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New Members!

New Members!

Posted by Lacey_adminCCS on Mar 14, 2019 2:54 pm

Liz20‍ , MDM13‍, Bernard‍, Nardi‍, jomass1965‍, sreca‍, Happy2live‍, ARG‍, KImbopete‍, mekissa‍, MLYuen‍, Rebeccairenee‍, hrtlss‍, annie_lynnb‍, Vincenzo06‍, christines‍, KellyTbo‍, ZeroGravity60‍, Waynewayne‍, Nicky Mouse‍, Justmetwo‍, Cecilia‍, John Kumlin‍, David1850‍, BarbaraG‍, Maxjasmine‍, Karlos13‍, Sunnybird‍, Sammmie‍, FabMon‍, jtk‍, CJohnson‍, mywifinewnet‍, siyavarma‍, Scoot‍, jens‍, Davewarawa‍, Maggie Sarah‍, DonnaMN‍, Carruthers St‍, gem1007‍, Rockyrocks‍, Sharolyn11‍, Maggie82‍, Tparks‍, JanieF‍, Dee_m1987‍, stejul‍, hgburgess‍, Aries‍, nthdang‍, Hurm‍, Joanne Pilling‍, Joanie‍, alex47‍, TinkyShannon1‍, Car212‍ , rupa23‍, bevcavanagh‍ 

I wanted to send out a warm welcome on behalf of our community to our new members. Please take a second to say hello below by clicking the 'reply' button. This is a safe place to share, vent, and connect with people who get it. 

Icebreaker: How did you choose your username?

Re: New Members!

Posted by CJohnson on Mar 14, 2019 3:31 pm

Hi there!

Re: New Members!

Posted by Lacey_adminCCS on Mar 14, 2019 4:48 pm

Hi CJohnson‍ 

What brings you to CancerConnection? :)

Re: New Members!

Posted by CJohnson on Mar 14, 2019 5:11 pm

I've recently be diagnosed with stage 3b cervical cancer. It kinda came out of nowhere after seeing a gynecologist for 10 months thinking my endometriosis was causing all my symptoms. I'm really struggling. Do not know how to process what's going on. And have no idea how to tell my children. I'm terrified and overwhelmed.

Re: New Members!

Posted by Brighty on Mar 14, 2019 6:25 pm

Welcome, CJohnson‍ !   I'm glad you found us here at Cancer Connection.     I'm sorry to hear of your diagnoses.      Being diagnosed with cancer is terrifying.    You will find this forum extremely supportive and informative.        There's no easy way to tell your kids, but maybe you would like to talk with a social worker first to get advice on the best way to break it to them.       Although I haven't experienced cancer, I was a caregiver.      I can tell you that once a treatment plan is in place for you, you will already start to feel better, knowing something is being done.   I would advise a few things.   Gather a support system.     Get a few people in place that you trust, that you can lean on and confide in.    People you would not hesitate to ask for help when you need it.       As well, bring a second or even third set of ears with you to appointments for both moral support and to gather information.    The appointments can be overwhelming for one set of ears, so whatever info you don't get, the other person can catch the rest.       Before appointments, I would have all my questions prepared in advance to ask the oncologist.     Have them all written down.      I would also try and think of things you like to do, for distraction techniques when the going gets tough.   What is your go to?  Is it exercise, is it movies, is it reading, is it a warm bath?    Whatever works for you, distract yourself and give yourself permission to take breaks from cancer.       I would like to introduce to you a few members.    Ttjia‍  Nancy777‍  and Cmfrank‍ .   I hope you can meet them and share.     We have discussion groups too, if you click on forums, and types of cancer.   You will find your cancer type and join in the discussion if you want.      You are not alone here, so if you have any further questions, don't hesitate to post, ask, or just to vent.   Keep us updated on your progress.     

Re: New Members!

Posted by ashcon on Mar 14, 2019 7:05 pm

Hi CJohnson‍ 

Welcome to this community and, as Brighty‍ says, you will find a lot of support, listening ears, and tips from those who have walked this path - you are not alone.  1.5 years ago I was diagnosed with Stage 3 breast cancer and even though it's a different kind of cancer than what you have, cancer is cancer and we all know the overwhelming fear and sense of loss of control.

Brighty has shared with you some helpful tips and some ladies to connect with on this site.  You may also want to check out the resources available under cancer.ca/publications

Like you, I was most worried about how my two daughters would handle the news, after I finally accepted the news myself, and they are adults in their 20's!  Funny how our first thoughts after getting over the initial shock is to worry about how our loved ones will handle the news.
The good news is that there are many resources available to your family members and support network.  Take advantage of them.
One of the key questions to ask your doctor(s) right away - aside from the details of your cancer and treatment plan - is for assistance in understanding what resources are available to you.  Dealing with cancer is a 'whole body & mind" experience.

You may find this information helpful - I know I did.:  Talking to Children About Your Cancer

How old are your children?

Re: New Members!

Posted by CJohnson on Mar 14, 2019 9:33 pm

First off. Thank you so much for the kind inspirational guidance. And too think 3 weeks ago I had no idea this was happening! Hard to wrap your mind around. I've had all the tests MRI CT and PET scan. I meet with my radiation oncologist again on Tues. And am already scheduled to start radiation and chemo on the 25th. My boys are 15,16 and 19 and they are my heart and soul. 

Re: New Members!

Posted by christines on Mar 14, 2019 9:50 pm

 would like to ask if anyone is suffering from radiation effects over 15 months as i am i see lots of notifications and people see to say they are gone in 2 to 4 months
i dont understand why i am still suffering / cant talk well / cant swallow the size of a pea/ coughing up mucus when i sip a drink because my windpipe wont close and some fliud get down into my lungs is anyone epxeriencing this our a similar condition
chris seal 

Re: New Members!

Posted by Brighty on Mar 14, 2019 9:54 pm

christines‍  hi and welcome! I have heard and witnessed that radiation  can do a number on the body.  Do you mind if I ask what type of cancer you  have?  

Re: New Members!

Posted by Brighty on Mar 14, 2019 9:58 pm

christines‍   sorry.. disregard my last post. .   I see you have already  connected with JamesT‍ .    Is your oncologist  aware if what you are going through?  Did he or she have any suggestions  for you? 

Re: New Members!

Posted by Aries on Mar 14, 2019 10:17 pm

Hi CJohnson 

Welcome to this great community. Like you I have been very recently diagnosed - in fact just today had an appointment to confirm all my test results. I am anticipating to start chemo and radiation within days but not yet confirmed.
It is scary to hear the words "you have cancer" - I have stage 4 colorectal cancer mets to my liver. I had no idea this was even growing in me, apparently it takes years to get to this stage. If only our immune systems could pick up the clues sooner!
My only advice to you so far is try and be as positive thinking as you can, believe you can fight this and win; occupy yourself with things you love to do and visualize the future to be as you always planned it to be. Other than that, ask lots of questions of your medical team, start a notebook so you can keep track of answers and surround yourself with people you can lean on and people who love you.
And now you have all of us on this great community - I have found so much support and advice already on there - it's truly amazing!

All the best to you and keep us posted!

Aries

Re: New Members!

Posted by CJohnson on Mar 15, 2019 6:47 am

Thank you so much aries for being so inspiring even as you are struggling as well. I get my test results tues next week. Fingers crossed this time it is better news. I will beat this just as I believe you will as well. 

Re: New Members!

Posted by Minus2 on Mar 15, 2019 8:02 am

Hi CJohnson‍, 
Welcome to cancer connection and this wonderful group of supporters.  I was diagnosed with Stage 1 breast cancer in May 2016 at age 54.  My children were 20 ad 22 and they both handled things very differently.  One thing they asked me to do was have all calls from the hospital directed to my cell phone instead of the home phone number; my daughter found the initial activity and volume of communication around my diagnosis to be overwhelming and it fuelled her anxiety.  By having the calls come to my private line and voicemail, she got a bit of a break and some much needed distance.  Both kids were awesome about stepping up and helping around the house and helping me with appointments and stuff where needed.
Brighty‍ has already given you some great ideas regarding appointments & questions and the importance of distractions. She was totally right - once you have a plan, you will  feel more proactive and that does a lot to settle your mind.  ff you can focus on today instead of the long term, it helps a lot as well.  There is something to be said for living in the moment!  I would also recommend you consider asking for copies of all test results, scans, and pathology reports as information is provided.  The appointments can be very overwhelming with information and emotion, so having the paperwork to refer to at home where things are quieter can be helpful.
Wishing you well as you navigate this new world.  Keep us up to date on how your appointments go and trust in yourself and your boys that you all have the strength to manage this.

Re: New Members!

Posted by JenDavid on Mar 15, 2019 9:11 am

I am so sorry to hear that you have to join this 'club' but very happy that you have reached out here, and so early (I only discovered this community after I was already in treatment.  I will just add my story here.  I was also terrified and didn't know how to break it to my children.  So my husband did it for me.  I just couldn't look at them and forever see the pain and shock on their faces.  So we sat the kids down on the couch (13 and 15), I sat next to them, my husband faced them and told them.  I could have my arms around them and could then look at them when he told them but didn't have to say the words myself.  I just couldn't do it!!  I also had told two friends previous to talking to my kids.  One was their aunt (my brother's wife) whose own mother had cancer when she was 10 years old.  And the other was a long time family friend who is a social worker.  I gave them each a piece of paper with these people's phone number on it.  I told them to talk to their aunt if they wanted to talk to someone who knows what its' like to be a kid with a mom that has cancer (and her mom, BTW, is now 20 years cancer-free), and they could talk to our friend if they were afraid or nervous or just needed someone familiar they could talk to.  And finally, as was said by others, I'm not sure where you live but many cancer centres have psycologists or social workers who can speak directly to family members.  I also gave my teens that info.  And you'll see that your kids will each react and process differently and you just meet them where you are.  My son said nothing, gave me a hug and went back to playing video games!  And he didn't want any details.  He never called either his aunt or friend but he did reach out to his own school friend who he knew had a mom with breast cancer.  That's what he needed.  My daughter cried and hugged me and then went to her room.  When I went back in to see her later that night, I said that we would get through this together.  And she said, "ya, I know, mom, you're one tough chick!"  Ha, ha.  That was the sweetest thing and I knew that my kids were going to be alright.  And you are a 'tough chick' too.  After getting the diagnosis, telling the family is the hardest thing.  The other thing that worked for me is that I only told a small circle of people in person.  It just got too hard.  I set up an email group that I called my Circle of Care.  I told them all by email.  That may seem impersonal but again, I couldn't face them all and forever have their look of shock in my memory.  So I explained that to them, and every single one said they understood and no one was offended or in the least bit upset that I didn't tell them in person.  So you do what you need to do.  Tell people in person if you need to but don't face anyone if you just can't do it.  

Hang in there, take it one day at at time and take all the support, from all corners, that you can!

Re: New Members!

Posted by Janegj on Mar 15, 2019 9:37 am

Hi Everyone,

So glad that you have found this site. Everyone is so thoughtful, supportive and understanding.
Jane

Re: New Members!

Posted by LPPK on Mar 15, 2019 11:16 am

Hello CJohnson‍ .   To tell family that you have cancer can be a difficult decision.  I've had two different experiences with telling my grown children that I had cancer.  When I was diagnosed and had a spot of melanoma removed, no other treatment needed, I did not tell my three children (aged 26, 28 and 30 years).  When they noticed the scar on my arm they were very angry that I had not told them. In fact, only my husband knew about it.
So, when I had a call back for a mammogram 7 years later I put them in the information loop right from the beginning.  I found not having to keep it a secret helped to lessen my anxiety..  One of my daughters went with my husband and I to all surgery and oncology appointments. My other daughter and son who live farther away were in regular contact and I found that in my case "a shared worry is a burdened halved". 

 

Re: New Members!

Posted by MDM13 on Mar 16, 2019 7:50 pm

Thank you for the warm welcome. 
As a background: Primary Peritoneal/Ovarian Clear Cell, stage 3c, CRS snd HIPEC surgery, NED 5.5 years. 

Re: New Members!

Posted by Hydref on Mar 17, 2019 1:44 pm

Hello...I'm just recently diagnosed, ovarian cancer, and just had a biopsy of peritoneal area.  Seeing my oncologist again on March 29.  So far I've been dealing with everything quite well.  I stay positive and upbeat.  Everyone is telling me how strong I am, but I just want things to move forward.

Re: New Members!

Posted by jens on Mar 17, 2019 3:08 pm

Hello!  My mom was diagnosed with advanced sclc (small cell lung cancer) in January- it is very fast and aggressive- she is now receiving palliative care.  This week she will start cycle 3 of likely 4 cycles of chemo.  My frustration is that my brother and I seem to care more about her well-being than she does- she's not eating great-for-her foods, not exercising- generally hasn't changed any of her habits from pre-diagnosis. I assume she understands the severity of her situation but we don't understand why she's not really doing anything about it. 

Re: New Members!

Posted by Minus2 on Mar 17, 2019 3:30 pm

Hi jens‍, 
I am sorry to hear of your mom's diagnosis.  It's a really frightening time for all of you and I gather from your post, somewhat frustrating as well.  My dad had a lung cancer diagnosis when he was 66 years old and he pretty much refused to follow any of the Dr.'s advice.  He actually lied to the Dr.'s about a number of things in order to be discharged from hospital.  I was so angry with him and with my mom because she wasn't speaking up either.  Now that a number of years have passed and I am older and hopefully wiser about him and who he was as a person, not just my dad, I kind of get it.  His own father passed away from a heart attack at age 63.  My dad said that every day past the age of 63 was a gift and he was grateful for them, but he was going to live the way he wanted.  And I think that when we have news that is really difficult to face, we hang on tightly to the familiar and we resist change, even small changes that are for our benefit.  At the end of the day, we can't make choices for our family - they are in the driver's seat - all we can do is not enable the negative stuff.  But it's really hard.  It may be worth a conversation with your mom to see why she is resisting dietary changes?  Could be it's just too much effort to learn new ways right now, she has enough on her plate.  Cancer is a very demanding word - it takes up way more head space and time than I ever knew - until I had my own diagnosis.  Wishing you all well and strength as you navigate this new world.
 

Re: New Members!

Posted by RickG on Mar 17, 2019 5:12 pm

Hi. We’re new to all of this. My Bride was finally officially diagnosed with aggressive bladder cancer last week of February. We went up and down a few mountains and valleys at the beginning - took  a number of months to get confirmation. Not here to complain about the system - once we joined the ‘cancer’ kingdom, we’re overwhelmed by the sheer size of it. It’s heartbreaking to realize that we didn’t know so many of you were affected by the fear, pain, suffering, anger, hope, courage, love, faith, the heartaches and the victory of beating the disease. I promise that we will never again not keep all of you in our prayers. We’ll pray for healing, for the right care givers, the best doctors, that you never feel alone, that hope never fails you and that no matter the outcome, people will always see the light that shines in you and recognize the beauty of who you really are - despite the fact that you have cancer or walking beside someone you love who is in the battle. We start chemo tomorrow. 12 weeks then two weeks off. Then surgery to remove her bladder and all her ‘woman’ parts. I’m not up with the terminology but in the end she’ll likely have an external port and a bag to catch her urine. She has severe colitis and it’s been out of control for the past few months so that’s as big a concern as everything else. Writing all this makes it sound do ominous but it’s not. We’ve been together for 50 years and we’ve come to understand that the only way we can go through this is to hold out our hands and receive our daily bread. In doing that, we don’t focus on tomorrow, next week, month, year. We focus on today and are amazed by all the blessings we receive today - and there are many if only we continue to look for them. This was a heart dump and I didn’t scroll back upwards to see if it makes sense but let me end with this: I don’t know any of you but I offer a part of my heart should you ever call upon it. We’re all connected you and me and my Judy and we must commit that no one ever walk the valley of the shadow of death alone. 

Re: New Members!

Posted by LPPK on Mar 17, 2019 5:37 pm

Hello RickG‍ and welcome to this site.  Focusing on today is a wonderful approach to life. I can see the love and support between you and Judy in your post. 
Some Canadian Cancer Society booklets that you might find helpful are; Bladder Cancer Understanding your diagnosis,  Coping When You Have Cancer,  Eating Well When You Have CancerListen First and 9 other ways to support someone with cancer,
I send good wishes to you as Judy starts here chemo tomorrow 

One thing that I and many others have found invaluable during our cancer journey was  the blessing of family/friend support. Do you have anyone who can help with the driving to/from treatments and appointments?   

Re: New Members!

Posted by Elsie13 on Mar 17, 2019 5:51 pm

Hello MDM13‍  and Hydref‍   Glad to see you posting here on cancerconnection .  I live in Montreal and  I had a complete hysterectomy in Nov. 2016.  I had ovarian cancer, stage 2.  My treatment was 6 sessions of chemo and 25 sessions of radiation. My last radiation was in June, 2017.   Some of the cancer was clear cell, which is a very stubborn cancer.  I was told there was a 40% chance of the cancer coming back.  So far, all my blood tests have shown no evidence of disease. 
   Hydref, yes, waiting is the worst.  Once your doctor tells you the treatment plan, you will likely feel better about things. MDM13, NED for over 5 years! Wonderful!  

There are some ovarian cancer discussions if you would like to take a look:   https://cancerconnection.ca/discussions/viewcategory/72   

Perhaps  Ingrid_CanOn‍ , princessmaura‍  and sundog‍  will say hello. 

Re: New Members!

Posted by princessmaura on Mar 17, 2019 6:44 pm

hello new members to cancer connection.ca...

Re: New Members!

Posted by ashcon on Mar 17, 2019 7:38 pm

CJohnson‍ - How are you doing? Will be thinking of you on Tuesday when you meet your radiation oncologist.  Have you managed to talk to your sons yet about your diagnosis?

MDM13‍ Congratulations on being NED for 5.5 years!  What brings you to this site at this time?

jens‍ - You've got some wise words from Minus2‍ .  My mother was much the same way as your mother seems to be.  As Minus2 indicates, your head goes to some very unchartered territory when you hear you have cancer, and you really need nothing but support and listening as you try to understand and absorb it.

RickG‍  Thank you for you kind words.  Someone on this site once said that they wished people not yet affected by cancer read through all the posts and discussions so that they would be better prepared for their own diagnosis, or the diagnosis of a loved one, should that day come. 
Prayers to you and your beautiful Bride (I LOVE that you still call her that, after all this time.) and best wished for the start of chemo tomorrow.   I look forward to reading more of your posts, and please pass on my heartfelt wishes to Judy. 

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