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May Moonbeams

nanniereeree
Member

Re: May Moonbeams

Morning ladies, I have to say the anti sickness stuff this time is a dream, I'm one of those who when feeling queasy eats and eats and eats.
Since chemo on Thursday I have lost 5lb need to lose about 5 stone now but at least I'm on way back ytwo e where I was before chemo..:-)
i was so hot yesterday I thought I had a temp but it was reading powere than usual i only take mine when I feel hot or not quite right probably only took it a dozen times over the 4 treatments but then I didn't have all what you ladies hnbeen even having .
Janey hope you are ok after last treatment?
Penny best to stay away if got virus you don't want it.
My daughter was coming to stay for a purple of days but she has stinking head old so wont see her or GK's
well have a lovely day
Marie
namaste
Member

Re: May Moonbeams

Morning moonbeams 🙂
Pacletaxol 7/12 day 6/7
Feeling a bit daft today cos I took my steroids for an extra day mistaking saturday for friday 😞 honestly, I'm just not really with it at the moment
In fact, I've been feeling really, really flat all week.... I think that's the best way to describe it. I'm just worried it'll spiral into something else given my history of depression but I guess the good thing is that I can recognise the change so keep an eye on it. Maybe asking for a bit of counselling would help? Not sure
Apart from that the SE's seem to be kicking in for me.. my skin's really crap, very dry and sore.. especially on my feet and hands. Any my nails are painful with the cuticles getting really hard and sore despite using lots of creams etc since diagnosis. Guess I'll just have to do the best I can for now. Funny thing is, the doctor said my skin and asthma would improve with treatment because of the steroids!!! Pft
Teresa, I realise I forgot to answer your question about the trial I'm on for TNBC, I'll pm you later
Hope everyone else is managing in the sunshine. It's lovely to have some warm air finally but a bit of a shame I can't go out in it. Still, sunshine makes everything better.
Anyway, my afternoon's sorted, I'm off to watch the tennis 🙂
Dodo14
Member

Re: May Moonbeams

Sorry I meant not selfish in last post. Too hot to think straight!
Dodo14
Member

Re: May Moonbeams

FEC T 4/6 day 5
Morning moonbeams. I nearly had a mad dash to the hospital last night as my temperature went up to 37.9 and I got a bit fraked out but i am just over heating - no sign of infection. Has come back down this morning but i know it will go back up again - any ideas how to keep it down? Think i might avoid taking temperature as long as feel ok because it is too scary.
I have slight joint pain twinges in hips, shoulders and jaws but still not taken any painkillers for it. My mouth is dry and sore and I am still constipated with a very uncomfortable tummy despite not omdanestron - strange!
Def. true Marie about women being selfish. On dx all I kept doing was saying sorry to people for letting them down! Really!!??
Penny - yes you will be at the next baptism for sure!!! Sit back and relax and hopefully watch Murray win his first Wimbeldon title. Yeh!
Zuzy
Member

Re: May Moonbeams

FEC-T 4/6 day 4
Morning moonbeams, tax aches have well and truly kicked in overnight, mainly my legs and v bizarrely the soles of my feet, ouch!! Coupled with the heat meant didn't slep well and am feeling tired and irritable, plus booster injections start again today as well so buzzing bones to add to the mix as well, sigh, Don't think i'll be venturing further than the back garden today! Enjoy the tennis and the sun Xx
Penny47
Member

Re: May Moonbeams

Speaking of positive I just read somewhere that laughter is supposed to be good for the immune system. I now remember one of my schoolfriend's Dads who had a very serious connective tissue disorder and he went out and got videos of old Charlie Chaplin and Laurel and Hardy movies and he was sure it made him better. He lived another 20-odd years! If Murray wins tomorrow we will all be laughing with joy I guess.

Sorry if this sounds flippant but I'm in a better state of mind - have just been for a walk and the people down the road are having a BBQ with live fiddle playing- that's my tune he's playing! And James Cat (George's absent Bro) has apparently decided to stay with us for a bit. I'm laughing but also sad as i'm missing EGD's Baptism tomorrow in Yorks. Too far to travel and too risky with a horrid feverish virus going around their family. Part of me- the positive part-is saying- there will be another Baptism in their family in a year or two and when there is I will be there.
nanniereeree
Member

Re: May Moonbeams

Ladies I think we all need to be selfish at some point I think being a woman we have had to not be in thee past because of either partners ( who are like children) or children who we would give our last penny to or food etc (you get my drift)
my husband tells me im not selfish enough I try to please everyone even when I was dx I was worried about everyone else and not me the BC nurse told me to skirt myself out before I sorted everything else....
Please stay positive
:-)Marie xxxx
Guest user
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Re: May Moonbeams

I'm with you on that Jo, I have a 10 year old too plus a15 year old, watched the girl next door but one grow and she was all dressed up for her prom last night, I will be there to see my daughter do the same . I'm trying hard to put the Bernie thing back into perspective that we are hearing just one piece of news because of who she was, there are 1000's of ladies that are completely ok that we are not hearing off, stay positive ladies we can do this xx
Karen xx
Dodo14
Member

Re: May Moonbeams

Thank you for understanding Penny. x
Penny47
Member

Re: May Moonbeams

Not a bit. You are not being selfish, you have to factor in those who depend on you.
Dodo14
Member

Re: May Moonbeams

Penny - no we don't have all the information but I feel so scared that beating it this time won't mean beating it forever because of what happened to her. There are no guarantees for any of us but right now I dfon't feel like take any more chances than I already need to. Perhaps that is very selfish but I have a 10 year old daug and a great life and I think now may be the first time in my life when I should be a bit selfish. Sorry if that upsets anyone.
Penny47
Member

Re: May Moonbeams

Jo do we know what kind of cancer Bernie Nolan had? And details of her treatment? I can understand why you are leery of going down the Herceptin trial route but BC can be so individual! It is hard for us neo-adjuvant gals trying to unthink our prognosis isn't it? I do trust the ONC's assurance that the cancer will shrink- all this discomfort and SE's has made me trust still more, paradoxically! But it is your choice. Try to get into the science through your ONC and BCN if you can.
nanniereeree
Member

Re: May Moonbeams

Rachel everything dodo says I agree with
Marie xxxxx
Dodo14
Member

Re: May Moonbeams

Welcome back Lexi - good to hear things are easier for you this cycle too. i was asked to take part in a trail for reducing herceptin timescales to 6 months but feel very unsure about that especially after the news this week.
Thanks for the updated list Penny. My next dose is actualy 25th July as I am having my first herceptin on 24th and can't have them on the same day.
Penny47
Member

Re: May Moonbeams

Rachel: about OH's-I do sympathise- when mine is absent for the day or overnight I feel pathetic. However I tell myself don't forget smelly socks, unexpected positions of toilet seats, faint smell of off food in the kitchen, not so faint smell of un-dealt with cat poo in the corner...=life with men. Ah yes but I forget- you've got a son! Hope he's better than most at these things! (and maybe you are not blessed with cats- mine are mental.)


My song for today is http://www.youtube.com/watch?v=FQALmeyeYi4 which is a recipe for slowing down and chilling for those of us who can't get away...great if you can get past the similarity of Dana's voice to John Denver's.
Penny47
Member

Re: May Moonbeams

Lexi! Love the photo! Looks as if you have reached the car park already!
This definition of younger breast cancer people is a bit odd- some say under 40, others its under 50. My CS has the grace to call me young which in her book is under 68! (why not 70?) There are so many of us older women over a certain age there's no point in giving us a special group I guess.

Aly and ALL - before I go back to sleep (yep, it's chemo brain creeping up on me) here is an updated list. I know several ladies are not posting but I hope and trust they are finding support elsewhere? I notice we are very bunched up at the middle and end of the month and also some of us are lagging behind (what? Is this a race? Certainly not!) We are a very select group. But wondeful! Apologies to all if I have made mistakes as to dates and treatment and best wishes to all!
This week 8/7-12/7
NamasteT 8/12- 9/7
AlyFEC-T 5/6-9/7
Jessiebearsmummy(Karen)FEC-T3/6-9/7
Jan34(Jane)3/6 on 10/7
Rara(Rachel)FEC-T5/6-10/7
Marleypop(Teresa)FEC-T 3/6-11/7
March13(Ann)FEC-T 3/6-11/7
Penny47(Me!)FEC-T3-11/7
SuziwongFECT - 11/7???
Sooz4/6 on 11/7
Lililouise's Mum4/6 on 12/7
Littlescoot4/100 on 12/7
Next week 15/7-17/7
Cazd4/6 on 16/7/13
BadbambiFEC-T 4/6 on 17/7/13
Mchales4/6 on 18/7
The week after 22/7-26/7
sueHFECT 5/6 22/7
Panacea(Deborah)?FEC-T- 5/6 on 23/7
Lexi?FEC-T-23/7
elleode(Sarah)FECT c4/6 24/7
Kirky68(Paula)FECT6-c24/7
Dodo14(Jo)FEC-T 5/6-24/7
Penash4/6 on 24/7/13
ZuzyFEC-T 5/6-25/7
Beckyjane64FEC-T 4/6-25/7
Barbara13FEC 5/6-26/7
Smills(Sarah)FECT4/6-29/7
Sunshine_Parol(Jill)5/6 on 25/7
In the Car Park Already!
Nanniereeree(Marie)
Janey
Lexi42
Member

Re: May Moonbeams

Hi Moonbeams, I'm still around Fec 4/6 day 3. just caught up on your posts. well done to those who have finished chemo. I am so glad to be more than halfway through. So far Se's this time feel slightly more easier than round 3, probably speaking too soon, or maybe it's the lovely weather.
Dodo, (sorry cant remember yr name) I wish I had seen that Murray match, but I was out booking a well earned holiday to Lanzarote in October with Oh as have been told rads will finish on oct 4th (My new date to look forward to). Seems a shame to be wishing our summer away, but I do have other nice things planned for July and August. Does anyone else feel that time is passing faster now?
i went to a meeting of young (under 50, so at 47 just about there) breast cancer sufferers last week and it really does help to meet people further along in the journey and to see how positive and vibrant we ladies are in the face of all the adversity. (Hope I'm making sense, probably got chemo brain today!). I also met a lovely lady who is just about to make the decision about the oncoytpye (cant spell it) trial and we had a long chat as her cancer experience is very similar to mine.
Right, it's 11.30 now so time to get up and dressed and then have a rest before the ladies final!
Best wishes to all.
Lexi.
Dodo14
Member

Re: May Moonbeams

Karen - we all saw and reacted to the news without you - it is natural for us to feel saddened by such news but we must remember all those good news stories as well. We don't really know what the truth wasfor Bernie do we? Anyway please do not blame yourself at all for bringing it up. It couldn't possibly have passed any of us by.
Rachel - Big hugs to you. And on the husband thing, sometimes it is easier when I am alone. He wants to do the right thing but he doesn't open up about his feelings and if I try to he closes me down with a (not meant) flippant comment like "Stay positive" or "Try not to be negative." Not helpful at all but I have friends and you guys to talk to instead so it's ok. I understand he finds it hard to think beyond today. Have a lovely time in Poole tomorrow in the sunshine.
Penny - Wow those semis were great yesterday weren't they. Don't know how I stayed up to watch Murray win.
FEC T 4/6 Day 4 - Still no joint pain. Very dry mouth and slightly sore throat but that is all so far...
nanniereeree
Member

Re: May Moonbeams

I have a cousin in law who lives in poole I love that area enjoy your weekend xxxx
Marie
Rara
Member

Re: May Moonbeams

Karen you do not need to apologise. We all felt the same when we heard the news .
on this rollercoaster ride I find that I am just not dealing well with things generally.
One thing, I feel so jealous of you lovely ladies who have husbands !! I know it's mad, but I have enjoyed being independent and making my own way with my son for 15 years but now I just wish I still had the OH.!!! He keeps in touch by text and the very odd visit and a hug. He understands what I am going through becsuse his long term girlfriend had bc a few years ago and he was by her side through it all.
If it wasn't for my son and the safety of my house if I left him alone here, I would go and stay with my parents!
anyway, enough self pity. Am off for a walk this morning, going to venture into town for a coffee with a friend.
then a power nap before a takeaway tonight with friends from college.....and tomorrow I am being chauffeur driven by my parents to see my twin brother and family in their new house in Poole.
Good to have things to look forward to and sunshine to go with it all!

take care xxx
Penny47
Member

Re: May Moonbeams

Aly the moon is waning down to new moon. We'll see if it has any effect on bloods!!!
Penny47
Member

Re: May Moonbeams

Hey Karen I picked it up from Hot Topics. I think everyone in the BC community was mourning Bernie - so beautiful and talented and she survived long enough to leave us her book which I hope to read soon. So don't blame yourself...takes too much energy! Right now I am trying to apply Jane's advice about focussing mental energy on turning up the switch for neutrophiles, and at the same time I am with Andy Murray as he slugs his way through the semi-finals and now the final! With all that and trying to keep cool my day is completely taken up!

Ann&Rachel- Head not too hot but I have a terrycloth hat which can be dunked in water to cool my head off if I need it. My skin is suffering from chemo but not from the sun (I use moisturizer and foundation with SPF15) which surprises me. I may eat these words after today though.

Everyone enjoy your strawberries (if you can) and Wimbledon. xx
nanniereeree
Member

Re: May Moonbeams

Jessiebearsmummy don't be silly we were all saying the same we just have to remember we are all different.we don't know how far hers had gone before she went to the Dr?
Marie xxxxx
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Re: May Moonbeams

Firstly ladies I'm so sorry I was the one who brought up the subject of Bernie Nolan, I know it's upset us all and for that I'm truly sorry . I know we are all on individual journeys and I know we are being treated the best we can be. Don't let this knock us, there are so many success stories and thatcontinues to increase and we should remember this. We need that positive group hug, and kick this awful disease where it belongs. Enjoy this lovely weather ladies - we are brilliant and we can do this xxx
Rara
Member

Re: May Moonbeams

Good to hear from you Ann!
best way to cool down is to hold your wrists under a running cold tap for sixty seconds!
I am cold tonight slthough the temp is sitting room is 21. I have hat on!
X
Dodo14
Member

Re: May Moonbeams

Glad that they have sorted out your meds to help you through this journey Ann.
Dodo14
Member

Re: May Moonbeams

Definitely is harder to keep cool - especially with headgear on all the time.
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Not applicable

Re: May Moonbeams

Hi DoDo,
I was given Emend and Cyclizine on my second cycle and wow what a difference on the side effects. I was up and about by day 5.
When I say exercising I mean doing the horses, so walking fields, changing fly rugs, carrying stuff etc. I was wondering if the lack of hair has anything to do with being unable to cool off.
Dodo14
Member

Re: May Moonbeams

Ann - Great to hear from you again. hope you are well. Exercising in this heat? No way I will be doing more than gentle walks whilst the temperature is this high. Take things carefully and look after yourself. x
Guest user
Not applicable

Re: May Moonbeams

Hello Moonbeams,

May I ask a question please. Is anybody finding it difficult to cool down after exercise in this hot weather.
I just seem to get hotter and hotter, is it a chemo side effect ?
Rara
Member

Re: May Moonbeams

Well done Barbara, and I hope you get some good sleep tonight and the side effects are kind to you.
yes, Marie, we have not heard from several Moonies for a few weeks. Well in case they are reading these posts, we hope you doing well

cyber hugs to all Marie, I agree, a group hug needed.
xx
barbara2013
Member

Re: May Moonbeams

Had FEC 4 today- feel totally wiped out at the moment- might be due to long day at hospital as my bloods were too low yesterday so had further tests this morning and was then able to get my toxic cocktail this afternoon- neutrophils had shot up to 1.4. Relieved and knackered but in better spirits (also upset by Nolan story- well it's our worst fears at a very vulnerable time of course). Have a good weekend everyone-hope SE's manageable for all.
nanniereeree
Member

Re: May Moonbeams

We seem to be missing a lot of the moonbeams along the way ?
nanniereeree
Member

Re: May Moonbeams

Ladies I think. All need a cyber hug {{{{{{xxxx}}}}}} and some kisses .
keep your chin up ladies as you say all our cases are different and they are treating us in our own individual way.
Marie
Aly1971
Member

Re: May Moonbeams

Well said Rachel, god its so hard isn't it - every day a new negative BC story, but there are also so many positive stories out there. When I first got diagnoses with BC I read a book called Uplift by Barbara Delinsky. She's American and a lot of the stories in there are from American women but its really a brilliant book - its basically anecdotes from women who have recovered from BC many of them now 10-20 years on I recommend it.

Rachel is absolutely right every one is on their own inidividual journey on this and it's so scary not to be able to look into our crystal balls and see whats going to happen along the line, but we have to be strong, take each day as it comes and try, hard as it is, to look at the positives, we are getting fantastic treatment to kick the b**stard into touch and out of our lives.

I had a really bad day yesterday too (has anyone checked what the moons doing??) missed half my YD's sports day because the nurse at the clinic couldn't get blood, she poked around for 1/2 hour trying to get a vein - of course the blood clinic this morning got it first time - that'll teach me trying to save time by doing it at my onc appt. Ended up looking like some mental person sobbing on the tube on my way home. But this morning I've decided to make the most of the weekend, and look at all the fabulous things that has happened since this all started - I've seen so much more of my friends and family, so much more of my children (was working long hours before) and it has really made me assess my priorities, moving forward when this is all over (as much as it will ever be) my life and focus will have changed for the better so many ways.

Anyway onward ladies, stay strong and sending you all massive cyber hugs. 🙂 🙂 🙂

Aly xx
Rara
Member

Re: May Moonbeams

LLadies I got myself in such a state over .Bernie Nolan that I had to ring th helpline.
i spoke to a lovely woman who gave me some very sensible words which I hope you don't mind me passing on to you.
she said that everyone's case is different,
also, the press are not reporting it correctly or accurately,
she advised me not to watch any programmes on tv where .Bernie's death might be featured and not to read about it in the newspapers either. Because it won't help our morale And no two cases are the same.
She said our oncologists are giving us the right treatment for us as individuals.
sorry if this seems patronising or anything but the helpline lady managed to turn my negativity and despair around this morning.
i am going to focus on the positives and remember how much I have been through in this journey in four months and how well i am doing and to look forward to next year. In no way am I begin disrespectful about Bernie. May she rest in peace.
with love to you all Moonbeams
xxxx
Dodo14
Member

Re: May Moonbeams

FEC T 4/6 Day 3
I also am very upset about Bernie Nolan. Only 2 years clear before it returned so viciously makes you wonder if it never got cleared fully at all. I am now seriously considering mx or even double ms regardless of shrinkage as I do not want to go through this again. Perhaps a knee jerk reaction and wil calm back down again but I have too much to live for to let this beat me. I think because she also had a daughter called Erin who would have been the same age at initial dx made it worse. Has really taken away the shine from my earlier good news. On the positive side - still no SE this cycle.
nanniereeree
Member

Re: May Moonbeams

Morning moonies,
I also cried when I tried to tell OH about Bernie Nolan also whilst writing this ( bl**dy hormones) lol
Whispering in case it comes back but two days before I started chemo every time I moved my head in bed with eyes shut or open the room would swim last night nothing fingers crossed it was stress!!
good luck anyone at the bar today?
Rough night only 5 hrs slep may kick hubby out to night if it is going to warm lol
Marie
Melrose15
Member

Re: May Moonbeams

Hi. Just popping back to say a big 'YAY!' for Marie and Jane. Marie enjoy your holiday and we'll see to back here,well rested and raring to to go with the RT. Jane, have you plans?
Sorry to hear some of you have your chemo delayed. It must be frustrating but as you say Karen also a bit of respite. Rest well and keep strong Moonies.
Emma xx
Rara
Member

Re: May Moonbeams

Well done on reaching the end of chemo Marie and Janey! WWhoop
and well done .zuzy and Jo for handling your doses of the T.
Linda your posts are very helpful and encouraging about the T, thanks.
i cried over .bernie Nolan too ....
Love to you all my fellow moonbeams

xxx

ps anyone heard from little scoot ? There are quite a few we heard from lately.
I am off to bed and determined to get some decent sleep as today was so much better following lasts nights sleep. I am getting bored of waking up at silly o clock plus it is detrimental to my daytime! Haha!
Penny47
Member

Re: May Moonbeams

Karen-We can indeed. We WILL!
Marie-Having made it to the car park are you going to camp in it?
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Re: May Moonbeams

Just a quick post to say well done to everyone. I'm on phone so apologies for silly spelling or words as we know it makes them up lol but does make looking back to posts hard. Have s good break Marie. We ll done for the those who have done the t part at the cocktail bar this week. Busy day today from visitors. Done too much housework now shattered, I'm learning how tired I am!
My previous chemo was delayed as WBC was down to 0.27 which is very low hence the one off injection after each chemo.
In respect of nails, can it be any colour so long as dark?? Blue or brown??
Got to say v sad to hear about Bernie Nolan - really upset me, I cried - RIP Bernie xxx
We can do this girls xxxxxx
barbara2013
Member

Re: May Moonbeams

Well done Marie and Zuzy- enjoy your well deserved holiday Marie. (Then don't forget to let us know how rads goes!)
nanniereeree
Member

Re: May Moonbeams

zuzy rads to come but not until I've had my holidays 🙂
son is moving in to take care of the dogs whilst we are away
Marie
Zuzy
Member

Re: May Moonbeams

FEC-T 4/6 day 1
so tax 1 is done, usual probs with cannula but after that was much easier than FEC has been, long may that continue!
Dodo, glad you're feeling ok, I've just got the Dom Perignon to take if I need them (wasn't expecting that as told Ickes not a tax SE) also stocked up with paracetamol and ibruprofn for pains which I was told will prob start day 3 and last for about 3 daYs, also got some co-codamol in case I need something stronger so feeling quite prepared...
marie, well done on reaching the end, hope last SEs are good to you, do you have rads to come or is that it?
Good luck to anyone else having treatment this week that I've forgotten and ope all you moonbeams are doing ok
zuzy xxxx
Dodo14
Member

Re: May Moonbeams

Congrats (again and this time correctly) Marie. Well done for completing your chemo. Hope the sickness much better this time.
Linda thanks for the word of warning. I have stocked up ready as you already recommended. x
nanniereeree
Member

Re: May Moonbeams

Morning moonies,
EC cycle 4/day 1
Well that's my last visit to the cocktail bar well and truly over (yippee).
Got some better anti sickness stuff this time as rely sick for ten days last time so hopefully none of that this time.
Marie
Lola65
Member

Re: May Moonbeams

Well done Dodo! However, watch out for days 4 to 10 on Tax. You shouldn't need any sickness meds if you are "normal" as that doesn't normally happen on Tax, but you will need diarrhoea tablets. It's the sickness tabs that give you constipation as they bung up both ends, so without them, it's diarrhoea I'm afraid! . I'm on Day 4 of cycle 5 of Tax and have brought the Imodium out of my box in readiness. Good luck and long may you continue feeling good!

Linda xxx
Dodo14
Member

Re: May Moonbeams

FEC T 4/6 Day 2 - Zuzy all the best for today. I hope this can reassure you but so far I have nothing to report in terms of SE. Nothing! I managed to stay about until gone 10pm last night far later than any other chemo day and I have taken no painkillers and have no pain. I also have no nausea despite less tablets and no signs of the indigestion as the omdanestron is no more. Long may it continue...
Penny47
Member

Re: May Moonbeams

Thanks Linda. I have just noticed that where my vein pain is there is a tiny bruise with something similar spreading under the skin. Nothing bigger then a 5p piece, but it does smart. I must have had an insect bite while sitting in the garden. The reason it's not bigger I've decided is that I regularly (and rather absent-mindedly) rub my sore bits (I've had water on the knee) with Arnica Massage ointment which has an olive oil base which my dry skin soaks up, and also has lavender oil in it, which is also great between my toes to prevent Atheletes Foot. (The lavender oil also helps me relax) So I think I have demonstrated the effectiveness of the arnica, which is what we can use to limit bruising! Not cheap but my current bottle has been my best friend since before Easter, so it does last. Only down side is it can stain your sheets if you are not careful.