I was pretty freaked out that it has been 1 year and 3.5 months since my last CAT scan and it was to be done at one year. In my head, I mixed it up with how soon I was supposed to have a colonoscopy which is every 1.5 years (I think? Shit, maybe that one is sooner, too).

With both CAT scans and colonoscopies you want to be careful with how often you do them for health reasons.

It hasn't helped that for the last couple of months I have been having that same tired feeling I had before I was diagnosed. It is hard to explain, but it is this certain type of exhaustion I get. This is what got me thinking about calling to begin with. I actually thought it was supposed to be at 1.5 years and I was ahead of the game.

I will get my blood work done today and we will see how that goes. For most cancers though (the ones that I would typically get next), wouldn't show up in the blood until it was pretty bad, so that it not really a helpful gauge.

The CAT scan is Monday. I am glad they figured out a way to get me in so quickly.

I hope everyone else is doing well here.

I have a question for those who have suffered from cancer (for some reason I don't like the word survivor). How often do you think about it? How often do you worry it will come back? What is the intensity of the worry when you do think about it?

Thanks.

[clay]

Hey Dapper:
Glad you were able to get in and have this scheduled soon!
I understand where you are coming from on wanting to get the FU's done according to "schedule".....as per one's respective providers and timelines.
Once having cancer, surgery and/or chemo, we are predisposed to "living" on a timeline, so to speak.
My previous oncologist said I would need to be seen every 3 months, with the tumor marker levels done then, for life. So, in my subconscious, that is the "timeline" I lived on.
My current oncologist is from a different school of thought, following a national organization's gudielines. With my levels being stable at around 1 to 1.33, no new symptoms, etc. I can now go to once every 1 to 2 years before having CT scans. I don't have to get colonoscopies for a couple or 3 years unless something new comes up.
I had to re wrap my brain around this new set of guidelines, but am doing good with that. I was "hesitant" at first though.
Last Sept. I was given quite a scare. Had to get new colonoscopy, 5 months after previous one. BUT sometimes, the films do pick up "artifacts" or such....soooo.
Then in Nov. I had something "suspicious" show up on previously normal mammos. Again, I was terrified, put through wringer with more compressed scans and tests. Luckily, it was all benign....soooo...I get my mammos yearly without fail!
I had my regular eye exam a few months back, and again, I was given a scare. Further workup and MORE tests showed I didn't have acute narrow angle glaucoma as previously thought!
Now, my cancer wasn't as advanced , and I dodged having to have chemo/rads, but every check up does leave me with slight trepidation.





How often do you think about it?

Initially I was with some concern each time I had a follow up. I wondered if my cancer would return, what if my tumor marker levels were up, etc.
In time, I was able to relax and think on the positive side of the spectrum.

At times, I do think of it, and wonder if there are any new mutated cells running
amok inside of me. It's almost impossible to NOT think like this at times, for myself, anyway.

These answers apply only to me....as a sidenote....


How often do you worry it will come back?

Again, I am able to think more along it won't return, staying as focused and as positive as I can.

I don't want the fear of cancer to rule my life. I could drive myself insane with wondering about the "what ifs" if I let that consume me.



What is the intensity of the worry when you do think about it?

Last September, I was a royal mess when the films showed an "applecore lesion" on my splenic flexure of my colon (left side of colon). I was scared out of my mind for 6 weeks, until I had further workups to rule that out. It involved another colonoscopy and CT Scan with/without contrast, and bloodwork.

I was so down and worried sick. Here I was in a new relationship, just starting to settle into life again, and this ugly scenario cropped up. I couldn't focus on anything BUT cancer.
Thankfully for my loving, positive, and supportive partner, and an amazing network of friends who were supportive and loving, I was able to come out of that post test results!

Next month I am due for tumor marker levels, then pending those results, I am going to yearly FU's. Of course, if I have any changes in bowel/bladder, etc I will go in sooner.

Each of us are unique and each respond differently to our situations. But I know I will always have some trepidations regarding this ugly disease recurring inside of me. But I also refuse to let it consume me. I have my crafts, hobbies, friends, and this wonderful thread as diversionary. I always come to the Planet to see this thread in particular.

I feel at ease here, I like to read about each of us, and to share of myself with each of you. I like to catch a glimpse into each one of your lives, and see how life is going for everyone else.

Will it ever get less stressful? Probably not....because we each live on some sort of a "timed guideline" for further tests, FU's, and that deep down, nagging little thought of "is it back". What does this tiredness mean?

I have been more tired as of late, and I attributed it to the recent total knee replacement surgery I had. My hemoglobin is low, BUT rebounding. My BP is low, staying low, and I catch myself nodding off several times a day, if I sit still long enough. Of course, one's bowel habits and consistency does change...a lot...post cancer of the colon, so when asked if it has changed, I am always like...well, that is hard to say...unless it is bloody or something frankly obvious....how does one gauge that? as to "has it changed" ?

So, I hope I have given you some semblance of what it is like for myself...and I don't think any one of us is "alone" per se, in these same feelings...one way or another...and probably always will have these variances of feelings, fears, and "what ifs".

Dap....good luck my friend. I am with you in thoughts & spirit. Please let us know when you are ready to, your test results.
I look up to you, BTW, in so many ways. YOU were an amazing source of information, support, and encouragement to me when I faced my own colon cancer and surgery!!
I can only hope to be of the same to you....take care, Dap!!! fondly....Clay

[Genesis]

Sending positive energy and prayers to you DapperButch, Clay and everyone else in this group. Gosh, I feel like I have been out of the loop for a while.
As of now, my Mom had left knee and leg surgery. One of the screws was digging into her knee and she was no longer able to walk. She has two months left of limited mobility, and then she can begin physical therapy. It has been a learning experience trying to make sure she is wise and patient and not force herself to walk sooner than she should and making sure my Dad and I do not burn out.
It has been an interesting balancing act, but totally doable. Learning to know when to ask for "me" time... With Mother's day coming next month... my mind is already planning what my Dad and I will be doing for her on Mother's day. I am thankful for every single Doctor, intern, nurse and health personnel that has been involved in my Mom's care... even the bad ones... learned lessons and wisdom and strength gained. My prayers, positive energy, and love to each of you on your journey and your loved ones that walk this journey with each of you....

As for the questions:

How often do you think about it?
Since beginning the journey with my Mom almost 6 years ago... I do not think of mine so much... I make sure I stick to my annual check ups and blood work. Since I am so involved in my Mom's process... I do not think of mine often...

How often do you worry it will come back?
I worry mostly when I go do my blood work or annual check up. Once I get the results... then I deal with it....


What is the intensity of the worry when you do think about it?
It's not as intense as it used to be before. I just figured when it's time for me to go... It's time for me to go... If it comes back am going to give it hell.....

[DapperButch]

Hey, Clay. Thank you for the support and being so open and sharing in the way you did. You rock.

Genesis, yes it makes sense that if we have others to worry about, we worry less about ourselves. Glad to hear you have not forgotten about yourself and follow through on getting the tests you need.

[clay]

Dapper:
You are so very welcome! Thank YOU for your continued friendship and support with your kind words!!!
Take care of yourself, Dapper!!