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Welcome new members!

Welcome new members!

Posted by Lianne_adminCCS on Mar 19, 2020 2:49 pm

Hello all

We have had so many new members join,  I wanted to send out a big hello and welcome..😀

This is the Introduce yourself forum.

If and when you are comfortable, post a hello below and let us know what brings you here and/or how we can best support you.

You will find this to be a very warm, welcoming and supportive community.

Lianne

Re: Welcome new members!

Posted by Bird on Mar 21, 2020 8:54 pm

A couple of weeks ago I found out that my mom has stage 3 lung cancer 
she starts her radiation and chemo treatments this Monday for 6.5 weeks 
I feeling helpless because I’d like to be there by her side everyday but I can’t 

Re: Welcome new members!

Posted by Cynthia Mac on Mar 22, 2020 9:49 am

Hi, Bird‍ , These are frustrating times, to be sure. Is the reason you can’t be there because of “the virus” or because of your distance from her or something else?

I’m caregiver for my Dad who also has lung cancer, and I’ll no longer be able to go in with him to the chemo ward for his treatment. It does leave us feeling a little helpless.

What other types of supports does your Mom need? Are you able to video call her?
“When the root is deep, there is no reason to fear the wind.” - Japanese saying

Re: Welcome new members!

Posted by Kims1961 on Mar 22, 2020 11:24 am

Bird‍  Welcome and am so glad you posted!  So very sorry to hear about your mom's diagnosis.

Is it you can't attend her treatments due to restrictions from the COVID outbreak or actual physical distance from each other?  Is you mom good with using the internet?  When i did chemo for breast cancer, my centre has free wifi.  I could email/text family members who couldn't be there during my treatment.  Sometimes doing chemo, I just wanted to sleep so they also understood that i would often not communicate during that time as well.  The good news is that there are so many AWESOME nurses/staff who "get it".  They are very helpful during chemo and radiation sessions. 

Where support can really help is after and in between treatments.  That is when side effects can pop up , feelings of fear, nervousness, anxiety or just wanting to connect with other.  Can you make contact with your mom then?  You will find there are many things you can do for her from a "distance". 

Please let us know how she is making out.  Kim
Her2+, ER+ Bilateral mastectomy in 2017, followed by chemo and radiation. Mack and Hannah's mom

Re: Welcome new members!

Posted by Bird on Mar 23, 2020 7:07 am

Good morning 
covid 19 is not allowing me to accompany her into the hospital and for treatments 
I settled her into a patient motel yesterday and stayed overnight.
i will be driving her today for her first treatments 
I’ll be staying with her tonight then leaving tomorrow to head into work 
we will be able to keep contact via FaceTime 

i appreciate any advice on what is yet to come 
 

Re: Welcome new members!

Posted by Faye on Mar 23, 2020 10:37 am

Good Morning Bird‍ 
This is definitely  a very trying time for those undergoing treatment and for family who are trying to support them.
It s uncharted territory a as how to offer treatment to those needing it, keeping patient staff and family safe from coved-19 and still providing the much needed social support to those in treatment.
Will you be able to spend nights with her during treatment? I am assuming she will be doing simultaneous chemotherapy and radiation.
I am a stage 3 lung cancer survivor of 3 1/2 years, so if I can be of any support please don’t hesitate to contact me here or private message.
Faye

 

Re: Welcome new members!

Posted by Bird on Mar 23, 2020 11:10 am

Hi there 
I’m sorry to hear that you went thru this as well but I’m glad to hear you are a survivor of 3.5 years now !!
it encourages me to hear this .
i stayed last night and will tonight 
I will be leaving tomorrow morning to head into work 
she’s staying in Ottawa and I’m in Montreal 
I’m a single mom and right now my son with my dad 
my sister will be coming this weekend for a week 
I know my boss has already told me if I need the time I can take it 

I know everyone is different but how long does the treatments start to effect her 
she started chemo today with radiation 
she’ll have 33 radiation and 5 chemo 

how can I help her and prepare myself 

Re: Welcome new members!

Posted by Faye on Mar 23, 2020 12:08 pm

Bird‍ 
Your moms treatment timeline sounds close to mine.
As you say everyone reacts so differently to treatment. I had different side effects at different points of my treatment. 
I will say although not always a easy journey I would definitely go through treatment again if needed.
You ask how you can help her...from my perspective as a mom I didn’t want my daughters to put their lives on hold so that they could be with me it always knew that when I needed them they were there for me.
The next few weeks will be a tough time for both your mom and her family, sounds like you are willing to do whatever is required. You will know more as the treatment progresses and hoe it effects your mom.
My thoughts are with you

Re: Welcome new members!

Posted by WestCoastSailor on Mar 23, 2020 1:41 pm

Bird‍ 

I had my aggressive chemo/radiation two years ago in June. Sound like a pretty similar regime. My chemo teach nurse went through the list of side effects with a small group of patients. Every one he mentioned, he would look at me and say "Angus, you'll probably have this one." I didn't but it was a scarey moment.

Some things to look out for. Fatigue. It slowly built up over the six weeks. The first two weeks were not too bad. The second two weeks I knew something was going on and by the last two weeks I spent a lot of time sleeping and had to really muster energy for my morning and evening walks. They dwindled down to around the block was all I could manage. And it took about six weeks after that to come back up at which point they lopped off my breasts but that is a different story.

Appetite and eating. Part of my issues were that the tumour was close to the esophagus and it got a burn side swiping it. That meant I had difficulty swallowing. My special case. Even so I got a referral to a dietician to boost my calories and protien intake. Things are dying and trying to repair themselves in this process and it takes a lot. My intake requirement went from a daily 1800 calories to 3000. We called it the "See Food" diet. If you see food, eat it. Meeting a daily requirement for a 100gms of protein a day was particularly hard. But I've talked elsewhere on the site about how that happened.

Final comment. I had a complicated little regime of medication that I had to take before and after my weekly chemo infusion. Steriods, antinausea meds... I used a plastic pill manager to help me with that. Helping your mother get that setup on a weekly basis may be something that she would appreciate help with.

Stay in touch. Let us know if things come up that you would like some support on.

Angus
My story: http://journey.anguspratt.ca

Re: Welcome new members!

Posted by Lianne_adminCCS on Mar 27, 2020 7:12 pm

Still lots of new members joining us.

Feel free to post here and introduce yourself when you are ready.
Let us know what brings you here and how we can best support you

Lianne

Re: Welcome new members!

Posted by Cynthia Mac on Mar 28, 2020 10:47 am

Hello, new members - I want to echo Lianne_adminCCS‍ ‘s welcome, and offer a few helpful tips.

To tag another member, type the @ symbol, then directly start typing the person’s name (no space, like this @Cynth). After 3 characters a drop down will appear with other names starting with Cyn... if you don’t see the right one, keep typing...by 5 or 6 letters, the search should have narrowed down the list so you can see the one you want. Click on that and their name will appear in blue. When you hit “send,” or “post,” they will get notification that someone has mentioned them.

Explore the site when you have time - there are discussions for specific types of cancer and sometimes different types of cancer within the groups (for example, small cell and non-small cell lung cancer). There’s also a topic for caregivers, and some of the posts there contain some really helpful information.   

I also encourage you to try the search function - wherever you come across a magnifying glass, try it out.

If there are personal experiences you want to share, but aren’t comfortable putting them on an open forum, you can join a group. Somewhere on your screen you will see a little “hamburger” icon (a box with 3 lines in it - under the word “Francais” in the photo). When you click on that, you will see a drop down. Select Groups (highlighted in the screen shot below), then you can join Man Cave (our men only space) or Ladies’ Retreat (just for us women.)

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Welcome. You’ve found a place of support.
“When the root is deep, there is no reason to fear the wind.” - Japanese saying

Re: Welcome new members!

Posted by Hydra on Apr 23, 2020 4:00 pm

Hi, I'm new to this site and am looking for others who might be advocating for the reopening of operating rooms for cancer surgeries in Ontario. I was diagnosed with Infiltrating Ductal Carcinoma in early February, 2020. The first step was supposed to be surgery both for treatment and diagnosis. My surgery was scheduled for April 17, 2020; but on March 17th, I learned that it had been cancelled due to the Covid 19 epidemic. I have been contacting my MPP, the hospital and Cancer Care Ontario ever since, as recently as yesterday, and none can give me any indication of when surgeries might resume. Is anyone else in a similar situation? Or has anyone been able to receive surgery during this time? Does anyone know of any group trying to advocate for the resumption of surgeries?

Re: Welcome new members!

Posted by Peterpatch on Apr 23, 2020 5:21 pm

I have Invasive Ductal Cancer. I too was on hold for my lumpdectomy and sentinel biopsy and being routed to an oncologist for hormone therapy instead. The first of March my surgeon said that she thought she might be able to get me in for the 1 hour surgery in 2-3 weeks. Then it was wait wait wait while the hospital prepared for the Covid-19 but they were not overwhelmed with patients. Our community has worked hard to stay home. On April 14th I had a physical with a surgeon, completed pre op papers and had the rest of my pre op completed over the telephone. I think it really helped that I was willing to have nerve blocker instead of general anesthesia and I was an outpatient. I had my surgery April 16th, my pathology report will be May 6th and telephone call with oncologist on May 7th to prescribe my hormone meds. A radiation oncologist is contacting me as well in a couple of weeks. Everyone told me how lucky I was to have my surgery. PRHC staff were amazing!! Good luck that your surgery is sooner rather than later. I can honestly tell you what an emotional roller coaster it is. Such a hurry up and wait wait wait when you just want to get moving on your treatment. This site us amazing. Feel free to contact me. Linda

Re: Welcome new members!

Posted by yonigenge on Apr 24, 2020 10:38 am

Hello everyone.. Two days ago my family found out that my Dad has lung cancer. It was a complete and utter shock, made even more frightening by the current state of our world due to the COVID-19 pandemic. It's been over a month since I have been able to spend any quality time with him and Mom (we live 10 minutes apart) and even now I can't help but wonder how much time I will get with him, at all. I also suffer from anxiety/panic disorder, so this complicates things a little more. Each day we are finding out a little more about the prognosis and state of the cancer, its origins, the treatments. It is all foreign to me as I have never gone through this battle with anyone close to me. My Dad is almost 78 (but has been extremely active his entire life- only just retired a couple of years ago) which, obviously, is a concern as he receives treatment. Our conversations, since finding out, have been light-hearted and positive. He's got strong support behind him from family and friends. I have a strong faith, and believe in the power of prayer, so there is nothing lacking in that department. Overall, there is strong will and determination in him, which makes it easier for me to believe in a full recovery for him. As we proceed further into this journey, of course, expectations will become more clear, at which point we will adjust our course accordingly.

My hope is that I can share stories, concerns and updates with a group of people who understand what we are going through. Eventually, I also hope to be the source of support and guidance for others who will, inevitably, experience the same in the future. (although hopefully out from under the dark blanket of the pandemic and social distancing) 

So thank you for starting this community! 

Re: Welcome new members!

Posted by Wendy Tea on Apr 24, 2020 11:05 am

yonigenge‍  Welcome. What a great first post. I am saddened by your dad's diagnosis.  There are many parts of the site that will interest you. Please explore Forums and Groups.  You will find patients,  recovered patients,  and caregivers, all of whom are eager to help and guide you. I invite others to jump in to guide you during this time.
Healing takes time and opportunity. Wendy Tea

Re: Welcome new members!

Posted by Brighty on Apr 24, 2020 1:04 pm

yonigenge‍  welcome.  What a wonderful son  you are .  I'm so sorry  for your dad's diagnoses.    And at such a difficult time.      You will find much support  from the community  here.    I would like to introduce  you to a few  members  who will be able to help you.  Cynthia Mac‍  has been taking care  of her dad who has lung cancer.    She can give you tips on how she cares  for him in times of covid.    WestCoastSailor‍  and Faye‍  and Rayline‍ are  a few people  I know  who have gone through  lung cancer treatments.      There are many others who I'm sure will join in to help you out.    Some tips for you.... self care.....a good support system. .. exercise. .. keep up healthy  eating and sleeping habits... live in the moment.     Take things day by day and minute by minute.    Keep keep us updated as you learn more information.   Lean on us for support.        There is a wealth  of knowledge  and incredible  people  on here.      
Help is out there. All you have to do is reach out.

Re: Welcome new members!

Posted by Lianne_adminCCS on Apr 24, 2020 1:39 pm

yonigenge‍  welcome to the community.
Thank you for sharing and trusting us with your dad's diagnosis. It is challenging to hear of a parent's diagnosis and it is certainly compounded by the distancing protocols that are currently in place. I have been both a cancer patient and caregiver ( to both patents and a sister) and as difficult as my experience was, it was almost more so to watch my parents go through it. Even when we were near, there is a sense of helplessness.

We have plenty of members who understand and been where you are. You may want to have a look at some of our discussions like:
Lung cancer - https://cancerconnection.ca/discussions/viewcategory/68
Caring for someone with cancer - https://cancerconnection.ca/discussions/viewcategory/35

Please keep in mind that everyone's experience is different. There are so many variables that determine what type of treatment will be recommended as how one will react to treatment.

I am glad you reached out. 

Lianne

Re: Welcome new members!

Posted by yonigenge on Apr 24, 2020 2:12 pm

I thank you all so very much for reaching out and welcoming me. In these first couple of days, while struggling with my own denial and thoughts of Dad not being around anymore, my main concerns are for his own mental well-being. He's a very proud and capable man. He is very active in the community and well-known/respected by others. He's been my rock, and man based on whom I model my own fatherhood/manhood. He's the best man I have ever known. And now I know he is in pain and struggling with his own mortality.. hearing him get choked up on phone calls breaks my heart. I want more than anything to be his rock now. He takes care of their (Mom and Dad's) property and as I mentioned, has been an extremely active person, perhaps more so into his senior years. For that reason, I have such optimism that he can win this battle and be an inspiration to others in doing so.

Helping out with physical activities will not be a challenge.. I grew up on the property and will be there however I am needed for both him and Mom. With that said, I guess my primary desire is to be a source of emotional support, keeping him as strong as he has kept me.

Hearing from all of you, I know, will be key in helping me achieve that. So thanks again.. I really do look forward to sharing with you.

Re: Welcome new members!

Posted by Faye on Apr 24, 2020 3:18 pm

yonigenge‍ 

Welcome to the forum but sorry you need to be here. I hope we can provide you with the support you need in order for you to support your Dad.

I am a 3 1/2 year lung cancer survivor, so if I can be of help Please don’t hesitate to contact me.

Do you know the type of lung cancer or do you know what the treatment plan is yet.
If you share that info I may be able to give you some support with that.

I realize in this time of Covid it is very frustrating trying to navigate not only the medical aspect but also the emotional support a family needs at this time.

It sounds like you are providing as much support as you are able at this time, so continue to do what you can to show them they are not alone with this.

I hope your dad will soon have a treatment plan as I found it much easier when I had more answers and a plan in place.

Continue to post and we will definitely support you as you and your family continue down this road 

Faye
 

Re: Welcome new members!

Posted by Yukoncamper on Apr 24, 2020 5:40 pm

Hello All,

Thank you for being on this forum.  Having community is so incredibly important I am finding.  I am new to this community.  Last week I found out that my cancer from 2013 had metastasized into my lungs.  I have started radiation and will being Chemotherapy in May.  I am shocked, angry, bewildered but trying to remain hopeful and positive for the fight.  There are so many questions worries concerns that come with it.  I am hoping that this community will be able to provide first hand experiential input on some of the queries that lie ahead. 

Warm blessings
Yukoncamper
 

Re: Welcome new members!

Posted by Rayline on Apr 24, 2020 10:58 pm

yonigenge‍, I feel for you and and your family, getting a lung cancer diagnosis is extremely challenging. I was diagnosed with lung cancer last year and I really believed that was the end of my life. I could not  sleep  or concentrate I was too traumatized with the diagnosis. My daughter was such a fabulous support for me. She let me talk about my fears of death and my mortality. I know that was hard for her and sometimes when I would try to protect she would say Mom you can tell me whatever. Because I was not feeling positive at the beginning, I was worried to death. One year on and I have learnt so much and do not feel that way any longer. I do not know what your Dad needs but I just want to reassure you that you can be a great source of strength to him.

Yukoncamper‍ what a curve ball you have been thrown my heart goes out to you. How are you feeling? I am sure things must seem bleak right now to have to go through treatment all over again and to try to pull yourself through cancer yet again. I as so hoping you can find some comfort as I am sure you have a lot of strength.   
I hope you keep in touch. Please remember that you are free to let your hair down here. We are here to listen and walk with you on this journey. Sending you hugs and prayers. 🙏

Re: Welcome new members!

Posted by Sharon111Nrg on Apr 25, 2020 3:24 am

Hi all, Diagnosed in January, underwent Whipple surgery and finally able to join this community and read up on my condition with all the info I picked up in the hospital. 
During my recovery from this intense surgery, I had zero energy to read, just base energy activity. 
I am now taking chemo meds via pill form. I look forward to sharing and participating in the discussion groups. 
Sharon

Re: Welcome new members!

Posted by Cynthia Mac on Apr 25, 2020 8:44 am

yonigenge‍, your dad is the same age my dad was when he got his diagnosis. I can tell you, this isn’t a “straight line” journey, and every case is different, but 2 1/2 years later, my Dad is still going, although, he is now in a different type of treatment, because his cancer returned last summer. 

Your Dad sounds a lot like my Dad - active, keeps busy all the time, and people respect what he has to say. That strong will and determination goes a long way at a time like this.

You mentioned that you have anxiety disorder, and that knowledge says to me that you’ve worked with some professionals over time who have given you “tools” to work with that (including your faith). I recommend you dig out/ dust off/ brush up on your toolkit to keep your mind as serene as you can make it. I’ve been practicing mindfulness and meditation for many years, and I had to do that when this whole covid thing started, knowing what it could do to our family.

As for spending quality time with your dad, I’ve seen some pretty creative things done on Zoom conversations, such as setting up cards so the distanced person can see them but the “dealer” can’t, playing music together, and even just reading together. You can do other things, too - cook up meals or bake cookies and do a “door drop,” for example. This has the added bonus of keeping your mind off things. This pandemic has made people get very creative, so you can channel some of your “worrying power” into “creative power”

I have “walked your next mile” already, and I’m here to offer any help I can.
“When the root is deep, there is no reason to fear the wind.” - Japanese saying

Re: Welcome new members!

Posted by Cynthia Mac on Apr 25, 2020 8:48 am

Yukoncamper‍ , I mentioned in my last post about my Dad having metastasis. In his case, it’s lung cancer that has moved to his liver. I expect that it’s very normal to feel the feelings you’re having, and it’s good to hear that you’re still prepared to fight.

Welcome to Cancer Connection. Ask away. And to you, Sharon111Nrg‍ !
“When the root is deep, there is no reason to fear the wind.” - Japanese saying

Re: Welcome new members!

Posted by Whitelilies on Apr 25, 2020 11:21 am

Bird‍ Hello
Welcome to this site....and sorry for the reason to join.

You CAN "be with your mom" in many different ways.....well....not in-person.....but you CAN call her often, wish her well before she gets treatment....once she is home.....email her often....drop off at her doorstep her favourite book, coffee, meal etc.....you CAN SUPPORT her....

Just get creative.....

A friend, who lives in Montreal.....sent me a journal, so I could write my thoughts down.....when I felt like it! (4 am)

Perhaps your mom would like a journal...a book.....a magazine/hobby.....for gardening, etc.....to distract even.

We are ALL listening......to offer supports.

Warmly
Lillian

Whitelilies