Newly diagnosed and learning

melclarity

Lillian it is tough but just take a minute at a time and as Kath said let your Team know any concerns you have and talk with us as Im sure we can help support and talk of symptoms to ease your mind. Be kind to YOU is the best thing I could say to you...and though it makes no sense at all, the treatment makes you sick...to in fact make you better. I struggled with it very much but a day at a time as I went. Hugs Melinda xo

Zoffiel

That will be the steroids keeping you awake and jittery. It passes. M

primek

If your tummy is churning they're definetly medications to improve it. You do not have to suffer. Maxalon was no good for me, it made me restless but still sick. I ended up on ondasetron, stemitil, nexium and additional steroids. A trick with ondasetron as dissolves on the tongue was to have a sugarless mint at the same time, half an hour before meals (as it tasted foul to me). I tried everything for the horrid constipation and the only thing tbat worked was movichol sachets morning and night, started night before chemo. Once on that. ..only needed it for 3 days.

Cate64

@Lillian67 I amagined the Chemo going thru my systems like like little pacmen, munching up the cancer cells as they went

Lillian67

Awake again, these steroids really make me feel like WAY too much coffee
i think I'm quite lucky, I work from home and not many hours and they are very understanding so it's not been any pressure. I did volunteer a lot so I have given all that up for this year at least. Now it's me accepting all the help.
my MIL comes over first thing to get my girls up and ready and is doing the daycare rounds the 2 days they go to minimise my contact with preschool germs She brings her diary everyday so we sync up with new appointments and when she needs to look after the girls.
i went to my sports appointment and felt so much better, came home and had a restful Nanna nap! 
i found a book at the library called 'My Mum has Breast Cancer' it's written by a 6 year old and directed towards other children. Read it to Rosie (4 years) tonight and there was lots of tears but I think it helped. I'm getting G'ma to bring her in for a visit during my next cycle so she sees what's going on and that it's a good place.
I think the biggest thing for me is the unpredictablness of it all. I am a planner, I like to know what's coming and with this there is just so many variables - this year will definitely be the year I learn to take it all just one day at a time
thank you all for your remedy suggestions. I have a little note file I jot them in so if that side effect hits I can send hubby to get them pronto! 
I booked into the Feel Good thing here, which will be just in time for the hair fall out and apparently we have a great wig library too. Next week going to the support meeting as well.
little things to look forward too

Zoffiel

melclarity

Hey Lillian, Ive been up since 4 uuugh too. I remember the steroids eeeek but only took them for 2 days only hated it. They worked out after 2 infusions I was allergic to Maxolon, I thought I was literally going mad LOL the Head of Oncology picked up on it, it was like I was having this weird out of body experience sooo jittery anxious weird. So was much better once I stopped it. No anti nausea meds worked for me, the only thing that helped was Ativan strangely which they gave me before my infusions anyway. Nexium became my best friend with reflux and heartburn. Coloxyl tablets or pear juice for chronic constipation. I had long blonde hair so I got a wig synthetic it cost about $300 from shinywaywigs in melbourne OMG was just like my own hair and my hairdresser cut it into shape as I used to wear my hair. Nobody could tell, as it wore and mattered at the ends I cut it up LOL but I wore wigs for about 9-10 months, only wore caps or scarves to infusion was never comfortable in public and rocked it bald at home quite liked it LOL. 

I didnt do the LGFB it wasnt something I felt I needed, Id always loved makeup and have always been well groomed LOL uuugh thanks to my Mum! Anyway, the only challenge I found through Chemo was when my eyelashes fell out and I couldnt even put fake ones on as they dont stay..interesting hmmm? though a line of eyeliner across the top of the lid you couldnt tell I didnt have lashes. These were the little things that helped me feel better. 

My kids were 11 & 13 at my first diagnosis and I had only become a single parent within 6 months and moved us all from our home. It was a difficult time and my Mum had only passed 12 months before that suddenly. I cant imagine how difficult with the kids being younger in terms of their understanding. I was always up front and honest but basic and they seemed to cope well in 2011, in 2015 it was a little different my daughter was VCE and I had 4.5months of Chemo and was on my own with 2 kids who were then 15 & 17. My son was very frightened the first time but they walked everyday through chemo and I got my daughter through VCE even through her own turmoil of being diagnosed with Depression..we both conquered things. My son is now in VCE and its a tough year for sure, so as I have surgery on Monday and a long recovery after 6 hard years ive had to let my kids go live with their dad...oh boy another major hurdle and yet I know I need to do this for me and give myself time to heal...I cant manage through it with them here and all the demands they have.

Sorry for the Essay hahaha Im a planner also and always had to be ahead of things....I had it all planned out and it honestly went out the window due to being incredibly ill for 4.5 months. Basically bedridden in pain, eating was a problem and exercise ummm I couldnt even walk to the letterbox..so Ive come such a long way. The best thing I ever did once I realised I was going to struggle was to let go of all my planning and I stopped work which was difficult as am on my own and no assistance really. Took a year for a miracle LOL and found a component in one of my Supers of income protection so Im still on it til Jan 2018 and only work 3 days now but my Specialists have told me I have to give my work away that I'll never return to full time its far too volatile. 

Its an incredible journey of self awareness that made me stop and I now never do anything I dont want to not for anyone...yet am selfless for my kids absolutely....but I put me first now because I finally realised I matter..Im not just a Mum..the ex Wife...the daughter...the sister...the friend...I am ME and its my time. 
Big Hugs step at a time Melinda xo

primek

You are doing great. Hang in there.

Lillian67

I feel like I have been hit by a bus. I'm sore right through my body. Neck muscles all tight, hips are aching, can't lay in one position too long. I took Panadol and that didn't help. Tried neurofen too. 
Could this be the bone pain they mentioned from the injection I got to stimulate the white cells?

AllyJay

Moe than likely, I'm afraid to say. I got the most terrible pain in my sacro iliac joints (back of the pelvis about 3cm each side of the lower spine), as well as the hip joints themselves, legs.....and so on. I really found a pillow between my lower legs, from knees to ankles when sleeping on my side helped. It stopped the upper leg pulling down toward the bed, and so stopped twisting those joints. Also, the pillow stopped the bones pressing on each other. None of the standard pain tablets helped me, other than endone, which then turn my bowels into concrete, with a whole set of new problems to add to the first lot. Gentle walking helped, flat surface. as did pelvic rocking, (remembered from by pregnancy days 30+ years age) Get on your hands and knees,and then lift your bum in the air, with your arms flat and level with the bed, (the way babies like to sleep). Relax for a minute or so, then straighten your arms, so you're in the crawling position, and then move your pelvis backwards and forwards in a smooth, slow rocking motion...very soothing.

Zoffiel

You need to take a Claratyn tablet for 8 days starting chemo day. The drug in claratyn--not claratyn d--is called loratadine and it stops bone oedema associated with the Neulasta shot. It's been tested in the UK but ask your onc if you are unsure. I take it now and I've gone from being on the floor for 3 days with a total body toothache to mild discomfort on days 4 & 5. Really really recommend it.That bone pain misery was nearly enough for me to withdraw from treatment. Marg

melclarity

Lillian unfortunately that is the Chemo, though it should settle down after about a week. I used to take 2 Nurofen with 2 Panadol Osteo and gee it didnt really do alot but I couldnt take anything else for the pain as am too sensitive to pain killers. Hang in there! it does get better Melinda xo

primek

Worth trying the claratyne. I must say I had that pain from my first cycle and didn't have neulasta until the second. I had it milder on taxol and again no neulasta, so it could be the chemo. I kept up panadol regilarly and had stronger painkillers when necessary.

Lillian67

Thank you. 
Yesterday was awful, today much better. Just been gently stretching throughout the day and a warm bath. I'll talk to to the onc about clarantyne as panadol and neurofen didn't work at all. 
Steep learning curve! 
Im wishing I had a pool, some floating weightlessness would be welcome.
does anyone get massages during chemo? 

Zoffiel

I do, but not until the third week and they need to be gentle. The taxol shrinks my muscle sheath which can't be massaged out, but I do enjoy a massage just for relaxation. The only thing that went wrong was one of the masseuses was obviously uncomfortable dealing with me, she was very young and seemed a bit freaked by my bald and visibly unwell self. I gave her the opportunity to swap with someone a bit more experienced and it all worked out in the end. That's the risk of walk in massages, I'm sure it's a rare occurrence.