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June 2019 chemo starters

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Re: June 2019 chemo starters

Morning lovelies,

 

good news - we made it to Bon Jovi and I nearly made it to the end! 

 

Bad news - uti reared it’s head again early this morning and has shifted to my kidney, now sat in a and e at UCLH awaiting bloods results and a shot of iv antibiotics and some fluids. Turns out having spoken to chemo team this morning that no one bothered to check the urine cultures they did when I was in hospital and the two antibiotics I have had already The infection is resistant to 😫😳😞😡 it’s the little things sometimes but I know now to chase them myself! I should know having done this before how on the ball I have to be, I don’t blame the staff tbh they are so busy they just move on once you are “off the books” so to speak.

 

So depending on how long I am stuck in here for and how I feel we may have to come home early, was supposed to be last part of hubbys birthday celebrations. I feel so bad for him and he is so lovely about it all 😞

 

Hope you are all having as good a weekend as possible!

 

Ruby xx

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Re: June 2019 chemo starters

Hi ladies,

 

My nickname has not much mystery since it is my real name- it's the Spanish word for Happiness and I try to live by it as much as possible Woman Wink 

 

It's day two after chemo 1 EC and I 've been doing well, just a bit tired and a bit of dry mouth - but that was something I had prior chemo. Red cheeks are up, but my mood , appetite and overall wellbeing is fine. Let's see once steroids and anti-nausea meds are out of the picture on Monday. I have my jabs to do at home from Monday too.

 

I had PICC line fitted on Tuesday 18th and I don't feel it , they've packed it as a "spring roll" with some bandages and folded it upwards so it's not dangling or causing discomfort, I barely notice is there and is such a blessing for when they are injecting the chemo, I didn't feel a thing.I bought some nice covers so I am not self conscious when I'm not wearing long sleeve outdoors in a restaurant or café -or at work. @Alvilajo, I got my covers from amazon seller Hipheadwear. Very nice quality, reasonable priced.

 

Cold cap wise, I took it better than I thought, it made my stay longer but let's see if there are results for me. It was funny  because even if it doesn't look like because my hair is thin, my head is quite big and average sized hats don't fit me, so they spent some time fetching a hat I could wear.

 

@rubythursday, enjoy Bon Jovi! Wembley is such a great venue and they are a fantastic band. I like your attitude towards making the most of the steroids high!

 

@MrsVelo I know what you mean about friends. Most of mine are not doing that and my closest friend has been reading about "what not to say" . They are meaning well, but perhaps you can tell them discreetly that those comments are not really cheering you up, maybe a link from a blog or web could help them out? A big hug to you, it's not an easyu diagnose or a thing to digest - just realized today is my first month anniversary from diagnosis. It seems so far away and so recent at the same time.

 

@whlsarah, hope the weather is beautiful as it is in London and you can make the most of the weekend before Chemo.

 

@minimad Norfolk is gorgeous. I hope your next chemo doesn't give you spams. 

 

Hugs to you all , it feels so good to have such a group of lovely and fighting ladies around here.

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Re: June 2019 chemo starters

Alvilajo are the first two initials of my 

husband, me, daughter and son names x

vicky xxx


@mini mad wrote:

Hey Chicken81

 

you did make me laugh 😆😆😆😆

yesterday i was talking to my neighbour and i kept getting my words the wrong way round and she said " you didnt watch the 2 Ronnies last night did you "   🤪🤪

so just thought you may not be of a certain age to have any idea what i'm talking about !!!! 

 

Cant help wondering what all our " names " mean on here ?

me, well i love mini cars and have a 2010 mini clubman hence " Minimad "

how about all you other lovelies  💖



@mini mad wrote:

Hey Chicken81

 

you did make me laugh 😆😆😆😆

yesterday i was talking to my neighbour and i kept getting my words the wrong way round and she said " you didnt watch the 2 Ronnies last night did you "   🤪🤪

so just thought you may not be of a certain age to have any idea what i'm talking about !!!! 

 

Cant help wondering what all our " names " mean on here ?

me, well i love mini cars and have a 2010 mini clubman hence " Minimad "

how about all you other lovelies  💖


 

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Re: June 2019 chemo starters

Morning all! 

 

In reply to our names, I’m a spurs fan, so the whl stands for white hart lane. I’ve used whlsarah for so many years now I can’t be creative and think of anything else! 

 

My second round of chemo is on Monday. So I’m going to try and be active this weekend before the fug hits again. 

 

I’m curious to know if the prune buns were effective?! 

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Re: June 2019 chemo starters

Hey ruby,

 

also had a reaction to Paclitaxel again ,but not as severe a last week.

Just stating again now... enjoy Bon Jovi....  may the steroids keep you going xx 💖💖

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Re: June 2019 chemo starters

Hello! 

Chemo number three done and dusted, just fifteen more to go!  Reacted again to the paclitaxel, but just normal reaction not anaphylactic like last time thank god! On way to Peterborough to catch train to see Bon Jovi tonight...may the steroids keep me up for long enough!

 

my name on here is my husbands nickname for me, although he also called our 1978 vw campervan Ruby as well, not sure what that says about that 😂

 

Ruby xx

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Re: June 2019 chemo starters

Hey Chicken81

 

you did make me laugh 😆😆😆😆

yesterday i was talking to my neighbour and i kept getting my words the wrong way round and she said " you didnt watch the 2 Ronnies last night did you "   🤪🤪

so just thought you may not be of a certain age to have any idea what i'm talking about !!!! 

 

Cant help wondering what all our " names " mean on here ?

me, well i love mini cars and have a 2010 mini clubman hence " Minimad "

how about all you other lovelies  💖

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Re: June 2019 chemo starters

Mrs Velo, I have my second chemo June 27th.

Yours is different to mine as I'm on EC. 

The Friday after I was OK, we went out for lunch n walk and I rested. 

Wasn't til sat n sun I was wiped out. 

I think the steroids I had to take Fri am n lunch must've given me a kick. 

So you won't really know what happens til it happens. 

 

Ladies.... The hospital gave me that mouthwash after first chemo, just noticed it this morning, and here's me asking what's it called to get it for next time! 

Dam I think I must have chemo brain! 

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Re: June 2019 chemo starters

Oooh never heard of picline covers will take a look x

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Re: June 2019 chemo starters

Ha ha I’m a jeans girls so going for bandanas xxx


@MrsVelo wrote:

Thanks Alvilajo,

proper dreading it.  One thing I also struggle with is wonderful friends seem to trying to make me laugh about it!  Oh haha we can all have some fun with wigs, or oh you can make a great fashion statement with wonderful funky scarves!  God bless them they must be reading some website about "how to cheer up your friend with cancer".  Clearly they have lost the plot, I am a fat 54year old, definitely young at heart, but I live and die in jeans and tee shirts and never wear a scrap of make-up.   I will never wear a wig and will prob choose snoods to keep head covered when my hair starts going on a little holiday.  Big love to you all. xx


 

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Re: June 2019 chemo starters

Hi mini mad.  Sorry you are here too, but equally glad ladies like you are so we all have someone to talk to.  It's hard to keep a lid on it sometimes eh?  I ordered some picc line covers on ebay, and I have heaps of scarves and snoods to make use of when the time comes.  Hope the PICC line goes ok for you lovely, they are gentle professionals and give some local anaesthetic; it really isn't too bad honestly.  xx

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Re: June 2019 chemo starters

Hi Ruby,

 

when is your next chemo...today or tomorrow ??

my 3rd is at 12.30 and like you said i'm hoping i dont have the back spasms again..

hope the weather down there is as good as up here in Norfolk today 🌤🌤💖💖

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Re: June 2019 chemo starters

Hi MrsVelo.

sorry that you have joined us here.

the shock of being told you have breast cancer made me completely numb... but you learn to cope with it a day at a time...big HUGS 💖

i am also having Paclitaxel one day a week for 12 weeks and Carboplatin every 3 weeks.

today i have my 3rd session.... im not cold capping either,  already have my wig and variety of pre tied beautiful head scarves off ebay.  

 

i HAD triple negative bc....mastectomy in april with level 1 axilliary nodes.  All margins were clear 👍

chemo needed to be done and have had some side effects but just treat them when they appear. We are all different regarding se  so hoping you  are one of the luckier ones 💖

i am 68 and always wear jeans/jeggings and nice tops.... and make up but not doing mascara now  cos i want to keep my lashes as long as poss.

i have my picc line fitted next thursday.... my veins are already bad....

good luck to you and we are always on here if you want to talk..💖💖

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Re: June 2019 chemo starters

Thanks Alvilajo,

proper dreading it.  One thing I also struggle with is wonderful friends seem to trying to make me laugh about it!  Oh haha we can all have some fun with wigs, or oh you can make a great fashion statement with wonderful funky scarves!  God bless them they must be reading some website about "how to cheer up your friend with cancer".  Clearly they have lost the plot, I am a fat 54year old, definitely young at heart, but I live and die in jeans and tee shirts and never wear a scrap of make-up.   I will never wear a wig and will prob choose snoods to keep head covered when my hair starts going on a little holiday.  Big love to you all. xx

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Re: June 2019 chemo starters

Bless you sound like me. You could sail through or you could be tired it really varies. I cry at the hospital and when I get a hospital letter as it reminds us What’s going on and it becomes all fresh again. Good luck to you and I didn’t go for cold cap either xxx vicxxx 


@MrsVelo wrote:

Hi ladies, well after what seems like a long wait my chemo starts next Thurs 27th.  Paclitaxel weekly for twelve, Trastuzumab every three weeks for a year.  Had two ops earlier this year, HER2+.  Decided againgst cold cap, can't be ars**d, will probably need a scarf anyway so thought I (we) are going through enough why add more pain/discomfort.  I realise it's personal choice though, anyone choosing it is braver than me!  Had PICC line in yesterday, not tooooo bad, but every time .i go near the hospital it sets my emotions off and I struggle not to cry.  Am dreading chemo.  At home I just act normal.  The day after my first one I am due to go to the I.o.W for the day cycling!  No idea if that will happen as no idea how I am going to feel.  Does it wipe you out after just one session?  Oh flip, I am seriously dreading the next three or four months. 


 

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Re: June 2019 chemo starters

Hi ladies, well after what seems like a long wait my chemo starts next Thurs 27th.  Paclitaxel weekly for twelve, Trastuzumab every three weeks for a year.  Had two ops earlier this year, HER2+.  Decided againgst cold cap, can't be ars**d, will probably need a scarf anyway so thought I (we) are going through enough why add more pain/discomfort.  I realise it's personal choice though, anyone choosing it is braver than me!  Had PICC line in yesterday, not tooooo bad, but every time .i go near the hospital it sets my emotions off and I struggle not to cry.  Am dreading chemo.  At home I just act normal.  The day after my first one I am due to go to the I.o.W for the day cycling!  No idea if that will happen as no idea how I am going to feel.  Does it wipe you out after just one session?  Oh flip, I am seriously dreading the next three or four months. 

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Re: June 2019 chemo starters

Thats good to know thanks, if you fancy a day in Folkestone I’m doing the breast cancer tea party on 29th June xxx


@Jencat wrote:

Try not to worry about the picc line Avilajo. and mini mad, I had one put in when I had chemo and I didn't feel anything! 

I'm near Rochester Avilajo xx



 

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Re: June 2019 chemo starters

Try not to worry about the picc line Avilajo. and mini mad, I had one put in when I had chemo and I didn't feel anything! 

I'm near Rochester Avilajo xx

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Re: June 2019 chemo starters

Thank you 😘😘😘

 

 

 



@mini mad wrote:

Hi Alvilajo,

Sorry to read you're suffering somewhat and then to get that letter.  Not surprised you're worried but all i can say is " try not to worry "....   i know i know its easier said than done but we just have to stay positive and strong...  we're WOMEN WARRIORS..... somehow we take what life throws at us and just get on with it......   getting carried away here....🤷‍♀️🤦‍♀️

I have my picc fitted next thursday so i will want to know how you get on next wednesday 🤞🤞

good luck and big hugs to you all.. xx💖💖

 

 

 


 

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Re: June 2019 chemo starters

Hi Alvilajo,

Sorry to read you're suffering somewhat and then to get that letter.  Not surprised you're worried but all i can say is " try not to worry "....   i know i know its easier said than done but we just have to stay positive and strong...  we're WOMEN WARRIORS..... somehow we take what life throws at us and just get on with it......   getting carried away here....🤷‍♀️🤦‍♀️

I have my picc fitted next thursday so i will want to know how you get on next wednesday 🤞🤞

good luck and big hugs to you all.. xx💖💖

 

 

 

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Re: June 2019 chemo starters

Hi I thought it was good having two lol. I live in Folkestone xxx


@Jencat wrote:

Hi Avilajo, just wanted to say that I'm thinking of you re onc's letter. Although they're writing what has been discussed, it seems to look worse when it's written down. With regards to the nodes, I might be wrong, but I thought having 2 wasn't too bad. I had 3 and I remember the consultant saying that made me more borderline for having chemo. 

I think you might be in my neck of the woods as you mentioned Canterbury! x


 

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Re: June 2019 chemo starters

Chemo two weeks yesterday but see oncologist next Thursday and pick line next wed xxxx


@rubythursday wrote:

I don’t know tbh, worth checking out though - when is your next chemo?


 

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Re: June 2019 chemo starters

Hi Avilajo, just wanted to say that I'm thinking of you re onc's letter. Although they're writing what has been discussed, it seems to look worse when it's written down. With regards to the nodes, I might be wrong, but I thought having 2 wasn't too bad. I had 3 and I remember the consultant saying that made me more borderline for having chemo. 

I think you might be in my neck of the woods as you mentioned Canterbury! x

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Re: June 2019 chemo starters

I don’t know tbh, worth checking out though - when is your next chemo?

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Re: June 2019 chemo starters

Could anemia kick in in just a week. Hope you had lovely meal xxx

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Re: June 2019 chemo starters

I am 49 as well, I have been most definitely post menopausal for the past six years. It’s not so bad, just different.

 

if you are knackered and breathless you might just have a touch of anemia maybe? I am also tired, but functional mostly, had lunch with my youngest today - it is his 20th birthday today, he was 9 when I was diagnosed first time round! I have more chemo tomorrow, then planning (if I don’t react like last time) to jump on a train to London to go see Bon Jovi at Wembley then spend the weekend in London..well I will be high as a kite on steroids so might as well make the most of it!

 

xx

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Re: June 2019 chemo starters

Aw ruby bless, sorry I do feel  lucky catching it early but one day they say two nodes is good and the u read that. I didn’t want to know my scoring as I would just worry so just accepted that they know best. It’s scary s**t this stuff. I’m 49 and yeh pre menopausal. I went to Canterbury today with hubby for a bit of retail  therapy but was exhausted. It feels like I’m on a mountain high up in Peru where energy’s affected, that’s the only way I can describe it. How are you feeling hun xxxx

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Re: June 2019 chemo starters

Hey Alvilajo,

 

i know its it’s hard but try not to be upset, the AI’s are generally considered to be more effective at keeping breast cancer away, I had a recurrence within two years on tamoxifen and went more than seven with Letrozole, and I was unlucky - many, many women never have it come back at all!

 

i guess from how young you look in your picture you are premenopausal? Zoladex is ok, as is Letrozole. I have done both and I have had my ovaries removed too to stop the oestrogen, please ask if there is anything you want to know.

 

This whole hellish experience is an emotional rollercoaster and we all wobble from time to time.

 

ibuprofen combined with paracetamol, plus a heated back pad helps with GSF injection pain. Don’t suffer, talk to the chemo team.

 

Sending you a big hug.

 

Ruby xx

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Re: June 2019 chemo starters

Hi ladies how’s your day been?

fatigues kicked in again today and the worst ache/ pain in hips and lower back probably from injections. Had a letter from oncologist, well a copy of what he sent to surgeon which upset me a bit. I can’t have tamoxifen as I take sertraline and have for years so he’s written as she has 2 positive lymph nodes categorising her as high risk, he suggests I receive hormone therapy with an aroma tase inhibitor and zoledex for at least 3/5 years. I knew this bit the wording high risk had set me off again 😢 xxx

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Re: June 2019 chemo starters

Good luck.. 💖💖

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Re: June 2019 chemo starters

Make some prune buns, worked for me and give u something to do 😘


@Zed51 wrote:

Hi all. A week since my first FEC & I’ve had constipation & sore mouth issues but both seem to be subsiding using all those meds people have talked about. I have fuzzy head at various points in day but worse first thing I think. Not enjoying having the tummy jabs but only 2 to go now this time. I think the most frustrating thing is being at home alone when I’m used to being up & about & full time teacher. Life is usually packed so I’m trying to do some little things to entertain myself! Can’t focus on reading etc but having a dog to walk is very helpful. Hoping week 2 starting today means more energy but know it’s the more likely one for immune system issues. I need to learn knitting or something! 🧶 


 

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Re: June 2019 chemo starters


@felicidad wrote:

Morning ladies!I am glad to read about all of you.Today is day one of EC for me at 1pm and I am cold capping.A bit anxious but I have fabulous people round me who have helped me to prepare for it .

All the best to everyone x



Hope all runs smoothly xxx

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Re: June 2019 chemo starters

Hi all. A week since my first FEC & I’ve had constipation & sore mouth issues but both seem to be subsiding using all those meds people have talked about. I have fuzzy head at various points in day but worse first thing I think. Not enjoying having the tummy jabs but only 2 to go now this time. I think the most frustrating thing is being at home alone when I’m used to being up & about & full time teacher. Life is usually packed so I’m trying to do some little things to entertain myself! Can’t focus on reading etc but having a dog to walk is very helpful. Hoping week 2 starting today means more energy but know it’s the more likely one for immune system issues. I need to learn knitting or something! 🧶 

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Re: June 2019 chemo starters

Morning ladies!I am glad to read about all of you.Today is day one of EC for me at 1pm and I am cold capping.A bit anxious but I have fabulous people round me who have helped me to prepare for it .

All the best to everyone x

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Re: June 2019 chemo starters

It’s a good job we’ve got each other it makes all these abnormal things feel more normal lol xxx


@mini mad wrote:

I've had some sharp stabby pains in my head but not fuzzy feeling 😳😳 xxx



 

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Re: June 2019 chemo starters

I’m on ec epirubicin and cyclophosphamide. I will mention it next week x


@rubythursday wrote:

Hi Alvilajo, I had ear problems with carboplatin, lots of background noises, pain and super sensitive. Which chemo are you on? Might be worth checking if it’s a known side effect?

 

Ruby xx



@rubythursday wrote:

Hi Alvilajo, I had ear problems with carboplatin, lots of background noises, pain and super sensitive. Which chemo are you on? Might be worth checking if it’s a known side effect?

 

Ruby xx


 

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Re: June 2019 chemo starters

I've had some sharp stabby pains in my head but not fuzzy feeling 😳😳 xxx

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Re: June 2019 chemo starters

Hi Alvilajo, I had ear problems with carboplatin, lots of background noises, pain and super sensitive. Which chemo are you on? Might be worth checking if it’s a known side effect?

 

Ruby xx

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Re: June 2019 chemo starters

Hi ladies, has anyone else noticed a fuzzy head when turning quick or on hearing a loud noise,  more like a shock zap feeling, strange 🤔


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Re: June 2019 chemo starters

Someone mentioned tinned prunes in syrup the other day so I thought I’ll make some prune buns with them. They are yummy and hopefully will do the trick image.jpg

 

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Re: June 2019 chemo starters

I’m day 7 in and mines been a little sore for 3 days xxx


@Chicken81 wrote:

Hello ladies, 

I have had my first EC chemo and so far no sore mouth. 

When is it likely this might happen? 

I'm back next week so wondering if I should pre-empt and ask for something when I'm in next wk? 


 

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Re: June 2019 chemo starters

Hi, you can buy Difflam over the counter, but you shouldn't have to.. I got given mine by the hospital.  It was not Difflam (as that's a brand name) but the hospital own stuff and then they gave it to me every chemo cycle.   If you are getting a thick furry white mouth/tongue it may be oral thrush and you need fluconazole for that.  I got tablets which I took 1 a day from the moment it started to fur and then for a bout 10 days.  They also gave me something to swish round my mouth but fluconazole is best.   Ask the chemo line or your Onc nurse about it, then you should get it every cycle with your other tablets.

It doesn't mean you will get the sore mouth every cycle and some don't get it at all, but its best to have something ready and as soon as I felt the slightly mouth problem I hit with the mouthwash etc.   

And just remembered I also used Biotene mouthwash after cleaning my teeth and sometimes during the day, its available over the counter (and you can get a toothpaste too) and its much milder than some mouthwashes and designed for chemo patients.. good when you mouth is sore.

Kip

x

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Re: June 2019 chemo starters

Hello ladies, 

I have had my first EC chemo and so far no sore mouth. 

When is it likely this might happen? 

I'm back next week so wondering if I should pre-empt and ask for something when I'm in next wk? 

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Re: June 2019 chemo starters

It’s especially frustrating when you are not necessarily feeling 100% anyway and even simple things can feel like a big effort!  I love and respect the people in the NHS, but the process and logic could really do with a rethink sometimes!  How daft that you have had to buy it over the counter when your doctor could easily have sent the prescription straight to a pharmacy of your choice?

 

I am sure you all do but just checking everyone has their free prescription card? 

 

Anyway, hope it helps with the sore mouth 🙂

 

Ruby xx

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Re: June 2019 chemo starters

How wrong is that, I told my doctors what I needed on  advise from oncology dept, they told me easier for doctors to prescribe than waiting for hospital. It’s not easy Is it 🙄 I would ring doc back and complain xxx I’ve been prescribed chlorhexidine mouthwash!


@mini mad wrote:

Re Difflam...

 

so rang my dr surgery n spoke to pharmacy.  Xplained about my sore mouth and the chemo and said nurse said to get Difflam mouth rinse from them as my nxt session was this friday but i should start to use it now.

guess what....  they wont give me any because 1. Ive not had this before from them  😳😳  and 2.

they need to see a prescription from the hospital....  👿👿👿

eventually sent my hubby off to Boots chemist to buy it over the counter...  what a joke...😖😖

just another day....   stay strong...🤷‍♀️🤷‍♀️ xxxx

 


 

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Re: June 2019 chemo starters

Re Difflam...

 

so rang my dr surgery n spoke to pharmacy.  Xplained about my sore mouth and the chemo and said nurse said to get Difflam mouth rinse from them as my nxt session was this friday but i should start to use it now.

guess what....  they wont give me any because 1. Ive not had this before from them  😳😳  and 2.

they need to see a prescription from the hospital....  👿👿👿

eventually sent my hubby off to Boots chemist to buy it over the counter...  what a joke...😖😖

just another day....   stay strong...🤷‍♀️🤷‍♀️ xxxx

 

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Re: June 2019 chemo starters

Same problem here mini mad xx


@mini mad wrote:

Thanks Kip for your  reply.

i gave the team a call about my sore patches in my mouth and was advised to start rinsing with Difflam asap. ..  have quite a furry tongue now.   Not sure if its oral thrush, will the Difflam be good for that too ??

having next treatment on friday so will get the nurse to take a look 😳😳

Hope everybody is having a  reasonable day....  keep going 💖💖💖💖


 

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Re: June 2019 chemo starters

Thanks Kip for your  reply.

i gave the team a call about my sore patches in my mouth and was advised to start rinsing with Difflam asap. ..  have quite a furry tongue now.   Not sure if its oral thrush, will the Difflam be good for that too ??

having next treatment on friday so will get the nurse to take a look 😳😳

Hope everybody is having a  reasonable day....  keep going 💖💖💖💖

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Re: June 2019 chemo starters

Hi nic I started last week. I would defiantly ask for anti acid meds and a mouth wash, cold cap I was told conditioner and a water spray and a hat to wear home. Lip balm also rocket lollies are nice as I wanted cold and sweet. Ginger biscuits good for sickness apparently but I only had the one morning I felt sick. Good luck and let us know how it goes xxxx take note pad to write down tablets and times to take as you forget lol x


@nicolaJ wrote:

Hi everyone, hope you are all having a good day (well as good as you can under the circumstances) this thread is great for picking up advice and tips. Even though we all have family And friends to support us it’s nice to talk to people going through the same thing

.

I am starting my first EC session next weds with cold cap. Any tips on what I need to take with me or anything I need to do to be prepared?

not exactly sure what the process is on the day just that the nurse said i will be there for a few hours 

thanks in advance

Nic xxx


 

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Re: June 2019 chemo starters

Hi everyone, hope you are all having a good day (well as good as you can under the circumstances) this thread is great for picking up advice and tips. Even though we all have family And friends to support us it’s nice to talk to people going through the same thing

.

I am starting my first EC session next weds with cold cap. Any tips on what I need to take with me or anything I need to do to be prepared?

not exactly sure what the process is on the day just that the nurse said i will be there for a few hours 

thanks in advance

Nic xxx