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Starting chemo in September???

elma55
Member

Re: Starting chemo in September???

Jo, hope the energy dip is only temporary xx

 

PTB, long may it last! xx

 

Jenny – I know Mansfield, have family in Nottingham so not far from you.  Are you having your treatment at QMC?

 

Barbs, I’m totally with you on the bad arm risk - I always offer my good arm and so far its been ok.  Think from what you’ve said best thing to do is tell them you have lymphodema regardless, that’s what I’m gonna do – even my onc said that in a life-threatening situation they’d use the at risk arm if they had to.  I’ve been told that for bloods they can use lower legs or feet as a last resort – come to think of it, Jenny had this done.  You can get a special LD wristband for the at risk arm – think it’s yellow which is probably code for LD-type issues, just hope it’s not too tight, ha!  

 

Ally, good to hear that you’re still doing well.  Have you looked at Trendco Hair Supplies, think they have a shop in Birmingham.  There’s also Browns of Tavistock which I’m using because they have an arrangement with my hospital.  Don’t live near Solihull but know Brum really well. xx

 

Hi Blue Topaz (am liking the name change!)  It’s important that we check our temperature regularly during each chemo cycle and not all hospitals provide a thermometer with the medications package which we're given on the day of chemo.  Most hospitals have a wig clinic and/or an arrangement with a regional wig specialist.  Some if not all, also provide patients in England with an allowance to cover the cost of, or put towards a wig of their choice.  Think this service is free in Wales, Scotland and Northern Ireland. xx

 

Beam and The Batman – will be thinking of you both tomorrow.  Let us know how you get on, if you can. xx

 

Blue_topaz
Member

Re: Starting chemo in September???

Hi Everyone

 

Hope you are all well.  Just to let you know that I have changed my user name from Dtebbs to Blue_topaz.  Sounds nicer.   

ht

I noticed that some of you are getting wigs and thermometers.  I start my chemo on 10th, but nothing brought up about these to me.  Are they discussed at the chemo session?

 

xDeb

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Re: Starting chemo in September???

Dont want to talk too soon but i am feeling really good today.....maybe i have worse to come 😞 Good to hear that everyone is surviving so far and good luck to those who are yet to have their 1st chemo. Barbs i having difficulty finding the FB page....maybe the old brain is affected afterall ? 🙂 Going to take a look at my wigs tomorrow as i had to order 2 blonde ones in as they only had brown ones to try on in the shop...i do hope they look ok as it will certainly cut down on the usual 1 hour blowdrying & staightening session LOL. I suppose if they dont look right i still have time to shop around ? Has anyone found any good websites for wigs ? Keep safe & brave ladies. Oh by the way does anyone live near Solihull ? xxxxxxxxx

 

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Re: Starting chemo in September???

Actually they don't look too bad. Not sure about the wig I've chosen though. I've selected two styles So we'll see next week when I go back to try them on. It's free so can't complain too much. So that's the head more or less sorted. If only the rest of it was that easy eh?
Boob problem is ok too. Take care. xx
Barbarella63
Member

Re: Starting chemo in September???

Aww thanks my lovely 👍 am trying to do nice things and not worry about Monday!! (Too much) glad your annabandana stuff is nice I look like a right gooner in mine hoping I look better when hairless ... Not likely but you never know
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Re: Starting chemo in September???

Good morning ladies. Another good night, yippee, but have woken up this morning with a bright red boob! Damion must be angry!! Have a wig appointment at the hospital at 12.15 so I'll pop into the chemo unit and let them take a look. Otherwise everything else seems to be ok. Temp is normal so that's a bonus. Lost count of the times I have touched wood and crossed my fingers over the last couple of days. AnnaBandana order has just arrived so delivery was quite quick after all. The scarves are really pretty and the sleep caps should help to keep the bonce warm at night.
Thanks for updated list Barbs. Don't know how we would all manage to keep track without it. I must have been really lucky on Tuesday. Good veins and no probs with the cannula. Don't mind carrying on like this. Try and have an occupied next few days to take your mind off trip to the bar. Its really not that bad. To coin a well used phrase. " it's doable". Have a good day.
Love and best wishes to Beam67 and Thebatman for tomorrow. I'll be thinking about you. xx
Enjoy the day today everyone especially if the sun is shining. Hope my fellow Dunkers are ok today. Love to all xx
Barbarella63
Member

Re: Starting chemo in September???

Updated list - no one today!!!








NME/DIAG. DATE/TMNT. NUMBER. LOCATION

Avonlady/no details. 28/8. #1. No details

Rachelr/WLE gde3 ER/PR/HER2- 29/8 FEC-T. #1. Reading
HEvg123/MX/ANC(3/?). 29/8 FEC-T. #1. Kent coast


Jo43/WLE/ANC(2/20). 30/8 FEC-T. #1. Bucks
Gold63/MX. 30/8 no details. #1. No details
Pips64/WLE ER/PR/HER2- 30/8 FEC. #1. Cheshire



Tracey46/no details. 3/9 FEC-T. #1. No details

hg12/no details. 4/9 FEC-T. #1. No details
Katepb/no details. 4/9 ???? #1. No details
Maseo/WLE/ANC4/18gde1/ER/PR+HER2- 4/9 FEC-T. #1. Coventry


Beam67/WLE gde3. 6/9 FEC-T. #1. No details
Thebatman/MX/SLN(0/2)gde2ER8-PR3+HER2- 6/9 TC. #1. E. Anglia


Barbarella63/MX ANC(2/16)gde2 ER+PR/HER2- 9/9 FEC-T. #1. Lincoln
Frenchfancy/MX/ANC(8/22)gde3 ER/PR+HER2- 9/9 FEC-T. #1. Chester

Dtebbs/MX/ANC2/? ER/PR+HER2- 10/9 FEC-T. Unknown
NIkki49/MX/ANC(0/11)gde3ER/pR/HER2- 10/9 FEC-T. #1 Fareham

Hazey85/MX/ANC/(24/43)gde3ER/PR/HER2+. 11/9 #1. Warwicks


Samjs/WLE. 18/9 FEC . Northants

Ally51/no details. 23/9 no details. #2 No details


PTB/no details. 25/9 FEC-T. #2 Wrexham


Lulu34/TBNC lung mets. ?? EC-/Genetipib? #1. Edinburgh


Cinderssarah/WLE/ANC(1/16)gde2ER+ No date yet.




Elma55/MX/ANC(12/15)gde3ER/PR/HER2- ??? FEC-T #1 Chichester

Bonnie8862/MX/ANC(14/16)gde3HER2+\ER/PR- ". ". Gatwick



Sarahsomething/MX/ANC. ". ". Berkshire

Jinxy12. Kent

Bonellie/MX/ANC(4/7)gde2 ER+|HER2? ". ". Unknown

Austigirl/MX. No other details

Barbarella63
Member

Re: Starting chemo in September???



Morning girlies another day in the parallel universe which is kind of what I feel we are living in!!! Ally glad to see you back and feeling ok, take my hat off to you for continuing to work! I work full time for Lloyds bank in a stressful target related job endless appointments with joe public so not going in as don't need the added stress and I don't want to catch anything!!! Work have been great to be fair, really supportive so I can't complain!! I am loving being off I must admit, and I have made the most of it whilst I have felt well!! Maseo, hg12 and kate hope your cocktail today was palatable and you are feeling ok!! Sam I bought a Braun in ear thermometer from amazon I like it coz its quick and easy, think I paid about £24 for it so its prob the same one you got! Thought the picture of you and yor mum on Facebook was ace you two are so alike!!! You should be planning the wedding of the year for next may when all this will be over and you can really celebrate in style and never mind 2 honeymoons....have 3 make up for the disappointments of this year!!! Don't think anyone will deny you that!!! PTB glad you are still ok apart from the taste issue, made a note to myself to get porridge, really don't want to poo pebbles!, ouchie! Would prefer the trots if there was a choice to be had hehe I've got loads of prunes too so fingers crossed haha Nikki your boob has taken up where SAMs left off so to speak!! Can't believe what they are draining from you that's horrendous really feel for you as its sooooooo uncomfortable when its all swollen with fluid, really hope things get sorted for you and quickly, see your at the swamp juice cocktail bar the day after ff and me you are not alone dtebbs is up with you! Always nice to have a bit of company- no one likes to drink alone!! See you're getting a portacath I've not been offered one, infact I was ok with the cannula until yesterday when I went for my blood test, horrid nurse wanted to take blood from bad arm, when I told her no lymph nodes she said " oh we do that all the time, when you have chemo your veins will collapse and we WILL take blood from your bad arm" I said I'd been told never to let anyone do that, she poo pooed this and said they do it all the time u less you have lymphodeama so I said we'll then what would you do? She said they'd find a vein elsewhere so I said we'll that's what you'll have to do with me coz you're not having that arm, she was not impressed and put the stickiest tape on my arm afterwords which was huge and really hurt to get off......**bleep** I did not like her and am now thinking I want a portacath as I don't want collapsed veins!! I shall have to ask when I go for the chemo, she really has worried me!! So I'm thinking you're lucky getting one! Elma you and I on the annual then!! Btw your thermometer comment cracked me up lol. Jo bad luck on the spots!! Another joy to look forward to, as if things aren't tough enough eh? Rest today and don't overdo things and hopefully you will recharge your flagging batteries! Jenny I think your scrapbook of memories is so lovely I would be thrilled if someone did that for me (they can leave out this year though haha) such a kind and thoughtful idea! Lulu thanks for the top tips (great having an old pro on board hehe) Hopefully I won't have a "bad trip" although glitter on the walls sounds quite cool lol I shall prepare to be there a few hours, really hope OH can stay at least for the first one but maybe ill just have to be a brave soldier (again) and deal with it on my own eeeeeeeeeeek don't want to....stamps foot!!
Anyway I'm off to town today to collect my new reading glasses (great add blind to the list) this has turned into a huge post! Hope you're all still awake! Barbs xxxx

Ps if you want access to the Facebook group superstars please dm French fancy it would be great to get a few more of you in on it xxxxx
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Re: Starting chemo in September???

Just had to say this before I head off to bed. Lulu you are a perfect Star. xx
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Re: Starting chemo in September???

Elma, we live in Mansfield which is suppose to be the middle of Sherwood Forest !!! Not many trees now though (when I was a girl) mind that a long time ago now. Don't be worried about your dunking the nurses are absolute stars nothing is to much trouble it made me teary to think all the studying and exams they have to do just to help people the pressure they work under and still have a ready smile to help us through each session and also the volunteers doing the tea ect. Same as I said it makes me blub!! Jenny xx
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Re: Starting chemo in September???

Well ladies, aren't we getting busy with our hobbies. I have just managed to finish a cardigan today for my grandaughter. Got back into knitting last year after a fifteen year break. Have lots of projects in the pipeline as well as embroidery, jigsaws, books to read and still a bit of gardening to do. Did want to do some decorating too but not sure whether that will happen now. Luckily I don't work so have decent amount of hobby time available.
Gosh, Nikki, what a day you have had. Hopefully things will settle down for you now and you get some much needed rest. Good to hear you have your chemo start date. Won't be long now.
Hope today's swamp junkies are home and ok. I'm still doing ok. Even managed a walk with the dog this evening. At the moment I do not seem to have any obvious SE's . Hope it's the same for my swamp buddies. Injections start tomorrow.
Seems like a quieter day for us tomorrow, but best wishes to any Stars who have appointments. xxxx
Lulu34
Member

Re: Starting chemo in September???

Nikki 500mls!!! OMG you poor thing i remember how painful my chest was with 100mls.... i really hope it starts trailing off soon but i know my mum had a seroma for almost 3 months.

ally im the same as you.... i went off last time quite quickly cos my work didnt really want me there and thought it would be hard as i work in cancer services but i was actually ok, but the chemo last time was really hard compared to my first lot.... this time im planning to work as much as possible and even though my head is full of mince i still like to go in and try and do things.... not so much patient related stuff as they are worried ill get upset, which i dont think would happen.... but as im going to be on and off chemo for the rest of my life i dont wanna use up all my sick time when i dont feel ill.... i know that most of you will not have to endure ongoing chemo but you have to do whats right for you and cycle no 1 is often getting to know whats gonna happen as you might feel ok on day 5 but on day 6 you feel rubbish.... but then you will have an idea of how its gonna be the next cycle.... but if your on a chemo that changes half way through your SEs might be very different on the second drug.

Sam do you have a maggies centre near you? i went to art therapy during chemo in 2009 and discovered i could actually paint... i used to do still lifes at school but after my art therapy i got more into landscapes and might do it again this time round as it can be a good way of relaxing and expressing yourself..... i know its not quite the same as crafts but if you think it would be a good outlet id say go for it.

hope today has gone well for you all.

barabara.... you asked what the firsta day is like.... it normally takes longer as you often go over paper work and sign consent and have an opportunity to ask questions.... how long you are there depends on the chemos you are having and how they are administered and if everything is straight forward.... my first time with chemo i went at 1pm and was home about 4pm each cycle.... with the last lot i was in at 9am i had consents, weighed and measured, cannula inserted, iv saline, pre meds, then my first chemo which was tax about 20 seconds later i was bright red and having hallucinations of seeing glitter running down the wall..... chemo stopped given iv hydrocortisone infusion, followed by iv antihistamine infusion, followed by restarting tax at very slow rate and was given over 4 hours instead of 1. then iv saline infusion, then carboplatin infusion and topped off with a final saline infusion. ended up being about 5pm when we left.... we did get a few cups of tea and a sandwich for lunch.... each cycle we was about the same somewhere between 6-8 hours..... now this isnt the norm. most people are in afor a few hours.... some chemos take longer some are very quick, some folk need repeated bloods or need to see an onc if they have bad side effects etc.

they should provide sandwiches and tea and biccies if your there for a while but most places will have a shop too where you can stock up. some units are really strick about having company and you are only allowed on your own, which i think its truley awful.... if you want a companion when your doing one of the worst things imaginable then you should be allowed a companion.

ifrom cycle 2 onwards i decided it was more fun to wear a pink wig so had a a different pink wig for each cheno... but i wore my special bright pink chemo heels every time.... my friend bought herself a new pair of chemo heels for each chemo lol

anyway time for me to try and have an early night tonight.... and iv waffled on too much again anyway. nitey nite.

love and hugs to you all xxx
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Re: Starting chemo in September???

Sam this is one of my favourite things to do I scrapbook or journal my granddaughters my eldest 21 st in December and I have been doing it since day one I will give her the album on her birthday with love and memories from her Nana over the years she has loved opening it and going through the stories it portrays now I hope to get to the same stage with her sister who is 7yr old ,I also did my sister a surprise one for her 50th she loved it I do hope it gives you as much pleasure as I have had over the years
Jenny xx
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Re: Starting chemo in September???

Not sure if i am doing the right thing but i am carrying on working as normal as possible ? I will go in when i feel ok and stay at home when i feel crap. Of course will stay at home if anyone has a cold etc in the office. I suppose i am lucky that i can work from home if necessary but feel as if i want to keep things as normal as possible...but if not possible will definately take up knitting again LOL xxxx

samjs
Member

Re: Starting chemo in September???

Nikki I can't believe how much you have had drained again.  Bless you, hope you are feeling a bit better after all that. xxx

Nikki49
Member

Re: Starting chemo in September???

Samjs - I work full time so know I going to be extremely bored with all this spare time so I popped into Hobbycraft today, have picked up a 1000 piece puzzle & a cross stitch and am also knitting a matinee jacket for my granddaughter due early October so yes I agree this chemo business is going to cost me a fortune x
Nikki49
Member

Re: Starting chemo in September???

Good evening stars, hope all that were dunked today are back & feeling good, fingers crossed for minimal se's.

I think I've just about seen everyone today:- onc consultant, onc nurses, consultant & physio.
Had the infamous seroma drained today omg 280mls from armpit and wait for it...... 500mls from boob!!! No wonder it was so sore.
Bloods have been taken & i have been informed of what to expect , having portacath fitted on Friday, signed consent form for swamp juice, kick off on 10th Sept, gonna try cold cap - nothing ventured nothing gained.
Having a pixie cut tomorrow to get me used to having little hair if it doesn't work but also so that I can manage it easier as have been told that whilst using cold cap try not to wash more than twice a week, no heat therefore no hairdryer or straighteners and to us natural organic products on hair in other words be really really gentle so the should length do that I have to get the straighteners on every day is gonna have to go 😞

Nikki xx
samjs
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Re: Starting chemo in September???

I have spent £50 on art materials today so that I can have a go at  journalling and do some more card making. Chemo is an expensive time. x

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Re: Starting chemo in September???

That sounds like a good idea, Sam, will help keep your mind occupied. We all need something. For me, now I've actually started chemo I find my concentration has returned as I don't seem to be worrying about things quite so much. Means I will be able to get on with all the hobbies I enjoy. xx
samjs
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Re: Starting chemo in September???

PTB, my hospital has told me not to work  as I am a tecaher and teach KS1. I ahve asked for emails on main points from meetings though! Feel the need to be kept in the loop.

Ordered a Braun thermometer online £24..... might send it back and nip down tescos x

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Re: Starting chemo in September???

Hi everyone
Elma, I'll keeping eating the porridge then. At least one end might be working properly! Had the urge to try a bit of chocolate this afternoon, cadburys dairy milk Turkish delight, just one square and I can honestly say I could have eaten the whole bar but I didn't want to risk it making a reappearance later on!! Things have been too good so far to spoil it.
Sam, ooooh lovely wedding plans and two honeymoons. Fantastic. I'm with you on crowded homes. Sometimes we just need our own space even if it is just to do the housework and yes I agree it's amazing how much longer it stays tidy when everyone is out of the way. Are you planning to work through chemo?
Ally, glad I was able to help with the porridge idea. Think it will be on the menu tomorrow as well with a bit of luck. Yes we do all love a good rant sometimes and I don't think it does us any harm at all. Being in the same boat helps a lot. At least that's one thing we all have in common, and I'm sure lots of the other crap we wre going through and need to moan about is connected to it too. So guess we will just keep on ranting between ourselves. One of us will surely be able to see the lighter side of it.
Jo, thanks for the heads up on energy levels. I seem to be ok today. Not planning on a session in the gym or anything like that, but at least I feel relatively normal. I'll look out for the spots too. No hair and spots. What a fantastic look!!

xxx
Jo43
Member

Re: Starting chemo in September???

Haha thats so true Barbs lol
Jo43
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Re: Starting chemo in September???

Arrr, my home town Georgina.
Where a bouts??
I"m in Bucks now but still have family there. x
Jo43
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Re: Starting chemo in September???

Well energy levels have taken a nose drive completely today and Everything is such a chore .......and spots!!!!  havent had them since I was a teenager Grrrr!! 

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Re: Starting chemo in September???

Samj's - i bought a digital thermomemter from Tescos for £2..15 which is great - i then got given 1 at the hospital yesterday !!! oh well 1 for home & 1 to take out.

 

PTB - thanks for the tip on porridge i will remember that as i love it anyway.

 

Just reading everyone's comments its good to know that i am not the only one who does not want to be in this club and will have a rant & rave every now & then. Just good to know that the support is there from some lovely ladies who i will probably not meet but will share a very difficult time with....but hey we will all come out the other side and this time next year it will just be a bad memory...onwards & upwards girls xxxxx

 

samjs
Member

Re: Starting chemo in September???

We are getting married next May PTB so we are having a mini moon in May half term (I am a teacher). Then a long haul holiday in the summer. I intend to really make up for it. Just sick and tired of being in this flaming house at the moment plus most of the house is here too- will be glad when they are at work and school  so  that when  I do the cleaning it stays clean for longer than 5 minutes!!   Sorry moaning again!!! xxx

elma55
Member

Re: Starting chemo in September???

PTB glad you had a good time even if you didn’t get a foot massage! Thanks for the lowdown on what to expect.  My OH will be impressed that you’re eating porridge, it’s good for constipation too!  Hope the metallic taste disappears soon xx

 

Jenny – can’t imagine a time when I’d go off chocolate but a waistline might be worth it.  Are you anywhere near Nottingham itself?

 

handc, thanks for looking in, it’s good to know that se’s don’t affect everyone.

 

Jo – great that you’re still going strong – hope they’ve given you something for furry mouth.

 

Frenchfancy, as others have said, don’t feel you have to bottle things up – cyber rants can work wonders, hope you’re ok now xx

 

Lulu, you’re a godsend - thanks for your weighty 3 am posting, guessing from this you’re another night owl.  Flu jabs aren’t available at my surgery until 21st September (I’m away then) and hoping to start chemo on 24th so going to ask if I can have it a few days earlier as they should have it in stock, also pneumonia jab. Given the choice, think I’d prefer the underarm portacath but it’s still looking like a cannula for me – others seem happy enough with it so might just give it a go.  Edinburgh rocks (but you know that already) – got married there and get back as often as we can, might bump into you sometime  Smiley Happy xx

 

Barbs - I wont be having a meeting with the chemo nurse or a visit to the ward beforehand, and I haven’t signed a consent form yet – like you, have been told it will all happen on the day. Thanks for keeping the list updated, I’d be in a real jumble without it.

 

Ally – great to hear that you’re ok and nothing more than metallic mouth (like PTB) hope it stays that way!  Thanks for the mouth tips xx

 

Samjs – I’m thinking cheapest ear thermometer because they work fast and if mouth is sore might not be able to cope with the oral one.  BCN told me that armpit isn’t as effective for checking temperature, and I’m certainly not going to stick it where the sun don’t shine Smiley Happyxx

 

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Re: Starting chemo in September???

Thanks Sam for that. I am only taking small sips at the moment as I'm drinking so much water to flush everything through. Not eating too much at the moment either so hopefully extra calories won't be a problem. How's things with you. Have you started planning that holiday yet? It will be nice to have something to look forward to after all this crap is behind us. xx
samjs
Member

Re: Starting chemo in September???

PTB-  I find the laimon nice but rather strong so I am  using it almost as a juice and diluting it with sparkling water. Also it is really high in calories!!

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Re: Starting chemo in September???

Breakfast was ok. Had porridge, thought it might help line stomach. Everything still ok. Just chilling really and doing odd bits and pieces around the house. Have tried the laimon, Barbs, but maybe I should have tried it before chemo gob. It is quite pleasant though. Wonder if I can get it on prescription! Good luck with the wig later. I'm sure you'll look fantastic. GP will do my flu jab. Will check with onco when is the best time to do it. Ally glad to hear everything is ok. Seems we are on a similar level at the moment. Let's hope it continues. Stay in touch if you can and try the laimon for the metallic taste, it seems to tone it down a bit. Love to all xxxx
Maseo
Member

Re: Starting chemo in September???

I bought a digital therm. from the Pound Shop - am taking it in with me today to give its first outing.  Will let you know how I get on with it later as I am being dunked at 1:30pm today.

 

Georgina

samjs
Member

Re: Starting chemo in September???

Ladies what thermometers ahve you brought? I know i have to get one as my hospital doesn't give them out. x

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Re: Starting chemo in September???

Hi everyone i have been absent for a while just getting my head around starting on the band wagon. Anyway 1st one done & dusted and feeling pretty good today. Like you Barbs i was a little in the dark as to the procedure as i had my assessment & chemo on same day (yesterday). It was a little overwhelming going into the unknown but everyone was great. I opted for the cool cap which is uncomfortable but not unbearable. Had to wear it for 1/2 hour before treatment and 2 hours following so 4 hours in all. I took mags with me and a snack but was supplied with tea all day long. The one thing that was stressed to me was to look after my mouth, regular teeth cleaning and to gargle with salt water after taking in food. I have a nasty metallic taste in my mouth but no other effects...hope this carries on ? Not sure if i will continue wth the cold cap as you cant use heat on your hair or have colourants and with my hair being a little unruly i dont feel as though i can give in to looking a mess...Ha Ha ! i have to pick up wig on Friday following a delay with the suppliers so i guess i will make the decision following that. Barring any infection my next session is on 23rd September but good luck to those just about to start...If we keep on sharing experiences & tips we shall pull each other through xxxxxx

Maseo
Member

Re: Starting chemo in September???

Just read Barbs list  - sending wishes to Katepb and hg12 who I understand are being dunked today.

 

Will have to compare experiences later?  Big hugs to you both.  Stay positive.

 

Georgina.

Barbarella63
Member

Re: Starting chemo in September???

Morning girls, another day nearer to initiation lol

Jo I've found you on the Maisie's page and sent you a frien request accept it and ill get you into the superstars!! Glad you're feeling ok apart from,the furry mouth, ironic as its probably the only furry thing you're gonna be left,with haha, not heard from Ally or Tracey yet, hopefully today and they are ok bless them! Thanks for the nail varnish tip Bonnie got to add that to the list, worth a try and another excuse to spend dosh lol.Nikki hope you are dosed up on the antibiotics and starting to feel better bless you. FF big hugs to you, sorry you are having a crisis hope it passes soon and don't forget we are here willing and a le to listen to your moans rants upsets whatever, dare say we will all have our moments through this and not all of them cancer related, in fact sometimes its nice to talk a out something else!! So feel free to share if you want to we are here ready to put in out two penny worth hehe. beam you're up with the batman on Friday she's great and up,for a fight I reckon she's a force to be reckoned with and a good one to have as your wing man!!!lulu your tips are great, I really hope I am one of those that find it a bit of an anticlimax, I want to put,it in the "no big deal" box and jump up and down to make sure the lid stays on!!! One thing, what do you suggest we take on the day? I'm down at 2 so will have had lunch, no idea how long I'm gonna be there or what's gonna happen, I haven't had a tour or anything, 5 mins with the Onc signing the consent and a phone call from,the unit telling me to report on the 9th at 2 and that's it!! So I'm a bit in the dark as to how they do things! I'm thinking ill take the iPad trashy mag maybe sunglasses so I don't scare anyone with my brows hehe and then I can stare at people without them knowing hehe , maybe a snack? Take it ill get a cuppa!!!. Btw I've updated the list to include both possible chemo treatments you are in the running for!! Lucky you living inEdinburgh its so lovely, my store daughter went to Uni there lucky thing!bonellie you can still be a star and start an October group I still check in regularly with the August girls, and we will want to know how you're getting no so ill keep you in the list if you like and you can let me know when,you get a definite date. Good luck with your results on Tuesday hope its good news! As for reflexology I'm having that its FAB thoroughly recommend it to everyone!! PTB great that you had a good nights sleep, hope for us all then, sounds like you're doing really well apart from the bad taste, fingers crossed I'm gonna be the same, sounds like you're dealing with it brilliantly! Have you tried that laimon fresh for the nasty mouth? Maisie's seem to love it!! Hope breakfast was palatable and you continue feeling good! Did you have a flue jab? I haven't been offered one but to be honest I've had it wice before and both times I was really poorly despite the act its not a live virus bizarre but its putting me off having another! Off to collect my wig today and need to get to he hospital to get my bloods done, its all go,this cancer lark!!!! Have a good day girls and hope hg12 Kate and Maseo are feeling ok and that side effects are minimal for you Barbs xxxxxxx



NME/DIAG. DATE/TMNT. NUMBER. LOCATION

Avonlady/no details. 28/8. #1. No details

Rachelr/WLE gde3 ER/PR/HER2- 29/8 FEC-T. #1. Reading
HEvg123/MX/ANC(3/?). 29/8 FEC-T. #1. Kent coast


Jo43/WLE/ANC(2/20). 30/8 FEC-T. #1. Bucks
Gold63/MX. 30/8 no details. #1. No details
Pips64/WLE ER/PR/HER2- 30/8 FEC. #1. Cheshire



Tracey46/no details. 3/9 FEC-T. #1. No details
Ally51/no details. 3/9 no details. #1. No details


hg12/no details. 4/9 FEC-T. #1. No details
Katepb/no details. 4/9 ???? #1. No details
Maseo/WLE/ANC4/18gde1/ER/PR+HER2- 4/9 FEC-T. #1. No details


Beam67/WLE gde3. 6/9 FEC-T. #1. No details
Thebatman/MX/SLN(0/2)gde2ER8-PR3+HER2- 6/9 TC. #1. E. Anglia


Barbarella63/MX ANC(2/16)gde2 ER+PR/HER2- 9/9 FEC-T. #1. Lincoln
Frenchfancy/MX/ANC(8/22)gde3 ER/PR+HER2- 9/9 FEC-T. #1. Chester

Dtebbs/MX/ANC2/? ER/PR+HER2- 10/9 FEC-T. Unknown


Hazey85/MX/ANC/(24/43)gde3ER/PR/HER2+. 11/9 #1. Warwicks


Samjs/WLE. 18/9 FEC . Northants

PTB/no details. 25/9 FEC-T. #2 Wrexham


Lulu34/TBNC lung mets. ?? EC-/Genetipib? #1. Edinburgh


Cinderssarah/WLE/ANC(1/16)gde2ER+ No date yet.

NIkki49/MX/ANC(0/11)gde3ER/pR/HER2- ". ". #1 Fareham


Elma55/MX/ANC(12/15)gde3ER/PR/HER2- ??? FEC-T #1 Chichester

Bonnie8862/MX/ANC(14/16)gde3HER2+\ER/PR- ". ". Gatwick



Sarahsomething/MX/ANC. ". ". Berkshire

Jinxy12. Kent

Bonellie/MX/ANC(4/7)gde2 ER+|HER2? ". ". Unknown

Austigirl/MX. No other details



Maseo
Member

Re: Starting chemo in September???

Hi Barbs
I am in Coventry
Georgina (Maseo)
Guest user
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Re: Starting chemo in September???

Now back.
Beam67, lovely to hear from you and glad to hear things are improving on the family front. Hope you manage to see your boys all suited and booted. For hand sanitiser try the discount shops. If you have one locally I got some from UK discount. Btw Diazapam rocks and it's ok to keep taking it through chemo apparently. We'll all be junkies by the end of this. Lol.
Lulu, thanks again for all your info. What would we do without you. Hope everything is going ok with you
BonEllie, sorry to hear we might be losing you but please stay with us for now at least until you know your date. Then perhaps if it's October you could start a new thread and pop in and out of both. Best wishes to you
Right that's me done. Off to attempt Breakfast. Good luck to everyone today. Have the best day you can. Lots of love to you all. xxx
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Re: Starting chemo in September???

Sorry Frenchfancy. Hit the send key by mistake. Je t'envoie beaucoup d'amour. X
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Re: Starting chemo in September???

Goodmorning all,
Awake early but one of the best nights sleep I have had for weeks. Luckily only SE at the mo is metallic mouth so might make for an interesting taste to food later and water tastes extremely unusual. not much of an appetite yesterday either before or after chemo, but was advised just to eat little and often, so will try that today.
Barbs, totally understand the meltdown bit. Hopefull like me you'll be fine once you get started. In fact it was quite a weird experience. I actually felt quite relaxed. Drugs seem to be effective so far but only starting on the more powerful stuff today so we will see. Emend is apparently is the "king" of anti sickness drugs and kinda like a last resort one.
Bonnie, thanks for the tip on nails good excuse for another treat - new nail polish!
Frenchfancy, we are all entitled to a meltdown mini or otherwise. Why do you think I have been on diazapam for the last few weeks., I can't imagine what I would have been like without it. I think all of us feel the same as you about airing our views. I agree though thtis is all crap and none of us should have to deal with it, life can be hard enough. Je
BonEllie
Member

Re: Starting chemo in September???

Hi all hope those of you who have had your treatments are doing okay and those of you about to have them have minimal se' s.

 

Unfortunately I won't be joining the September Stars, my appointment has come through with the oncologist and it isn't until the 25th Smiley Sad .  Hope you don't mind if I lurk around with the Stars although I will join the October group.

 

Should have the results from the node clearance next Tuesday and also my referral has come through for the complimentary therapy and appointment for that is on the 26th so will hopefully get some  Reflexology.  Also got to have the interview with HR for the first stage of  MOA (Management of Attendance).

 

Anyway think it's time to get back to some sleep.  Goodnight everyone, take care and stay strong xxx

Lulu34
Member

Re: Starting chemo in September???

With regards to the flu thing i had it when i was on chemo and just meant it may not work quite so well so had to have two doses a week a part i think.... Your gp should be able to advise you... Having it on chemo wont give you flu or cause any problems but would recommend having it beofre yo start if possible but if you already started try and choose your "wellest" weeks.

A lot of people our age wont have had the pnemococcal vaccine (pcv) and i was recommended to have that beofre chemo last time around.... Think form memory its only a one off and you never need it again but worth considering.

Taxotere can affect our nails and some people find painting them dark colours helps, however the nails actually start growing under the fingers and you will probably find they would fall out or not regardless of the nail polish.... I painted mine dark and they still got ridges, turned yellow and fell off anyway.... And sometimes still do.... Last thumb nail fell off in march a year after last chemo and only recently lots a baby toenail. Not every body has nail problems so some people whizz through with no nailpolish and nails intact and others go through bottles of black varnish and lose theirs.

A lot of folk find chemo day a bit of an anticlimax.... You go with such anticipation of the swamp juice and by the time you are leaving yoru like "was that it?" Different chemos have different effects at different times.... Fec normally hits fairly quickly from a couple of hours after wards and you can feel a bit rope for agood few days.... Tax onnthe other hand you feel pretty jolly good for about 4 days then the tax train hits and you can feel a bit lousy. But ultimately we are all individuals and what one person expereinces might be compketely different to somebody else.

And FF we are all here to support you... Other crappy things are happening as well as cancer ir because of cancer so dint be afraid to share them.... Iv had good old moans on here in the past about daughters special needs, my boyfriends lack of support and even my marriage breakdown over 10 years ago and general all round grumps.... We are not in competition just here to try and help each other with any problems cancer or non cancer related.

Elma your lucky you are getting a porta cath... I had a hickman line last time and will prob get ine again this time but ideally id love a portacath instead as i can have that in for ever really which would be great as ill be on and off chemos for a long time.... I have heard some people getting it inserted under their arm or away from their chest so they disnt ahve a visible lump, scar or reminded near the breast that they were having treatment... Hickman line is 2 big long wires dangling out the chest and i now have the 3 scars from where it was instered and removed so portacath would be better in my mind even in the chest. The picc is inserted in the arm again its the dangly lines but the end of it still sits at the entracne to the heart so the picc and the hick amn have a higher risk for infection as they protrude thriugh the skin where the portacath ahs a lower risk due to it being completey under the skin but needs theatre time to get it inserted... Let us know whatbyou decides.

Sam so sorry you are having a bad time right now bit hooe you can do other fun things to make up fornthe lack of holiday maybe you can do something in the uk.

Barbarella i wont be havingnthe carboT now as dont fit for that trial and might have EC-T or genetipib (sp) which is a new trial drug and apparently its good for TNBC so once iv had the results of my bronchoscopy i might be having that instead.... And btw also for your list im from edinburgh 🙂

Also for scarves and things check out places like asda, matalan and primark for cheap and cheerfull scarves i have some fab ones from these shops for a about a fiver so much cheaper than dedicated shops but do just as good a job.

Also for folk on FB tehre are younger womens groups, TNBC groups and secondaries groups if anybody wants an add just drop me a pm and il tell you hw to go about it.

And sooo glad to finally be in our Fb group and look forward to catching up with you all there too xxxx

Good luck to all todays swamp juicers too xxxx

Nite nite xxxx
frenchfancy
Member

Re: Starting chemo in September???

Am just so bloody tired of this, literally and figuratively speaking. Had this mega long post written, telling you all why the last couple of days have not been good at this end, but figured, as we're all going through our own dramas in different ways, that it would be very unfair to do this. So, enough to say is....its crap, I hate it, so **bleep** off and leave me alone!! NOT you ladies, of course! Everything else!!! I will be more positive next posting, I promise!!! 😞
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Re: Starting chemo in September???

Hello Stars,

I haven't posted much on here but I try to read every day and it really is so informative - I have a notebook full of tips and questions.  Shame I didn't know about the flu jab thing, as I had my pre-chemo talk thing today at Cheltenham Oncology Centre.  It makes it all so real and scarey now, D-Day is Friday for me.  There seems to be so much to take in!  Does anyone know where I can get large containers of hand sanitizer?  With two strapping lads at home, who are always out and about, I have decided that is one way to keep germs at bay.  I looked in Asda today and they only had travel sizes.  

The boys have been much better this week, I think a talk from their dad has helped.  Mind you, I have my own demons there as he is getting remarried the week following my first chemo, so I don't even know if I will be able to go and see my boys all suited and booted, I just hope the SEs will be minimal.  The lack of planning is doing my head in!  Everyone at Oncology was so kind, I have visited the ward, and reckon I will bring one of those eye masks you get on an airplane and just "zone out" for the duration.

Managing to keep the stress, fear and utter panic at bay with Diazapam - well, with all they are going to give me, I figure one more drug can't hurt too much.  
Still scared beyond all rational thought.  Am going into work/school tomorrow to see the new Y7s and Sixth Form, I will have 2 days before Friday and FEC.  

Best of luck to anyone who is having it tomorrow.  And if anyone is attending Cheltenham, do let me know. x

frenchfancy
Member

Re: Starting chemo in September???

Evening all, had a mini-meltdown, nothing serious, after hosp appt yesterday (another post) but getting to grips with all this again now.
-PTB, glad all ok today. Your dunking' tells me what to expect (same hospital as me in case anyone wondering) and I have to say not impressed with no foot massage...I'm going elsewhere!! Although, you did say tea & biccies right? Maybe I was being a bit hasty haha 😃
-Tracey & Ally, hope you're doing ok after your dunks as well.
-Kate, Hg12 & Maseo wishing you all a restful nights sleep, if its possible & good luck for tomorrow
-jenny(Avonlady) glad to see you're back with us & hoping next round is a lot easier on you 😟 And going off chocolate is deffo one SE they should warn you about. Simply not acceptable! Haha
-Nikki, seroma again...seriously!! These things just don't know when to quit. Stay strong lady & good you have start dates now as well
-Debs, big welcome to you. We're a friendly bunch & happy to help with explanations (wherever possible!) for any bits you don't get first time round. It does take a few goes to understand it all. Too much info all at once sometimes.
-Sam, you know how bummed we all are about your hols. Try not to dwell on it too much if possible. I'm finding slightest thing sending me into tailspin @ mo & it just means we lose more control. We will not let this thing beat us!!
-Elma, I'm with you! The hair stays on...at least for a little while longer anyway. My OH seems to think might be less traumatic not to actually see it coming out & get rid of it in one go but as yet I'm not convinced. Watch this space though! My PICC goes in on Thurs & have to say do have slight reservations but in comparison to cannula, hands down the right choice for me
-Bonnie, fab tip for nails as only found out about that poss SE recently. Silly things like that are just gonna make us feel even less attractive, like that's possible with one boob and no hair. Woohoo can't wait!!

That's all for me checking back in for now.
Bonne nuit tout le monde xx
Hazey_85
Member

Re: Starting chemo in September???

Hi Stars

 

 

Avonlady  its nice to hear from you, glad you are feeling better now and hopefully you won't be feeling that crappy next time.

 

PTB  glad to hear youre back safe hope you manage to get some rest tonight and the bag of goodies they gave you help keep any se's at bay so that sick bucket isn't used.

 

Nikki  Have you started them antibiotics?? hope they do the trick it's just crappy!! will they drain it again?? I'm in a place called Balsall Common not too far from Solihull.

 

Bonnie Thanks for the tip on the nail varnish that'll be one i add to my list

 

Jo  Once Barbarella added me as a friend I was sent a private invitation to the fb group, have you had a friend request yet??

 

Thanks for the update in list Barbs 🙂

 

Also wishing katepb and hg12  best of luck with their dunking tomorrow, hope all is well when you manage to report back.

 

Love and hugs

 

Nighty night xxx

 

Jo43
Member

Re: Starting chemo in September???

Hazey where abouts in warwick are you??

Bonnie8862
Member

Re: Starting chemo in September???

Quick handy hint .. My onc told me to paint my finger and toe nails before every taxotere (docetaxel) as its possibly the light reacting with your nails and the drug that makes them break and flake .. Ill see if it works can be worth but a try ..
Jo43
Member

Re: Starting chemo in September???

Evening Stars 

 

Just wanted to welcome Avonlady back ...... good to hear from you . We were all so worried about you. Sounds like you have had a rough time of it but so glad your back and feeling well enough to post.

 

Welcome back PTB  so glad your dunking went well today dispite a few wobbles along the way hun.

Hope Ally and Tracey are doing ok too?? 

 

Sam , keep your chin up hun, start planning next years BIG!! holiday instead , something to aim for. xxx

 

Good luck !!!!    to you ladies taking your dunking tomorrow. xxxxx

 

How do I join the Stars FB  Group??

 

All still ok with SE"s nothing major to report except the horrible furry mouth the last 2 mornings Yuke!!

 

Love to you all. xxx

 

Barbarella63
Member

Re: Starting chemo in September???

Avonlady...hurray you're ok.....just about! We were worried about you! Here's hoping you continue to feel better! PTB welcome ack glad it wasn't too horrendous am thinking ill be having a melt down of my own Monday but you made me feel better about it! Hope the drugs you scored off the chemo ward (lol) are effective! Much love to you list updated. Date bs have updated list for you too, you are up the day after frenchfancy and me yikes!! We will let you know how it gets, try nt t worry too much there's nothing we can do so gotta go with it! Lots of love to Maseo, hg12 and Kate tomorrow fingers crossed for you girls xxx




NME/DIAG. DATE/TMNT. NUMBER. LOCATION

Avonlady/no details. 28/8. #1. No details

Rachelr/WLE gde3 ER/PR/HER2- 29/8 FEC-T. #1. Reading
HEvg123/MX/ANC(3/?). 29/8 FEC-T. #1. Kent coast


Jo43/WLE/ANC(2/20). 30/8 FEC-T. #1. Bucks
Gold63/MX. 30/8 no details. #1. No details
Pips64/WLE ER/PR/HER2- 30/8 FEC. #1. Cheshire



Tracey46/no details. 3/9 FEC-T. #1. No details
Ally51/no details. 3/9 no details. #1. No details


hg12/no details. 4/9 FEC-T. #1. No details
Katepb/no details. 4/9 ???? #1. No details
Maseo/WLE/ANC4/18gde1/ER/PR+HER2- 4/9 FEC-T. #1. No details


Beam67/WLE gde3. 6/9 FEC-T. #1. No details
Thebatman/MX/SLN(0/2)gde2ER8-PR3+HER2- 6/9 TC. #1. E. Anglia


Barbarella63/MX ANC(2/16)gde2 ER+PR/HER2- 9/9 FEC-T. #1. Lincoln
Frenchfancy/MX/ANC(8/22)gde3 ER/PR+HER2- 9/9 FEC-T. #1. Chester

Dtebbs/MX/ANC2/? ER/PR+HER2- 10/9 FEC-T. Unknown


Hazey85/MX/ANC/(24/43)gde3ER/PR/HER2+. 11/9 #1. Warwicks


Samjs/WLE. 18/9 FEC . Northants

PTB/no details. 25/9 FEC-T. #2 Wrexham


Lulu34/TBNC lung mets. ?? CARBO-T. #1. Unknown


Cinderssarah/WLE/ANC(1/16)gde2ER+ No date yet.

NIkki49/MX/ANC(0/11)gde3ER/pR/HER2- ". ". #1 Fareham


Elma55/MX/ANC(12/15)gde3ER/PR/HER2- ??? FEC-T #1 Chichester

Bonnie8862/MX/ANC(14/16)gde3HER2+\ER/PR- ". ". Gatwick



Sarahsomething/MX/ANC. ". ". Berkshire

Jinxy12. Kent

Bonellie/MX/ANC(4/7)gde2 ER+|HER2? ". ". Unknown

Austigirl/MX. No other details

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Re: Starting chemo in September???

Ps I live in Nottinghamshire