Welcome to mchales21 and sooz.
i am posting at this late hour as have just been to tescos to buy more ‘just in case’ essentials. Been on the phone most of the evening so a late shop had to be done! I figure sleep will be hard to come by tonight as I start the chemo tomorrow. I feel tonight is like my last night of freedom!
Emma, I am so sorry you are delayed again but as Marie says, you should be an honorary Moonie, I will miss your posts if you desert us completely!
Best wishes to all
Rachel x
Morning everyone and welcome to all new Moonbeams! Lots of love to Angela- we are all thinking of you. I found as new bits of ‘news’ came unwanted I first reacted with anger then resolve kicks in as you have to get on with it! You sound strong- doing a fantastic job. Sunshine and Zuzy- great rspect for getting in to work! My SE not bad but feel queasy and feeble- as well as terrified to step out the front door today following my drastic hair cut yesterday- what if someone recognises me? What if thy don’t??!
Welcome to Soozy and Namaste and go0d luck- PICC line not nearly as scary as it sounds- I wish I could have had the Oncotype too- I guess not in the right area- but it sounds a terrific advance for hormone positive cancers and let’s hope will help future woemn to avoid chemo.
Marie and Caz- you need to take it easy. I feel guilty because I am not really doing the exercises properly-often not at all- is snybody else? I did early on but there is too much going on- I did not have full node clearance at first op but couldn’t have further surgery on armpit because of other things so my lymphs will be ‘cleared’ through radiotherapy as I understand it.
Rachel you sound so well prepared- well done and hope all goes well- and Littlescoot too this week? Don’t forget to take in something to chew/suck- icy or minty or fruity- for one of the FEC when your mouth goes strange.
Love Barbara x
Morning Moonies, the oncotype test sounds very interesting - wasn’t something I knew about before you mentioned it so will speak with my onc when I see her on Friday = from what I understand its more to do with finding out more about the type of cancer you have and the chances of that coming back if just on hormone therapy alone rather than how well it will/won’t react to chemo - am I right? The want to avoid women going through the trauma of chemo when they have a very good chance of non occurence without it, and also to detect women who may not have been recommended chemo but have been shown to be very likely to get a recurrance - am I right?? Whatever its so great to see the advancements they are making on a day to day basis, we are all still pioneers I think.
From what I have read if you have node involvement (yes) and a larger than 5cm tumour (yes) they don’t do it as they want to zap you irresepective of the results which is probably why I wasn’t at least told about it (hmm). To be honest my gut feeling has always been to have the chemo just to give me the best possible chance of kicking it’s proverbial arse.
Right enough on that one…
Barbara- I have been trying to do my excercises twice a day mainly because I have quite bad cording in my upper arm, I agree though its tricky to know when to fit them in, I’ve taken to doing them once I’ve dropped the kids off at school in the morning and just before I go to bed.
Soozy, Mchales & Namaste - welcome to the group - I feel privileged to be among such a wonderful and supportive group of ladies.
Emma - sorry that you have to be delayed (I hate the waiting…waiting…waiting…) but really hope that this is fate and your Oncotype report comes back with positive results. Please keep us in the loop and pop in as an honorary moonbeamer.
Good luck Sooz and Rebecca will be thinking of you both today and Littlescoot for tomorrow.
Marie hope your feeling better this morning, Sunshine, Zoozy, Barbara, Alex, Deborah, Jane & Jill hope the SE’s are being kept at bay. (sorry if I’ve missed anyone off the list - think we’re up to 26 ladies now)
I had my hair cut short yesterday - so weird doing the school pick up with lots of mums commenting how nice it looked and not knowing the reason behind it (still don’t know whether to tell any of the school mum crowd its such a hard thing to tell people/deal with the reactions), and today some lovely ‘post surgery’ bras I ordered online arrived and are way more comfortable than the ones I was given so I’ve put all my ‘pre-surgery’ bras in a box in preparation for when I can wear them again - felt quite theraputic.
Lots of love to you all, sorry this has turned into a mammoth post - better get on with my exercises!!
Aly
xxxx
Has anyone negotiated the headwear websites yet? Turbans, wraps, scarves etc I am bewildered but need to order stuff (not least my head feels incredibly chilly now!)
Hi everyone.
Just wanted to say thanks to everyone and their support. It wasnt the news I wanted but it is still very doable and life will go on albeit with more treatment than I intended. I am still looking at having chemo during May so would still love to be part of this group. Wanted to keep this post short and sweet as I am aware I have been posting losts recently and I need to move away from this lap top. Thanks again to all you lovely ladies and your words of encouragment.
Angela xxx
Morning moonies,
well today I feel like a different woman slept really well and have made a bread and butter pudding as I really fancy one … No way am I pregnant before anyone asks!! That would mean sex and that went out the window about February lol.
Barbara2013 I have a selection of bandanas and scarves also a couple of soft cotton ones even if I don’t lose my hair I still wear them i have very thin hair and my head burns very easily.
Ally 1971 if they are good school mum crowd tell them. But also tell them that you need support and some days you may need help with picking children up. I had my grandchildren living with me this time last year and I know that there is no way I would have been able to pick them up yesterday how I felt.
Rara you will be fine it’s so much easier than we think. Think of the chemo as a Ninja fighting for you lol xxx
last but not least welcome Sooz.
appt went well yesterday it was just to make sure I knew too increase my steroids if poorly and to give me a hydrocortisone injection to keep in fridge incase i get sickness and can’t keep steroids down.
Have a good day everyone
Marie
Hiya moonbeams, hope you are all well.
welcome all new moonbeams, sorry you’re here but looking forward to getting to know you, I’m now on day 9, have had minimal SEs and went back to work yesterday, so far it has def not been as bad as I was fearing, fingers crossed it continues like this!
Angela, am thinking of you blasting those cells away!
Barbara, I went to a headstrong session (you can find out about it on this website) and got to try on lots of different styles and colours, I found it really good and useful and would recommend it, I’ve bought a few from Annanandana and have my eye on a few more as they are cheap so can have lots of different ones.
good luck sooze, Rebecca and littlescoot
Zuzy xx
Just a quickie! Home from chemo . I had missed a vital part of the talk yesterday, my head must have been in the clouds! I didn’t know it was syringe by syring and then another syringe. I thought it was all thru a drip bag thingy! Nurse was fab when I cried …I cried with relief mixed with anxiety mixed with god knspew what, not like me at all pre bc! Anyway, it was fine! a little woozieness which passed quickly. Going for a lie down now as sleep deprived from last night!
Bless you all and Marie I am so glad you are feeling better xx
rachel x
Thanks Marie and Zuzy for scarf tips- no headstrong sessions nearby so been to annabandana and ordered! Glad went well Rachel- such a relief to have first one over!
Hi everyone,
I feel like I know you all already as I have been following your thread for a few days but only just decided to join the May Moonbeams - if you’ll have me.
I had my first chemotherapy treatment (FEC-T) on 1st May so day 9. So far not too terrible although I ate too much Saturday night and paid for it for a couple of days with really painful indigestion and low mood as a result.
Unlike most of you I haven’t yet had surgery which worries me a bit but the doctors feel this is the best way to approach my treatment so I guess I need to trust they know what they are doing. So far no spread to lymph nodes or elsewhere and really hoping the chemotherapy keeps it that way.
Lots of great tips already noted - I hope to add a few of my own as they arise. Tip 1 - don’t eat big meals!
Feeling a bit lost as I have had to stop working completely - I am a primary school teacher - due to immunity levels. trying to keep busy by doing planning and other administration type jobs for the school but am finding it hard.
Anyway, keep up the good work ladies. This constant chat has got to be therepeutic for us all.
Caz i so love comment about zapping those LF (little …) each time I started to feel down mouthed today I thought of that and it made me smile, thanks.
Marie glad your feeling better today wish I was a good baker maybe I will get some practice in now I am of work.
Rara I know what you mean about missing informtion I always take OH with me to the hospital he doesn’t miss a thing.
Zuzy its brilliant you are feeling ok hope we all can do the same (yes I am going to zap those cell right out of my liver and keep them out)
Think I might go and get some more head gear. Already got a wig but after our small spell of hot weather think it might be a bit hot some days. So going to get some hats and scarves for those warmer days (not that we have many in this country).
Welcome to all our new Moonbeams sure you will find the support on here as fantastic as I have.
Have a chilled out evening everyone.
Angela xxx
I got my hats and things from annabandanna and buff something xxx also Sainsbury’s for scarves xxxx
good evening moonies - hope is all ok with you all (or as can be expected) , hi to all the new ladies
hoping everyone who had chemo is doing well and no side effects or a minimal as can be expected
not much happening reallly with me, waiting for this heart scan which is bothering me a little. Chemo nurse phoned and said that as soon as scan done chemo will start within days so yet again I am waiting, waiting and waiting - might now be a moonie yet ;(
in terms of exercise I too am struggling with them, mainly as they are so painful, I am at the hospital tomorrow seeing the hairdresser so going to mention that I have an awful pain around the elbow, I hope this is not the start of lymphodema is it? my boob is very swollen especially the nipple area (sorry to be blunt) - 3 weeks post surgery is this normal?
I just had a quick look on the annabandana site and it seems very reasonable so if I get on with them might order a couple
Marie - glad you are doing so well
Rachel - hope it went ok today, let us know how you feel when you’re up to it and any tips
hugs to all moonbeams xxx
why is it posting twice urgh !!!
Hi Dodo, I feel the same about not being able to go into school once chemo starts. I start on Thursday 16th and having a PiCc line fitted Wednesday 15th so on last few days at school and I know I am going to miss the chaos of a busy primary school sooo much.
I too have been put straight on to chemo then surgery after and maybe ( but the more I read on here more likely) radiotherapy towards the end. A long journey ahead for us all! And i feel so guilty as I know it is going to be ages till they next see me in school.
Anyway best of luck and I hope you don’t get too many more side effects.
I am going to try cold capping and wondered if anyone else has any tips or advice for trying to keep hair.
Kindest Regards xxx
Welcome Dodo and Hello mChales we are kind of in the same boat, cos we’re having the chemo before the op. I’ve even been told I might have to have a second lot of chemo after the rads. At this rate the closest I am going to get to a holiday this year is listening to Desert Island Discs! I work with children too only a handful at a time as I’m a social worker but my job does take me into germy enclosed places like children’s wards and police stations so I am going off sick till the end of the sixth cycle and then some…I’m probably going to stay off til after the op when I know the next plan and I’ll take my “Mortgage Holiday” then. I am going to miss the contact with my colleagues and with the service users. I’ve been working part time in that job and I work at home the other part of the week- I’ve got someone to do that too so I can focus on fighting cancer.
Until I saw the ONC I was most scared of the nausea and vomiting, but since I’ve been having that morning sickness feeling with the tablets I’ve been on (Letrozole) I am pretty used to it and now the thing I dread is infections. But with the warmer weather (???) maybe we’ll have less challenge to our immune systems!
Hi everyone - thank you for the welcome 
My FIRST day, picc insertion then chemo (FEC100) went very well, I think the anxiety build up was worst thing for today.
The picc line insertion was okay although did sting for approx 5secs (you are warned).
Chemo was given via intravenous after receiving anti-sickness (intravenously) first
Got woozy with slight headache at very end of chemo, a paracetamol fixed that.
My only horror of the day was being told I have to give myself an injection 24hrs after chemo. Aaargh I can’t do that!!! Hubby not keen either, I managed to get appointment with GP nurse instead.
One of the meds(sorry don’t remember it’s name) was red and this affects your urine, your pee comes out red
Been given 2 types of anti-sickness pills to take for next three days and one other pack to take (as and when) if I get nausea.
Got my wig on standby (called ‘Kimberly’ in the brochure). Was going to get hair cut really short but instead will get the lot taken off because the wig is such a good match to my current style I’m hoping folks won’t notice the transmission.
I was informed side-effects may kick in tomorrow.
Correction to my last post - im having my treatment at Cherrybrook, Exeter RD&E.
Will keep adding a post of how it’s going hoping it will be useful to others. Oh one thing I have been doing throughout the day is drinking lots of tonic water, don’t know if it’s helping but so far I have been feeling fine!.
Best of luck to you all.
Sooz x
Today is the day! A new day a new journey! To everyone else starting chemo today good luck fellow moonbeams! Xxx
LS xxx
All the best for today Littlescoot. Every day from here on is one step closer to beating this b******.
Nice to find others who are having chemo first to compare notes with. I was beginning to think I was alone…
Hi everyone tried to post twice and lost it both times last night so gave up hope you are all well and welcome new moonies .emma so sorry you aren’t getting treatment as quickly as you would have liked,take care and heal quickly you could start the jug less June’s
Angela hope you are ok thinking about yyou good luck to everyone having chemo today ,Rara hope you feel ok
Had picc inserted yesterday apparently like myself my veins were giving trouble and after a 4 hr delay spent in a very hard NHs chair my turn came and like everyone before me there was a bit of bother inserting it after the 3 rd go(it would go in so far then recoil apparently I couldn’t feel a thing )
thankfully it decided to behave itself as I was starting to think I would be waving bye bye to chemo on tue for anyone waiting it wasn’t sore I’m just bit stiff and bruised from the poking around so im home pretty tired probably more to do with hanging around for ever .
Think I’m becoming like an old dog going to the vet very shortly they will have to throw a creme egg in the door to get me in the unit then bolt the doors quickly as I run through
Am of for coffee with girl from work who has had her first chemo for lymphoma we can compare piccs over a big bun xxx take care caz