Posted by Lianne_adminCCS on Mar 19, 2020 2:49 pm
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.
Posted by Cynthia Mac on Mar 22, 2020 9:49 am
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?
Posted by Kims1961 on Mar 22, 2020 11:24 am
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
Posted by Bird on Mar 23, 2020 7:07 am
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
Posted by Faye on Mar 23, 2020 10:37 am
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.
Posted by Bird on Mar 23, 2020 11:10 am
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
Posted by Faye on Mar 23, 2020 12:08 pm
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
Posted by WestCoastSailor on Mar 23, 2020 1:41 pm
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.
Posted by Cynthia Mac on Mar 28, 2020 10:47 am
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.)
Welcome. You’ve found a place of support.
Posted by Hydra on Apr 23, 2020 4:00 pm
Posted by Peterpatch on Apr 23, 2020 5:21 pm
Posted by yonigenge on Apr 24, 2020 10:38 am
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!
Posted by Wendy Tea on Apr 24, 2020 11:05 am
Posted by Brighty on Apr 24, 2020 1:04 pm
Posted by Lianne_adminCCS on Apr 24, 2020 1:39 pm
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.
Posted by yonigenge on Apr 24, 2020 2:12 pm
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.
Posted by Faye on Apr 24, 2020 3:18 pm
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
Posted by Yukoncamper on Apr 24, 2020 5:40 pm
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.
Posted by Rayline on Apr 24, 2020 10:58 pm
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. 🙏
Posted by Sharon111Nrg on Apr 25, 2020 3:24 am
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.
Posted by Cynthia Mac on Apr 25, 2020 8:44 am
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.
Posted by Cynthia Mac on Apr 25, 2020 8:48 am
Welcome to Cancer Connection. Ask away. And to you, Sharon111Nrg !
Posted by Whitelilies on Apr 25, 2020 11:21 am
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.
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