Welcome Karen. I'm drawing such encouragement from the other ladies here, and I'm sure you will too.
I start chemo tomorrow afternoon - not sure I'll be so prompt with a post as you Lexi. You really are an example to follow!
Saw the wig lady today, and have decided to go from Arctic blonde (vitiligo, not L'Oreal, but I'm still worth it!) to strawberry blonde just for a change. My husband is threatening to call me Cooty, as in bald as a... Lot of black humour going on in the family just now!
Sleep well Moonbeams
Hi everyone,lexi hope you are still feeling ok after first treatment I know sometimes the nausea can kick in in the evening but fingers crossed for you having a good first experience
marie the physio popped my cording half hr of really deep painful massage but worked wonders and now only from elbow to wrist enjoy spending ur vouchers
hi Karen welcome hope you are keeping ok
was up for my tour of chemo unit ,lovely staff and hopefully all systems go for 14th ill be having fec d stay well moonbeamears xx caz
Hi Karen and sorry you have to join us! It's a great group.
alex, your posts on your chemo today have been so positive that you have allayed some of my fear, thank you. I also have to do the injections after my chemo starts. Hope it is easy! I am such a wimp since all this started.
marie, my armpit has come out in sympathy with yours today so I googled it and apparently it happens often 6 to 8 weeks after surgery.....exercises were harder to do to and made my eyes water so I stopped!
good luck to the ladies starting their chemo this's week
hi there everyone
would love to join the May Moonbeams - its looking like I will start chemo in May. I had lumpectomy plus full lymph removal on that side, I too am suffering the strange sensation on the arm etc, I am very numb still only had op on 18 April, so early days I suppose, very nervous about what is next and not looking forward to loosing my hair 😞
love and virtual hugs to all those having chemo ahead of me
Hi Moonbeamers, I'm home now, 1st FEC went very well, didn't feel sick at all, had my bands on so don't know if they were working, but I think I'll keep them up. Left the hospital and went to the Force building for a cup off tea, that tasted horrible, so taste buds definitely gone askew. Apart from that I felt really quite normal, but its 8.30 now and I'm really tired, just want my bed. I had one anti sickness tablet just now, got to three tomorrow and two the next, then one today after. Oh and tomorrow I have an injection to give myself to boost my immune system. There's so much to remember, then of course the picc has to be flushed next Tuesday.
Keep well everyone. Alex
Marie, I know what you mean about the cording. I had cording early on after my opp and it is painful, restricting and uncomfortable. But I have stuck to my exercises and I use E45 cream and just spend a little extra time morning and night just lightly massaging that area. My consultant checked it and said he could give me some cream if it became to uncomforable but said it will go but sometimes it takes months just continue with my exercises. Nearly 6 weeks on I can feel it if I over stretch but other than that it has nearly gone. Have a lovely time jewellery shopping tommorrow,lucky you, its good to spoil yourself. My OH is of work tommorrow so we are of out and hopefully he will spoil me. Good luck for Thurs chemo will be thinking about you as I am sure the rest of us are not far behind you.
Lots of hugs
Hi all, just thought I'd let you know the picc line doesn't hurt at all. My appointment was late as usual, but everyone's really caring. Picc was done by 11.30ish, them had to go for X-ray. Had to wait again. Started chemo at 1.15 just after a quick tuna roll. The red stuff's gone through so I'm on the flurouracil now. Feel a bit woozie, but otherwise pretty normal so far.
Yvonne - thanks for all the valuable advice- I was wondering about mouthwashes and other strong tasting stuff.
Thanks Meggy and Martha for your best wishes too
Nanniereeree just have a swell time tomorrow-earrings are definitely called for when wearing scarves or hats. And good luck Thurs.
hope everyone is feeling o.kish I have now got a lovely cord in the pit of my arm wow they are painful just appeared overnight will ask my BC nurse about it on Thursday I think just continue with the excercises..
apart from that I feel on top of the world!
I see the subject of work keeps coming up my BC nurse said I could work in between chemo but as I work at the hospital I don't think it is. she did say the last week of each cycle but I'm still not sure? It would only take one person with a bug to give it too me!
have just put the heating on as I'm freezing and do not want to get a cold.
Going to go to town tomorrow and spoil myself at the jewellers with the vouchers I got last week I think and get anything before chemo on Thurs
I’ve just dropped by from the January Jems. I’ve now had 5 x FEC and still have 3 more to go, then rads. So far 4 out of the 5 treatments have had to be delayed because my white cells were too low but I’m getting there, the end is in site.
The chemo has been harder than I expected but mainly because my ONC tells me I’m very sensitive to it. At least if it’s making me feel bad think what it’s doing to the cancer
Here are a few tips, things that have helped me.
First off – keep a diary, write down how you felt, slept, ate etc each day then you can refer to it for the next treatment and know what to expect. It’s also good to show the ONC, just in case one of your SE’s is a bit unusual.
If you find you are sick after the first session ask for a drug called EMEND for the second one. You take it an hour before treatment and then for 2 days afterwards and it stops the vomiting. It’s very expensive so not all hospitals give it unless you need it.
Omeprazole is brilliant for heartburn/indigestion.
If you need to take paracetemol for a headache etc. take your temperature BEFORE you take them as it will lower your temp. It's a good idea to get into the habit of taking your temp every day so you know as soon as it starts to rise which may indicate an infection.
Make sure to regularly take whichever anti-emetic they give you, not just when you feel sick. They work by affecting a part of your brain so may give you bad dreams. If this happens just ask to try a different one. I found Metoclopramide gave me horrendous nightmares but Cyclizine doesn’t.
Stock up on gentle laxatives e.g. Dulcolax or Movicol for the constipation and also stuff in case you get diarrhoea. I’ve found constipation to a big issue and that if I don’t take a Dulcolax at bedtime every night I just don’t “go” next day but I also know other ladies who have exactly the other problem and get the runs.
You may find you get a horrible metallic taste in your mouth and this is what I find hardest to cope with as it makes everything, especially alcohol, taste disgusting. I use a mouthwash made from ½ teaspoon bicarb in a whiskey glass of water as I found the mouthwashes prescribed didn’t do much and tasted even worse. I also find strong chewing gum helps tremendously.
My main piece of advice is don’t be a martyr. Tell your ONC or chemo nurse about ALL your SE’s as unless you tell them they can’t offer you anything to help.
You’ll find sharing your experiences here will help no end. It’s just so nice to be able to interact with other women going through the same things and the tips and support I’ve received been invaluable. I honestly think I wouldn’t have been able to cope without their support as apart from my lovely OH I have no friends or family around.
Angela you must be so relieved! Save that experimental loud music for later! It can wait!
Rara and rHands-you are very optomistic about work and I hope I can keep it up too- I actually asked for more hours May and June hoping the first few cycles will let me recover quickly and also so I can qualify for SSP as I am very part time at present (I'm a social worker out of hours and I have a day job which is working in a family business which I can do part of through chemo but not all)
Good luck everyone- biopsy and marker coil tomorrow for me. I've got my arnica all ready as I bruised quite a lot last time.
btw just found out th senior in our GP practice is having treatment for BC- nearly done and back at work now!
Hi Everyone. Can't believe the amount of posts that have appeared since the last time I logged on. Welcome to the new May Moonbeamers great to have more advice. I had a phone conversation with my nurse yesterday concerning my MRI. She has told me that they have looked at my bone scan and ct scan again with another consultant to get confirmation. They are very sure that the bone is just extra bone and nothing to worry about and the liver is showing hemagiomas again nothing to worry about (relieved) . The MRI is going ahead for future reference just incase in the future I have any aches and pains I am worried about then at least they have a record of these areas when they show up.Also I think they had the results checked because I am entering into clinical trials and I suppose they wouldn't want to carry on with the process knowing that I might have to be pulled out. So chemo is delayed until further on in May but as one of my fellow Moonbeamers has said I will look at this as a bonus to enjoy family, friends and food. Not sure who asked about E45 cream (need to start taking notes) but my BC nurse recommed this and it has been great.It is good when I massage my nerve cording in my arm and early post opp when I had alot of sensitivity down my side and arm (all of which are feeling ok now). Melrose well done going out with your mouse. My first time was very nerve racking but now I don't even know its there. I go for my boob fitting next week which are suppose to feel more natural but im not sure i want to give up my softie now, might use both.Thank again to everyone for their advice about the MRI. I am still a little nervous because i get a little on edge if im closed in but I think having had lots of advise I will find a way to cope. Good luck to those starting their chemo today and this week, stay strong and let those around you pamper you.
Lots of hugs to the May Moonbeamers.
Up with the lark to go swimming (for the last time for a while as I'm suspending my pool membership while I have chemo) and the half moon was very bright. Quite as many moonbeams as the full one last week. There must be a lesson in this for all of us
I did try some gently massage last night. Plus I also searched the web for specific exercises and this morning it does feel better.
I'm off to get the all clear for my referral for chemo on Thursday. I've been told I'll be having FEC & FECT.
I intend to go back to work on Tues 7th May and see everyone before chemo starts. I'm also hoping to go into work in the 3rd week of my chemo cycles. Occupational Health will support me with this if I'm well enough.
Not sure about everyone else but I really miss my work. I think my mental health will suffer too if I don't get back to work.
I've only just started to use this blog and I have to say I feel emotionally better already. I feel this is going to be a real support to us all.
Anyway bye for now.
Catch everyone later.
Morning May Moonbeamers,
Zuzy, I had last op 14/3 and the bc nurse said it would take longer to recover then 1st op and she was right!
Aly, i massage aqueous cream into skin on arm and have really upped my exercises. I was recommended the cream by nurse.
Melrose, well done on the trip out with your mouse yesterday! You sound like a 'get on with it person' ! Good for you:-)
Beeny, hello, and also I think the reason the consultant said no work til next year is because I work in a special needs secondary school where the pupils can be rather physical! I have yet to recover my energy or physical ability to deal with the practical side of work anyway so am quite glad to be signed off.
Good luck today to all Moonbeamers. I hope you have sunshine today:-)
Just popping in from the Awsome Aprils to wish you all good luck. Although the I unknown can be a bit scary, chemo is definately doable, take all your meds and drink plenty. If the meds are not working ask for more, dont suffer in silence.
Go girls and tick that 1st box
big hugs xxx
Aagh! Have just lost the post I had written (I think- it might appear somewhere)- think I am going to have to use some of my emdless 'chemo recovery time' to get proficient on my netbook!
Deborah- lots of luck for today- you are one of the first and we are all thinking of you and hoping all goes well. Welcome to SueH- a very positive post= hope it continues that way. I am going to have my first FEC on Friday as my wound passed inspection yesterday. Had to cancel bank hol weekend we had booked a cottage for back in Jan- my sister-in law is going to go so hopefully she can enjoy with her family. I feel quite positive at the moment tho worried about PICC on Thursday. Angela- it's good to get advice about your MRI from people who have had it as I found the worst thing was not knowing what to expect so it was scary. But it didn't hurt in any way was just a bit of a strain to stay still (I had a cough I was trying to suppress) and the noise is terrible! Very doable tho- so best luck. I am going to a LookGoodFeel Better session today- will let you know. Enjoy some sunshone if you can everyone! Love Barbara x
Hi Rara and Robbie, I found recovery from my ANC much harder as well (first op was WLE and SNB) i did go black to work after 2 weeks but had pain all down my arm and hand whenever i stretched it, and developed a seroma which was quite sore, i had it on 22 March and it is only in the last week that it has reaxxg felt better xx
I was advised to gently rub the arm with fabrics too. It's such a wierd feeling of hypersensivity isn't it. I found after wearing the bra and mouse yesterday it felt better somehow but I woke in the night in a lot of discomfort.
Aly. The relief you'll feel from getting rid of your extra boob will be great. 🙂
Good luck today Moonbeamers. I'll be thinking of you as you go to battle
Hi Robbie and Rara, re the arm massage is anyone using E45 cream I read somewhere that can help along with the exercises. Also gently stroking the tender area with a soft scarf / material. Maybe it's the massage as you rub it in? I'm holding off on doing anything too physical until my seremona is drained hopefully at my post op tomorrow. Cannot wait to deflate that 'boob'!
Hi Robbie, I am sorry you are suffering. Have you asked someone to massage your arm? It really helps if someone else does it and you grit your teeth an bear it for a few minutes three times a day. Also, keep going with the exercises. Go to you gp and ask for stronger painkillers? The first massage is the worst, it gets easier.....and afterwards ifeels better. I hope it works for you, ps they need to use two hands and be gentle ! X
Hello all, quite possibly another Moonbeam here . Had left mx and a handful of nodes removed last Tuesday, and get the results and treatment plan this Friday.
I work in a school too, and they are keen for me to get back to work as soon as possible. They hired a temp for 6 weeks to cover my job - good luck with that then!! Lol!
Hi everyone ,can't believe how large our may moonbeams are becoming .good luck to everyone starting chemo and for all appointments and hosp visits .
I have been doing a hypno relaxation app that I downloaded for free and must be helping because today after an awful few miserable days I woke up this morning and felt good yippee am so glad ,hope it lasts .
Stay strong moonbeams xx caz
Today I braved my first outing with my bra and mouse, as I have nicknamed my softie! It was actually quite comfortable giving which helped me feel very confident. I had lunch out and a trip to Tesco. Life goes on!!
I too work in a school but in the office. I can't imagine not going to work for all that time. I'm hoping to work inbetween. We'll see.
A busy week for so many of us! Good luck to Marie, Deborah, Alex, Suzy and Jane (sorry if i missed anyone) with your first rounds. You'll be our guides in this battle and we'll take our lead from you. Xxx ❤️
Good luck to others with onc aps and results. Its all systems go!!
I too am suffering more from the 2nd OP. I had ANC 17/4 and have just started to experience such tenderness and sensitivety to inside of my arm. It's really painful and no amount of pain relief is working.
I did plan to go back into work Wed but have been signed off now until 7/5.
Is there anything you can recommend to make this easier?
Hi Angela, I also work in a school and my consultant said no going into work until all ops, chemo and radio is over! He said should be fit for work by beginning of April next year! I had first op in feb and second in march. Am finding second op a lot harder to recover from. it's been six weeks nearly 7 and I have such weird feelings and pain in my armpit and arm. The physical stuff is so annoying as a constant reminder of my 'condition' ! Good luck with chemo. I am calling chemo the cure! Rachel x
good luck to everyone starting chemo this week I had my blood test on Friday nd haven't heard anything so I'm on for Thursday also had a appt come through for my endocrine doctor ( he is a dish so nice) for next week so he will sort the steroids out after my chemo. Feel a lot better now I know he is involved.
Deborah glad you are starting tomorrow 🙂
Just read the most recent posts and again, such an encouraging group! Angela, I suffer from morning anxiety too (only since got chemo date) and I have found rescue remedy works plus getting dressed quickly and walking to the paper shop even though I now have a collection of unread papers!! Penny, I haven't listened to music since I was diagnosed, also can't read a book at the moment as my mind wanders! Have taken to listening to learn Spanish and learn French tapes. I have a large head so am getting concerned about hats! Can't find any that fit so have been trawling websites. Going to try a turban with loops, apparently you can thread a different scarf through loops and around head!
Good luck wishes to all but especially to Zuzy and Deborah who start chemo this week.
May Moonbeamers - we can do this!
Hi everyone. Have been following posts since I was first diagnosed in December! I had a lump removed from my left breast. Lymph nodes infected were removed. I have had my first chemo session today. So far, so good. Am just waiting for the side effects! Fizzy water, pineapple fresh, tinned and boiled sweet! tht should sort out some things. Bonjela, lip salve. Am now going to have an early night! Anyone in the Rugby, Dunchurch area wanting to meet for coffee/tea/buns!
Hi Angela, thanks for you reply - I feel your frustration re the MRI being delayed, I know I'm impatient to get on with treatment and it feels like such a setback when things get delayed. Matbe you should look at the extra days as a little bonus 'me time' - movies, galleries lunches with friends, I find if I hang around at home I just end up doing endless loads of washing!!
Good luck for Friday, and really hope they get you booked in ASAP.
Back again. Just had a phone call, MRI not until Friday. That means my chemo will have to be put back. Try to get hold of my nurse as she wanted me started on chemo this week and had booked me in. Hopefully she can sort it out for me.Plus everyone tells me I have nothing to worry about but I just want it done. OH said they must think im non urgent which in way is a good thing. Who knows! Sure I will be posting later.
Hi Aly. I am nearly 6 weeks post opp now. I had right breast mx and clearance with 4 nodes infected. My numdness has nearly gone but i still have some nerve cording but that is easing each day. I could of gone back to work a couple of weeks ago but i work in a school and my onc didn't want to take the risk (infections) as I should be starting chemo this week. It is difficult waiting for your appointment post opp but my appointment was very positive as they felt they had caught it all and my onc even said they wanted a cure out of me.My treatment now is just precaution, chemo,rads,herceptin and tax for 5 to 10 years. I am 43 so the onc said he can throw more at me asl I should be able to take it. I have always trusted the doctors so far and I have no reason not to continue to do so. So take one step at a time and ask questions when you need to. If you can scrape into the MAY MOONBEAMS it would be lovely to have you. Lots of hugs.Angela xx
Hello Moonbeams, and welcome to Rachel and Sarah and all who are 'new'. I've just had my chemo confirmed for tomorrow morning at Barts. I've been waiting so long that at the moment all I'm feeling is relief. I dare say that between now and tomorrow that might morph into something else!
Angela, hope your morning blues have passed now? My MRI wasn't bad, and was over quicker than I expected. As Penny said, they'll give you a buzzer in case you have any problems and they be able to talk to you via the headphones. Have also had a CT and bone scan and now I'm going for the full set with a MUGA ahead of the Herceptin. Has anyone had one of those yet? I'm not sure what it involves.
Hope everyone else is doing okay.
Elliedog-I'm also waiting for the phone to riing over those two appointments one of which is the Onc. He's part time and i imagine his sec is too. his day job is he's the clinical director of the whole hospital group! He looks nice in his photos. Hope he is as nice as he looks.
I've tried doing the ironing-that's when I usually get calls I've been waiting for. No joy. So now I'm having a siesta and then I shall attack the weeds in the garden and he/she is sure to ring then.
I fiind I usually start feeling weepy when I listen to certain songs and music-have to be careful what I listen to while driving. Last week it was a piece by Bach written towards the end of his life and yesterday it was a song by Beth Neilsen Chapman, who is BC survivor and it shows. I've been a fan of hers for years and I think it helps.
One positive thing- I asked MD who's working in Bolivia to work for caps for me in the market (for some reason when I think of Bolivia I think of hats) and she has found a whole pile of them, all very large and stretchy (bighead, that's me) and colourful. And I just went charity shopping and found two super scarves to practice on. Can't wait
Good luck and Howay tha Moonbeams!
Hello May Moonbeams I've just read the entire thread from top to bottom and its making make the road ahead seems so much brighter knowing there's others going through the same as me. I was diagnosed on the 25th March at the Barts Breast Clinic, what a shock, I had had a benign lump removed from the same breast 7 years ago and just assumed it would be the same but alas 2 tumours in the same breast and 1x lymph node.
I had an MX and ANC on the 17th April and am in that horrible limbo time waiting for the results - at least 1 node was cancerous when I was 1st diagnosed, I think the waiting is the hardest part the longer it goes on the more time your mind has to make up worstcase scenarios.
My recovery from the op has been pretty good, obviously sore, finding the numbness in my armpit very weird and also look like I'm growing back my breast at the moment there's so much fluid build up (nurses want to wait till post op appt on Weds before draining) I think the biggest thing is the emotional exhaustion, spent this morning weeping through various threads on this site which was actually quite cathartIc. How's everyone else found post op? How soon were you excercising, walking, driving, back at work???
Any way I have no idea what awaits me on Weds but pretty sure it will be chemo followed by rads as that seems to be the norm. Hopefully I'll just scrape into the may moonbeamers or may I'll end up having to hop over to whatever Junes thread is (jesters, jolly's, junkies???)
Thank you ladies for your amazing words of wisdom so far. Back to The Sopranos!
Thanks for your support Melrose and Marie. Looking forward, just sometimes get the morning blues. I have never been a happy person in the morning so I suppose thats a good thing because a least thats normal for me. Of to do some cleaning now the house is a mess.
Hi Angela good for you live every day as it comes and get the most out of them, I think deep dwn we all think the same is this the end but it isn't treatment has advanced so much even since my mum had it in the early 90s ( not breast womb then lung) so I know I'm going to kick its arse!!!
Thanks for the advice Penny47. Hoping I get a phone call today so I can go in and get the MRI over and done with. ONC wants it done asap so we can get the chemo started this week because they are trying to do my chemo around my holiday to Scotland at half term. They don't seem worried about my MRI but I keep thinking whats it going to throw up something I don't want to hear. They say they have to have the whole picture. I suppose if it is hemangiomas in my liver they have to know even if they are pretty harmless.
Marie I am going to be more like you and stop wasting my time on crying I need to enjoy everything around me more. I think its a bit like mourning your life before BC but I think its about time on got on with my life ahead.
Have a lovely Monday everyone.
Elliedog- I had MRI scan 2 weeks ago- face down. On the bed there were three holes and I managed to work out which one was for my face! I was so nervous I might have got it completely wrong! I had a cannula for the dye, which went in really easily for some reason, and then when I lay down I found out they put a periscope in there under your head so you can see a tiny bit of what's ahead of you (that is the bit above your head if you were standing up- can't think of any other way of puttiing it) They gave me 1) a button to squeeze in my cannula-free hand, and 2+3) ear protectors and earphones inside, and asked me what radio programme I wanted. i chose Radio 3 for some reason but I think radio 1 or 2 would have been better as the noises are very loud. i had MRI before for head 7 years ago, and that was worse, maybe cause it was the first time. They only way I could deal with the noise was to pretend it was some kind of experimental music presented by the child of a dear friend and so I have to pretend to like it. I wasn't sick, but I did have a little blub all over the periscope, and it was hard to lie still with my arms out in front of me. Getting out and sitting up made me feel dizzy- the radiologist gave me support to stand up which I normally wouldn't need at all. The best thing I can say is it wasn't as long as I was expecting. I hope this is helpful; you may well have a different set up at your hospital. Good luck!
Thank you Emma for the welcome and thanks for explaining EC to me Marie.
i have found this whole website fabulously helpful today but especially the may Moonbeamers. Other people who understand the emotions of our journey.
sleep well ladies,
Good evening Moonbeans and welcome to Rachel and Sarah.
I think we areup to 14 in our little army now! It's so lovely to feel part of such an exclusive group. I know none of us want to be here but having you all around does make it feel easier.
I've had a sleepy day today. I had a proper look at my scar today as I changed the dressing myself. Unfortunately when the original dressing was taken off on Friday I'd had a reaction to the plaster and had several angry open blisters. It looks awful, angry and severe and has really made me feel down. :(( it's he first time I've mourned my lost boob. Oh I had lovely boobies!!! ;@
Never mind onwards andupwards!
Mri - take the Bach remedy and close your eyes as soon as you are in the tube. Imagine you are on a beach with thebreeze gently blowing across your face. Hum quietly to the rhythm of the beat of the machine. I even try and make up songs to the different beats! If you're lucky you'll nod off 🙂
Next week will be a big week for many of you as you start the next step in your journey. I will be thinking of you all and will pop in before you go.