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Welcome new members Oct 18-26

Welcome new members Oct 18-26

Posted by Lacey_Moderator on Oct 26, 2020 4:07 pm

A big welcome to all our new members!

Take a moment to say hello below
  • What brings you to CancerConnection?
  • Do you have any questions for the community?
  • Who are you hoping to connect with?

Re: Welcome new members Oct 18-26

Posted by rivers on Oct 26, 2020 4:42 pm

Thank you Lacey_Moderator‍ for this.

I'm a new caregiver for my partner who was recently diagnosed with stomach cancer that has metastisized. They are saying stage 4 and "incurable" but that is not the mind-set we would like to have. We are in between the testing and 1st meetings with oncologists, and he's back in the hospital with an infection and severe dehydration from fluid draining.

We are doing all we can (we have family and some friends support) but, I'm constantly asking myself what more can we do?
What should we be doing?
Hard to find that balance between appreciating every moment and day together (which is hard during these COVID times when hospital visits are not allowed) and maximum activity for progress. 
What is the process for finding 2nd, 3rd opinions? I've read that our health team would do that for us, but don't understand how that works. 

I've been reading everything I can find, and was trying to get him stronger before he ended up in the hospital just now again. I'm hoping after our first meetings we will have a better sense of what to be aiming for, but also concerned the health team will not share our goals. Doing research on other places for treatment (with help from friends), but there are kids involved too and then it's balancing being away from them.

Of course the underlying thing is the heartbreaking fact that this wonderful human being might not have the time on earth that we all expected.

I would love to connect with anyone, but helpful to hear from people who have experienced stage 4 stomach cancer, or how to deal with or find a health time that has our goals.

Thank you for this forum and for all of you that have shared so much that I've been reading so far
Rachel

Re: Welcome new members Oct 18-26

Posted by Brighty on Oct 26, 2020 6:31 pm

welcome Rachel2021‍  and thank you for having the courage to introduce yourself to the community.     I'm so sorry for what you are going through.      Nothing can prepare a person for such a diagnoses,  or the emotions that a caregiver is about to go through.    Loving the person so much, being terrified, not wanting to give up hope, guilt, constant guilt.   Asking yourself if you are doing enough, what more can you be doing?   And the utter exhaustion of it all.     But just being there,  by showing your love and support is all you can do.....and you are already doing that.   It is not easy for anyone and my heart goes out to you.     
     What is it that makes you unsure that your health care team does not have the same goal as you do?  Did you get any indication or an uncomfortable feeling?    You have every right to get a second opinion if you want to.     Perhaps your family doctor, or one of the specialists your husband is seeing now can send a referral.     Have you thought about some questions you might want to ask during your appointment?   We can always help you out with that.      
     I am glad to hear you have family and friends for support.     Lean on them and let them help you in any way that you need.    Let them know specifically what you need done, such a meals delivered, someone to drive him to treatments, someone to drop things off at the door, someone to be the 'communicator'.     You may want to designate one person to send out emails to keep others updated on how he is doing.    Things like that.     
      I was a caregiver to my fiance who had stage 4 Esophegeal cancer and can relate to all the emotions and fear that must be going through your mind.      Sometimes you have to take things day by day, hour by hour and take breaks.     Are you working now or will you be caring for your husband full time?    Do you have any hobbies or things that you can turn to for distractions?   You will need that too, you will need the break,and you will need to take care of yourself too.       Sometimes, I had to just look at pictures on my phone of my cat, or watch my soap operas to get out of my head for a few hours per day.     Whatever it takes, do whatever it takes to keep yourself sane and not fall apart.       You have our full support here so don't hesitate to lean on us.      
Help is out there. All you have to do is reach out.

Re: Welcome new members Oct 18-26

Posted by rivers on Oct 26, 2020 8:32 pm

Brighty‍ thank you so much for this. I'm so sorry to read about your fiance. I can't imagine how heartbreaking that was/is...it helps to know that you and so many people here understand exactly what I'm feeling. Doing my best to balance taking day by day, hour by hour with positive action and trying to take care of myself so I can be completely present with him whenever possible.

Thank you again for the support and the suggestions.

Re: Welcome new members Oct 18-26

Posted by Milkshakes on Oct 26, 2020 10:28 pm

Hey guys first thank you for the advice so far... it's very helpful and allows me see things from a different perspective.  Well I'm here because my ex has cancer and we recently broke up.and it's hard to deal with the emotional, wanting to be there for her but essentially feeling pushed away in sorts. So basically just want to understand how I can be there for her.... there's a lot emotions. I think everything falls into place. The important thing is for her to get healthy and whatever we had/have its 3erd place because she has 12 year old son ... I'm staying positive though.  Thank you for the perspective.

Re: Welcome new members Oct 18-26

Posted by Cynthia Mac on Oct 27, 2020 8:38 am

Welcome, Rachel2021‍ And Milkshakes‍ (Love that user name!)

I was caregiver for my father who passed away this year at age 80. Dad had metastatic lung cancer, but he died of another cause. As Brighty‍ said, it is going to be important for you to maintain some pursuits of your own, and be able to find “pockets” of time where you can give yourself care. This will prevent what we call “caregiver burnout.” 

Rachel, your question about finding the right balance when your loved one has a stage 4 diagnosis is so poignant. I’m going to tag two men who went through this with their beautiful ladies: WestCoastSailor‍ And CentralAB‍ .  I stand in awe of the work these gentlemen put into their caregiving roles.

Milkshakes, the added emotions of a recent separation no doubt have you walking through an emotional landmine right now. Be kind to yourself as you navigate it. It sounds as though your “ex” might have a prognosis for recovery, and I hope that’s so.

One way you can be there for her is to listen. Listen to what her needs are - does she need a ride to a treatment? Does she need a few groceries brought over? Does she need a new computer? Does she need someone to explain things to her son in an age appropriate way, or someone to take him to a park and toss a ball around for a couple hours? If you can, try to “listen between the lines,” and if you hear something, offer suggestive feedback, For example, if she says, “I don’t know with to do with “johnny” this weekend,” you could say, “Would it help to have him come over and play X-box for a few hours on Sunday?”

There is a discussion thread on the site for caregivers which I hope you will check out. https://cancerconnection.ca/discussions/viewcategory/35

Although I’m sorry for the reasons that have brought you here, I hope you find information that will help support you through this part of your journey.
“When the root is deep, there is no reason to fear the wind.” - Japanese saying

Re: Welcome new members Oct 18-26

Posted by Milkshakes on Oct 27, 2020 9:31 am

Thank you Cynthia for the feedback, I really appreciated. I really hope this gets her on the track. I will Definitely look into that thread. 1 day at time. Thanks  again. Stay safe and be well.

Re: Welcome new members Oct 18-26

Posted by Jovul on Oct 27, 2020 5:02 pm

Hello, my dad was diagnosed with stomach cancer in July. They haven’t told us a specific stage but that it has not spread anywhere and it is a distal tunour which is favourable. They “intent is curative” -  the exact words by dad’s oncologist and words that have given us hope and we are clinging on to that. Dad is doing 4 rounds of FLOT chemo, surgery, then 4 rounds of chemo again. He is just gearing up for his third chemo. The diagnosis has shocked and devastated us all. It The prognosis is hopeful but we living in fear. It is heart breaking to see my wonderful dad going through this, and my mom alongside as his primary caregiver.  We are scared of what surgery and post surgery will look like. They plan to take out 2/3 of his stomach out. I joined here to read others stories that have found themselves in this unfortunate circumstance. Hugs and prayers to you all. <3

Re: Welcome new members Oct 18-26

Posted by Essjay on Oct 28, 2020 8:28 am

@Jo.V. (I’m sorry I don’t seem to be able to tag you - Lacey_ModeratorLianne_Moderator‍ please advise)...welcome to the site.

i hope you’ve had a chance to look around at the forums, where you will find others like you who are dealing with a loved one with cancer. There’s a forum for caregivers and you may find you can connect with other stomach cancer patients or their caregivers there or through the digestive cancers forum and the treatments and side effects forum. Plus the Canadian Cancer Society has a number of downloadable booklets that are helpful including on specific cancers. Caregiving, going through chemo, eating well and more https://www.cancer.ca/en/support-and-services/resources/publications/?region=mb

Do you have any specific questions - there’s usually someone online who will try and help.

best wishes to you and your family, Essjay
Triple Negative Breast Cancer survivor since July 2018

Re: Welcome new members Oct 18-26

Posted by Newman on Oct 28, 2020 11:55 am

Hello, I would like to introduce myself. I am a 55 year old recently diagnosed with testicular cancer. I had an Orchiectomy in September, and was diagnosed with Non-Seminona Embryonal Carcinoma. It appears that I caught it early, the tumor was 2 cm and has small spread to the blood vessels, I have had my first oncology appointment. At this point it is going to be a wait and see approach. I was advised that because of my age combined with the lung issues some of the drugs used for chemo can cause severe lung issues. Scans were clear except for a couple of very small things which we are monitoring. More scans and blood in 2 weeks to see where we are. I am active and in fairly good shape, and still finding it a little surreal to be honest. Cancer is what other people or relatives get. Like many others my family has been incredibly impacted by cancer, my son was diagnosed with a malignant brain tumor when he was 4 months old, thank goodness to the doctors and nurses at Toronto sick kids and the strength of my wife, he will be celebrating is 30 birthday this year and has no issue as a result.
I am glad I found this site, I am a positive person and I find this site to be very inspirational and educational. Thanks for reading.

Re: Welcome new members Oct 18-26

Posted by Lacey_Moderator on Oct 28, 2020 12:34 pm

Hi  Jo.V. 

Welcome to our community. We can't tag you because of the period within the first three characters of your username. To change this click Dashboard-My account and select a new username. Tagging is an important way to stay in touch with other members. 

If you have any questions please let me know,
Lacey

Re: Welcome new members Oct 18-26

Posted by Essjay on Oct 29, 2020 9:17 am

Newman‍ welcome to this awesome community. You have a lot on your plate with two cancers to deal with, but we are all here by your side.

I hope you’ve been able to find the Testicular cancer forum, where there will be a range of information about that cancer. I’m going to tag Iggy331‍ who has been dealing with this disease and Trillium‍ who is supporting her son through it.

And then there’s the Lung cancer forum where there’s lots of activity on lung cancers. I’m going to tag a few folks, some are newly diagnosed and others are in treatment or have completed it and are being monitored And I hope you can make some connections A291ERThumperRaylineNicky01AlexaFayeMommyTBear1‍ 

Positive attitude is a great attribute when facing cancer as your experience shows, but it’s safe here when things get a bit much.

How are you doing today? Anything we can help with?

best wishes, Essjay
Triple Negative Breast Cancer survivor since July 2018

Re: Welcome new members Oct 18-26

Posted by Nicky01 on Oct 29, 2020 11:22 am

Newman‍  First of all I am sorry for what brings you to this community and I can tell you that you have found a safe place to land amongst all of us. A cancer diagnosis is not an easy thing to deal with, like you said and what most people think....cancer is something that happen to other people, that is until it happens to you!  
Now a little bit about me.I am 67 years old.  In July I was diagnosed with a 2 Cm lung tumor and at first I thought my world was going to fall apart, I have always been a positive person and after a few days I realized that I was one of the lucky one because I had been told that at 2 Cm it meant that I was caught at an early stage and that I had a very good chance of beating this. I had a VAT lobectomy surgery in September where they removed the upper right lobe , the tumor and lymph nodes and I was told on October 8 that I am NED ( no evidence of the disease. I too was also told  that I would probably need some treatments after the surgery but because the tumor was caught early I do not need any treatments....just follow up scans for 5 years.

Keep in mind that your tumor is still at an early stage and it sounds like you have more tests to go to and you are being well monitored. The fact that you say you are a positive person is going to be of tremendous help to you, try to draw energy from that positivity to get you through the next few weeks, in the meantime keep reaching out to this community and if it is something you would like to do...keep us updated with the  future development on your condition. I am happy to hear that your son is still healthy  and thriving after all those years!!
You are not alone in this, you have a lot of people here willing to help any way we can even if it is just to vent, chat, listen, we all care!  

 

 

Re: Welcome new members Oct 18-26

Posted by Trillium on Oct 29, 2020 5:22 pm

Hello Newman‍  - Thanks for posting and sharing with us. This is a very supportive place for you to land. My  Adult son (40) had stage 3 testicular cancer but has been deemed “cancer free” by his oncologist after he finished his last treatment Recently. No evidence of disease (NED) is another term used.  

The chemo regime was tough but his side effects were not as bad  as we had feared. Mostly fatigue, dry skin, no taste with food and hair loss. His white blood cell count dropped at one point but the meds to prevent this from happening again worked well and the pre-chemo meds helped with preventing other side effects. He drank lots of fluid before and after to protect his kidneys from the chemo. We followed the instructions from the pharmacist and kept it all in the new patient folder which was handy to have.

He also had a radical orchiectomy of his right testicle which had a 9cm tumour. 

Covid 19 was in full swing by the time he started chemo so due to his disability which can make it hard for him to organize or keep straight all of the things that needed to take place, I was allowed to accompany him in the hospital and to his appointments. He had a covid test at the first oncology appointment.

I hope the chemo can work for you too if it is needed. The scans are difficult when waiting to hear if things are ok or not. I felt that part the most difficult. He has his first follow appt next week and we did the blood work today. 

So good to hear that your son is doing well after that difficult time with cancer. When is your next appointment?

Re: Welcome new members Oct 18-26

Posted by Newman on Oct 29, 2020 6:49 pm

Thank you Essjay, Trillium, Nicky01 for reading and responding, I may have been taken out of context. I do not know at this point what the “nodes” are on my lung, the CT scan showed them as too small to tell what they were. I also have 2 small “nodes” on my liver also too small to tell what they are. I have tumor marker tests and CT scans again on Nov 10, then follow up at the oncologist on Nov 16, let’s hope the “nodes” haven’t grown. Started having pain in my other testicle, for the last couple of days. I am also waiting for another ultrasound to see what that’s all about. All in all staying positive, it’s the only thing I can control at this point :)

Thanks again, the thoughtfulness is appreciated 

Re: Welcome new members Oct 18-26

Posted by Trillium on Oct 29, 2020 9:35 pm

You are doing the right thing by staying positive, Newman‍. This cancer is very treatable we were told. Im hoping that after the chemo and with no more "spots" that my son will be in the clear the rest of his life. Im tryng not to worry about the oncology appt. His appt is by phone so we will use the speaker so we all can hear. The appointment is Nov 10th as well! We can update each other!  Of course only if you feel up to it.

If you have any questions about the site etc. Just ask.

Take care
Judy 

Re: Welcome new members Oct 18-26

Posted by Essjay on Oct 29, 2020 10:59 pm

Newman‍ sorry for the misinterpretation! Let’s hope those nodules are nothing. Essjay
Triple Negative Breast Cancer survivor since July 2018

Re: Welcome new members Oct 18-26

Posted by MommyT on Oct 30, 2020 7:25 pm

Newman‍ I am sorry that you have the need to be on this website/forum. It certainly throws you for a loop when you get the diagnosis. I kept telling my doctor, oncologist that I thought they had the wrong person because I am so healthy and didn't feel like I was sick.
I've finished my chemo and radiation for my lung and am doing well. I just had a ct scan and there is likely some inflammation in my lungs as a result of the radiation. The lymph nodes are clear and the cancer has not spread elsewhere (thank goodness). I will likely be starting immunotherapy (every 2 weeks) in mid to late November.
In the meantime, I'm staying positive, walking with my nordic poles - between 2-1/2 and 4-1/2 miles every day, and did I say, staying positive, and praying!
It is sometimes so easy to go down that rabbit hole, but you need to pull yourself up and give yourself a shake! My doctor prescribed me adavan, and I take 1/4 pill if I feel the need for it, but since I've finished treatment in mid September, I've only needed to take it once.
Hang in there! Try to keep positive. The folks in this forum/website are so helpful, so positive. They have calmed me many times.
Never give up on HOPE because MIRACLES happen every day!

Re: Welcome new members Oct 18-26

Posted by Iggy331 on Nov 8, 2020 6:03 pm

Hi Newman‍ nice to meet you. Like you, I also had testicular cancer. Much like you I also caught it early. And to further the similarities, I also had some small nodes on my lungs. I have so far stayed in remission since my surgery, though the nodes on my lung require me to have close follow ups. I went in every other month for the first year and now am up to every 3 months. Everyone’s treatment, regardless of the type of cancer, will be different. The mental aspect however is very similar between us all. I won’t lie to you, I struggled mentally (and I still do some days!). I encourage you to reach out when needed, you have found a great community here on cancer connections. I’ve yet to meet anyone that wasn’t available to help or chat. Feel free to reach out any time to me if you have any questions or just need to vent. I understand what you are going through. 

Re: Welcome new members Oct 18-26

Posted by Trillium on Nov 20, 2020 6:56 pm

Hello Newman‍ - How did your follow up appointment go on the 10th? My son’s bloodwork was good so now we just do a ct scan and more bloodwork in 3 months. He was relieved as were the rest of the family.

Re: Welcome new members Oct 18-26

Posted by Newman on Nov 20, 2020 7:42 pm

Hey Trillium that is great news, my appointment could have gone better, but it also could have been worse. The testicular cancer has mestasized to my left lung. So I had 2 “nodes” and only 1 has grown, it has basically grown 50% in 6 weeks. I am clear everywhere else so that’s good. I start chemotherapy on Monday. Doc says she is going to hammer me with chemo, I am doing Monday-Friday 4 hours each day then off for 2 weeks then repeat, 4 rounds total. I am doing the extra week so we don’t have to use the bleomycin which at age 55 could be lethal. So that’s good.

Re: Welcome new members Oct 18-26

Posted by Trillium on Nov 20, 2020 8:06 pm

Newman‍ - I can imagine the anxiety that caused you. My son had stage 3 with spread as well but the chemo did kick it. Thank goodness for chemo! The bleomycin hit him harder each time he had it. He had no pre-treatment meds for that one. Sounds like you are in very good hands. All the best on Monday. They give folks cozy warm sheets if they get chilled in our cancer centre. Do you have someone to drive you?

Just wanted to make sure you saw Iggy331‍  ’ post to you here in this thread. He also went through treatment for testicular cancer

Also this post Below in the testicular cancer forum by DViegas‍  who is sharing his cancer story in public to bring support and awareness to other men.

https://cancerconnection.ca/discussions/viewtopic/12219/66635?post_id=335407#p335407

Re: Welcome new members Oct 18-26

Posted by Newman on Nov 20, 2020 10:00 pm

Thanks for the info on the other thread I will defy check it out.

yes I am in great hands my wife of 33 years takes very good care of me hahaha.

thanks for reaching out, much appreciated.

I am actually looking forward to getting going and getting rid of this for good 👍

Re: Welcome new members Oct 18-26

Posted by Trillium on Nov 20, 2020 11:11 pm

Newman‍ - I think most folks feel the same as you with getting rid of the disease and carrying on. I’m just one of many people on this site who want people to be connected to others in a similar situation and feel comfortable talking about their experiences. We all learn from each other’s experience. I was grateful to others who supported me at the beginning of this journey with my son who because of his disability required my help getting through it.
You have the best support person on your side! Please keep us updated on how it goes on Monday.