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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
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.
Thank you again for the support and the suggestions.
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.
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
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.
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,
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 A291ER Thumper Rayline Nicky01 Alexa Faye MommyT Bear1
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
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!
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?
Thanks again, the thoughtfulness is appreciated
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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!
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.
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 👍
You have the best support person on your side! Please keep us updated on how it goes on Monday.