Calling all TNs
Comments
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DiV, try to do something fun this weekend. Thinking of you!
Well, my experience may help other patients. My dermatologist is co-authoring a paper on the risks of radiation in lupus patients. She wants to include a description of what happened to me, a photo (without my face), and the drug that worked so well to calm down the rash. Glad my suffering will help other doctors treat their patients. 🙂
Hope everyone has a good weekend.
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Father God,
Please grant complete healing to all of us needing it. Amen.
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Anyone totally exhausted? It's 10 months pfc and I've been feeling pretty great. Suddenly, I can hardly walk more than a few blocks without feeling achy in my back and very very tired. Pain is not there other times. I've been bad and have not exercised since my lumpectomy over a year ago. Opinions?
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Cathytoo: all day, every day! I feel your pain-literally. I have Ehlers-Danlos syndrome; it's a connective tissue disorder that affects the entire body. Chemo exacerbated all my symptoms to the point that I couldn't work for well over a year, as I was in too much pain/too exhausted/too physically incapacitated (joints not working properly plus ongoing neuropathy) to be on my feet for any length of time, which is what my previous job demanded. I'm finally working at a desk job now, and full-time. But after a full work day and the hour I spend on the road to get to & from, all I have the energy to do when I get home is lie down! I *wish* I could exercise...
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Cathy, About a year ago I had a very similar feeling. I would bring a load of laundry upstairs to my bedroom and would feel exhausted. I had to sit on the bed and rest for several minutes before I could do anything else. This went on for several months. I told my PCP about it and I had some blood work done. Results showed that my thyroid med needed to be increased. Also my B12 level was in the basement! So now I give my self a B12 injection once a month. And thankfully I am feeling much better.
DiV, sending gentle hugs your way.
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DIV in your pocket and gentle hugs our way.
Cathytoo, the fatigue is a beast i have yet to slay. It comes and goes. My bone on bone knee is not helping either.
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Meadow, - what is next for you? Have you seen a wound specialist? (Forgive me if you already told us, - my memory is awful of late.
I hope you can finally get that wound closed !!Cathytoo, - Like you, I have not regained my energy level at all. It seems that many women compete their procedures and treatments and life returns to 'normal', but I am not one of them. Often times, my body is not comfortable, probably more on the lat flap side, so sleep is disturbed which may contribute to being tired. I've aged at least a decade these last couple of years. I ache in new places, my arm strength is diminished, I get tired and my hair is thin and awful. Some days are better than others and I keep hoping that I will regain more of who I was. My onc suggested that I return to pt to see if that helps. In the mean time, I am thankful for each and every day, no matter what!!
Div, - may your surgery go smoothly! We are all in your corner! Update when you can!
Thank you, my friends, for being here to 'talk' to.
Sending hugs and BE WELL wishes to all here!
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{{{{BIG HUGS}}}} to all on the eve of the first day of spring (which is also DH's and my anniversary)!!!
DiV, you'll be in my thoughts tomorrow; your strength is amazing.
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DiV, thinking of you on this eve before surgery.
Another, I saw the Infectious Disease Specialist on Friday, he was encouraged the infection is improving, and maybe can close the wound in about 2 weeks. I will not try to have another surgery for reconstruction. I am going to be happy and content with my one fake boob. Being flat on one side some how makes my fake boob look really good!
Adapted, Happy Anniversary!
((((Annie))))
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Thanks, Meadow!
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Meadow great news on your wound I'm so glad to hear it. I too will only have one boob. With my amputation they have to remove my implant and won't be able to have reconstruction again. I'm not going to let it bother me because my breast almost killed me and losing an arm too cause of it.
I have to be at the hospital at 5am and surgery is at 7:15. After surgery and recovery they are putting me in ICU to monitor wound and blood flow. I will post as soon as I can.
Thank you all again for your prayers. You are all so kind and thoughtful! You are all in my thoughts and prayers.
Any news on Annie?
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DiV,
Don't know if you're still online, but I wanted to let you know that I, along with so many others here, will be thinking about you all day tomorrow, and hoping all goes well for you. Just remember, this surgery will change your body but it won't change you. You'll still be the same warm, courageous woman we all admire.
Hugs and warm wishes for the best possible outcome.
Trish
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(((((Hugs))))),DIV.
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Super hugs to DIV. Meadow holding your hand too. Nice to hear from everyone. Trishyla, Avmom, anothernycg and any others i've missed. Hope to hear more from Annie. So glad she was able to post a while ago.
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Thank you all for your positive thoughts.
DiV, you are on my mind and heart today! We all can count so many costs that BC has brought in our lives, very few have paid the price you are today. I am humbled by your brave spirit. "God, give her strength and peace, and healing today.Amen"
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Hi all, I'm completely exhausted all the time too Cathy. I was doing well until about a month ago, then I caught a cold (which has now gone)and since then I've had zero energy. Hoping it will come back soon. Stay positive everyone! In your pocket DiV. x
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You're in my thoughts today, DiV.
Lyn
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DIV...thinking of you today and hoping that all went well. Just remember...changes to our body do not change who we are inside our heart and soul. In the short time we've gotten to know you, it'a evident that you are one in a million. Sending prayers and waiting to hear from you.❤️
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DiV, I dont check in as much anymore, but your story has really touched me. You are in my thoughts and prayers that everything will go smoothly. We all go through what we do so we can stick around here with our loved ones for the long haul, but I'm sorry you are forced to go through so much. I have a feeling you have the strength and support to get through this. xoxo
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DIV - along with so many others - praying for you - convinced that you are a strong person that is going to make it over this hurdle and come out on top! You are obviously a strong person both mentally and physically. So much love and support coming your way 👍🙏🏻💪
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DiV, I hope your surgery went well yesterday and the medical staff is keeping your pain well under control. I hope your recovery is smooth and you get to go home soon.
Meadow, I'm so sorry that your infection is still lingering and no more reconstructive surgery on that side. Grrr.
Annie, you live in a beautiful place!!! We didn't get to Taupo (closest was Waitomo and Rotorua which were amazing). You live in Paradise as far as I'm concerned. I hope your last round of chemo hasn't knocked you down too much.
Wishing the best for everyone in treatment.
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Hi ladies!
I posted a few times in 2013 when I had just gotten diagnosed, then I just couldn't. I browsed topics from time to time but I was overwhelmed and the only way I got through it was putting my head down and working like a crazy person all through treatment. Cancer is just as much a head game as a physical one, I find.
I was 39 when I felt the lump and it grew from golf ball to softball size in 2months. While that was happening, it was red, hot, peau d'orange, I was put on antibiotics for "mastitis".... sounds a lot like IBC. My first biopsy was inconclusive and I had a piecemeal huge excisional biopsy with a drain that confirmed IDC. Surgeon thought huge tumor caused inflammatory response and the affected skin was mostly gone by the time the oncologist ever saw me, so I was not diagnosed with IBC.
I've done my best to put it all behind me, but it's been hard. I am pretty sure I have some PTSD from the treatment and the pulmonary embolism I had right after completing radiation.
I went a year with no follow up (divorce and moved across the country with no insurance) and once I got insurance again I had a PET-CT which showed increased uptake in ovary and endometrial lining, then an ultrasound with a complex cyst that has since resolved and thick endometrial lining. Gyn panicked and did a CA-125 tumor marker test which came back elevated (not useful for screening, but she wouldn't see me anymore and wanted me to see an onc gyn, who wouldn't see me because no biopsy.) after 5 months of referrals (hmo) I had the biopsy and it was NORMAL. Whew.
Now I'm pursuing reconstruction and finally to the point that I feel like I can help others who are going through this and have some support while dealing with surgery again.
Sorry for the very long post- it's nice that people here totally get it.
Red <
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Hi RedR, welcome back! We are glad to have you on the boards here in TN land to help support all of us, thanks for that!
DIV, think about you every day and hope that you are comfortable and healing. The circle formed around you, with all of us TN's, should be giving you amazing strength right about now. You might not be able to feel it, but it is there!
Enjoy this beautiful spring day everyone, more to come!
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Welcome back Red. Glad to hear you are doing well.
DiV, ditto what loves said.
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Hi EVERYONE! I'm doing ok. Dr has 2 epidurals in me, plus pain medication. Yesterday I go out of bed and sat In a chair. Today I did 2 lapsaround ICU. Felt good to walk. Tomorrow they are turning off epidurals to see how well I deal with the pain. Dr said I'm doing great. I get to go home Saturday.0
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DiV! "Doing laps' and posting ALREADY!! You are amazing!! Wishing you a speedy recovery!!
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Wow DiV you are so impressive. Take care and I hope the recovery is smooth. It sounds as though it has gone as well as you could have hoped. That is great news. Sending love and healing thoughts.
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You are amazing DiV. Doing laps, up and posting. Hugs to you.
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