Dodo, I've signed up for a study for the Herceptin where it's given into the thigh muscle instead of a vein. I kind of feel a bit freaked out by the thought of any tube staying in my body for the duration, but if you read the messages from ladies who do have one they all say it's the best thing they've done. And as Penny said earlier, those who do have the tube can use both hands during infusions so can be more free to do what they want.
Well done jane, after chemo i too go for radiotherapy, herceptin and amoxifen. Can understand totally about life changing overnight. i have gone from being mum looking after kids (albeit they are 15 and 19), job and study to my kids looking after me, no job and incomplete studies. It is one hell of an adjustment and still coming to terms with diagnosis. BUT WE CAN DO IT !!!
Couldn't sleep last night been up since 3.30 thinking of what boss has given me to think about. i feel that i have enough to deal with and don't really want to think of this at the moment so i will ring and tell him he needs to give me more time to think about it.
Thanks for the offer of help Dodo and will take you up on that if i need to. My sister and husband said the same;that i should not resign.
Janey - well done. You are well on your way. As you are having Herceptin have you got/been offered a port? If so what are your thoughts?
I know what you mean about the immediate transfer from being healthy to patient. It is a real shock to the system and just stops your normal life completely.
I too will be taking it a bit more easy this cycle, I think I got a bit carried away last week and was exhausted Monday morning.
I completed dose three yesterday, and planning to be very sensible this time after doing too much after last dose. After this I have only one more cycle (I think I'm the only Moonbeam on AC), then radiotherapy, Herceptin and Arimadex. Phew!
Still feels weird to have gone from completely fit 59 year-old to 60 year-old patient overnight. And to be on a treatment that just shrieks out to everyone I see, even casually on the street, that I have cancer. So much for patient confidentiality! Practically no other treatment declares itself in this way, does it?
Sarah I'm a bit rusty on employment law but I agree with Jo. Your responsibilty is to keep them informed, theirs to you is to respect the contract. He has an option to apply for hours to cover- he probably doesn't know it if he's typical of educational managers (is he a HT?)- they seem to be very isolated from HR and in my authority HR is being run on a shoestring and Occ Health is out-sourced for the most part anyhow. So postponing OH assessments is a way of saving money. I'm facing a similar situation where I feel my good nature (!) is being a little trod on. More about this later because as you are now reminding me I need to do a little bit of homework and consult my GP. His senior partner had treatment for BC last year so they are really supportive of me so far at the surgery.
About JABS: There is now an encouraging notice on the walls at the ONC unit recommending we all get flu jabs at any point in the treatment. They don't say anything about pneumococcus jab for us older patients. I took the plunge last week and had mine on day 15 and no ill effects. Yogurt: reading labels is a good idea. I got quite fond of Tesco Gooseberry fool as a substitute but when I read the label I discovered it has yogurt in it-they don't specify whether it's live or not so I gave the rest away to my grandchildren (no hardship for them!) SO then I turned to Muller rice pudding...and at that point I gave up. Back to bananas for now!
Mills this is what is called constructive dismissal and is totally unacceptable. You could have them in an industrial tribunal over those sort of comments. I am a teacher and have had nothing but the best support and encouragement. they have advertised my job on a fixed term contract and have reassured me it is mine when I am ready to return. Playing the Oftsed card is well below the belt. I would definitely not resign. (My mum sits on industrial tribunal cases so if you need further advice just ask).
Yoghurt is ok as long as not got live bacteria in it and is pasteurised. No greek, proactive, natural etc...
Marie - Good luck for today. x
I would speak to McMillan they may have a helpline that can help? The other thing would be citizens advice? and would there be a job when you feel well enough to go back to work. Be very careful what you decide. Make sure you don't lose out by resigning.
the post i had was only for a year but the same post is needed next year and they have to offer it to me first because it was my contract but boss rang me and told me, also said it would be better for them if i resign because although i can take job and stay on sick leave, i wont actually be on site and they need someone for consitancy and i will look bad to ofsted. he said 'we wno't think anything of you if you decide to stay' and ' let us know as quickly as possible' i think its a bit nauty of him to put pressure on me considering what im going through. however i knoe im not ready for work soam going to see if resigning would effect any benefits. anyway gotta think about it, so if anyone knows someone who knows about work law osr benefits system let me know
Hi ladies, well done dodo, zuzy and penny hope everything is ok for you.
good luck tmoz Marie, thinking of you and hope u get bra thing sorted
RE: YOGHURT i read not to have it but forgot and ate some 3 days ago with fajetas and no ill effects but probably best to ask
Went to Norwich with my girls today still going commando and looking like skinhead, had a nice time but sleepy now. My very short hair has started to come out in small clumps today so the scarves will come out soon. OH cooking tea and i'm still thinking about what to do about be asked to resign.
Take care everyone xx
Hi Karen- I've been meaning to ask about yogurt too- as I have heard contradictory advice- will ask the chemo nurse when I have my dose on Friday and let you know- I have a large pot of greek yogurt tempting me in the fridge-resisted so far. Well done Penny, Jo and Zuzy.
Glad you are all doing well, I'm lagging behind still only on number 1 !! My next dose is next Tuesday with reduced dose and injection the following day, wonder if it differs from the day one some seem to have? Any ideas?
Going out for tea tomorrow so eleanor Wigby will get an outing.
Do we have to avoid all yogurts?
Ive had a good friend make me scarf for £5 with cupcakes on v pretty so if you're stuck
Im on mobile again so wonder what it will post this time?
Take care ladies
Hugs you're so brave
Zuzy - Glad all went well. Great news. After this one into the unknown again. Are you having a half way scan?
Penny not quite half way there - need to get to the end of the cycle first but time is really flying.
Well done Penny, it has gone quite quickly I have to say. Hope your SEs are ok.
There was a man cold capping in my unit today which I found v odd, you don't imagine that men will be so borhered about losing their hair, guess shouldn't make assumptions!
Hope everyone is well
FEC-T 2/6 Day one: Had a slice of NHS life today with a 2 1/2 hour delay and "chair blocking" ie two patients needed special care and one needed admitting to a bed that wasn't there. All very much like my job so I felt at home. Luckily I had plenty of toys to play with, books to read, and my treatment was not compromised. Best of all I got to talk to people with different cancers, men too (a completely different discussion!)
Meanwhile my OH was sunning himself at Maggie's surrounded by lovely women! (at least that's what he said.) They even offered him a delicious lunch! Maggie's is so cool- I wish there were more of them.
What I learned today at ONC I should have been able to figure out for myself. You people who have PICCs and lines are at an advantage with treatment- you can sew, knit, play the piano, work on your laptop while we cannula people have to manage one-handed. I have to have the drip in my right hand cos I have swelling in my left from my finger amputation 4 years ago. So I have to do everything with my left hand which is not my best hand! Glad to be home and will sink gratefully into the sofa and watch Springwatch before my SE's kick in...hopefully NOT.
Dodo and Zuzy- I can't believe you're halfway there when I'm still on cycle 2! Brilliant!
been had bloods they were fine saw a new oncologist today ( very nice lady) she was pleased with me. Said I was doing the right thing with going on holiday and not letting it rule me. 3rd cocktail tomorrow at 2.30.
Also I've got appt to se. BC as bought some bras from amoena and the prothesis I have for the one I had before seems too big for these they are the same size so going to see what she says x
FEC-T 3/6 day 1
Hi Dodo, bloods were fine and I'm all done! Can't believe we're halfway (sort of) looks like I'm moving to thurs next time cos we're going away for the weekend so i can't have my pre chemo bloods til tues and they like a day between, so you'll be a day ahead of me, I'll be after lots of feedback! Hope minimal SEs continue for you xx
FEC T 3/6 Day 1
Well the third one is now done and so far so good. Fingers crossed for more of the same. FEC and me are now officially over and next time it is the dreaded T! The steroid dose is higher and I am dreading the come down from that...
Zuzy - how did it go today? Are we still chemo day buddies? Hope all is still on track and your bloods were fine.
Penny - They will definitely have AP on my notes - they laugh at my list of questions every time I go. I think they dread me but I will carry on regardless.
Rachel Happy Birthday (what is left of it) and Karen- welcome to Eleanore W. Sarah- If you can muster the concentration then finishing your degree sounds like a brilliant way to spend these few bonkers months on chemo. Good luck. It was hard enough for me without chemo!
About my Wiglet-last month I went to FOCUS- the volunteer centre at the Onc unit- they handle all the hat and wig business. I just happened to catch them on a day the wig lady was there and she measured my head and confirmed that I definitely need a bigger size. I know from others' experience that would be the end of that- it used to be the case that there was no outsize wigs for NHS patients. But before I could feel downhearted, the volunteer centre coordinator spoke up and said they would apply to the powers that be on my behalf for the extra funding nexessary. Last week I rang up and they confirmed I'd got the funding for up to £140 worth of wig! So today I went in and paid my £64.95 for the prescription, and I'll be going for my fitting sometime in week 3 I hope. Just feel so relieved this has all been taken off my shoulders- you feel so cared for when you don't have to do all the running yourself.
A footnote about my Onc appt- I had done a chart to show my fluctuating temps. (once a nurse....) Dr said he had never seen anything like it before...I imagine he wrote AP in my notes (=Anxious Patient) if they haven't already.
Today's lesson: When you get an appointment for chemo in hospital and you were expecting to be on the chemo van in your locality, ring up and ask. Don't do what I did and assume there's a medical reason. In my case it was just crossed wires with the admin.
Happy birthday Rachel- hope you kept some of your cake for yourself and are having sometning sparkly to go with it!
Marie- your holiday sounds so good! it's been one of the most disappointing things not being able to go away- can't wait to plan a load of holidays for next year- hoping to go to US next summer/fall.
I should also be dosed again this week- no 3 on Friday if blood tests ok on Thursday- feel pretty wiped out so have some doubts. Chemobrain has kicked in too- forgetting things all the time.
Karen your wig looks really glam- like Jo I feel mine is not me- my hair was not very groomed and my wig looks so- well artificial!
I hope all doing well- particularly those we haven't heard from for a while- there was Deborah too on her first round early in the month...
best to all
yes Happy Birthday Rachel - hope you had a lovely day
yes Aly - that is our Eleanor Wigby - so many comments when I put the photo on facebook but still not too confident to wear it yet, head still little sore and wig is a little heavier lol !
my chemo nurse phoned today and confirmed that I will be having the boosting injection the day after chemo each time and bloods will be carefully monitored and dose will be lowered, I too feel like I have a stay of execution and not really looking forward to the same happening again. Anyone else have the injection straight after and I am told it give you a lot of bone pain, I did get pain in lower back which I was told was good as this is where the bone marrow is produced and the pain was a good sign
I have totally lost who has had what now
I am FEC-T 1 - day 22 !!!
good luck to all those having treament this week
Back from session number 2, all calm so far.................
Thankyou all for your good luck, it's nice to know I've got my Moonbeam friends to wish me well.
Had a look at the video clip, very helpful Penny. I'm going to take advantage of a Look Good, Feel Good treatment that they offer at Guildford. I have to go there for my second part of my treatment. It's like pamper therapy....they show you how to do your eyebrows, eyelashes, how to place your wig and scarf etc; and it's free . Plus, they offer other various pamper treats...
Shaved my hair off, and god it feels good........nice to take control of something......
Still need to have a read through to catch up with you ladies, sure I've missed a few things...have notcied a couple of new names, so welcome to Moonbeams those who have joined.
Teresa x x x x x
Hey ladies, your posts do cheer me up!
good luck .tereasa.
I wore wiggy out today, popped into work for break time, taking along the cakes I made! Received the loveliest welcome from the staff and a beautiful birthday gift, a handbag. Apparently I look 40 not 50 with wiggy on! Didn't see my class as they Have have a "class cold" !
Who would ever have thought that the most important part of my 50th would be "Is my wig on properly?" in the mirror before leaving the house. Believeme, i am not vain, but wiggy sent me into a spin and I have put make up on today too. Haha!
Still no news from Littlescoot, Cazd or Sooz?
Hi again, forgot to say, Got in touch with college today and it seems possible to finish my degree in sept this year as apposed to next. I only have to do my dissertation and 1 module per semister and have already attended most of the lessons anyway and can also have extentions if need, plus any time off is already authorised, so sounds great.
This all came about because my boss rang and said my contract has been extended so i could take the job but be signed off sick, but would mean they have to get cover and it wouldn't be consistant for the kids or i could resign. I don't feel i want to go back to work just yet but also found it to be a bit cheeky. just gonna find out if resigning will effct any benefit claim or future employment. So feel like my job has been taken from me twice. Anyway think i will resign and consentrate on getting better, family and degree.
Karen - is that a piccy of the wig?? Very nice!
Teresa - good luck for the 2nd one today - mine got put back for a few days as I wanted to start at the beginning of the week when the kids were at school so number 2 for me isn't until Monday, feels a bit like a stay of execution!!
Becky - I like the sound of Urban Retreat wigs - just picked up my 2 from the wig lady at Barts - thiers are 'Browns' wigs - I've got a Kimberly and a Lou, going to get my hairdresser to give them a bit of a more funky do - I find they all look so 'just stepped out of a salon' and I'm a bit more messy than that!!
I fear the cold cap has failed me and the clippers may well be out by the weekend, I've got a lovely bald patch on top of my head now which I'm having to cover with a wide headband - beginning to think its more stressful worrying about it coming out everyday for the next 4 months than just getting on with being bald and proud of it like so many of you have done.
Penny & Marie - my dream is to own a campervan but my OH has reservations - maybe all this will finally convince him otherwise??
Hope everyones having a good day.
Hi all,just had a good catchup with posts. FEC 1/6 DAY 15 ALy Glad you enjoyed you concert. Penny liked the youtube clip and wil watch more, thankfully i have 2 daughters who are a dab hand at things like makeup etc. I too have got scunchies to match fitted scarves from annaB, makes them feel more secure. Becky welcome, sorry u have to be here but your now a moonbean lol Good to hear no SE, hope it stays that way x Dodo Good luck WED x also have been very emotional Marie glad u had a nice holiday, have always wanted a motor home. did u get my message? Teresa GOOD LUCKx
Penny, we are doing France and Switzerland with friends who have been so many times we just tell them where we would like to go and they take us. We have had motorhomes for the last 30 years. This one is 22 years old but it does what we want...
last year we did France Germany Luxembourg and holland the year before we went to Switzerland to interlaken and up the jungfrau wow what a view there was from there Marie
2nd session today, my friend is coming today along with her clippers...........It's coming off, driving me nuts x
Haven't been on here for a few days, will have a read see what you've been upto.
In the meantime keep well, and I will drop in soon x x
Thank you all for your welcome comments, I have looked back through the posts and feel very reassured knowing that you all seem to be coping so well. Day 12 today after my first chemo and hair still all attached but I will certainly try the aloe Vera that you all recommend when it starts to itch and tingle prior to coming out. A friend is taking me to London on Thursday to visit urban retreat wigs at Harrods - thought I would treat myself! So far I have bouhats a sleep hat and a yoga turban from annabandanna so at least I have something if it happens in the next couple of days. I hope you are all feeling okay this morning xxx
FEC-T 1/6 Day 21 and I've got my slap and lippy sorted as seeing ONC this morning.
Found this somewhere: http://www.the-scientist.com/?articles.view/articleNo/31708/title/Fasting-Heightens-Chemotherapy-Benefits/ ...so if you find you can't eat just drink you may be doing yourself a favour!
Karen - sorry to hear about your son's friend's Mum. My experience with BC before my dx was through parents of friends of our children, at a time when the treatment and prognosis wasn't as good as now. I hope his school have got their heads around helping the pupils through this sad time and giving them hope- after all, many of them will either have a dx or have a parent or sibling who has one. Marie - I am very envious of your plan to do 3 weeks in Europe- is this in the motorhome? My neighbour just came back from visiting her family in Czech republic- they had 2 weeks of solid rain, hence the floods along the Elbe that were on the news the other night. Hope that's all cleaned up if E Germany+Cz Rep is on your itinerary! We had a dormobile but had to let it go when the big ends went just after our 3rd baby was born. Missing it now 'cos it's fun to just go off on a whim on a good day when you're having treatment.
Evening ladies, just had a lovely weekend away in the motorhome at chatsworth house with friends from Wales. Still got period and also really bad pain in my hips? Got my 3 dose on thursday only one more after that then 3 weeks in Europe before starting rads!
I cant believe some of you are about to start no 3, I feel I am slipping out of it a bit with them delaying my 2nd one, hopefully bloods will remain ok for next week although I am dreading it having the same effect again, but they tell me they will be keeping a close eye on things
not much else to report really, bit of a down day, my son told me last night that a school friends mum with breast cancer lost her battle last night, it reduced me and him to tears me telling him that all would be ok for me in the best way I could, its times like that you wonder what goes through their minds, I am sure his friend (both 14) felt mum was going to fight it, my thoughts are with the family even though i dont know them it feels so raw
hope everyones scalp is a little better, I could not believe how quickly mine did go, must admit as soon as it was going and leaving it very thin I just wanted rid. - I will post a photo of Eleanor Wigby very shortly, positives from everyone so far
also my OH took my suprise shopping for pandora bead no 1, 2 & 3 (cos there was an offer on lol) so
good luck all those having treatment this week and those recovering from treatment,
Welcome Becky. Glad all is going as well as you can hope so far.
Thanks for your thoughts Penny. I don't think I am depressed but just having a wobbly moment or two. Hopefully it won't last. I am going again this week as is (fingers crossed) Zuzy for number 3.
Welcome Beckyjane! It's hard to feel welcome if you don't want to be here in the first place but none of us do so you are in good company! Aly that news about your colleague's mother is so good. I know all BC is different but it is so powerful to know someone is successfully kicking its B**t. Especially as she is probably a slightly "older" younger woman like me. Elliedog great to hear you have had a reasonable time...same with me. Wierd to tell everyone you're going to have a few sick days and then actually have them! Ah well we're jumping off the pier again this week, you and me and Aly and ??? but not Karen who's having a break. Rachel and Jo- I don't want to sound as if I am making light of depression as I too have been there but I just want to remind all of us that blubbing is definitely allowed. I think we have all been traumatised just as if we had been in or witnessed a dreadful accident and we each react in our own personal ways. For me this chemo has taken some getting used to but it is a more hopeful time than those first 2 weeks in the waiting room which was horrendous. But I still "lose it" at times- in church last week, sitting around our little camp/bonfire in the garden with the grandchildren, singing- I'm going to have to avoid singing in public at this rate! (Or maybe not, cos they say singing releases happy juice in the brain if you do it often enough. Maybe we should all should be trying out for The Voice!) Also while watching the Pilates video my teacher lent me when one of the models picked up two 7" exercise balls- both pink! I had to stop and have a little cry. It was not funny at the time.
Not meaning to miss anyone out, but Dodo, the chemo can have a depressive effect and so can steroids,,,,,,this is why I had my second cycle reduced as I was blubbing and depressed. I am now officially clinically depressed apparently! I hope this awful phase passes for you sS quickly as possible.
welcome Becky Jane !
any news of
cazd, Littlescoot or sooz?
Great news Aly for your mum's friend. I don't think mine will shrink quite as much as that. Not even sure if it has shrunk yet as I was very bruised and tender after core biopsy and don't know how much of what they felt was the tumour and how much was swollen tissue! The original biopsy measurement was 27mm but lump felt about 4cm when started chemo. Now approx 3cm. Will know more in 3 weeks time!
Zuzy - Sorry to hear that your bloods were a bit low again - fingers crossed for Wednesday for you.
Ann - glad to hear from you and that things are better now.
Forgot to say I asked about periods and the onc says no tampons just pads!
I feela bit emotional right now, keep crying and not feeling as positive about things right now
Hi everyone. Just wanted to pop in. Been to see the onc today. She was lovely and positve as usual. Have my second treatment tommorrow. 1st treatement went ok apart from a rash on my face and chest but that soon went. Felt like I had flu for 3 days on my second week but after that felt fine. So still walking and cycling with the kids. Had head shaved today and tried wig again, think I've gone of my wig and prefer the scarves, suppose it will depend on what mood I'm in. Will try thr Aloe Vera as head feels a little sensitive (thanks for the tip). Has anyone heard from Littlescoot and Cazd. xxx