Posted by Whitelilies on Jan 7, 2021 4:25 pm
Here is a helpful link:
I will tag other members, who can hopefully share their experiences, similar to yourself.
Thank you to:
Much appreciation, to support a new member.
To tag another member, type "@" and the screen name....it turns blue/box, tap, and only they will receive your post.
Posted by elnidojohn on Jan 10, 2021 6:12 pm
My name is John and I'm a caregiver for my wife who has advanced colon cancer at 35. She is being well cared for by her team but is now suffering from a lot of pain and about to start radiation. In the meantime, I'm caring for our two young children at home, mostly alone but with some support from my wife's parents. I've been coping pretty well up until now but have started to struggle with the weight of it all as my wife's cancer has got suddenly become very aggressive. Would love to hear any similar experiences from anyone who wishes to share anything.
Posted by Brighty on Jan 10, 2021 6:46 pm
I'm not big on lists, but they are helpful...........and I am, going to suggest a list..........a list of tasks and a list of people who can help. First and foremost, what needs to get done? You have cooking, household chores, kids on line learning and homework, the kids and your well being. It's a LOT for one person to deal with. Who can help? Meals, can someone cook and deliver for you? Can someone grocery shop for you? Can you get a cleaning service in to help with basic household chores and laundry? Can the kids help out with simple things like basic meals and dishes? It might help them feel involved and helpful.
Do you belong to a religious organization or community centre or anything like that? They might be able to gather troops together to help you out with your needs, deliver meals, shop for you, take the kids for socially distanced walks...or homework.............things like that.
How are the kids coping? A school guidance councellor may be able to talk to them to help them cope with their feelings and fears. They can give you suggestions for how to manage whatever needs arise for them, emotionally, academically and socially. The oncology social worker is also an awsome resource to talk to, to cry to, to vent to, and to get resources for help. They may have an online support group you could join with others going through caring for a spouse with cancer as well as caring for young kids. The social worker can give you suggestions on how to care for yourself too and how to take breaks so you are able to cope with everything.
As well, the pallative care team at the hospital can help with the pain management your wife is experiencing . They are excellent and many people on the site rave about how wonderful the pallative care team is at pain management. I hope this helps you so far. I'm sure others will chime in with their experiences and suggestions. Don't hesitate to keep reaching out if you need anything.
Posted by Whitelilies on Jan 10, 2021 6:58 pm
Yes....your plate is full....I am so sorry to hear of her pain.......
So many wonderful ideas shared already.....
Also.....Perhaps you can peek at:'www.CCRAN.org
a wonderful site, filled with info, clinical trials, diet, support, meds, side effects and if you can, reach Filomena....she is a wealth of knowledge....you will be glad, you reached her. She held my hand, through my tough times. I too am on the colon cancer journey....a tad older than you/your wife (well, probably 20 years, but who is counting?? lol) a shade older.....
Also....at the hospital where she is being treated, there should be a "Patient Navigator".....my hospital l(Toronto) had 2.....they are qualified Nurses, who sole role is to support patients and their loved ones......Nurse for Breast is common...and Nurse, for Colorectal is common. See if your hospital has this person/role on staff.
It is wonderful that her parents are able to help.......the kids are little and need routines kept! They need their world the "same". Hoping grandma and grandpa can do this.
Yourself: please, take a few minutes, each day, for you....a hot coffee, alone, in car, parked near Tim Hortons...a brief walk, daily......or just ME time.....sit in tub/lock that door.
If mommy is not well, resting etc at home.....perhaps prep a few "mini loot like bags" to give to kids, ie dollarama store....crayons and paper in each bag.....so when mommy is resting...you can bring out the "bags"...and give to your kids, and say mommy wishes she could join in the fun, but please color and think of her as she thinks of you.
They will be happy....
Please keep sharing, posting....we are here....we all have different ideas to support you and your wife.....and we all care.
Posted by ceso on Jan 10, 2021 10:32 pm
My dad had a quick month(ish) battle with fast spreading pancreatic cancer. I am doing a lot better now than I was 1.5 months ago. Weekly counseling and gym sessions have got me back on a good path. Furthering my career I want has also made me so determined.
Posted by Brighty on Jan 10, 2021 10:39 pm
Posted by Sammie59 on Jan 11, 2021 7:20 am
So hi, nice to meet you all...sorry the reason sucks!
Posted by WestCoastSailor on Jan 11, 2021 6:01 pm
Do I detect a Spanish nest in that nick name? At any rate, I was caregiver for my spouse who died of pancreatic cancer. I read in the other thread that treatment at this point is palliative and that you are struggling with a lot of decisions. Impending death is hard. Hard for the person facing it and hard for the caregivers surrounding them. There are hard questions. She didn't leave a signed and witnessed will. Fortunately her estate wasn't complicated but there were other hard conversations. Legacy and memorial are important. One of the gifts she left me was a playlist from Youtube that we played at her celebration of life. I describe it as making memories. For me one of my treasured memories from her time in hospice is sharing photos and the video from our wedding. Our anniversary was three days before she died. That we could celebrate this last one together was special.
Introducing children into this is really hard. I recently received a packet of letters written by my mother written fifty years ago. I was seventeen when she died of breast cancer. My youngest brother was six. Sharing the insights from this treasure trove has been immensely satisfying for me.
There is a whole lot of information buried in the "Coping with Grief" group. Part of what you are experiencing is anticipatory grief. Another resource that you may find helpful is https://mygrief.ca and http://virtualhospice.ca also have resources for dealing with palliative decisions.
Feel free to tag me if you have more questions. Know that there are many here who have walked the path that are willing to share the knowledge that they have.
Posted by Cynthia Mac on Jan 14, 2021 8:05 am
My mother was a melanoma survivor - many years ago now - so I thought I’d drop by and just let you know that if you ever need support, you’ll find it here on the site.
Posted by dreamweaver on Jan 17, 2021 10:12 pm
I am a cancer survivor, I had Renal Cell Carcinoma in 2002. I had my left kidney and adrenal gland removed at Victoria hospital in London Ont.
After complaining numerous times this past year of severe pain in my shoulder and left arm my Dr. ordered a X-ray which showed a suspicious shadow in my left lung. A CT scan was then ordered that showed that I have 2 blood clots in my right lung and the suspicious shadow in the left lung. I had a PET scan done which came back inconclusive. The Thoracic surgeon in Hamilton had to cancel his video chat with me until next week, as he had numerous surgeries to perform. My family Doctor did not return my call but his secretary told me I will probably need a biopsy. Since cancer lights up with the sugar injection I had before the scan, I don't understand why the result is inconclusive. Anyone have this kind of result after their PET scan?
Posted by Lianne_Moderator on Jan 18, 2021 3:00 pm
I am sorry you find your self in this state of uncertainty right now. While I have heard of PET scans being inconclusive before, the reasons for that are not known to me. I thought I would share a link with you from Canadian Cancer Society on PET scans to hopefull fill in some information for you
It does mention that not all cancers can be detected that way and that often other tests are performed in conjunction with it for that determination. Maybe that is what will happen for you with the biopsy or another test.
Do you have an appointment for further followup or tests at this point?
Please keep us posted. We are listening
Posted by law on Jan 18, 2021 4:19 pm
Reading all of your posts was very uplifting and bittersweet. I am strengthened knowing you have all begun communicating ---- as this site is an Empathy Pill and full of the kindest people who have been directly affected by cancer.
I have not been a caregiver, nor have I witnessed my child dying; neither role could I remotely begin to imagine.
I did beat the brutal cancer of my tongue a couple of years ago, yet I am just now coming to terms with my good fortune.
The older I become (now70), the more I realize how life seems to have its own rules.....most of which I cannot explain.
Posted by Cec76 on Jan 18, 2021 5:34 pm
I am a caregiver to my 51yr old husband who was diagnosed with stage 3 colorectal late December, It’s been a whirlwind of emotions and appointments since we found out but he had his power port inserted on Friday and this Wednesday will be his first round of Chemotherapy, it feels good to have a plan and we have a great team of doctors so I am anxious to get him started but feel very overwhelmed by the “unknowns” to say the least! Thankfully our children are older and so they know what is happening and can be some support to us both which is great as we moved to Canada 16yrs ago from the UK and we don’t have our family around close by, but luckily they are all only a FaceTime away!
Blessings to all, Charlie x
Posted by Brighty on Jan 18, 2021 5:44 pm
Posted by Cec76 on Jan 18, 2021 10:20 pm
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