October 2017 Chemo Starters

[Shi]

Hi jencat, morning 😘can’t help you out on tiredness as I only had a few extra naps in that 1st week (probably where I went wrong didnt rest enough) we are always here if you need us jencat, you are never alone unless you want to be on this journey, your on the train with us 😘💕💕✨✨✨shi xx

[Meesh73]

Shi, not read anything about home checking no bp, just assume they'll check it when we go for treatment.  Also remembered a website that I also used previously for meditation http://www.fragrantheart.com/cms/free-audio-meditations#relax this has specific meditations for cancer patients (I haven't tried these as I used the site pre-diagnosis so not sure if they're any good, but just remembered that they had these in the list). I found the voices on both the website and app a little annoying so you might have to look past that!

Jencat, I think you just need to listen to your body and if you need to sleep then go with it! Others will be jealous of your ability to sleep as they're suffering from not being able to sleep, I guess it's just the way the dice falls. I think you should hopefully be turning a corner now! 😀

[Jencat]

I also meant to say Ruth, the words your little girl wrote in her card were lovely-'don't be scared' brought a lump to my throat and I'm going to try and remember them on the days I don't feel so great xx

[Jencat]

Headscarf looks really good Sue xx

[Jencat]

Hi Ruth, just read the card your daughter made for you, what a thoughtful little girl x

I was weepy yesterday (I'm on cycle1 too) and that was day 6 for me. I think it hadn't helped I was on my own and I did feel a bit better once my YD came home xx

[Jencat]

Morning everyone! I've only just got up!! Can't remember the last time I stayed in bed, even when I've been ill, but feel really tired today, so just stayed there and alternated between sleeping and reading my book! When does the tiredness usually go?! xx

[Shi]

Thanks CK for info on the temperatures.  Has anyone had info regarding BP? at all.  I too has that kind of whooshing noise going round my system the 1st night it was strange but like you just thought it was the chemo slooshing round my body.  Its not surprising we've all got sleeping pattens out of whack, we have all been on spin cycle since diagnosis havent we, I think we've done brilliantly to get any sleep at all.  YEHHH to us, thanks for the tip on the app Ruth,  I have managed better since getting home and also not drinking as much water through the night has helped too.  Another lady at my 1st chemo had problems with nausea and sickness but once they had sorted her meds out, shes been fine.  Hope that helps a bit.  Love and sparkles shi xx

[Ruth07]

Yes my OH is a light sleeper too and wakes me up too especially with his recently acquired cough! Oh to have the luxury of a spare bedroom I could take up private residency in 😉

[Meesh73]

Hi Ruth, the lorazepam also acts as an antisickness as well I think, they said it was a very small dose and recommended I took it for the first few nights. Re:meditation I also used to do this quite regularly but it fell by the wayside somewhere along the way. I had a problem with clenching my jaw at night a while back and so used it then, it does work. My problem OH is a terrible sleeper and really not sleeping well at the moment and I think he's waking me up!

[Ruth07]

Thanks Meesh, I think help with Day1 might be nice or maybe better antisickness meds for those 24 hours. Will see what onc thinks. Agree don't want anything too addictive. Used to be pretty good at meditation but it has deserted me a bit since my diagnosis so maybe now is the time to get it back XX R

[Meesh73]

Sorry that should have said "being able to sleep is important for recovery" this thing just keeps adding in random words! Should definitely read through before posting 🙄

[Meesh73]

Hi Ruth, my chemo party bag (love that name for it by the way) seems to be a bit different from others, not sure why. Don't think anyone else on October forum was given lorazepam, but I was also given dissolvable dexamethasone steroids which I take once in the morning for 3 days after chemo and I'm not sure anyone else has those either (most seem to be oral tablets twice a day). On top of that I have ordansetron twice a day and the donperidone as a top up if I need it. I'm a bit wary of the lorazepam as they can be addictive so am keeping to taking them only when on the steroids. Other forums mention using nytol or kalms (can't remember if it was just the herbal ones or not) to help with sleep. I found I felt really anxious and jittery for a few days (days 5-8) but managed it with yoga and meditation rather the lorazepam. I've also been meditating at night before bed to help with sleep so you could try that (I use an app called "calm" it has some free meditations, one of which is called "7 days of sleep") hope that helps!

Everyone just seems to have different chemo party bags I assume that's all part of our tailored treatment. You could ask for the lorazepam though as being no able to sleep is so important for recovery!

[SueW]

No Ruth no lorazepam for me either x

[Ruth07]

Hi Meesh I didn't get any lorazepam in my hospital party bag so sleep has been pretty rubbish since day 1, plus having to take sickness pills in middle of night through waking with hiccups and acid stomach.

Did everyone else get lorazepam? Will have to ask onc at check up why I didn't.
X

[CK]

Hi Shi
Hope you are ok! We just need pur temp not to be above 37.5 or below 35.5! If any of these just call the hotline and they will advise you. Sometimes you may feel hot and have rosy cheeks from chemo but this doesnt mean you have a temp. Its more so you dont catch infection.
I take mine 3 times a day or when I remember.
Enjoy wearing your qig. I have 3 hut sonetimes I just wear a bobble hat! We can in this weather. Have a nice drive and inhsle some of that crisp fresh air.xx

[Shi]

Meesh what’s this about if you temp drops below a certain level please, I don’t know about that one and has anyone been giving any advise on what their bp needs to be and if we should watch if the reading is low and if so had anyone been given any figures to look out for please. We’ve all had information overload since diagnosis and it’s all to easy to miss something if we are not careful, thank goodness for the forum and all you amazing ladies😘I’ve got one of my wigs on and we’ve gone out for a drive just now, so lovely. Be out and about even if I am not mingling with anyone. 💕💕💕✨✨✨shi xx

[Meesh73]

Hi everyone! SueW, re:temperature I did what you did and took it for a week before so I could gauge what normal was and I was pretty consistent. I can't remember if it's 35.5 or 36 that you have to call the number if it's below, will check my info. I have been pretty consistent since chemo 1 too with it only dipping a few days in week 2 when immune system is low. Wondered if the flu jab could have had an impact, although she said it is not a live vaccine.

Ruth, what a lovely daughter you have how thoughtful! 

Mishy, glad you're ok. I take my temperature each morning before I get up as the leaflet that came with the thermometer said not to move, eat, drink, open your mouth for about 30 mins prior to taking temperature. That seemed like an impossible task so the only time it seemed easier was first thing prior to getting up.

Shi, re:sleep prior to chemo I used to go to bed and get 8 hours sleep (maybe waking briefly for the loo). Since chemo I slept the first four nights for 6.5 hours due to the lorazepam, after I stopped to taking that I wake a few times a night and don't seem to sleep as deeply. A couple of nights I thought I'd become a time traveller as I woke at 3:30, then the next time I woke the clock said 1:30, then the third time I woke it said 3:45! That happened 2 nights on the trot, really freaked me out. OH said I must've misread the clock, which I suppose is most likely. 🤔

Sorry I've rambled!

[SueW]

I do have wigs and love them and have wore them but going out just with my shaved head too and just take a hat in case it gets cold x

[Mishy18]

Sorry for the predictive text errors I never learn!

[Mishy18]

Ah that's lovely bet that cheered you up it's cold today isn't it! Yes I echo what Shi said really temp feeling unwell more than usual side effects or shivery even without a temp can be a sign when I was neutropenic last month my temp had kept on spiking and dropping over the day and felt not hot but not unwell tang helpline who took me in and bloods were zero!!! Always ring if you are unsure unwell etc even if you have to go to hospital and the send you home after all the relevant checks it's better to be safe than sorry
Sue I did what you did with the scarves haven't even got my wig yet keeping it for post chemo nights out!!!

[SueW]

Ruth what a thoughtful daughter you have x that would have made me cry bless her x
Shi I never had pins and needles but burping was horrendous
Isn’t it funny how our bodies react so differently x

[Ruth07]

Hi Shi yes I felt very heavy and tingly immediately on Day 1 as though I could feel all the chemical slushing through my blood, and had to take my sickness bands off in the middle of the night due to pins and needles X

[Shi]

Ruth what a lovely card your daughter has done, thanks for sharing it with us, it's brightened my day too.  The sleeping thing is a wierd one you could be up every hour on the hour or mix between that and getting 2 - 3 hrs, in my case, I dont know if the other ladies have been able to sleep right though at all but if you have well done you.  Did anyone else get pins and needles feeling in their hand, forarms and feet the 1st night that you'd had the chemo? I just wanted to check if anyone else had experienced it or not.  Thanks very much ladies. Love Shi xx

[Ruth07]

Thanks Sue 🤗 Back. My daughter just made a lovely card for me to cheer me up. It says:
Dear Mummy
I hope you get better soon.
I know you will.
Don't be scared.
I love you ♥️ Evie
And has a big 🌈 On the front.
X

[SueW]

Ruth take every day as it comes if you feel weepy go with it and so be it xx
Hugs 🤗

[Ruth07]

Morning everyone,
So lovely to catch up on everyone's words overnight and not wake up feeling so alone ♥️♥️♥️

Can't even imagine cycle 2 yet but am only Day4 so guess that is to be expected. I know from this forum how strong you ladies are and that you will hijack our chemo choo choo 🚂 to get us all safely to our destination.

Is Day4 the weepy one? Feels like it might be for me! Hardly slept lest night and ended up listening to my nutrition pod casts at 2am! But determined to get up and even do a small bit of v gentle yoga after my bath.

Fabulous work on the fundraising everyone. Shi I have my eyes set on a few walks next year in advance of my Sept 1/2 marathon - have never really done much fundraising before but definitely feel I have a major reason to get more involved now!!

I am slightly worried about the dropping blood cells next. Everyone in the house had their flu vaccine and there is now a lot of coughing and sneezing, especially my daughter this morning, but 🤞It is just a reaction to the vaccine.

Hope everyone has lovely things planned for the day - especially our cycle 2ers for next week.

Jencat, Dizzy, Cassie, Ali and Marg, how are you doing?
X

[SueW]

Mishy I will try more today
I am going to take a wig off one of the polystyrene heads and practice the scarves on the head 👍 xx

[Shi]

Mishy thank goodness it was just double blankets that had warmed you up. `sue if you shave it somehow doesnt appear to come out as fast if that makes sense.  Ladies I didnt have a temperature with the neutraphenic sepsis, it was because my pee was burning I rang the emergeny no and they got me in and only when they took my bloods did they find out it was neutrapenic sepsis, I had not felt unwell apart from a bit of a chill in the night wed/thurs night but my temp was only 37.2 at that time and in the morning I flet fine again.  I now know if you get chill or flush feeling irrespective of temp reading to phone emergency no.  Just wanted to share with you in case anything like that happens to anyone during this train journey so you can take immediate action.  Love and sparkles shi xx

[Mishy18]

Sue I too embraced the shaved head I think you have to, there are some lovely scarf tying techniques which look really nice and not your typical going through chemo look!

[Mishy18]

My temp has been 36 sometimes even 35.6 at its lowest wrapped up for bed Friday night and when I got out of bed it was 37.9! Rang hospital for advice they asked me to go up in case I was neutropenic turns out all bloods totally fine great in fact and temp had went back down almost straight away and remained like that all day they sent me home after an hour or two I took it again, as soon as I got up this morning 38! Tried 2 mins later and it's acknowledged to normal 36.7 must have been too hot in bed but then again had sleep hat on double blankets! It's a hard one with Tempsford had I not been to the hospital yesterday I would have definitely panic this morning but I think I should make sure I have been up 5 mins before taking it!
If unsure speak to nurses on helpline that's what I normally do x

[SueW]

My temp always around that too but I took my temp for a week before chemo do I knew what my general running temperature was so to speak and it has remained the same xx

[Shi]

Thanks Karana and well done sue and your daughter for more fund raising thats great news.  Id like to do that walk through London at night that gets done, maybe not next year but would love to be able to do it in 2019.  Its something to aim for. Love and sparkles shi xx

[karana23]

My temp been around 36.5 - 36.8 most of the last week...I don’t really know what a low temp means does anyone else?  Hopefully Shi your last round was just a blip and your train will run smoother this time round...I’m sure they will keep a good eye on you as the onc won’t want you to go thru this each cycles!  I’m sure our dancing and sparkles will help 💃💃🌟🌟💃💃🌟🌟 xxx

[SueW]

Not only am I impatient but also like to be in control and this is beyond my control to a point x but thank you meesh for your reassurance I guess because I found first op relatively easy I though the 2nd would be too
Hey ho onwards and upwards x
Well done on fund raising ladies my daughter did a pink evening last night for me with a few of our friends and we paid that to breast cancer care last night so easy to do on line 👍x
Thank you all for your lovely comments on my photo xx

[Shi]

Thanks meesh, my temp has been anything from between 36.0 - 37.1 this round.  Mostly holiding around 36.6 - 36.8 is that not good then?  I only had snb and movement was back to full range by 6 weeks after after doing the exerises.  Mmmm I'll see what my onc has to say on Wed, I would like to get through the chemo a bit better this next round thats for sure.  Love and sparkles to everyone and thanks again all of you for getting me through.  Love you shi xx

[Meesh73]

Hi Karana/ Chaffinch, looks like you're in the same carriage (the one behind me)! Took temperature this morning and it's the lowest it's been 36.4 (so still within range but normally 36.7-36.9, although did go down to 36.5-36.6 for a few days last week) 😕Hoping this doesn't impact bloods tomorrow. Sounds like we all did pretty well last time round lets ask for the same again please! Chaffinch hope your hair holds up til you get home.

Karana, looks like you had an amazing night and everyone was very supportive.

SueW, that head scarf looks brilliant and really suits you! My op was 7 August and I also had full range of movement pretty quickly afterwards but tight armpit/ cording feeling lasted quite a while after. Keep doing the exercises (I must admit I've stopped doing them now😮 but I am doing yoga everyday so figured that would be just as good! Sounds like you might just be a little bit impatient like me, perhaps you should join me in the drivers carriage of our train!

Shi, hope round 2 goes better for you, when are you do start it (all being well with those pesky neutrophils)?

[Shi]

Karana great photo thanks for sharing.  Sue youve done an amazing job on the head scarfe looks great.  Chaffinch hope your hair has held up over night.  I hope round 2 isnt the same as round 1 on the chemo, I've had a really rough ride with this first one and not looking forward to another 5 rounds of this at all.  Let hope the Life Mel Honey works and my neutraphils dont go on holiday tomorrow.  I see onc on Wed and have a lot of questions for him, like can he lower the dose. Anyway onward we go ladies like meesh said we will be a third of the way through after this next one and we'll get each other through safely and with love, laughter, tears, hugs, funny stories, support and whatever else anyone needs.  Love you all and hope se's ease for everyone soon.  Love and sparkles shi xx

[SueW]

Morning ladies x
Karen I just searched tie a headscarf on you tube and there are loads of different ways of doing them x
Some seem more complicated that was so simple x

[karana23]

Sue that headscarf looks fab...what did you look for on you tube to find that?  I’m not liking wearing wigs much at all and struggling to find any hat I’m comfortable wearing in doors...have got to work behind the bar for a few hours today and it’s gonna be busy as local derby on tv (Norwich v Ipswich) so a woolly hat maybe a bit too much!!

Ali...thanks for the advice..I did write down how I felt for first few days so hopefully it will follow a pattern, by the sat last time I felt reasonably ok, fingers crossed 🤞 like you say it must be a little easier as we can be prepared for things like sore mouth, my onc gave me some mouthwash on fri and said I shld have been given it before I started and has given me a prescription for indigestion! 

Xx

[Ali49]

Sue that looks brilliant and you really suit it!

Meesh and Karana. Did you write down how you felt and were last time? My BCN told me to keep a record and now on day 4 of round 2 i am practically the samexas round 1. However i am better prepared. My sore mouth is coming but this time i have the mouthwash and gel from my GP so hopefully i will head it off or it wont be as bad.

I have finished my steroids today and that went quicker this time and i am taking Clarityn to reduce aches from injections.

I am not enjoying it but i know i can do it becaise i've done it before.

You will be great because you have done it before xx

[SueW]

i had a unicorn headscarf bought for me today and using the power of you tube managed to do a knot free head dress with it 

sorry if you are fed up if seeing pics of me but I am really embracing my shaved head (no hair loss yet but only on day 8)

[SueW]

Meesh my surgery was 8th September for axillary clearence and yes got chording 

its not over tight but is uncomfortable  as I have done my exercises but they have said to raise my arm in the air and massage the chorded area just using E45 cream. They will also refer me for phsyio but might not be able to start it until chemo finishes depending what onco says. Apparently it is quite common 

I do have full range of movement in my arm it just feels like a really tight elastic band under my arm and when you feel it from the outside feels like  rope under the skin hence the name chording x 

[Chaffinch17]

My hubby gets annoyed every time I pull some out, I think it freaks him out a bit, but I find it quite amusing especially because it annoys him 😜

[karana23]

Although my hair was doing that too Chaffinch i didn’t have any on my pillow just when I brushed it or touched it...I then kept pulling it out coz I was amazed how easily it came out 😱

Hope you have an ok day tomorrow x night x

[karana23]

This is a picture from last night...all the men had a cancer bow face painted on their cheeks, one of our customers donated a £1 for every man that had one....managed to get 39 of them to join in 😊 

[Chaffinch17]

My hair comes out if I run my fingers through it at the moment. Staying in a hotel tonight, so what’s the betting that it will be on my pillow by morning?
My dad suffered terribly with hiccups when he had chemo earlier this year.
Hope that all you round two people have a better day tomorrow. Last time I felt better by about day 5. Not looking forward to starting at square one again on Wednesday myself.
Off to see my parents in the morning then heading home ready for a busy week.
Night all xx

[karana23]

Yes that’s exactly why I’m worried 😟 but I will jump in the carriage behind you and hopefully we will have another smooth ride 😘

[Meesh73]

Hi Karana, mine is Tuesday (so you can climb in the carriage behind me) and I'm also starting to worry now! I'm worried that I'll suffer more this time, as I was fairly good last time. At least we'll be a third of the way through though 😊

[karana23]

When I shake my short wig and put it on I look like rod Stewart! Everyone that’s watched the video of me having my head shaved (yes I did put it on Facebook) said I look fine with no wig but I’m not sure and it’s chilly !

Im liking having the meet up and doing the Wonder Woman twirl! 💃💃🌟🌟 it’s difficult for us ladies to have stuff to look forward to xx

Is anyone panicking about chemo 2 yet....mines on Wed and I’m worrying a bit,in fact I think I’m worse than I was for first one...is that coz I’ve got an emotional chemo brain now 😱

xx

[Shi]

Blood should have read boof, I know there will be times when we look at the mirror and think what’s that road kill on my head but I didn’t mean it just now... should check before posting😂😂😂shi xx