Posted by Jeff M on May 23, 2020 6:44 am
I’m currently waiting to hear back from a support group in Durham who’s members are Colorectal Cancer survivors.
In the meantime my family doctor has been a great help and is always willing to see me, even in person.
I had my one year Colonoscopy postponed due to the COVID virus, but with things starting to ease up, hopefully they’re reschedule me soon enough.
No issues but would just like to keep on schedule with the post surgery check ups.
Posted by alexisrj on May 27, 2020 9:37 pm
It really is comforting to know we're not alone in how we feel! It's as though some people have taken the fact that I don't need further treatments after surgery as the whole thing being done with! Carry on with your life! Get to it! And I'm very much still thinking, "excuse me? I have cancer??" I can very much relate to that line of thinking... And unfortunately for me, the cancer clinic here reviewed my referral and pathology and rejected my referral.... Everyone said, this is a great thing to be rejected! BUT I was really hoping even to speak with an oncologist about what the f*#k just happened! And get information on my case and risk of recurrence, confirm appropriate follow-up etc. (what if something was missed or will be missed?? I know! No "what ifs".... but still.... I can't help it!) I am very glad you were able to get an appointment Melinda !
Posted by Jeff M on May 27, 2020 10:45 pm
I completely get the “what if’s”. Great news that pathology doesn’t want to see you, but what are you supposed to do when your mind focuses on the “ what if it comes back?”
Maybe you have a talk with your family doctor?
Posted by Melinda on May 27, 2020 11:10 pm
On my list to ask the oncologist there is: confirmation of stage and T3, suggested follow up, suggested eating, when to contact someone and who for what symptoms, why my CEA numbers were so low and my CT inconclusive, and if the CEA was low and the CT didn’t show much how Would they detect a new tumour somewhere else and is there a different test I should be getting?
I totally get what you’re saying about “wtf”. People seem to think I’m fine since they took the cancer out, but holy cow, give me a breath. It’s only been 2 1/2 months since I was diagnosed. Can we at least talk about it. And I’d like a support group but there’s not much in my area and I’m off grid most of the time and can’t access wifi or high data calls.
I guess I’m feeling a bit frustrated today. Once again, I’ve talked myself into knowing how I’m doing. Common for me.
I’m hoping you can ask to have your referral re-evaluated. I specifically asked for a referral so I could get eating and digestion support and emotional support. I wonder if they put that on my referral form?
Posted by Wendy Tea on May 27, 2020 11:44 pm
Posted by Cynthia Mac on May 28, 2020 8:52 am
Jeff M ‘S suggestion about a phone call with your GP is good advice, too. Dad’s family doctor had all the information, so yours ought to as well.
Posted by alexisrj on May 28, 2020 7:01 pm
I will get in touch with my GP. I had a phone followup at like 10 days post-op with my surgeon and I don't have another appointment with him until August. He did give me all the information and staging/follow-up and I'm not sure if it's just that I don't understand the process but I thought an oncologist would have more information. My surgeon will still organize a cancer genetics appointment but they are not even accepting referrals right now due to COVID and it not being "urgent". Perhaps my GP can shed some light on this!
Posted by Jeff M on May 28, 2020 7:12 pm
In my case, after my surgery was complete ( a year ago today! ), my case was moved over right away to my oncologist.
It was easily a month after my surgery that I went to see my oncologist and he gave me the biopsy report, all the statistics as well as post surgery optional treatments.
Posted by KiwiCam on May 29, 2020 11:27 am
Unfortunately, it's possible that they will continue to reject any your request for referral because, like me, you are deemed as not needing an oncologist and only needing screening going forward. In addition to continuing to campaign for you, could your GP suggest any free or low-cost counselling options to help with emotional support in the immediate future? While it's good to feel that you're talking to someone whose counselling focus is cancer, all counsellors have the training and expertise to help in trauma situations. They can still help.
I hope you get the information you need and can access support soon.
Posted by alexisrj on May 29, 2020 10:57 pm
That's good to know that I'm getting the right kind of follow-up - I read online that that's what recommended but I still kind of felt like maybe if it weren't for Covid, I'd still at least get an appointment. My GP's office can email me my reports. I should get copies, I hadn't been as I didn't want to read something I didn't understand and then google it and worry. But now I suppose it doesn't really matter as I've got the stage and follow-up and it is what it is at this point.
Luckily, I have counselling through my husband's Employee Assistance Program at his work and I have a great counsellor I've talked to a few times before my surgery (and an appointment with him next week), but I wondered if someone specialized in cancer would have any different perspective or understanding. I will continue to chat with my current counsellor if I don't end up being able to get in at the Cancer Clinic.
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