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Just need to talk....

Sally08's picture
Sally08
Posts: 47
Joined: Jan 2009

I'm 22 and single mom of a 2 year old. was diagnosed Oct. 2008 and had 2 surgeries and RAI treatment done by Feb 2009.... my biggest fear in Feb..... that I would have to spend my son's birthday in seclusion away from him while I sat alone and radioactive.

it's now June 2009... 8 months since I was diagnosed.... I've gained roughly... 30 pounds since all this started.... and wasn't necesarily at the best weight to be gaining in the first place.

I've already got so much going on aside of the cacner thing... that when I was diagnosed it gave me the final push to find a counselor.... who of course.... tells me not to talk about anything that's bothering me because she 'doesn't want to stress me out'

My endocrinologist wouldn't listen to me when I told her I felt hypothyroid come to find out 2 months after I told her and was ignored.... I WAS hypothyroid.... everytime I told her... she asked if I was seeing a counselor... uh.... yea... but.... what about my hormones.... then she eventually told me to look into anti-depressants.

Nobody around me can handle talking to me about cancer or how I feel about it because "It's an upsetting topic" I guess your true friends really show through then huh?

I've looked into support groups in my area... but they're all either on weekends or weekdays late at night. (none with childcare provided) No matter how hard I look I can not find one that is at least on a weekday during work hours... or on weekends or week nights that does provide chilcare. The childcare center I use closes at 7pm... most of the groups I've seen on weekday nights start at around 7 pm.

I guess I already was stressed out and depressed and having a hard time with everything else that I'm dealing with right now aside from the cancer.... then the cancer was added to it... I feel like I'm doomed. like the hope of actually feeling happy again was beaten out of me... I feel like a completely differet person and I hate it!!! And don't even try to tell the doctors you feel ilke that.... "But you should be happy because you've got the best cancer there is to have... you're the lucky one!" ..... Lord help me..... if my endo tells me that one more time.....!

Thanks for listening....
sorry top ramble.....
just needed a place to vent....
Sally

Lilypr
Posts: 32
Joined: May 2009

Hi Sally08 I was diagnosed on march this year. But I do KNOW how it feels when you try to talk to the family, friends (the people around you - including doctors) and nobody really understand. That thing your endo told you: "But you should be happy because you've got the best cancer there is to have... you're the lucky one!" I just heard it from one of my best friends. And it's just not bearable. I've been already there...with the gaining weight, to feel like I'm hypothyroid too, to have nobody around to TALK about it, also with the hard part of finding a support group near your area. All that in this short time. But let me tell you this; comparing to others on this site I don't write that much, but I do read a lot of blogs. And I can tell you that sometimes just reading others I feel better cause at least I don't feel alone with the pain.

I really admire the most of the people I read on this site and I feel I can learn from them and I know besides everything that I will win this fight with cancer. On monday I have the appointment with my oncology let's see how it will be. Also, I'm taking Synthroid (137 mcg) and I will have the results of my first blood test after levo, so we'll know this week how really I am doing with my hormones.

Wish you the best, hang in there, YOU R NOT ALONE = )

Sally08's picture
Sally08
Posts: 47
Joined: Jan 2009

Thank You Lilypr,
Yesterday My son and I met our new Primary Care Physician. I changed insurance so that I could get involved with the Cancer Care Alliance in my area. But with an insurance change I had to change primary care providers. My new one works monday thru friday and every 1st and third saturdays lol this was the first time in my life going to see a doctor on a saturday. lol

He was awesome! very calm and patient and understanding
It made me feel a little better seeing him be upset at the fact that I did not have an oncologist. he said he would get right on that. I told him everything else that's going on in my life right now besides just the cancer treatment roller coaster.... and best of all.... he's a family practitioner so... my son sees him as well now. which clears up a lot of stress for me as well.... since my son has about 5 other clinicians working with him alongside his Primary Care provider. At least one can remain the same.

Well, I'll stop rambling.... I'm just relieved I think that my new PCP seems to understand where I'm coming from.... unlike my last one. My last one said "Well the endocrinologist and an oncologist would be doing the same thing.... so why see one of each" And now I don't feel like such and idiot for disagreeing with him.
Sorry lol was going to stop rambling ... lol
Thank You for listening.
Sally

itsme4u
Posts: 9
Joined: Jun 2009

Hey there Sally,
I found that a support group is good but if you can not get to one because of your son, try chat rooms. I am first timer writing this email now but I wanted to tell you that the only relief I got so far was from a support group. Unfortunetly, when I was diagnosed with cancer, I was then told I lost my job after 10 years and then the company closed and I lost my insurance and then found out my medical bills were not paid because my company was self insured. So, dealing with cancer within itself is overwelming but dealing with your individual needs is criticial. The only good thing about not working was able to listen to people talking about the way they felt. I do not have an oncologist now either as I had thyroid cancer, I guess we do not rate. My oncologist told me that I was done with him after my 6 month check up. "GO, and be healthy" he said to me. NOW WHAT?? Well, when I really going over the deep end, I went to a group. I only went a few time because I got a job and the best advice I can give to you is, LAUGH!!! Listen to the comdey channel, read funny books, watch funny movies. Rent free movies at libraries for you and your kid. I did not get that advice from anybody at the group, however, I noticed I was laughing about all those stupid things the doctors say and all those things you are made to do and have no idea what the hell you are doing even after you asked twice. I started to feel better because I was laughing.
Signed LLL
Live, Love and LAUGH!!!

Lilypr
Posts: 32
Joined: May 2009

Hi Sally...great news...think about it as a new step to be well and healthy...all those changes will be for good you'll see. You are welcome...anytime you need to vent come here...I'm glad I'd helped you in some way.

= )

Sally08's picture
Sally08
Posts: 47
Joined: Jan 2009

I don't know how much longer I can do this... I feel trapped in my own mind. I'm tired of trying to talk and the subject getting changed... or hearing "but you're stronger than you realize"
I'm just so agitated and angry and confused and scared
I'm tired of throwing up and I'm tred of being tired.

jcvolt
Posts: 69
Joined: Mar 2009

Hey I got my endo to increase my meds like this ... I went for a follow up and she said my labs looked perfect everything was normal, so I told her I had been taking extra thyroid meds for like 2 months. I told her I had been taking an extra quarter pill every day because I felt like crap and my hair was falling out so she had no choice but to up my dose.

JAWsSavannah
Posts: 57
Joined: Jun 2009

Doctors don't like us to self-adjust doses but sometimes you have to do it. Just be very careful and conservative when you do it. When I first started Synthroid my endo prescribed 225mcg. After two or three weeks it was apparent to me that was too much so I cut the dose to 212 then sent a fax to my doc advising him what I'd done and why. In my message I asked him to contact me immediately if he did not approve. I've continued this practice for several years, eventually reaching a low dose of 143mcg when my tumors started doing more of the work (they can and do produce hormones just like a healthy thyroid). Each time I saw my doctor I would tell him the dose I had been taking and each time the blood tests supported that dose.

Again, make small adjustments only, based on what your body is telling you. Monitor your pulse and other signs to make sure the new dose isn't too much. In my case my resting pulse was the key--when it climbed to 90 bpm I knew it was time to reduce the dose. I also monitor hair loss by using a black bath towel. When I'm getting too much there will be no hair, or maybe one or two strands. Another signal can be fatigue; in my case I have fatigue at both ends, hyper and hypo, but there is a key difference. When hypo the fatigue is chronic and ongoing. When hyper the fatigue comes on suddenly then goes away just a quickly, after a brief rest.

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