1. < Cancer

Visited by cancer - your experiences, good and bad?

Posted by isadora2021 @isadora2021, Jan 26 6:30am

I can remember well being told I had stage 4 appendix cancer in 2021. I had no idea what stage 4 meant or why my appendix brought cancer to me or what lay ahead. I just knew cancer was a bad thing to get and that lots of people died from it. I still can’t believe I’m still standing (and still officially NED as of last week’s surveillance test results) after a wild few years.

I’ve been surprised at how many positive experiences I’ve had I didn’t expect to have. I’ve learnt to make the most of time - I’ve no time to be bored or treading water! I’ve met so many wonderful people. Heard so many inspirational stories. Discovered depths in myself I didn’t know I had. Been left in tears by the kindness of medical staff I have come across in my medical centre and in the hospitals I’ve stayed in. Angels who take on our pain, uncertainty and anxiety each day they front up.

It has been a real eye opener. For sure I didn’t choose to jump on this unpredictable train - but it’s been eye opening in so many positive ways. Do you feel that way too?

Interested in more discussions like this? Go to the Cancer Support Group.

m1rmiller | @m1rmiller | 1 day ago
In reply to @gingerw "@isadora2021 At the moment, I work with multiple myeloma, an incurable blood cancer. And end stage..." + (show)
@gingerw

@isadora2021 At the moment, I work with multiple myeloma, an incurable blood cancer. And end stage kidney disease, not brought on by that cancer, but an incredibly rare autoimmune disease. Prior to this I was treated for cervical cancer in 1996, and melanoma in 2008.

By becoming my own advocate, researching the best treatment options, listening and sharing with my medical teams, I am here today. Would I wish for another outcome to my journey? Heck, yeah! But the blessing in all of this is the kindness of strangers, now my friends, who have stepped up with me. Those friends include various medical teammates, from the receptionists to phlebotomists to medical assistants to doctors, support groups virtually and in-person when available, and yes even strangers I have met who show concern for the outer effects of my conditions ["Are you okay? Where did those bruises come from? Are you in a domestic violence situation?"] Everyone has taught me it is okay to be vulnerable, and to reach out a hand when needed. And to extend that same hand to help when I see it might make a difference.

Thank goodness for the energy I have when I have it, to do what makes me feel good. Creative endeavors, getting outside to walk, or pull weeds/yardwork. Each month I have blood work for the myeloma, and my kidneys. I try not to be anxious anymore. I am grateful for the daily dialysis that I have to do; it keeps me humble and thankful to have a treatment that allows me to live.
Ginger

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Something I didn't realize until my immune supression meds were changed from Tacrolimus to a combination of Sirolimus and Prednisone: a known side effect of Prednisone can be anxiety. I am a generally anxious person anyway, so this gives me one more issue to deal with. I am feeling a difference in mental state now that I've been on Prednisone for a few months. I too try to remind myself not to be anxious but it's not easy.

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isadora2021 | @isadora2021 | Feb 3 6:45am

@stevecando54 Fabulous ringing the bell outfit 🙌🏆😊

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stevecando54 | @stevecando54 | Feb 3 5:56am

I'm not very computer savvy, been trying to post the pic on here, big problem is when I retired I handed in my cell phone with all my pics. I do have one pic that brought me so much joy that hopefully I can get posted on here.. Best to All.
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stevecando54 | @stevecando54 | Feb 1 10:34am
In reply to @isadora2021 "@stevecando54 That’s priceless! I’d love to have thought of that myself and had that t-shirt!! Do..." + (show)
@isadora2021

@stevecando54 That’s priceless! I’d love to have thought of that myself and had that t-shirt!! Do you have a photo of you wearing it?!

Laughter is such a great way of lifting our own spirits and those around us. Right on point!

We ARE champions, and you are so wonderful to be proud to call it!! 😂

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I do have a photo of me wearing it,, I will need help from my wife as to how to post it but I will. Thinking of that makes me laugh now. Best to all.

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isadora2021 | @isadora2021 | Feb 1 7:05am
In reply to @stevecando54 "Doesn't take too much to make me laugh. During chemo treatment, to get a laugh from..." + (show)
@stevecando54

Doesn't take too much to make me laugh. During chemo treatment, to get a laugh from myself, I had a few shirts made up,, my favorite was a shirt that read "Chemo, Breakfast of Champions". I would wear for treatments and I also got purple streaks done on my hair ( well until it got patchy and I shaved it off) All grown back now and for good measure, I streaked it again, nurses at the treatment center get a kick out of it. For me, it's all about keeping my head in a good place. A little off topic here but everyone have a good day.

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@stevecando54 That’s priceless! I’d love to have thought of that myself and had that t-shirt!! Do you have a photo of you wearing it?!

Laughter is such a great way of lifting our own spirits and those around us. Right on point!

We ARE champions, and you are so wonderful to be proud to call it!! 😂

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1 reply
stevecando54 | @stevecando54 | Feb 1 5:55am

Doesn't take too much to make me laugh. During chemo treatment, to get a laugh from myself, I had a few shirts made up,, my favorite was a shirt that read "Chemo, Breakfast of Champions". I would wear for treatments and I also got purple streaks done on my hair ( well until it got patchy and I shaved it off) All grown back now and for good measure, I streaked it again, nurses at the treatment center get a kick out of it. For me, it's all about keeping my head in a good place. A little off topic here but everyone have a good day.

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isadora2021 | @isadora2021 | Jan 31 5:26pm
In reply to @lmoser325 "Yes I do feel that way I also have had some wonderful people in the hospital..." + (show)
@lmoser325

Yes I do feel that way I also have had some wonderful people in the hospital and I love even one of them. I know sometime it hard but they make it a lot easier I have been through 5 now they are not using nothing because the medication has to strong and made my blood go down but now it is better. You hang in there

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@lmoser23 So sorry to hear your blood count went down so you had to stop chemo. Glad you’re better 🙏 Wishing you all the very best with your treatment. Hang in there too 🙏🌺 It’s wonderful how many special people we’ve met which we wouldn’t have otherwise. I really appreciate them too.

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lmoser325 | @lmoser325 | Jan 31 4:04pm

Yes I do feel that way I also have had some wonderful people in the hospital and I love even one of them. I know sometime it hard but they make it a lot easier I have been through 5 now they are not using nothing because the medication has to strong and made my blood go down but now it is better. You hang in there

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lmoser325 | @lmoser325 | Jan 31 3:55pm
In reply to @stevecando54 "I had ten rounds of the chemo. I so looked forward to ringing that bell. I..." + (show)
@stevecando54

I had ten rounds of the chemo. I so looked forward to ringing that bell. I even searched on line if I could ring it when finished even knowing mine is not going away. You betcha I rang that bell. Even did a little jiggle. It brought me great joy even knowing my journey is still going on. I need to take joy in the little things even if just getting good test results each month. Has been almost 2 years and it has gotten easier to accept for me. I wish you the best on your journey. Best to all.

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Thank you I am going to ring that bell also some one else ring it. I hope the best for you on your long journey. But we will make it

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