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New here- need support

scareddaughter24
Posts: 68
Joined: Nov 2011

Hi everyone
I have been hanging around here for a while now- terrified and inspired.
I am in New Zealand and have found these posts and support on this site truely inspirational.

A few months ago my world fell apart - my 48 yr old mother- my best friend- my life- was diagnosed with a huge tumour that was blocking her bowel. They rushed her in for surgery and took it out. They found a very large. Very aggerssive tumour.

There were also spots around her abdomen i think.

She has been on chemo for 4 sessions. She has an infusion through a pick line every three weeks and is then on oral pills for a week after her infusion.

It is not on her liver or lungs- this looks like good news.

I am so scared and basically want to hear lots of positives. My mum is a very positive person and is so strong. She is handling chemo wonderfully and is now halfway through.

I hope she can beat this!!!!!!
I assume with the lymph node involvment and the fact that is was also in abdomen she is stage 4.

Remission is our goal.

Please any positive stories. I need some support
I am a 24 year old, busy teacher who is having a down day :(
Thanks

tommycat's picture
tommycat
Posts: 790
Joined: Aug 2011

Hi
You will find so many positive stories here, and many people who are doing very well despite going through hell and back. You will also find people going through treatment and can read their tips for handling the rough road of chemo. You will also find inspiration from others who are traveling alternative roads.
My last surgery for Stage 3 rectal cancer was Oct. 2010 after being diagnosed in 2009. It was hard on everyone (so hang on) but people CAN come through it.
Welcome to the Board!
Your Friend in California~

scareddaughter24
Posts: 68
Joined: Nov 2011

Thanks for your support i feel supported being here.
Its so hard and i hate to burdon my friends and family with my worries. I never thought it would happen to my mum, she is a nurse and has always looked after people.

It is so great to read all the stories of people who battle and get through it.
Gives so much hope!!

laurettas
Posts: 372
Joined: May 2011

Sorry you have to be here but this is a great bunch. Your mom's condition sounds very much like my husband's. He had surgery after finding a tumor in his transverse colon, it is signet ring cell which is very fast-growing and he has mets to his peritoneal cavity and distant lymph nodes.

He just finished six months of chemo, both Folfox and Folfiri and is now on 5FU and Erbitux. Had his first PET scan 10 days ago and the only activity that showed was a slight uptake in one lymph node in his neck. He has tolerated chemo well and we are very happy with what it has done with the cancer so far. He will continue on his maintenance chemo for several months and then if nothing shows up, will discuss maybe taking a break for a couple of months.

Sounds like your mom is doing well and she has wonderful support from you! The first part is the worst, getting used to everything and learning to take one day at a time and not worrying about tomorrow. Take care and keep us posted as to how everything is going!

scareddaughter24
Posts: 68
Joined: Nov 2011

Thankyou- I am also gutted to be here but so thankful that you are all such a supportive bunch and despite everyone that has been here has been dealt a rough hand- they all band together to support and give hope.

I love reading the positive stories and realisng that people do get through it.
Is maintenance chemo orally taken? and will it be less harsh?

Mum is so tough- she only has 3 days off after her 3 weekly chemo! Im hoping the fact that shes so determined will get her through it!!!

Annabelle41415's picture
Annabelle41415
Posts: 6148
Joined: Feb 2009

Welcome to the board. Here you will find many success stories and people at all stages of their journey. It's normal for you to be scared but come on these boards as ask questions or just vent. We are here for you and your mom. Best of luck.

Kim

scareddaughter24
Posts: 68
Joined: Nov 2011

I love hearing all these positive stories- Where are you at with your journey?
I am so thankful for having a place like this- i have felt so much better after posting last night ( after a good month or so of looking and not writing)

annalexandria's picture
annalexandria
Posts: 2573
Joined: Oct 2011

you are at the beginning of a challenging journey, and it's normal to feel very scared. But you're right, the fact that there was no sign of cancer in other major organs improves her prognosis a lot, and remission is a definite possibility. There are lots of folks on this forum who have been in a similar situation, responded well to treatment, and gotten back on the road to good health. No reason to think your mom won't have a similar experience, and that's what you have to try and keep in your mind at all times. The old saying "don't cross that bridge until you come to it" may be a bit of a cliche, but it really applies to the cancer journey. Try not to look too far down the road or worry about what might happen in the future...just focus on each day as it comes and hang on tight to the positive bits. Sending strength to you and your mom-Ann

scareddaughter24
Posts: 68
Joined: Nov 2011

for your kind words.
The saying dont cross that bridge until you come to it really applies to me at the moment.
Some days I only think of all the positives and appreicate the day etc etc and other days im so angry an gutted that this could happen to my beautiful mother.I also 'panic' about the future and start wondering how i would ever cope if i lost her.... how my dad would be... my brother is only 19..... every ache and pain (so slight) i get i wonder if im sick and end up totally stressed and in tears.

I am strong - my mum is strong- we are sticking together to get through this as a family - i know we can!!!!!

I am hoping she will keep being strong and get through this.

I am also so pleased to see everyone is so supportive on here and i look forward to being a part of this awesome place.

abrub's picture
abrub
Posts: 2088
Joined: Mar 2010

living a full and normal life, with no "expiration date" under consideration.

People do respond to treatment, and many get well. I hope for that for your mother.

scareddaughter24
Posts: 68
Joined: Nov 2011

I really love hearing stories like yours.
It has made me realise advanced cancer doesnt have to be a death sentence.
Thank you for giving me hope.
How have you gotten through the worst and ended up where you are today?
Thanks

abrub's picture
abrub
Posts: 2088
Joined: Mar 2010

of surgeries, chemos (both "normal" and given directly into my belly - IntraPeritoneal chemo) rare side effects and complications. I spent 28 days in the hospital, where my gut wouldn't resume functioning, so I had a miserable NG tube. Pain, infections, side effects, complications filled the first year or so post-diagnosis.

However, since then (completed treatment in April 2008, but had subsequent surgeries) every day becomes more normal than the day before. Now I can do anything.

Getting through - a struggle. You plug along because you have no choice. It seems endless, and then one day, you find that you're starting to feel human again, and that life is resuming normalcy. I did see a counselor throughout, and he has been a god-send. I still see him regularly.

It is important to do whatever feels good, and makes you comfortable. There is no shame in needing sleeping meds or anti-anxiety or anti-depressants. Counselors can help keep things in perspective. Don't try to "tough it out" - use available tools. That is the best advice I can give.

buckeye2
Posts: 428
Joined: Jul 2011

I am the wife not the patient but want to encourage you to try to stay focused on your own priorities. It is the number one thing you can do for your mom because she will feel even more stress if she realizes her health is causing you to suffer. As parents, our job is to get our children to a place of complete independence. You are a teacher and I will bet your mother is silly with pride. One quote I learned on this Board is "this is a marathon, not a sprint" has been so true. The journey ahead for your mother is a long one. You living your normal life will be her sanity. Good luck with those school kids. One good thing about your job is that it leaves little time for concentrating on your own problems. Lisa

scareddaughter24
Posts: 68
Joined: Nov 2011

I completly agree that mum would want to see me living life normally and I do in front of her. I know it would hurt her to see me hurting so i use friends etc to support me through this. I am just so scared for her and want this to be over and for her to be healthy again.

I love my job- and the kids in my class- only 1.5 weeks till they are on xmas break and go to antoher teacher- i feel like they have helped me get through such a hard year i will miss them so much.

I guess i will need something to keep me busy and occupied over the holidays so i dont concerntrate on my problems :)

Thanks for your support!

plh4gail's picture
plh4gail
Posts: 1238
Joined: Oct 2010

Sweetheart....Hugs to you! My daughter who is 26 now was 24 at my diagnosis (June 21,2010). She was my caregiver through treatment and is my world! Along with my other 3 children. I had just turned 46 a month after my diagnosis, now I'm 47. I was/am stage 3C. I had a large, almost obstructing tumor and 6/12 lymph nodes. I am an RN. I went through all the treatment and surgeries like or similar to many of the others here, which was rough at times for sure. I got pretty sick and felt bad for awhile for sure. And I lost quite a bit of hair.

Now...6 months after my last chemo...I feel so much better! I have gained weight, have color again, my hair is growing back :),my chemo symptoms are much improved, and I am learning my new "normal" after my resection. My kids were there for me all the way and know what I can and can't do. Although I can do pretty much anything I guess! Last summer we went on a 7 day cruise to Mexico, went para sailing, zip lining, eating, shopping.....ya...life is pretty amazing. I am back to work now too. I don't work 12 hour shifts anymore though. I gave up my beloved ER job for a Mon-Fri 8-5. How rough is that. lol...

It will be hard for you to see your Mom not feel well. My daughter sat and watched me go through every single chemo session. Watched as I slept in the hospital after surgeries just in case I woke up and needed anything. Drove me all over California to appointments for months..... Just know your mom wants to be strong for you, and in time I think she will recover. She won't be quite the same, and sometimes those changes might be hard for her to accept. But she, like me, seems to have a family full of love and support that will be there no matter what. Through pain, stress, iliostomy, nausea, neuropathy, .....you will both gain strength you never knew you had!.....One day at a time until it's over. Sometimes it's moment to moment and that is ok too.

We will have many helpful tips for you and your mom so come here for anything at all. Nothing is too personal or private. Through radiation, chemo, and the surgeries there will be things come up that you may have questions about so please please ask. There will probably be someone that can help.

And about this time next year......you will see such a wonderful change and feel like life is good again.

Hugs to you and your mom, Gail

scareddaughter24
Posts: 68
Joined: Nov 2011

Thanks Gail,

I feel very lucky to have met someone like you on here.
Yours words pretty much sum up my situation in everyway. It was a real comfort knowing someone out there like my mum has gotten through such a tough time and is recovering and living life fully. I really enjoyed looking at the pictures you have posted. You are so strong.

My mum is also a nurse. She is currently in the middle ( just had her middle session) of her 6 months of chemo. She has managed to go back to working however not in her pre diagnosis roll as it would be around too many sickies and the rist of infection would be too high. At the moment she is working most days with only 4-5 off after her chemo infusion which is every 3 weeks. I just cant believe that after a career of nursing others she is now a paitent.

I cant wait for my mum to finish chemo but at the same time Im scared of what will be next. I hope and pray that she goes into remission. I know there is no cure but people can be in remission for a long time.

You are right- I hate seeing my mum so unwell she has and is always the strong one in her family and to see her gonig through such a hard time is heart breaking although you are right... i stay strong in front of her and use my friends as my support network. Being on here has also helped immensely and i love my job teaching. My kids keep me sane... although i am scared we only have 1.5 weeks and then it is the end of the school year...whatever will I do.

One day at a time .. one day at a time :)
I really cant wait for this time next year when life feels good again.

Thankyou for listening to my vent- and for sending me such a beautiful message- your words bought me to tears. Im so lucky to have come on here and met people like you!

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