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Joined: Aug 2003
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Danielle,
I had Xray's during my radiation, I always hated that day the most as it took longer so that meant a longer time inside that horrible mask.
The last week of radiation was the worst for me. I also vomited a few times due to gagging on the thick secretions in my throat. I threw up a few times after treatment stopped also.
Be aware that your mom may hit a "down" spell when treatment ends, it seems to be pretty common. I know I landed smack in the middle of Depression land and it took alot to pull me out. This board was a huge part of my recovery from that stage of treatment. I felt like I wasn't doing anything to fight the cancer any longer and realized that for the rest of my days, I would be waiting at some level in fear of it coming back. If your mom hits this stage it is normal. My kids and husband were kind of thrown by it all as they thought I would be so thrilled to be done with radiation.
Chin up, sounds like she's doing awesome and has a great support system.
Minnie


SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
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Thanks Brian and Minnie,

My sister sits outside the waiting room for my mom and these past few days it has taken a lot longer because of the x-rays. They are radiating IMRT her neck, shoulders and both sides of her face so the sessions take a really long time to begin with. The darn machine breaks down so they have hang around the hospital until it starts to work again because they are 25 miles from my moms house. I can't believe she only has one more session......

I know exactly what you are talking about Minnie when you mention the depression thing. I know that both my sister and I will go through it with her. We are already at the point where we know that after radiation she will have check ups every few weeks but they will not be doing anything to fight the cancer anymore and her ENT has really put it into all of our heads that radiation is a one time thing (thats why he saved it for the recurrance).
Next week my mom (Barbara) will be at my house to take care of my little girl. I will definately have her post on the board so she can introduce herself to everybody.

I was also wondering how long will it be before her "cancer" is not the only thing on my mind? I usually don't obsess and after her first surgery I really didn't think about it too much but now its always on my mind. I try to have fun and its just this feeling I always have with me and then my mind starts to wander and I can't get it out of mind.....Have any other family members been where I am as far as obsessing with this? My mom is the most wonderful giving sweet person I have ever known. She is the GLUE that holds our very small family together. I hate that she has to go through this.....

Danielle


Originally joined OCF on 12/12/03 as DaniO or Danijams
Dani-Mom SCC BOT & floor of mouth surgery-recur then surgery/rads & chemo completed 3/04
surgery 11/06 to remove dead bone & replace jaw w/ leg bone & titanium plate
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That reminded me that the machine I was treated on starting breaking down in the end of treatment also. It added a week to the treatment duration due to downtime. At the facility I was treated at the machines (8 of them) ran 12 hours a day. It adds one more dimension of frustration to the process. I missed a few treatment days also due to extreme sickness or rehydration at the ER. I was thirty miles from the hospital, one way, myself so I know exactly how frustrating it can - you just want to get it over with.

How long will she think about cancer? Good question. I am a year out now and think about it. I am better than I was. It's like getting jilted by someone you really love - it takes a long time (if ever) to get it out of your system. The bimonthly followups and scans don't help a lot either. How long will you think about cancer? I think we are all tainted to some degree once touched. My mother had breast cancer and melanoma and I don't remember thinking about it too much. Although the melanoma scar was huge.

Stay in the "now" the future doesn't belong to you and it can only serve to drive you crazy.

You said your mom is coming over to take care of your daughter? - who's taking care of your mom? When I was at her stage of treatment I was extremely ill - I couldn't imagine taking care of anybody - I could barely take care of myself! The latter part of treatment also compromises the immune system so DO NOT allow your mother exposure to sick persons. She can easily get pneumonia and various potentially life threatening secondary infections.


Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
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"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
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Danielle, I must echo what Gary said in the last part of the post. How can your mom take care of your daughter at this stage? She is the one who needs to be taken care of. The body energy and mental state are on a gradual decline after completing treatment and takes quite a long while to heal. I am still thinking of cancer every day even though I am over 2 years post treatment. But for caregivers, the impact is less as I feel that my husband and sons have already forgotten that they once had a severely ill cancer patient at home. Good for them.


Karen stage 4 tonsil cancer diagnosed in 9/01.


Karen stage 4B (T3N3M0)tonsil cancer diagnosed in 9/2001.Concurrent chemo-radiation treatment ( XRT x 48 /Cisplatin x 4) ended in 12/01. Have been in remission ever since.
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Hi Danielle,
I understand everything Gary and Karen are saying, what they say is great advice. My family worried silly about me always wanting my grandchildren around. I know that during my treatment I spent alot of time taking care of my 4 and 5 year old grandaughters and my own children that still live at home, ages 18, 13, 11, and just turned 10. I drove them to practices, went grocery shopping, cooked dinners, shoot, 7 days after I got out of the hospital I went to Regis Hair salon in the mall, in a wheelchair to see my 18 year old get her hair done for her prom.
I guess we all get through it in different ways, I was SO fortunate. Of course, until I found this board I thought I was the sickest person around during radiation!
I also bet that your mom wants to take care of your baby and that is where I understand her the most. No matter how poorly I would feel, if my 4 year old grandaughter, Shelby, came in the door I instantly felt better. Taking care of my children and grandchildren kept me feeling more normal and less out of control.
So, I would just watch and make sure your mom doesn't get over tired with it all. I would wager that taking care of her grandchild will give her energy.
Minnie


SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
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Hi Danielle -- a lot of what you are saying about your mom sounds so familiar... I just finished with radiation treatment (IMRT) in mid-January... It kept me beat up pretty good until around Valentine's Day, though I did start feeling much better about 3 weeks out...

The past few weeks I've actually been back at work around 30-hours per week and am actually enjoying real food again (I had Chinese stir fry for dinner tonight and could taste, eat and swallow without tons of difficulty, though I'm still on some pain meds).

I have "overdone it" a few times with my job as a sports reporter/photograher (which I love) and sometimes I have to remind myself it's OK to gear down, rest and skip things I may have done before...

I empathize with her waking up and feeling like she's choking on all the mucous and gunk. I was the same way. I still have some minor problems with that at night - it comes and goes...

SOmething your mom might want to ask her doctor about --> My mouth cleared up big time about a week after my last treatment when my doc prescribed some kind of steriod to reduce swelling. Within 48 hours, I went from having a constant gagging feeling to being able to sleep through the night with little problems... That made a world of difference for me... I can't remember the name of the steriod however, but it was one of those step-down programs where you take like six the first day, five the next, etc.

Regardless, a lot of folks say your mouth clears up pretty well a few weeks post-treatment... Tell her to hang in there -- there's a light at the end of that tunnel fast approaching...


Tongue cancer (SCC), diagnosed Oct. 2003 (T2 N0 M0). Surgery to remove tumor. IMRT Radiation 30x in Dec 2003 - Jan. 2004. Recurrence lymph node - radical neck dissection June 2004. Second round of rad/chemo treatments ended Sept. 2004.
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I'm sorry I wasn't clear in my post. My sister will be taking care of her and the baby. My mom will be staying at my house so she can be with the baby.(I live about 60 miles from her)My sister is the real hero here. She has given every second of her time to go to every appointment with her. I can't tell you how much that means to my mom. I work full time and have a 5 month old and husband (its like having 2 kids) and 4 big dogs. Right now my sister takes my mom to all her appointments but to be totally honest with all of you she is completely mobile and aside from people starring at her because she is so red she still continues to go to the movies, cook dinner every night for her 13 year old son and my stepdad and takes walks on the beach daily. She likes to smell food even though she can't taste anything. She is really handling the whole thing well (she thinks she is the sickest person around too Minnie she has never seen the stories on this board). She was soooo excited when I got pregnant she never thought she would be a gramma. More than anything she wants to spend time with Keeley my daughter. I have taken her up to Malibu a few times for her to stay there during this and she has taken care of her with the help of my stepdad and brother.

She doesn't like feeling tired and it was only just today that her voice has gotten really bad. She never missed a radiation appointment she just waited and waited for them to fix the machine because she did not want to prolong this any more than the six weeks.

She was so healthy before all of this. I think its really hard for her to be the sick one that people have to take care of. My grandfather died of melanoma cancer when I was 9 they caught it at a really late stage and the treatments they gave him did not work. My mom was by his bedside every step of the way. I think that whole experience makes this even harder for her....

You are all wonderful. I know our lives will be back to normal soon. Its just been going on since November and its been one thing after another with the surgery etc.... Its so frustrating.

Danielle


Originally joined OCF on 12/12/03 as DaniO or Danijams
Dani-Mom SCC BOT & floor of mouth surgery-recur then surgery/rads & chemo completed 3/04
surgery 11/06 to remove dead bone & replace jaw w/ leg bone & titanium plate
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