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Any ALL survivors out there?

jamie77
Posts: 5
Joined: Nov 2005

This is my 1st time writing, I was diagnosed will ALL when I was 4 years and am now 28. I do not remember a whole lot about being sick-except of course the most tramatic parts! I have recently become really interested in the disease and Cancer in general. My mother and grandmother both have passed away from cancer- so it runs deep in my family. I am now a mother myself. I feel blessed to have overcome this, but continue to think "what if"--

kerrie
Posts: 12
Joined: Feb 2002

Hi jamie, my name is Kerrie. I was diagnosed with ALL when I was 3 years old. I'm 26 years old. There are some things I remember about being sick and some things I don't. I would like to talk if you want.

jamie77
Posts: 5
Joined: Nov 2005

Hey Kerrie!
Thanks for the response. I would enjoy finding out about your experience! It seems as though I might have blocked out some of those memories, as well as maybe being young and not really know what was going on... I have recently requested my medical record from the hospital I was treated at and am hoping that has some really good info in it. Do you ever worry/think that you are now more prone to get cancer again? Do you still have regular checkups?
I think the one thing I remember most is the spinal taps!!!--Gosh how I dreaded getting those!!!! I look forward to hearing from you and keeping in contact!

kerrie
Posts: 12
Joined: Feb 2002

Hi Jamie,
I used to worry that my cancer could come back. Eventally I started not to worry so much. There were sometimes this year that a lot of my hospitalization memories came back. In november of last year I was hospitalized with a c-diff infection. I was in the hospital for three weeks and ended up loosing twenty pounds. I ended up getting the infection from the antibiotics receved for a surgery I had. I had a herd time gaining weight after I left the hospital. That experience was very hard on me and brought back a lot of old feelings i had. I ened up going to a therapist for a couple of weeks after I got out. That seemed to help me. Eventally I gaind my weight back and am healthy now.I take herbs for my IBS and some medicine for headaches but other than that I am healthy. The herbs help too. I like not having to take medication for my IBS. I don't see an oncologist anymore. I did after I was cured. But that was when I was little. The bone marrows and spinal taps are one of the major things I remember. They were the worst. I can't watch a medical show when there is one being done. I also remember all the iv sticks too. I can still smell radiation when i'm in a hospital. I also can smell generic tylenol too. Are there some things that you remember? Well hope to talk to you soon.
Kerrie

jamie77
Posts: 5
Joined: Nov 2005

Hi kerrie-
The only time I have been hospitalized since I was sick was my son's birth-- and I really hated being in there, even though it wasnt for a "sick" reason.... but just lying in that bed and having nurses come in and being hooked up to monitors and stuff- boy it was like old times! I also remember all of the IV sticks-- I even remember getting one in the bottom of my foot!--It seems like any place they could put a needle they found a way to do it.
I think the hardest part right now for me is not knowing why I got sick. My mom passed away from Lung cancer when I was 14 and my grandmother passed away from cancer this past spring- now granted those were different circumstances, my mom smoked and my grandmother was elderly and had not been to the dr in years, but I just think, gosh am I doomed again? I also do not go to an oncologist anymore- I went until I was 18 and then stopped going. I can remember all of the dr's appts- the hospital I was treated at was an hour away from my house, so at the beginning I was going every week and for that hour I would just dread going and getting the spinal taps! I felt when I was younger I didnt really ever think about my sickness, but now I guess that I have a husband and a child I have a lot more to lose- so it makes me think a little more about the whole "cancer" thing. My husband really doesnt understand bc he obviously has never gone through anything that I did nor did he lose a parent like I did. Do you have any long term side effects? Are you bad in math? I know that is a side effect of chemo and I definitely fit that category-- I have always struggled in math and still do-- I have a hard times understanding some of the reasoning aspects of it- I dont know that that info was shared with my teachers growing up and I wish that it had been. I mean I can do basic math, but when it comes to the more harder things like algebra and geometry- I struggle!
Where were you treated at? I grew up in PA and was treated at The Childrens hospital of Philadephia-- I still keep in contact with one of my drs.
I now live in NC.
Well write me some more when you get a chance
Do you communicate on here a lot? Are there any other websites you use? Hope to hear from you soon!

kerrie
Posts: 12
Joined: Feb 2002

Hi Jamie,
I was treated in Rochester New York where I grew up. I was in treatment for two and a half years. I was "cured" when I was about six. How long were you in treatment? I have some long term effects from the treatment. When I was younger I was bad in math and spelling. My spelling got better as I got older but I still have trouble with math. I can add and subtract top a certain point then I need a calculator. That's about all I can do. Any other kind and I can't do it. It's nice to talk to someone who knows what I went through. Hope to hear back soon.
Kerrie

jamie77
Posts: 5
Joined: Nov 2005

Hey Kerrie-
I was "cured" when I was six also- so I went through about 2 years of treatment... I am glad to hear that I am not the only one that is bad in math! Growing up I didnt know the reason I was bad in math was because of side effects- I always thought that it was just difficult for me, I have learned alot about myself as I have gotten older and my curiosity about the disease has risen. When I was trying to get pregnant I was reading that it could be hard for me to get pregnant bc of the drugs that I had taken-- luckily though I had no problems and have a healthy baby boy!--Well he is not such a baby anymore!!:) Do you ever wonder "why" or how you got sick? I often think about what caused it, also are you outward to people that you are a cancer survivor? Growing up I didnt tell anyone!-- I dont know I guess I was embarrased and didnt want people to feel sorry for me, but as I have gotten older it has gotten easier for me to talk about. I am still waiting for my medical records to come- I am anxious to read them and find out if they have valuable info in them into what it was really like and how "sick" I was...
Well I hope to hear from you soon!
jamie

kerrie
Posts: 12
Joined: Feb 2002

Hi Jamie-
When I was younger I never told anyone that I had cancer. I didn't want anyone to feel sorry for me or treat me differently. Now I don't have much trouble talking about it. It's easyer noe to talk about it. What kind of treatment did you have? I had chemo, radiation to the base of my head, and bone marrow and spinal taps. The radiation to my head makes me bad in math. Have you ever done any cancer walks? I did one when I lived in Boston. It was a lot of fun. My dad and I walked together. Did you go to any camps when you were sick? Do you have a hard time talking and meeting people? I do because I'm quiet before I get to know people. I guess I like to feel people out before I let people get to know me. Do you have an email address?

hope to hear from you soon.

Kerrie-

jamie77
Posts: 5
Joined: Nov 2005

Hey Kerrie-
Oh my gosh-- I totally forgot about the camp I went to until you mentioned it-- I did go one summer for a week, I cant remember the name or exactly where it was located- but I remember the first day I was sooo home sick and then by the end of the week I didnt want to leave!!:) I remember they had horse back riding and canoeing and swimming and we had camp fires-- I think I was already in remission when I went, but I remember there were kids there that were sick.
I had chemo, I dont believe that I had radiation-- and I took lots of pills!!! Did you take prednisone(sp)-- I can remember I took it for a long time and it made me so hungry! I of course had lots of spinal taps and I had a blood transfusion from my dad. I have not done any cancer walks-- but actually how I found this site was through the American Cancer Society site where I was looking for some volunteer ideas. They actually have this program here in NC where people volunteer to take people to drs appts and chemo and stuff who do have a way to get there and need some support. I am thinking about maybe this summer getting involved with something like that-- I kind of feel like I could help someone and give them hope! Growing up I used to be really shy-- especially around people I didnt know, however once I went to college I became more outgoing, and now I am really outgoing and am a people person. It has just been recently that I have felt comfortable talking about my cancer- actually I dont think any of my childhood friends know that I had cancer, it for awhile was a part of me that I just wanted to put behind me and not ever think about. Now I think I getting to the point where I dont think people will feel sorry for me- and i want to turn around and do some good.
I also think before, mentally I didnt deal with my illness and even when my mom died I didnt deal with it then- it was harder for me in my 20's then when it happened at 14.
The one thing that I do have a major problem with dealing with right now- it thinking all the time that I have cancer in my body right now- it is hard to describe, but it seems like every time I dont feel well I think right away- oh my god I have cancer again and it could just be a simple headache! I am really scared of dying!! That probably is the thing in life that I am most scared of. I think I feel that way because I did lose someone so close to me and I know what it feels like to hurt in that way and I dont want that to happen to my family or my son- do you know what I mean? My husband really doesnt understand any of this, bc obviously he hasnt experienced it. Do you have a significant other? Do they know that you were sick? When my husband and I were dating it took me the longest time to tell him about my cancer- I guess I was scared he would leave me because of it.
Well I better get going- it is getting late and I am getting sleepy!:) my email address is jharrison126@nc.rr.com-- write me there!
Hope to hear from you soon!
-jamie

nicolebear27
Posts: 6
Joined: May 2005

I AM A SURVIVOR I HAD ALL LUEKEMIA, I ALSO WENT TO A CAMP CAMP SUNSHINE IT WAS CALLED. I REMEMBER SO MANY DETAILS ABOUT BEING IN THE HOSPITAL I WAS THERE FOR 3 YEARS. I REMEMBER THE SMELL FROM THE RADIATION ROOM, THE NUSRE'S FORGETTING TO CHANGE MY IV AT NIGHT, THE SHIRTS MY DAD CUT UP FOR ME SO THE IV WOULD FIT THROUGH, LOOSING ALL MY HAIR, LOOKING LIKE A SKELETON, LEARNING HOW TO WALK ALL OVER AGAIN. DECORATING HATS TO COVER MY HEAD. BEING AFFRAID OF EVERYONE WHO HAD A WHITE COAT ON. EATING SPEGGETIO'S BY THE DOORWAY IN MY ROOM. BEING TEASED ABOUT MY THIN HAIR AND BLOTCHY LEGS IN SCHOOL. HAVING NO VAINS WHEN I GET MY BLOOD DRAWN. TEARS IN MY FATHERS EYES WHEN EVER THEY DID MY SPINAL TAP. ALL THESE MEMORIES THAT NOONE ELSE SEEMS TO UNDERSTAND THE EMOTIONAL SIGNIFICANCE THAT THEY BARE ON ME, ESPECIALLY WHEN I REMEMBER THEM OR TALK ABOUT THEM.
I NEED SOME SURVIVOR SUPPORT

kels-1984's picture
kels-1984
Posts: 1
Joined: Jun 2006

Jamie I was diagnosed with ALL aged 7 in 1992 and was treated at the Royal Victoria Infirmary in Newcastle UK. Memories are painful for me, I remember asking lots of questions to everyone like ALLLLL of the time, my mum also kept a diary of what medicine/tablets etc i had on each day, my temperature, and on hospital visits my blood test results, weight, height and doctors comments....Ive just finished my degree in English and am in the process of writing a book about being ill to hopefully benefit others and reduce ignorance amongst some of the public who do not understand. I was a victim of bullying simply through my condition not being understood properly.

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