Posted by cancertakesflight on Nov 7, 2020 2:11 pm
As Brighty said. We will be thinking about you. Please keep us posted.
Posted by JustJan on Nov 7, 2020 9:18 pm
Posted by Whitelilies on Nov 8, 2020 12:22 pm
So....make this time "work for you"!
Get outdoors.....walk......crunch the leaves.....sip lemonade on the porch......slather on the sunscreen.....
Wishing you the best......
Posted by Runner Girl on Nov 8, 2020 2:17 pm
I was thinking about you earlier today, wondering if your scan had been scheduled. I am relieved to hear it is on Wednesday. You will be in my thoughts and prayers my friend. Sending you big hugs.
Posted by frozenstar on Nov 11, 2020 7:33 am
Posted by Whitelilies on Nov 12, 2020 5:01 pm
How was yesterday? I will assume the results will take a bit of time.....
If possible, share when you catch your breath........
Now, you can focus on Self-Care.....Netflix....warm bubble bath.....hot cocoa and lots of sugar free marshmallows.....lol
Posted by Mammabear on Nov 26, 2020 11:07 am
Definition of scanxiety
1 a : apprehensive uneasiness or nervousness usually over an impending or anticipated ill such as the anticipation of an upcoming scan or test to determine cancer growth or remission.
My name is Laura (aka Mammabear), and I had scanxiety. I am over it now (until next time) as I have the results and thank goodness they were good but I was a real Mammabear waiting both for the scan and the results.
Scanxiety is common for all cancer patients and care givers.
I have Stage 4 triple positive Breast Cancer. I try not to let cancer define me but I will admit to putting life on pause while I was in scanxiety. Living with a death sentence over your head is hard. Triple positive likes to go to the brain. I am having headaches. My previous scan didn’t show any shrinking in my liver tumours, they were ‘stable’. Oncologist added Letrozole to get mileage out of adding hormone therapy. I don’t want stable. I want NED (no evidence of disease). Was it working? Was Letrozole the cause of my headaches and fatigue? Result is that the new scan showed liver tumours shrinking again and brain all clear so it is working. But I still have the headaches and fatigue.
I have a friend. She was diagnosed with triple positive about a year after me. She is younger *48 to my 56). She was diagnosed with it back in her liver 2 weeks before me. When this happened I told her she was not allowed to die first. Hers is in her brain. She had one large tumour removed surgically (slurped out with a vacuum – Dyson or Hoover? I wonder which brand is a brain tumour vacuum). Tumour was pushing on her brain, not IN her brain so no brain cutting - Phew. They will radiate the smaller 2. My husband and I were freaking out in scanxiety that I would follow suit. I didn’t – my brain is ‘unremarkable’. Now I have survivor’s guilt. Each of us and our response to treatment is unique. She had an allergic reaction to Pertuzumab so was only on herceptin. When her liver tumours started growing again they added T-DM1 (super Herceptin) but only had 1 treatment before the brain tumours were discovered. She is now back on Herceptin + T-DM1 so I hope her tumours start shrinking again.
Do you have scanxiety? Is hope finite?
Posted by Lacey_Moderator on Nov 26, 2020 2:22 pm
Posted by WestCoastSailor on Nov 26, 2020 3:36 pm
A subject that is near and dear to my heart for reasons that shall be revealed in the next day or so.
This last CT round was rough. I have lung cancer, brain mets a real possibility. So every time I misspell "recieve "or type "I"m" or "ANd", I wonder if this is an impact of a brain tumour. I had a new tumour nodule discovered in September. Instead of the four month scan I was hoping for, I got a new scan in two months. And the run up was kind of okay but the time between the actual scan and the results, I was a basket case. Thoughts going a million different directions. From practical realities to contemplating what death was going to be like.
What a great question, is hope finite? My answer would be an emphatic no. On the other hand I will easily concede that life is finite. It's funny that this question comes up as just a few hours ago I was thinking about the fact that I haven't shared poetry for a while and I know that I have shared this before. Emily Dickinson nailed it so beautifully.
“Hope” is the thing with feathers - (314) By Emily Dickinson
“Hope” is the thing with feathers -
That perches in the soul -
And sings the tune without the words -
And never stops - at all -
And sweetest - in the Gale - is heard -
And sore must be the storm -
That could abash the little Bird
That kept so many warm -
I’ve heard it in the chillest land -
And on the strangest Sea -
Yet - never - in Extremity,
It asked a crumb - of me.
You don't sit in metastatic cancer groups for very long before people start dying around you. And the survivor guilt is real. Why am I still here when they are not? And yet there is a strength that comes from sharing that journey together. When someone asks, "How are you going to face those final days?" and you know that they are sincerely looking for someone to talk to about it. And that it is too much of a burden for their caregiver, and not real enough for their social worker, and everyone else is running for cover. What a privilege to share that, to listen. I don't think you need answers, just need to be able to listen as they work it out.
Saying stuff out loud makes it real. Thanks for letting us listen.
Posted by Kims1961 on Nov 26, 2020 3:42 pm
What i found strange when my scans came back positive for breast cancer, was i feeling was well - really well! I didn’t feel “sick” other than anxious to what the results of the scans are going to be.
I was on Letrozole and did get headaches - “ fuzzy” head i would describe it and an overall feeling of not well. So hard to know what is a side effect of medication and what is a recurrence?
Is hope finite? I’ve come to terms that HOPE and Acceptance can live together. I may on one hand be rationale and accept the outcome but will also continue a thread of hope. Good question ...it would be interesting to hear what others think.
Great post, Kim
Posted by ashcon on Nov 26, 2020 11:19 pm
Laura, I always love reading your posts. When you share your numerous experiences and ruminations of your journey I always get a refreshed perspective.
I haven't had a scan in awhile so my scanxiety is pretty dormant at this time. (touch wood!).
I am sorry to hear of what your friend has experienced. Boy she's been through a lot. I can see how it would be easy to assume this is your destiny too. I'm glad to hear things are stable or "unremarkable" for you at this time and I sincerely hope that NED are 3 letters that are in your future.
I have a good friend on my dragon boat team whose stage 4 cancer will likely take her out before we can get back on the water next summer. (We lost this past season to darn covid. Aargh!) It is her birthday on Monday and we are all sending her the biggest bunch of flowers along with a promise to take her paddle with us to every one of our regattas so that she will always be in the boat with us.
Her hope is not one of survival, but that we will always take her with us and keep talking about her. I think this has helped her balance and assimilate the hope and acceptance that Kims1961 so aptly described.
WestCoastSailor thanks for sharing that poem again. So relevant.
Hoping you know you are not alone as you wait for your next results.
Posted by Kims1961 on Nov 27, 2020 11:30 am
It reminded me about a piece of scanxiety - is that sometimes after finally getting the news , that i realized how “scanxious” I was.... i could say to myself, not to worry but that weight that is lifted - even when i found that my cancer was more aggressive - it was nice to finally KNOW....not guess.
Posted by Mammabear on Nov 27, 2020 11:58 am
Cancer spreading to the brain is my biggest worry and I need to deal with that.
Listening to CBC Music this morning and they have Cat Stevens on the Essentials . He said "My past is what I stand on. My future is what I jump at" so that will be my mantra for today.
Posted by WestCoastSailor on Nov 27, 2020 12:46 pm
I hope I didn't paint a grim picture of the metastatic group. I remember that it took me three months to get through the door only to find that they didn't have a facilitator. It took several months to sort that out and then we when we finally met a couple of times then covid hit... If you are in healthcare IT you may have a sense of what it took to get them moved online but full kudos to the Social Worker that did it. She was the only one in the province that managed it. And it is really great. I have sent a PM with the contact info for her. Hope we see you today. And don't worry about being late. People come and go as they are able.
Posted by Kuching on Nov 28, 2020 8:11 am
For a while I had a Nurse Practitioner who would send me results as soon as she got them, good or bad. But she retired, so now I have to beg and bribe various doctors and nurses, and it doesn’t always work. I can get some results online direct from the hospital, but they tend not to post the report for about a week.
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