This is Singer.
I haven't been on here a lot (which is good, actually) because it seems like a whirlwind of activity has landed on me.
I didn't think I could handle it, after chemo & radiation---and the worrying, of course...But, somehow I've managed to forge forward and enjoy life.
I'm finding myself pushing myself to "the limits," which is probably making me a little stronger each day.
I just wanted to tell all my supporters that I used to talk to (on a regular basis) "Hello," and I hope everyone is enjoying the summer. (It's not in Australia, though, right?)
I have a "biggie" test coming up, the end of July---and I'm trying desperately not to worry. It's just like during chemo---"one step in front of the other..."
Amanda, I know you're having a rough time. I hope you find some peace. Every situation is different. I've found by being extremely busy, it's helping so much--when, before, I couldn't even drag myself off the couch.
Don't get me wrong...this is still not easy. Sometimes, my back hurts so bad, I don't think I can even walk. I think I manifest my nervousness there.
I'd love to hear from my friends, if even just to say, "hello," and how you're doing.
What a journey this has all been...and what lessons I've learned and am STILL learning.
So glad that you are getting somewhat back to a normal life. You will get there. You have gone through the storm and on the other side is the rainbow. Good luck with your scan this month. Let us know.
whew. I was getting worried I'd lost my friends.
It's so nice to hear from you 2.
I'm in the middle of a break (a few days)...then, back on the road for awhile.
I came home to get my port flushed, and had a concern...
I think it's the culmination of "resuming" a normal life. I started again with a low-grade fever and aches everywhere. So, today, my chemo nurse told me to switch from Tylenol (which I surmise I must've take close to 1,000 throughout the last year during treatment and thereafter) to Advil.
It's like a miracle! I think I've built up a resistance to that drug. Is that possible?
It's sooooo wonderful going back to "life," although I just don't have my strength built up. I'm assuming they're right, when they say it takes a year, before you really feel "good."
I'm starting to freak a little about the scan coming up. It's best for me to stay as busy as possible, if I can. It's when things get quiet, that I start obsessing.
It's so nice to hear from you both.
I was thinking and talking about Kayla (Cancerchick) today. My heart breaks, when I think about how difficult it was for her, without her beloved mother & not much support. She's really been on my mind. She's such a sweet spirit. I miss her.
It's been months since we've talked, but I'm not giving up hope.
I hope to come on here someday, and see an email from her.....
What wonderful news that would be!
In the meantime, you guys take care & thank you for responding.
Enjoy the summer. Soak up the sun, (as Sheryl Crow says)....
Last edited by singer78; 07-07-2008 at 10:52 PM.
Reason: Missing Kayla
Glad that you are resuming your life and moving on. I am sure that each scan you will always be nervous. I know I would be. You will do fine. Each yr that goes by the threat of it coming back gets less and less.
Yes, I was thinking about Kayla as well and always wondered if she just shut down from it all and needed to get a bone marrow transplant. The process is daunting and alot of people just don't want to talk about it.
We have been fine here. I do not like summer but so far it has not been so bad. We have done some nice day trips and have been having some fun. We are still debating if we are making the trip to Fla, the end of this month.
We probably will. Ugh. I would like to see my Dad though.
My daughter and her hubby are going to Europe in Sept. They are flying to Paris and then from there going to Florence, Venice and Rome for a total of
2weeks. They are very excited. I am for them as well but I get nervous.
He just bought another motorcycle and my daughter is riding on it with him and that makes me real nervous. I hate it and am still alittle upset that she is doing it. I have had bad experiences in my young married life with my hubby riding bikes. What can I do though they are adults.
Glad to see that your working. I am sure that you build a resistance to Tylenol or any kind of medication taken for long periods. It can elevate your liver enzymes so maybe it is better to lay off it for awhile anyway.
Did anyone ever do anything about your iron levels (ferritin)? It was such an issue for them to be swept under the rug and not do anything.
im glad you seem to be doing lots better. im just back from my holiday in london. it was so good to get away, i want to move there when i finish my studies. i was happy when i was on holiday, i didnt think about any of this stuff and i didnt cry at all and then i came home and it all came over me again. i guess ediburgh is such a small place and i have so many bad memories and associations with it. i saw my gp yesterday, she prescribed me with an antidepressent, i havent got the pills yet though. i am just so worried what will happen at uni if they find out. when i had my occupational health check before starting this year they asked if i had ever seen a psychologist or counsellor and i said yes, once last year during treatment and the nurse was really negative about it and said that they take this seriously into consideration for new students but as i only saw her once and she had spoken to my consultant it ended up being fine. so now im worried that uni will find out or i dont know if i have to disclose this to someone or when i qualify and i have to have another occupational health check that it will be a really big problem to get employed. there was girl last year who was made to defer a year because she had depression and they decided this after she had already done a year and was always in class and got good marks.
sorry, i guess im just freaking out, i start placements in 2 weeks and im already stressing about it, i have so many doctors and hospital appointments at the moment and ive emailed my personal tutor to tell her but shes on holiday and i dont feel comfortable talking to anyone else about this stuff. plus my placements are in this horrible little town thats going to take me over and hour and a half each morning and night to get there and back so i think im going to be exhausted.
anyways, im glad you are doing better. also i think your body can become 'immune' to drugs. i know it can happen with antibiotics but i think your body just gets used to some drugs and then you end up needing stronger doses etc.
when is your scan? part of me is happy that they wont do regular scans on me but part of me thinks well when they do decide i need to get a scan alarm bells will be screaming in my head because then they will have found a 'reason' to scan me and also part of me just wants to be put at ease. it took them so long to diagnose to me in the first place i keep thiking what if it comes back and it takes them just as long or even longer the second time?
sorry, i really should have started my own thread instead of saying all this stuff on yours.
Glad that you got a vacation in. It sounds strange that your school would hold seeing someone against you, especially when you had to go through what you did. Seeing someone for depression should not be an indictment that is held against you. Going into the medical field unfortunately for you will have its downside as you will have a greater amount of knowledge that most will not and it will remind you of your illness on a daily basis. I wish that my profession would have been different so I could be like everyone else and not worry about things most people do not worry about.
You are so young and to have had this illness to deal with is so unfair. You really need to get a handle on it before you get so wound up in it you will have a hard time having a healthy outlook on things. For me I sometimes think it is too late. I let all that I know about medical things and in dealing
with all the illness in my family put me in a position that I do not want to be in. I distrust the medical community and think about illness everyday. That is no way to live.
Had you gone into the medical profession before or after you got ill? I do not want to discourage you but are you sure that you are in the right field? Do you enjoy what you are doing? Do you get anxious when you have to relate
to sick people? Do you transfer a patient's illness and make it yours? If you can answer yes to these maybe you need to reevaluate.
It is a good idea to remove yourself away from where you live at some point and start anew. When we moved away from Fla. to Virginia it helped as I did not have to face the pain everyday. Being in a different place allowed me to
make believe that all that other stuff did not happen.
I hope that you can work through this. You have alot of years ahead of you and you should be happy in what you are doing.
hi linda, its good to hear from you.
im just worried that this girl in my year has had to defer this year because of her depression. i spoke to my personal tutor a few months back to tell her i was feeling down and she was really supportive and she pushed me to go and speak with my consultant. but with occupational health dept not being happy that i saw a psychologist once last year and this girl being made to wait before she can come back im worried that if i tell my tutor she may have to inform someone else and i might have to stop my studies. i also think that it could affect my work as the occupational health dept have my joint file for work and school and they may inform my work. i see my psychologist again today so i'll speak to her about it. my gp said that she thought i had a severe form of depression which came as a shock because everyone keeps telling me that this is 'normal' so how can it be so severe if its normal?
i applied to do nursing before i was diagnosed, when i was kept in the hospital for a week while they did tests i wasso in awe of the nurses and what they did and how amazing they made me feel and when i got out of hospital i applied to uni. i started my course the same week i was diagnosed. last year was fine, it was the foundation year so it was mainly biology and chemistry classes and not much about actual nursing care or pathophysiology. now though i am not enjoying my course. its really very interesting and i love being in classes but i am dreading placements mainly because of my work, i am a nursing assistant so i work closely with the nurses and i have yet to work ith a nurse who i think cares about what they are doing. but its the little things, i know how it feels to be in hospital and have no visitors for a week and i will always make time to speak to the patients, even if its while i am making beds in the mornings and the patient is sitting right there i always chat to them and then have the nurses afterwards ask me why i was talking to the patient when i could have been talking to the nurses about big brother or how drunk they got at the weekend and this doesnt appeal to me. i have never gotten emotionally involved with a patient and i understand the importance of not becoming involved but it doesnt hurt to ask the patient who is coming in to visit them today or take them a magazine from the nurses station when they are looking bored. but apparnetly i am the only person in the hospitals where i work that thinks this.
i have never felt anxious or anything at work or school, the only time i got upset was when a young guy came in with the flu and had hodgkins and i felt a bit panicked that i had to look after him, however i did tell my psych and she said that i am within my rights to request not to be involved in a persons care so i know now for next time. i know it doesnt sound it but i do love my work i just hate working with the nurses and where i can i will always try to work on my own. i applied to go to medical school because i am finding that i am much more interested (in class) about the medicine side and diagnosing patients than i am for the nursing side but they wont accept me until after i have been in remission for 5 years, i think i am to much of a liability for them. my psychologist says that my dislike of working directly with the nurses stems from my distrust of medical staff, from when i was 14 i had bad experiences with them and found that they just never listened to me, so apart from teenage acne, me going to my gp complaining of a sore back etc that lead to my dx, i had never been to the gp since i was 14. even now if something is wrong i will wait until i have an appointment with my consultant rather than go see my gp. sorry, that probably makes me sound like a stubborn brat.
my plan is once i finish my studies to move down to london, i am applying to do my third year placements in one of there hospitals which is currently being refurbished but by the time i have graduated the whole hospital will be open and they are looking for 500 new nurses so im hoping that if i do my placement down there that will help me in getting a job.
thanks for listening to all this.
So glad to hear from you Amanda...I was worried that I overstepped and felt bad that I said that to you. I just didn't want you to be in the same boat I found myself when I worked in the field for 30 yrs. I know exactly what you mean about the lack of concern and care towards patients. I always made it a point to treat everyone like they were my parents and someone I loved.
I always tried to ease the stress for a patient by answering questions and letting them know that they could always share their concerns with me. If I did not know the answer I would get it for them.
You sound like a very caring and giving person and the medical community needs more nurses like you. I have had the same distrust as you over the yrs and that is why I guess I am so frustrated over it all.
Your medical care system is so different than ours. I still find it strange that
you can not seek mental health help and that would cause you a dismissal.
In the states we encourage that kind of help if needed.
I do find it unusal that you have severe depression based on the cause. When someone is severely depressed they usually do not cope in a school enviornment and can not eat, sleep, study, etc. Only you can really gauge
how you are feeling. Do you think you are severely depressed? If you do not think so I would not place that label on myself. I am sure that you have
anxiety depression of some sort. Like a post traumatic stress syndrome.
I feel whenever you go through a trauma and you get past it there will always be some kind of emotional link tied to that.
I am glad that you love what you are doing and are moving forward.
thanks, i almost quit a few months ago, things at work were so bad (nurses being abusive towards patients etc) that i was coming home every night crying. i complained to my manager about what i had seen but nothing has ever come of it and all i can do is to never work in these wards and hospitals. (i am on the nursing bank, i dont know if you have something similar? i pick shifts in wards that are short staffed so i can work where i want) but i changed the wards i was on and recently it has been a lot better, though i am working on wards now such as emergency wards and assesment wards where i am admitting and discharging patients and taking them for scans etc, so i am not really involved in any personal care.
i really dont know what to do about uni, my tutor is brilliant and i can speak to her about anything but im so worried that if i tell her this then she will be obligated to tell someone above her. i forgot to ask my psychologist about it so i will ask my gp next week. it seems strange to think that i am employed by the same trust as all my doctors.
i dont think im severely depressed, im sleeping fine and have no problems at work or school or studying. i have found that i tend to comfort eat at the moment and i keep cancelling plans where i think there is people there that know i had cancer but are not close friends so dont know any details and i fear they will ask me questions as has happened on several occasions and it just seems harder to talk to people about what i went through now than it did last year. my psychologist did ask me if i was having flashbacks or nightmares about it but i havent. though i do have frequent nightmares i am being chased by monsters or zombies etc. sorry, im ranting again. sorry singer, ive kinda stolen your post here.
I am no shrink (psychologist) but you seem like you are more anxiety depressed (mild) due to your past situation. To have to talk about it to people you do not know in a social situation is normal I would think. When you are especially young I think it is harder cause you do not expect to have to deal with a life threatening illness when you are young so that in itself makes you feel different than most others your age. Do you have a support
group in your country where you can talk with other people your age that have gone through the same thing? What is important for you or anyone is to have people who can relate to your experience cause they have gone through the same thing. No one can understand the emotional trauma that one suffers unless they have walked in your shoes. You do not want to be the girl that has (HAD) cancer in your social network. It is hard to define yourself after having gone through cancer........a part of you has changed forever. But.....you can grow and learn from it as well. You know you are strong now and you have beaten the beast.
A for the comfort eatting I can relate. When I was caring for my Mom when she had cancer I would go home and eat brownies and every thing sweet.
That is normal to self-soothe. It is so sad to see that nurses can be cruel all over the world.
Have you ever thought about working in oncology? You would be excellent in that field as you can help so many go through the process cause you did it.
Just a thought. I was not happy when I tranferred to oncology but once there I loved it.
I know you will be excellent whereever you go. Someday this will all be a blur
and you will not think about it. I wish that for you. When you can talk freely about your fears to people who will allow you that you will feel much better. When you can talk openly it makes the fears less frightening.
this is my support group, i dont have one here in edinburgh. we have a cancer support service called the maggies centre and i went a few times during treatment but i was the youngest person there and they didnt have any specific blood cancer/lymphoma groups. i dont even know anyone personally who has gone through this. my grandparents died of lung cancer but i was too wee to remember.
i dont think i could work in oncology at the minute. i was told during a shift that i was being sent to an oncology ward to help then and i had to explain to the charge nurse and tell her i just couldnt go. i got really panicky at the thought of it.
i just cant believe that next month is one year in remission. i should be celebrating but i just keep thinking the worst. i guess it will all go away with time. ive started going to the gym again. i just need more motivation, i dont physically feel as tired just getting myself going seems to be a problem.
thanks for being there just now.
how are you doing thses days?
My, you've been chatty. That's wonderful.
I just finished reading your posts.
Linda, as always, you're so caring and sweet, and Amanda....HEY>>>>ONE WHOLE YEAR!
That's great! That's wonderful news!
I just got back from "the road," and....whew....talk about difficult.
I switched from Advil to Aleve. The Advil stopped working, too. It's a low-grade "ache" all over my body. Sometimes, it incapacitates me. Although, I'm pretty proud of myself for hanging in there & getting my voice back in shape...PLus, as you know, I do love my profession. It was "iffy" there for awhile, if I would return---but, I did, and I'm glad. It's what I love and what I think I do "best,"---at least I hope.
Amanda, I believe Linda is right about your mental status. I think it's like a "post traumatic" syndrome-thing. Everyone....I mean EVERYone approaches disease differently--although, they're are some common threads---like we're all scared out of our pants, basically!
I'm still trying to remain positive, too. Although, I keep wondering WHY am I still not feeling chipper? Why do I have to take so many pills? And yes, Linda, I'm still taking iron.
They have me Repliva. I suppose after next Tuesday (I see my Onc) we'll proceed forward....
OK...so, I wasn't even going to say it....maybe I did in my first post----but, Monday I have my CT scan. I feel like I may be "jinxing" it by talking about it. It's the CT scan with contrast. I have to drink that white crap...
So, I'm trying to stay focused, once again. Amanda, I truly think without my Celexa, I would be so fixated on anything negative. Again, I'm not pushing antidepressants--but, I know "me," and I know I needed help outside of cognitive behavior. But, then, I suspected all my life, that I was a little prone to anxiety and mild depression. That's a whole other story. But, after I started on the Celexa, is when I became excited about life again. I was sinking in the depths, which really doesn't sound like you....everyone's so different, as I was saying. But, I just don't want you to be afraid to try it, if your doc wants you to. As far as your job, and you having to state "depression," can't you just state, "anxiety?" There's a fine line.... Surely, they wouldn't not hire you for a position, because you get anxious.
I'm so thrilled to hear from you both...
I was away for awhile and gave the internet a vacation, too.
I think all in all, it was therapeutic to be away, regardless of how hard it was at times.
Anyway, girls....please tell me to calm down. I haven't had any tests for awhile, and you'd think this is like the first time I've ever been examined! I suppose every test will be scary for awhile. I can do this.
I've got another question:
Exactly how much should you "push" yourself?
I have this low-grade ache---and yes, I went online last night just to compare....
There's so many people with what I have, although it manifests itself differently in just about everyone.
I read where they said, "exercise," and "pushing yourself" is good...to a degree.
When do you know where to draw the line?
I had a low-grade fever when I was performing over the weekend,...so I assume I "crossed" it. When I went back, laid down and just meditated...it went away.
These aches are starting to "cramp my style,"---literally.
I don't want to take too many Aleve's, too...
I'm afraid of liver damage, but without them, I would just be lying on the couch all day.
I think this is all from chemo.
Ok...enough ranting for today.
Just wondering again.....
thanks for the reply and sorry for kind of taking over your post! i was able to tell my psychologist what i want from the therapy yesterday. i want to be my old self again. i dont want to tell my life story but ive never had it 'easy' but i always dealt with everything and i was a happy bouncy person. i havent felt like that person for over 2years. and i look in the mirror and i dont look like my old self either. i had a great figure and long blonde hair and now i am struggling to lose the weight i gained during chemo and my hair is this mousy brown colour and i am secreting too much oil from my pores and scalp so i feel really yucky most of the time. i feel like i am never going to be that person again. i think the scariest thing about taking the anti-depressents is that ive never had an addictive personality so i think that having to take these everyday until i feel better and not really having control over it scares me. i dont know what to expect, ive only been taking them for 2 weeks so i dont feel any different but i honestly dont know what to expect from them.
your scan will be fine. i know it will be. if anything was wrong it would show in your blood work. i know what you mean about the white stuff. that was the most awful stuff i have ever tasted. much prefered the pet scan where i got to drink a can of diet coke! i really wish i was getting a scan, just for my peace of mind. i keep thinking what if it comes back but the symptoms are different so i dont think anything is wrong for ages.
also i think you'll know when you push yourself beyond what you are capable of. i dont really have any advice to offer for this one because i havent experienced it myself. but i have learned to blame everything on the chemo! (i dont think my psychologist would see that as constructive though)
Don't ever worry about talking on my post. I'm just glad someone answers!...especially you.
I know what you mean about not ever being "the same," but really...it's not been all that long...plus, you're not that old. I think eventually we'll both level out to a new normalcy, and be better than ever. It's just the "getting there," that's difficult and hard to struggle through. The "what if's" drive me insane, too...but, hey---life's hard even when you're completely healthy. Driving a car has it's risks, as does anything in life.
I think you'll be back to your beautiful figure, too, in time. I'm losing weight right now, but I think it's because I stopped Prednisone. That stuff was evil...although it did help my lungs. I think they're probably 100% better. I didn't have any problem singing, and I've only used my inhaler once or twice in the past 2 weeks.
Back to you....
May I ask what antidepressant you're taking? I'm on Celexa, and I swear, Amanda, I would be bouncing off the ceiling if I weren't on it. I know how I obsess...I have all my life, and now, with these tests, etc....I wouldn't be able to cope without some help.
My regular doc (a woman) is the one that prescribed it. I'd been given stronger anti's and they didn't work. This one didn't make me feel "out of sorts," although I was pretty tired the first 2 weeks or so....then, I just got an incredible feeling one day...like, "I'm strong....I can beat this!" So, I figured it was more serotonin (sp?) being produced in my brain that was helping me. I don't know if I'll stay on it forever...but, for right now, it certainly is helping.
Thanks for the positivity about my scan. I didn't think I'd be so shaky about it, but the closer it gets, the more I'm worried. I suppose that's normal. I haven't had blood work for quite some time---I believe I have it Tuesday. I still need this stupid iron issue resolved. It's been looming over me, since last October or so. I think my Onc is hoping it will resolve on it's own, instead of giving me an iron infusion. Just the sound of that sounds a little scary.
We'll get through this.
Like Linda said, you already went through the roughest part (quite well...).
Stay in touch.
Hello Singer and Amanda,
Just decided to see what was up and lo and behold you had both written something.
Amanda, Glad that you got on something. Like Singer said it is better for you to be able to be on something to help take the edge off. It usually takes 2 wks for any medication to help and sometimes longer. If you do not see any
results maybe she can change it. If I knew something would make me feel better I waould take it. You need to give your mind a rest. That is awesome that you are a yr. into remission or cure. Every yr. that goes by is one more yr towards thre 5 yr. mark. I do not know why but 5 yrs. is the milestone in most cancers. I am sure that you are beautiful you just don't feel it. Your body has gone through a trauma and you will be YOU again.
Singer, Glad that you are back on the road singing. I am sure that your scans will be fine but I know it is an anxious time. I know I would be like that. I am not good when it comes to anything like that. I am amazed how well you both are doing even when you think you are not. Your general aches are caused by what? Ask your Oncologist as this may have nothing to do with your treatment and side effects. Generalized aches and pains can be from a variety of causes including some medications. I will wish you luck with your scan and let us know how it goes.
As far as your question "how far should you push yourself"?.... Even if you had not had a serious illness and gone through what you both have, your body will let you know when it needs food, rest, less stress, etc. If you get
tired and have moments when you need to lay down , your body is giving you clues so follow them. Know what I mean? Only you can measure how you feel and how much you can push yourself. Rely on your instincts and listen to your body and you will have the answer.
Well I am so glad that you are back and I understand the need to sometime just get away from the posting and talking about it.
Alot of things are going on in the family here. My older brother is going through a divorce now and he is an emotional wreck. My heart breaks for them both. My daughter and her husband are going to France and Italy for 2 wks in Sept. I will miss them but know they will have a great time.
I can't contain myself....I'm STILL cancer-free. I'm sooooo incredibly relieved!
Oh My Gosh!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! !!!!!!!!!!
My prayers are answered. I was so worried, because of these low-grade fevers and aches. They still have to get to the bottom of that, but my blood work was good---and they moved up my doc's appointment to near the end of August.
I still have a touch of pneumonitis & gallstones.
I asked them (nurses) about my continuing problems...and no one had an answer.
I think I'm calling tomorrow and ask the Head Nurse if she thinks I should see a specialist for my gallstones. My sister told me tonight, her gallbladder had given her problems (fevers, when it was inflamed)...actually, it seems to run in our family.
And...the pneumonitis just doesn't want to go away. I wondered about that...I cough (not very much) in the morning. I shouldn't have stopped using my inhaler, but I had, so I'm back using it. I thought since I'd stopped the Prednisone, I was supposed to stop all steroids...(duh).... I don't know why I thought that. Anyway, I came home and immediately used it.
I don't know what to do with myself right now.
I've been on the phone the last 3 hours with my family---
They were all worried, too, because they always tell me they can "see it in my eyes" when I'm sick....and, apparently, last Friday when I saw them, they saw "it."
I admit, I'm certainly not the "picture of health," but....I think I'm getting there. Anyone reading this that's going through it....take baby steps....slow, but sure. The end will someday be in sight. Sometimes, it's so hard to see it.
Amanda, when is your next scan? I suppose mine will be near the end of the year....this is a nice reprieve.... And how are you feeling?
Linda, so sorry to hear about your older brother. Divorce is certainly no fun for anyone.
Sounds like your daughter is a traveler. I would love to travel more extensively....I hope to.
Just thought I'd share my good news.
I was so scared...I admit---I went online and got more scared.
I even heard a nurse on the phone today, say to someone, "STOP going online..."
There's too much bogus info....anybody can say anything, right?
It's amazing, the weight that's been lifted. I didn't realize how much I was anticipating it, until it was almost over.
My husband was ecstatic, too. As a matter of fact, when I got home & told him the good news, he hugged me so hard, he hurt my port! I said...."Hey.......a little less tight,....." I had a new nurse access it yesterday, and she didn't do as well as the other nurses usually do....but, that's o.k., ....I'm taking everything in stride these days.