Where im at...
Its 8 weeks today since diagnosis of triple neg DCIS4, intrusive, evasive, aggressive. Ive undergone a lumpectomy, a R breast removal, auxillery clearance ( 1/17 with cancer), several lung, bone, liver, chest CT's and scans, a Barium X-ray soon due to swollowing difficulties, I had a 'Port' put in last wednesday and now im finding that sore and achey as the pain killers have worn off and the swelling has gone down, but in hindsite its better than being poked for a vein and ending up with a large flumbitis in my arm! My 1st chemo was awful, in hospital for 4 days due to profuse vomiting! and then the Filgrastim injection to protect your bones and marrow made me feel like i was run over by a steamroller, twice! For about a week! My 2nd chemo on wednesday, and im staying in hospital incase i react bad again. I have to stay in SALE hospital where my chemo is, as i cant get into Bairnsdale, I have to be away from my husband and son for maybe up to 4 days. Theres no point my man travelling to see me until im ready to go home. I feel so alone right now, I dont know anyone up there! Im getting a friend to take me so my man can utilise the day off work to pick me up. Im downing panamax ( panadol) like its going out of fashion this week, I had a whole 7 days of feeling fantastic! So i figure its like this, ... chemo-7days of feeling crap-7 days of feeling awsome, - 7 daysof feeling crap again! That ads up to my 21 day cycle of chemo, for 6 months, then radio for 6 weeks, where i will live at Centenary House in Traralgon monday to friday, and drive back up to home at Lakes Entrance for the weekends, hoping i feel up to driving, otherwise, its train or bus. The shopping centres are about 5 k away from the hospital and i have to supply my own food etc. Apparently theres a service bus. GOD THIS IS SO DAMN HARD!!! I find myself wondering, How In Hell did i get to this point in my life? What prompted BC in me when i have NO history, and im under 50??? I had bladder / urethra cancer at 32, and it was allremoved and treated with pills and surgery, i have a SPC ( catheter) in my tummy to my bladder to pee from, THAT doesnt worry me, except for the cath changes every 6 weeks, stings a tad, but manageable, and over with quick, then i go shopping, but THIS>???? And, im ONLY at 8 weeks!!!
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Oh Gayle, u sound like u certainly have had a lot to contend with. We all go thru these emotions so we understand and u will never feel alone coming here..
You will be thankful for the port, the soreness ur feeling there should ease soon, but it does take 2-3 weeks (i found anyway)..Did they give u anti nausea meds?? -i had Kytril-it was fabulous, i never felt sick, maybe ask about it.
I see u have a friend taking u to Sale, are they able to stay o'night so they are company for a little while the next day? or even ask another friend to visit on.
u will be suprised at ppl..often they want to help but don't how,so they will give you food or money, but make a list of things u could use support with and ask for specific things like being a travel buddy, childminding for ur son so u can have a quiet day to rest well, cooking some dinners for ur crap weeks...whatever u feel u need help with.
Things will settle down now that the diagnosos, scans and surgeries are done u can now get into a sort of routine of treatment..it is a nice feeling to know that ur then on the recovery trail, not twisting and turning from 1 place to another...
Look after urself and enjoy the awesome week-treat urself to a massage or movie, something u like to do. Its good to have something planned to look forward to.
Feel free to 'check me out' on here and make me a contact if u wish
Good luck for wed..u can tick off chemo no 2!!! Thats what u need to do, take each day at a time.if u feel like resting, then rest, its ur bodys way of telling u it is trying to get better as soon as it can..pushing urself too hard will only slow that process down.
Sam
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Thankyou for your support, my sons 16, he's pretty good with all this.
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Thankyou for the reply, my body aches alot today, and i know it will past. My skins peeling on my toes! thats weird! And in the shower, my very short hair all went down the drain, now i look like i have an ants nest on my scalp! lol Chemo sux! just hope its worth it, and i dont fall secondary to more cancer.
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im on FEC with 5fu, 6 months worth,then 6 weeks for radio.
That epirubison is awful!! the red devil
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I remember drinking so much water during and after every chemo so that I could flush that red poison out of my body. I would feel much better when my urine was no longer fire engine red. My weekly taxol has no colour but I still try and drink alot as I don't need the worry of kidney damage as well. I think we have enough to worry about with the poisons they pump into us.
Ive found my tummy has been very upset with each chemo but never as much as with this taxol treatment. I try and tell myself it may be a good way to loose all the kilos I've put on but it's very inconvenient. The cramps are horrible... I'm hoping it stops soon.
How are you feeling about your surgery to remove your breast? It all happens so fast I wonder if we get the time we need to work through it.
I was more frightened of chemo than loosing both my breasts. Sounds silly I'm sure but chemo has my emotions all over the place. I still think my bilateral masectomy surgery was easier than my 5 cycles of chemo I've had so far. I'm reminded of the side effects of chemo twice a day as I inject myself with clexane after getting clots on my lungs. I have quickly gotten over my severe needle phobia and now injecting is just like cleaning my teeth. It is amazing the strength we have within... Just a pity we have to go through this to find it.
Take care
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I am so sorry that you are having such a hard time with your treatment. Indeed it is a scary time and even more so when you are alone away from family and even just your own bed, its just not fair that your not wrapped up in your families arms. Life can be so hard but i guess we are all lucky in a way that the cancer is being treated and with a bit of luck you will kick it's butt right out of your life.
I do envy and respect every women who has to have chemo and go through the side effects just to help rid the body of this dreaded disease.It's such a harsh treatment. I was one of the luckier ones that chose not to go down that road as there was no real benefit to having chemo for my type of cancer. My thoughts and best wishes are with all you girls who still suffer with this disease and pray a cure comes soon.
All the best and hope the rest of your treatment eases up on you and gives you the rewards you need.
Cheers Jo xx
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The red devil, yes... because i cant pee normally due to haveing this SPC ( Super Pubic Cathetar) in my tummy, it takes a few days to run clear. My bladder can only hold around 500ml at a time, but i expel about 150 at a time, which leaves risidual behind, thus sometimes causing an infection, then on anti's etc, so i have a double whammy so to speak. Feels like i have a target on my head that says HIT GAYLE HERE! lol. But like i said, i DEAL with that, have done for almost 16 years. As for my BC... I found the lump on Dec 1st while i was in bed, tests proved i had a couple more, my breast had to come off, i said straight away, take it off! On the 17th Feb, 2012, I got in the shower, soaped myself up, cupped my breast and cried. I felt stupid! I didnt want to cry!!! But i couldnt help it, I was saying good bye. And they were the nicest set of tits!! My ex husbands name is tattooed across the top of the right one, i asked my surgeon if he could please remove the name after 23 years, he said no, unfortunatley he needed that bit to attach to the bottom bit! hahahaha, 23 years, and i STILL couldnt get rid of him!!! ( i had it covered over years ago, but it still reminds me what an ass he was). My now husband of 22 years is sooo much nicer!
I had/have an amazing breast care team, from my surgeon ( he flys his own little plane to work from Melb and grows walnuts here in Lakes, im free to consult with him on the street, he asks how im going and we chat)... the medical team at Bairnsdale hopsital, nurses, thatre etc, are fabulous!! and so is the FOOD!! ( Im a chef) They cradled me all the way through, and i felt very much looked after. My breast was removed, I had minimal discomfort, Clem ( surgeon) kept me in for 10 days to make sure i was ok, drains removed, staples removed, and i couldnt have wished for better service. I grieved before i lost it, i knew it had to come off, my results werent good, if i didnt have it removed, or any treatment, i would NOT be here now! I get frustrated at the 'teddy bear' stuffing i pop in my huge nanna bra, but i think ive managed to get it to look ok, 16C is hard to shape! Im not a candidate for an implant, and realy, if its uncomfortable having one off, i dont want one in! I was sore an achey while my tissue and skin moulded to my chest, but im good now! I had a feeling of broken ribs for awhile, hard to breath deep, and i thought if this is one breast, i cant imagine two off!!
I inject clexain, last day today, only because the ports in, im generaly mobile. How are you with Lymphodema? did you have an auxillery clearance?? i find if i dont massage my arm down, and around my back, and do 30 min of excercise in the morning, i stiffen up and ache. My hand and arm twinge if im doing too much with them; cutting up food, washing dishes etc, but i softly massage it and im ok.
Who would have thought Mel, we'd be here at this point in lour lives, doing things we never imagined to keep surviving! I have moments, and man theyre not good, last night i cried myself to sleep, the port makes my body ache,i kept thinking i want to give up, as trying to see my way to September is so far away! I start radio after this then. My mum died when i was 15 from substance abuse ( heart attack), and i was left alone. My sons 16, and i need to be here for him, i struggled, he doesnt need to. My mans very supportive, altho at a loss himself at times... but together we cope. occassionaly we sleep together, but i find with this, we both sleep better apart, that way i dont wake him when i cant sleep at 3am, or need to keep getting up to the toilet!
Do you ever look in the mirror and wonder who is that in there???? I see a bald, one breasted, bruised, tube in the tummy, false teeth, port in the neck, plumpish ogre! Then, somedays i shower and dress up, pop on a lil make up and feel awsome!!! Its strange, very strange. days i want to socialise, days when i want no one around. Im on facebook if you want to find me, Gayle Taylor, pic of a colorful eye tatoed on my arm, ( im a muso and TOOLs my favourite band. I have about 50 friends, i limit who i chat to, as no one digs my thinking, lol, but here, in BC world, i now have a NEW connection to people.
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I'll get though it, i have no choice!! None of us do! From those words.." you have breast cancer", your life changes, and its out of your control! Pushed through doors, filled with information til your head aches, and going through tests and procedures you normally would run from. And all the while, hoping to christ its doing something good! We feel crap!! we think how could something that makes you feel so sick be doing something positive! its WEED KILLER for gods sake!!! I feel empathy now for the weedsin our backyard, I watched Ross spray them the other day, and thought, yep, in four days time, that shits kickin in and your going to die, but first, you'll suffer! I wonder if weeds get diarreoh!
My thought and wishes go heavy to you to girl.... stay strong!!! xxxxxxxxxxxxxxxxxxxxxxx
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Hi, I have just had my 3rd chemo treatment and this seemed to be the worst i collasped and fainted this morning and have hurst my back, i am currently looking after my two children 12 and 8 and feeling terrible. But at least mums from my daughters catholic school are cooking for me and my children. I have 1 more 3 weekly treatment and then start weekly treatments for 12 weeks so i cant wait until august.
Goodluck Jo-Anne
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Hi
I had my worst reaction after my 3rd cycle of AC chemo. I felt terrible then lost my vision and had a stay in hospital. I refused the injection the day after chemo to boost white blood cells and found my 4th cycle much easier.
Last thursday i had my first of 12 weekly taxols and fingers crossed it has been alot different. I too am counting down the weeks till june 22nd when my 6 months of chemo will be over. Im hoping radiation will be alot kinder. Its great to know im not alone in finding this time challenging.
Take care
Mel
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Chemo went well this time! usual aches n pains, slight nausea, tired, but feel that im coping.
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Chemo went well this time! usual aches n pains, slight nausea, tired, but feel that im coping.
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Thanks hun, universal hugs help. Round 3 in 3wks, spose to be the worst, we'll see. They dosed me double with anti's and the port made a huge difference, altho i will admit, i had a sooky la-la to start with again, had to have the valium. My support driver was awsome in calming me down and getting me back in the door, true, i walked out crying and was going to walk all the way back home to lakes! hahahaha!! trial and error!
Got back in, then they put the needle in the port, i said a few choice words, my friend said i had terrets! lol, then i settled back and took it. Stayed the night ( foods crap in Sale hospital!) Ross picked me up thursday arvo, and i travelled home safe and well all the way. Its 3am as i write this sat morning, as i slept from 8pm til 2.30am, chemo brains awake, im in the reclyner, all snugged up here. Ill nap soon again. Dexamethazone ad rasperry cordial, may as well drink a "v", ! lol Hope your travelling well Honey!!! xxxxx
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