Newly diagnosed
Hello I'm newly diagnosed as of last week,I see my surgeon this coming Tuesday. My head is still spinning with my diagnosis.Ive started to write down questions for my surgeon but its so hard to no where to start with it all . Any suggestions of information I may need would be greatly appreciated.. Sending love to all 💖
Extreme weakness!
Ladies please tell me this won't last ,, im only a week into my first cycle and im struggling to be on my feet for more than a minute or two. Thursday I could barely lift my head to drink. Is it the Docetaxel, Cisplatin and Herceptin? My Oncologist must think im a super hero.. No nausea as yet, but mild belly pain and thank goodness for Gastro stop 😁 mild to ouchy bone pain and muscle aches,, and thismorning my toes are a bit tingly lol these I can handle, its the feeling of exhaustion after a trip from lounge to loo thats getting me down.. I'm incapable of doing anything for myself.. I was not prepared for this!! I know you ladies won't look at this post as a winge, I just wanted to share my experience and possibly help other ladies who are about to start chemo.. I've been used to pushing through, mentally and physically for a long time (depression) im not a woman who let's small things get me down.. I didn't think chemo would be easy but OMG !! Please share with me if your struggling like me..
Surgery, radio, sleep, and restless legs
This is a long shot, but just in case... I had a mastectomy and reconstruction in mid-December, and I'm almost halfway through radiation treatment. I've always had restless legs, and there's something about major surgeries that seems to make it flare up badly. I had an abdominal hernia/muscle separation repaired at the end of 2020, and the restless legs were terrible afterwards! Anyway, I'm really struggling with sleep at the moment. I'm exhausted, but as soon as I start to feel ‘sleepy’ my legs start to twitch (mostly the left, because, hey, sure, why not?) Last night I think I finally managed to drop off after midnight, but was up from 2-4 am intermittently pacing, doing yoga, stretching, massaging, swearing, and trying to sleep. Then I was up again at 6 doing the same thing. I got maybe 5 hours of broken sleep. And it's been like this for WEEKS. It's like newborn days, only quieter. I'm doing all the things that have worked before: strengthening the muscles that are twitching, stretching what's tight, nerve glides, settling the parasympathetic nervous system before bed, massage, magnesium supplements, reducing overwhelm during the day. This is a crazy complex syndrome, and has many contributing factors. It's intensely frustrating. But I guess that's really only part of the picture, because I'm also still sore from the mastectomy. And the radiation is starting to get uncomfortable. And I want it OVER, but I'm also dreading the end because then I just get to wait and hope that treatment worked. All of that is playing merry hell with my sleep too, or at least with my stress levels. Anyway, my questions for you lovely folks are: 1) Are extremely restless legs something that others have noticed, or am I a shiny snowflake? 2) Any tips beyond that for sleep? 3) Any tips for managing discomfort during radiation? I've got mepitel and moogoo, I'm hiding from the sun like a troll/vampire hybrid, and I'm drinking ALLLLL the water. I still suspect I'm about to develop the worst case of sunburn I've ever had. Owie. 4) Can you ever lie on your front again after implant reconstruction? I'm generally a tummy sleeper, and I'm missing being able to snuggle up in bed like I normally would. Ta muchly ❤️
Timing of Radiation Treatment
Hi all, How long should I wait before having radiation treatment.?? Have lovely 3 week overseas trip booked prior to getting diagnosis of DCIS in left breast in Jan. Very quickly had DCIS removed - recently got the all clear. Can start radiation within 4 weeks of operation but leave for trip two weeks after radiation treatment finishes. Is this long enough break incase I suffer side effects ???.No one wants to be sick when on holidays. Alternatively Rad Oncologist suggested take holiday and start radiation treatment on return at 11weeks 3 days after operation. Any advice appreciated. Thanks Sue 66
Chemo over, but just the beginning...
Last Friday I finished 5 months of chemo, 4 AC dose dense every two weeks then 12 weekly taxol. The last 3 weeks I only got out of bed with painkillers such was the burning in my muscles and bones. My fingernails and toenails went purple from week one and are now all just yellow horny structures dropping off bit by bit. I move like I'm on my last legs and have developed a limp. I was diagnosed and on chemo within 3 weeks. My tumours were large (35mm & 25mm), invasive, locally advanced all in my tiny little AA breast. I will have a full mastectomy within the next 30 days with a sentinel lymph node biopsy and 3 of my lymph nodes from my armpit removed. I was told I would have 2 drains plus a pump? That's 3 tubes coming out of me for several weeks. Then another little rest and 6 weeks of radiation at the hottest time of the year. Then more meds for at least the next 5 years. I feel like I've disappeared into a void and the person going thru all of this has no feelings or emotions. I hate the uncertainty and have often thought in the last 5 months that I'd be happy to die were it not for my family. 5 months of hangovers every morning with no relief in sight. Everyone around me thinks it's over and that 'soon' I will regain my strength. I don't believe that at all but put on a brave face to keep everyone comfortable. This is not living and If I'm too tired to ride my horse then my life is over. My grandchildren think I'm boring and don't want to come here anymore. There's a blowfly in my bedroom taunting me. Tuesdays were always my worst day after chemo... And I know I am better off than so many - I have a close friend who does not have long left due to oesophageal cancer. We talk about death and miracles. (I would have posted this in Tests,Treatments and Side Effects but it wouldn't let me???)BAD NEWS IS SO HARD TO SHARE
I was diagnosed with breast cancer in late May after an ultrasound as my breasts are too small for a mammogram. An ultrasound guided biopsy on the 2 tumours was done and I was told by my breast surgeon that I was inoperable but not untreatable. I then had a PET scan and an MRI which both the breast surgeon and oncologist were very happy with. Within 3 weeks of my initial diagnosis I was on chemo. 4 x fortnightly AC and now I'm thru 7 of the Taxol with only 5 more to go. Everyone is very pleased with my response to the chemo as they said my kind of tumour often didn't respond (that was not told to me before I started). There have been no surprises and they are sure I will make it to number 12. Then I get a month's rest before the operation (that's how they refer to it) in mid December. At this stage all I know is I have 2 tumours, locally advanced in my right breast. Everyone tells me how good I'm looking cause I've got a great skull and all those steroids have made me look 20 years younger. But on the inside I am coming to a halt. I was told the taxol would be easier than the AC. I breezed thru the AC like I was invincible, I was going to save the world and especially my 5 children - 3 of whom have diagnosed mental illnesses. I was feeling magnanimous and suffering delusions of grandeur. My boyfriend of 8 months was the first casualty. He was gone sometime between the 2nd and 3rd round of AC. My 19yr old dental nurse daughter stepped in and took over giving me injections after the chemo and cooking up biodynamic food that my sister grows. I was starving all the time and went from 43 kgs to 45 kgs. Then the Taxol begun - I woke up the very next morning and as soon as I opened my eyes I started to cry. Before I even had a chance to think about anything the tears were jumping out of my eyes and I couldn't stop. I don't cry in front of anyone (much) but when I'm left alone I feel desperate and pathetic. The beach is just 2 blocks away and I can't even make it there. The shops are a block away and now that is too far as well. My legs burn when I try to take a stride but I can wobble around my house without too much trouble. My fingernails and toenails are all purple and lifting. I love being bald all over. I can't remember what happened yesterday. All my realities have turned into dreams. But I have great support from family and friends and feel blessed to be surrounded by so much love. It's taken me ages and ages to write this cause of all the stories from everyone that I've been reading. I've cried and cried for every one of you. I don't feel knowledgeable enough to comment or offer helpful suggestions but when I've been further along this warpath (it's no journey!) I'll let you know what I've learned.
