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May Moonbeams

Aly1971
Member

Re: May Moonbeams

Rachel - is that your new hair?? Looks fab if it is, if not then you're sure going to suit a short cut.
xx
Rara
Member

Re: May Moonbeams

Good morning Moonbeamers!
How it lifts me reading all your posts and knowing that you all understand how I feel, indeed, how we all feel about our situation.
Love the hats Penny! Welcome Marleypop. And Aly I am also doing prechemo prep! Hair cut in half an hour! Then I have list of things to buy and things to make ready around the house.
Marie, Jane, Zuzy and Barbara - your posts since first chemo are really helping to calm me down. Thank you.
I must buy hula hoops! Today!
Tomorrow is pre chemo blood test then Thursday at noon is THE day!

Good luck to you all this week ,
Sending hugs and best wishes to all of you. A fantastic group
Rachel x
barbara2013
Member

Re: May Moonbeams

Hi everyone
I have lost my last posts and the forum moderator has changed my username- bit frustrating but I'm back as barbara2013! I wanted to welcome Littlescoot- such a rough time you've had- and all the others now joining. I am 4 days post first FEC and the worst part was before starting and not knowing so loads of best wishes to anyone starting this week- I think that is Rachel and Littlescoot- anyone else?
Love Barbara
Penny47
Member

Re: May Moonbeams

trying to change my profile picture to show me wearing most of the hats my MD brought back from Bolivia. They fit so well and are really soft. ED and EGD putting in bids to have some of them when I have finished with them. Off to buy scarves now, and show Maggie's to my family.
Aly1971
Member

Re: May Moonbeams

Wow Jane thanks so much for your post so useful and reassuring. I feel a bit like I'm preparing for a first baby at the moment, getting the house ready, buying in the right foods etc...I'm off to buy Hula Hoops! The spare room thing is a really good idea, ours is a mess at the moment so going to spend this week making it nice.

penny - if you have a Lidl near you they do an own brand salt n shake.
Marley Pop welcome, sorry you have to join us but know we're all here for you.
Marie Happy Birthday for yesterday I hope you were spoiled rotten!
Good luck to all those starting this week, and those already underway. May you all keep rested, well and SE free.

xxxx
marleypop
Member

Re: May Moonbeams

Hi Ladies, I'm here to join May Moonbeamers..
Diagnosed on 1st May, awaiting start date of Chemo...........
Love dipping in to find out such helpful info
Tx
Penny47
Member

Re: May Moonbeams

Jane I shall treasure those tips- great to have an excuse to snack on those hula hoops! And using the 2 litre bottle as a measure...it's set me thinking.
And Marie I wish I could find those salt and shake crisps- they always seem to sell out before I show up!
Rachel and others good luck this week. Waiting to see the Onc Nurse, heart tests and set up bloods and then chocs away.
(or is it chocks away?)
Thanks goodness it's a short week, anyway.
elliedog
Member

Re: May Moonbeams

Thanks Jane. I start chemo on the13th and need all the tips I can get. Thanks for taking the time to write it all down I will definately be referring back to your post. I hope you continue to stay well and keep the SE at bay.
Angela xx
nanniereeree
Member

Re: May Moonbeams

Jane I am a day behind you and you are so right not the hula hoops though I've got salt and shake crisps so I can decide if I have the salt or not.... Fluids keep then up
Melrose 15 thank you for singing ytwo me..
Marie
Zuzy
Member

Re: May Moonbeams

Jane, you are so right, I've already eaten a multipack of hula hoops since weds and just sent oh to buy some more!!! Xx
JaneyW
Member

Re: May Moonbeams

OK, so I’ve been quiet, but thought it might be of help to write down a few things as I know I’m among the first to get dosed this month. First of all, it’s doable - very doable. I followed advice from several people both on this website and friends, and those things worked. I also forgot to follow a couple of other bits of advice (mostly after the first day or two when I relaxed) and that was a mistake. Plus I worked out some things for myself, and maybe those will help others too.
Food. Never let yourself get hungry. I was told that and it’s true. Plan to eat about 30 minutes before you normally do, and plan it well ahead. I didn’t do this on day 3, and then realised when supper time loomed that I was too tired to cook or decide what I wanted to eat, so we had toast for supper. Not critical, but not ideal. If someone else is cooking, tell them not to be offended if you start on a bag of hula hoops 20 minutes before they feed you. There seems to be a critical point between feeling nicely hungry and then not wanting to eat that comes on quite fast. Once your stomach tells you it doesn’t want food you’ve got a bit more hill to climb. Hula hoops? Surprising but true. Tip from a real foodie, and she and I would never normally touch them, but the little packs just seem to hit the spot. Mind you, I’m a savoury person without a sweet tooth. You may find a little pack of toffee popcorn works. Basically forget balanced diet for a couple of days. Eat what gets you through. You have the rest of your long life to eat properly – and I find that feeling a bit rebellious helps!
Drink. Just do it! Anything – water, tea, coffee, juice. You need to wash the toxic stuff out, and the only way to do that is drink. You may find your taste is distorted, so you may have to push yourself. I find that adding a ginger and lemon grass cordial to the water helps, but my main help is ice cold tonic water. I can even persuade myself there’s vodka in it … (Oh, and the ‘anything’ doesn’t include alcohol. Our poor livers have enough to do just now. I’m holding the thought though!) I find that keeping score of what I’ve drunk helps. I have an empty 2 litre water bottle, fill it first thing, then empty out the equivalent of what I drink. I like keeping scores!
Rest. Whenever you need to. You don’t have to sleep, but lying down with a good book or a rubbishy magazine (tell everyone you have chemo brain and can’t concentrate on plots even if it’s not at all true!) is good, and seems much more restorative than it would with ‘normal’ tiredness. If you share a bed and have a spare room, get that set up. Stock it with drinks, nibbles, things to read, glasses if you need them. Pull the curtains in there before you go to bed. Then if you wake in the night (quite common if you’re on steroids for a couple of days), just creep in there and know you’ll be safe and comfy. Tell your bed mate that if you need him or her you promise to tell them, but if you just need to be in the other room then you’ll be fine alone. I find that my other half is very protective, but having said I’ll promise to tell him if he’s needed, he can accept that.
Constipation. Attack!! It’s the anti-nauseants. I let it ride as I’d been warned I’d get constipation or diarrhoea and didn’t want to take the wrong stuff. Now I know, and I won’t be fooled again! But the good news is that the anti-nauseants do work, and that was my major fear really.
I got dosed on Wednesday, it’s now Monday. I’ve been to the supermarket, cleaned the kitchen and got the washing machine going. Cleaned the bathroom yesterday. Saturday was tiredest – first day off steroids, but Sunday felt like I was getting back to normal.
Thinking of you all
Jane x
Melrose15
Member

Re: May Moonbeams

Hi Moonbeamers.
Just popping in to say enjoy the sunshine. I'm off to Windsor races although not sure how long I'll lastI with the bar and mouse!!
Glad all the s/e's seem minimal so far. You are all strong ladies. I hope it continues through the week. Keep us posted.
Welcome Littlescoot. I've seen you on other threads. You've definitely been through the mill and still remain positive. You have a busy week ahead. Good luck for Friday. It's been a long wait!
Is LS the only starter this week? I have my onc appointment wed so will know more then. Although I have a blister on my wound that doesn't want to heal. I'm hoping that doesn't slow things up.
Emmax
P.s
HAPPY BIRTHDAY TO YOU HAPPY BIRTHDAY TO YOU HAPPY BIIIIIIIIRTHDAY MAAAARIEEEEE HAPPY BIRTHDAY TO YOU 🙂
Enjoy your day and I hope the sun shines on all you do xxx
elliedog
Member

Re: May Moonbeams

Hi everyone, Glad we are all still really positive. The kids are starving in the middle of cooking dinner so this will be a quick post. Just wanted to say hi to Littlescoot. Cant believe how much you have been through since the last time I spoke to you, but you are obviously strong and have got through it.Lookslike we will be going through chemo together as well now I have ny first one on the 13th May. The girls on this site are lovely and really helpful, giving great support and advice. Will try and post later but if you need a chat Littlescoot just message me. Better go before the kids eat me.
Lots of hugs
Angela xx
nanniereeree
Member

Re: May Moonbeams

Rara tell them you are worrying about it they will give you tablets and take them don't wait to feel or be sick. I have had a couple of times feeling queasy but then it goes nothing I couldn't handle and I'm the biggest wimp when it comes to being sick... Would rather go to the dentist lol .
I think as long as you are careful with your hygiene you will be fine just ask him who will do things for him if you have to go in because he hasn't been careful enough ( unless he is capable of looking after himself) I am just washing everything before eating it i.e fruit and veg and just being cautious.
dont get too stressed out over it all
Marie xxx
Rara
Member

Re: May Moonbeams

Well done on doing your own injections Marie!
Re hair, I wasnt initially that bothered but suddenly become so bothered that had to take action!
The nausea is the thing I am most worried about as well as catching germs from my totally unhygienic 21 year old son!
off to meet a first operation buddy today who lives in the countryside where hopefully the sun will be shining!
Have a great day everyone.
Xx
Littlescoot
Member

Re: May Moonbeams

Hi rachel
thanks for the welcome 🙂 I've been hiding out on the younger women's forum the last few weeks :). I forgot to mention I'm having the cold cap as well As everything else. I had really really long hair which has been cut into a short graduated bob, but although the length was fine it was still too thick so I had about half of it thinned out last Saturday. And I've still got blooming loads. Not sure if this is a blessing or a curse at the mo lol. But at least it gives the cc it's best available chance. Despite 3 ops, 3 post op emergency admissions and stays, 4 seroma drainages, 1 infected seroma, and a bad reaction to the anti bios where my inside of my mouth swelled and got stripped of a layer of skin and made my tongue feel like it was in nettles, after all that the thought of losing my hair is still the one that freaks me out the most. Hence I'm trying all and everything 🙂 xxx
LS
nanniereeree
Member

Re: May Moonbeams

Morning All,
worst night so far last night but that was down to hubby moaning he couldn't sleep then snoring whilst I lay awake for hours...
Managed to inject myself today so no more DN coming daily 🙂
Rara I'm sure pixie cut will be fine I'm 52 and I've had mine short and spiky for the last couple of years it's very thin though.
I had cannula it was fine the worst bit was a small scratch at first.
last day for steroids and anti sickness tablets today unless needed hopefully not!
Have a lovely day it is beautiful and sunny here today and I can guarantee the coast roawith Hunstanton will be queuing by dinner time .
Marie xx
Rara
Member

Re: May Moonbeams

Welcome to you Littlescoot, it sounds like you have been through the mill already although you sound very positive about it all:-) I start chemo on Thursday (FEC -T too). However I still don't know as much detail as you do! my pre chemo talk and blood test are on Wednesday, although I have had initial consultation with ONC.
I believe there is also a Facebook site for younger women which you may find helpful. Am sure another Moonveamer will point you in it's direction as I don't know details.
in preparation for chemo some Moonbeamers have had their hair cut shorter already. I am having a pixie cut on Tuesday which the hairdresser reckons I can just about get away with despite being 49! I am not trying the cold cap as although it is available it means an hour tagged on to each side of chemo which I don't fancy! I am having the chemo through a cannula apparently which takes three hours! Maybe I will get a Picc line if I ask nicely as it sounds worth having!
The Moonbeamers that have started chemo have all written such positive posts about their experiences so far that I no longer feel so concerned And I hope you don't either.
best regards,
rachel x
Littlescoot
Member

Re: May Moonbeams

Hi everyone
I wonder if I may join you all as a May moonbeam? I was originally going to be in the march thread but further surgery was required, then it was to be April but I got a seroma, then an infected seroma which put me back into hospital. Then I changed hospitals and trusts.
So finally I start my chemo on Friday may 10th. I am on FEC (100)-T for 6 sessions, with Lenogastrim as a daily injection for 5 days. My anti emetics will be Ondansetron with Dexamethasone, although I'm still trying to get Emend prescribed. I am having a PICC line on Tues, final pre Oncology appt Wed, Macmillan day centre for reflexology on Thurs, and relaxation session, and I start my chemo at 12 o'clock on Friday, oh and I'm at work all week too. Although I am finishing at noon on Friday for 4 months until chemo is finished, as after consultations with my GP, Occy Health, and HR, it is not wise for me to exposed to clinical areas, patients and samples with low immunity. So finally I get a rest.:)
Kind gentle hugs to everyone (inc you Elliedog) xxx
LS
barbara2013
Member

Re: May Moonbeams

Hi LOLA, Zuzy, MARIE- Thanks for your comments- my anti-sickness meds direction says 'as necessary' and my memory is that is what nurse said. I did ring the hospital and as chemo clinic closed on sat was put through to cancer ward where oddly the (I assume) nurse did not seem familiar with FEC which I thought was the 'bog standard' BC chemo!! He first said take the tabs then only take them if I feel sick after the 72 hrs so that's what I'll do. There is a lot of muddle at times in what you would hope to be a very precise situation, isn't there? Also intriguing how different onc/ hospitals work and you have to wonder if the cost of these drugs contributes...
Still it is a learning curve!!
Penny47
Member

Re: May Moonbeams

Ali- Thanks for updating the list it makes more sense now.
Ali, Angela and Caz- Whoops- probably the 16th now. Possibility of my getting chemo on the mobile 2nd and 3rd cycle which will save a lot of petrol and parking - only two miles from my front door!
Went to see ONC on the ward- ED warned me "He probably wants to stick a line in if he's seeing you on the ward". I had a struggle to remain calm. In fact we just sat down and had a relaxed discussion of it all. My ONC file is so thin which amused me - it'll put on weight soon enough! It's great when the ONC wants to engage with the CS and the Rad people. Three things I like about this ONC: 1) he has the gift for explaining things clearly in language I can understand. 2) he's fit 3) he told me I had good veins. He can definitely come to my party! Anyhow I am down for FEC-T which as someone else said on these boards reminds them of Father Ted. Well I'm a Mrs Brown fan!
Came home and spent a good 2 hours gardening because I Could. No annoying bruises or medical bits to worry about! Work tomorrow and then face time with four grandchildren and parents plus their auntie over Bank Hol, with a scarf-shopping trip thrown in. Happy weekend everyone!
nanniereeree
Member

Re: May Moonbeams

After reading your post Lola I probably got the injections because of other critical illness ..
Marie
nanniereeree
Member

Re: May Moonbeams

Barbara, I had Iv for sickness then sent home with 3 different lots of anti sickness tablets one to take 2 4 times a day for four days and other to take as well if those didn't wrk and another to take that are very strong one one every 12 hours ( only got two of those) steroids I have to take 3 a day from day 2 for 4 days and injections to increase blood cells for eight days started today then next thurs I start antibiotics for a week phew !!! I think that is it.
i wasn't meaning not to be very careful with hygiene I just think ( my personal thought) that since the introduction of all these anti bacterial stuff there seem to be a lot more illness in people probably due to more people travelling than we used to in the 60/70 s
Marie
Ps I have bought anti bacterial hand soap for the house whilsI undergoing chemo lol
Lola65
Member

Re: May Moonbeams

Aly 1971 - I am also not part of this group. I just popped in to say hello. I'm with the February and April groups. (Long story!!!)
Zuzy
Member

Re: May Moonbeams

Barbara, I had IV anti sickness and steroids and then sent home with 2 different types (steroids and anti sickness) to take for 3 days and a third to take if need (which I have also been taking tobe on the safe side!) maybe check what they say on the label? Although if you're feeling ok I guess that what you've had is working!
Aly, I'm in south London, whereabouts are you?
Zuzy xx
Lola65
Member

Re: May Moonbeams

Hi Barbara,

The injections are down to your oncologist, sometimes depending on your regime and chemo dose. There are 2 different types. One is a single jab taken the day after chemo. The other is a series of singles jabs taken over 5 or 7 days. Not everyone gets them. Some hospitals give them automatically. Others give them on second or subsequent cycles if you end up with neutropenia on an earlier cycle. Others don't give them at all. Your oncologist or chemo unit will tell you if you ask. They are very expensive and come with their own set of side effects (flu like symptoms and bone pain) that some people tolerate whilst others don't.

One of the reasons for not giving them is because they boost the white blood cells but can over-do it if your own bloods don't actually drop that low, and this can cause other problems in some people, so some oncologists prefer to wait and see.

The low immunity period is different from regime to regime. I am on Docetaxel/Carboplatin/Herceptin. My bloods should start to drop about day 5 and start to get back to nomal about day 14, with the lowest period days 7 to 10. In cycle 1, I was hospitalised on day 10 but by day 13 they were back to normal.

I've never been sick and never taken any sickness medication, but I believe those who have have been taking the sickness meds whether they felt sick or not as it is easier to prevent it than to cure it. However, they cause constipation, so its a fine balancing act! I haven't opened the packet as yet.

You could write down all your questions and make sure you ask next week. xxxxxxxxxx
Guest user
Not applicable

Re: May Moonbeams

Aly1971 - just to let you know I started in April and am part of the AAA gang! think you got me from an early 'good luck' post to the May Moonbeams - love the list but you can remove me and hopefully that will make it a bit more manageable for you all 🙂
Barbara - not sure about the 3 day IV? I was on anti sickness IV for about 20 mins just before the chemo. I then went home with 2 different tablets. 1 was steroids to be taken for 3 days post chemo and 1 was anti sickness tabs to be taken 3 times per day for 5 days post chemo whether feeling sick or not. From what I can gather this is pretty standard but please dont quote me on that as may depend on what regime you are on (I am on FEC-T) Did they give you an out of hours number you can call?

Hope all moonbeams are doing well

Pauline xx
barbara2013
Member

Re: May Moonbeams

Thanks for your advice Lola- so is it the case that not everyone gets the tummy/booster injections? I was wondering why I hadn't been told about these- or given them. Perhaps someone could also clear up the anti-sickness medication question. I was tld my antisickness IV would last 3 days but have been given tabs whoch I thought I took only if necessary after 3 days- am now wondering if I should take them anyway? I thought the nurse suggested only if needed and thought the nausea was only at beginning of cycle? Is it right that sepsis danger starts second week?
Sorry for list of queries I am a bit confused- should probably ring hospital to make sure but chemo clinic closed till Tuesday! One of the most annoying things about this state is not being sure of anything you have heard!!
Take care all
Barbara
Aly1971
Member

Re: May Moonbeams

Thanks Lola - noted and will be extra vigilant on the hygene front thanks for the warnings. x
Aly1971
Member

Re: May Moonbeams

Right - reposting this under my correct account and have taken the post off from the alysharma account to avoid confusion - hence the repost messages from that account - sometimes this internet stuff is very confusing!

One last post before I head off - I thought I'd update Penny's fabulous May Moonebams list with when people are starting / are due to start - I'll update it occasionally as more dates come in - hope you don't think I'm being too anal but I found it helpful in keepng up with eveyone. My job is basically organising things so it felt nice to be making a list!
Also on the cleaning thing - Im remaining pretty relaxed on that I think as long as everyones washing thier hands enough we should be ok - I will be using a lot of that hand gel stuff though, especially on public transport!
I'm very sorry if I've missed anyone out - Ive tried to go back and double check I've got everyone xxx
Lexi 42 - Alex - 30/4/13
Panacea - Deborah - 30/4/13
JaneyW - Jane - 1/5/13
Zuzy - 1/5/13
Nanniereeree - Marie - 2/5/13
Barbaraannem - Barbara - 3/5/13
Rara - Rachel - 8th?
Penny47 - 14th???
Caz D - Caz - 14th???
Melrose 15 - Emma
Sunshine Parisoles - Jill
Katebill
Redcap - Janet
PCmartin
Pammyx
MarthaSOS
Ellydog - Angela
Lola65 - Linda
Badbambi
SueH
R.hands
Beeny (no chemo - whoop!!)
JessieBearsMummy - Karen
Mills1 - Sarah
LucyLou1516
Lola65
Member

Re: May Moonbeams

Hi Moonbeams,

Just popping in from the February Valentines to wish you all luck, and a little word of warning.

Please don't be too cavalier with your hygiene. I agree with all you have said about germs, but PLEASE remember that chemo kills off your healthy white blood cells, and unless you automatically receive the boosting injections (most don't initially) your immunity will be NIL. It is easy to say you rarely get infections, but with NIL immunity, you will, believe me. I haven't had an infection since I was a youngster but I was admitted to hospital for 3 nights on cycle 1 due to neutropenia sepsis and on IV antibiotic infusions. Not just me, but a large number of other Valentines, too. I don't wish to panic anyone, but vigilance is the order of the day!

Good luck Moonbeans, xxx
Aly1971
Member

Re: May Moonbeams

Reposting under my correct account...
Hi Ladies - wow everyone who started this week seems to be doing so well - you are all truly inspiring, rest well this weekend and I hope the sun shines where you are.
On thing my oncologist said when I met her on Friday was to pace yourself, the first few cycles can go by 'relatively' easily with not a lot of fatigue/SE's she said use this time wisely to rest up and keep well, don't go mad thinking you are invicible as the last few rounds will be really tough and this is the time to rest and prepare. I thought that was very sensible advice.
It looks like I will start around the middle - end of may, I have my next appt on Friday (10th) when i will get booked in properly, as its ony 2.5 weeks since my Mx/anc she said we have plenty of time. I'm guessing week 20th (its my daughters 8th birthday on the 18th so really hope its not earlier!) My onc seemed really nice with a good sense of humour, she was recommended to me and I'm so pleased as hopefully it will make this all easier.
Lexi I too am hoping to work a bit through treatment just to keep me sane although my Onc really wants me to take it easy and not push myself too much, she's given me very strict limits. On the plus side though she has said there is absolutely no issue with going to gigs (I'm an avid live music fan) and even a festival (the Isle of Wight - we'll be in posh tents!) if it fits into my cycle ok!! She even said she'd avoid a pic line if I wanted to go to a festival as she was worried what might end up going in it!!!
I'm going to be on FEC-T like a lot of you 6 cycles in total (3 FEC / 3 T?) and I'm going to try the cold cap - although have been told I need to cut my nice long hair for it to stand a chance of working - will book myself in next week so I have a couple of weeks to get used to it!
Anyway have a lovely bank holiday weekend whatever you are up to and good luck to all those startiing next week.
Aly xx
nanniereeree
Member

Re: May Moonbeams

Aly1971, yes it is some people don't bother and are all right but I'm ok to leave them out for the sake off safety.
Nowing my luck at the moment i'll get food poisoning or something lol
Marie xxx
Aly1971
Member

Re: May Moonbeams

Marie totally agree on the bleach front, I've always been one of those mums to let the kids get filthy and eat food they've dropped on the floor (within reason). I live in London though and will be taking the bus/tube quite a bit so will be cautious with that! Hadn't thought about shellfgod, is it the same as when your pregnant - no blue cheese, bloody steaks and runny eggs - how boring!!
Goodluck with the injection, not sure I'll be able to manage that one either!
X
Aly1971
Member

Re: May Moonbeams

Hi ladies just to say I'm alysharma - posted from my computer for the first time and it used an old account - sorry to confuse everyone will be reverting back to aly1971 from now on!!!
nanniereeree
Member

Re: May Moonbeams

I have two family friends one bleach clean freak the other one is totaly the opposite guess which ones kids were always poorly and the other never had only contagious childhood illnesses?
Marie
nanniereeree
Member

Re: May Moonbeams

Allysharma, just be careful don't bleach everything they said to just wash fruity and veg before use and don't eat anything live or shellfish soft cheese a pregnancy diet really.
I think using leach and antibacterial stuff gets rid of your good bacteria as well I only use that in hand soap
Marie
nanniereeree
Member

Re: May Moonbeams

Glad everyone's going o.k. The injections are to boost your bone marrow to produce more white blood cells that much I did take in and tablet steroids.
Lexi glad that is o.k ( insurance know if they could they would find a loop hole if necessary)
Elliedog head is o.k just a bit fuzzy normal then really haha!!

had nurse come today she is going to get me to do the injections if I can!! Bit needle phobic but will give it a go.
if not my friend across the road is a nurse she will do it for me xx bless her we've been through some crap together mostly hers ..She lost a baby at few months had two more then moved up got pregnant dx with cervical cancer had to make the decision to abort it or poss die herself then lost daughter to the same cancer at 25 teen years ago so we have seen some shite and been there for each other through thick and thin. One of those you don't see fr weeks/months and pick up as though it was yesterday .
The scariest thing was we went to a spiritualist evening and all this came out and the woman never knew her so it really shocked me and her!!!
Sorry for rabbiting on blame the chemo 🙂
Marie
Guest user
Not applicable

Re: May Moonbeams

I've reposted under correct account
Lexi42
Member

Re: May Moonbeams

Hi everyone, lovely to hear Beeny's good news.
I've spoken to the car insurance people and they are fine with me driving and have made a note on the policy that I'm undergoing chemo. Luckily my commute is very short and husband and son can always come and get me and the car if necessary, so we have all angles covered. I really have to give it a go at the work to keep myself sane.
Friday was a good day for me, worked til 1.00, could have continued but district nurse was coming to see me at my house at 2.00 so I had to go home. She changed the dressing on my picc line, does anyone else's keep bleeding a bit? We,ve arranged for me to go to the surgery to have it flushed next Tuesday.
So today, day 5, feeling as weak as a kitten, defo would not go to work feeling like this. It was a struggle just having a shower. This must be the lowering of the white blood cells I guess. Apart from the tiredness and mouth dry, no other side effects, just hate feeling so damn feeble though. Resting now, feet up, orange juice in hand. And my kitchen's nearly finished... Have a good weekend everyone.
alex
Rara
Member

Re: May Moonbeams

Hi Barbara, I was told the injections are an immune booster and the steroids are in tablets form for three days plus anti sickness tablets for three days. The nurse said I have to take antsickness even if I don't feel sick as it is easier to prevent nausea then to stop sickness once it starts. she did also say chemo is culmative so effects build with each cycle.
Lucy Lou I found the second op much harder to recover from. They took out a fistful of tissue containing 17 lymph nodes. It's 7 weeks since that one but I suppose the two lots of general anaesthetic within 3 weeks has a lot to answer for! Plus I have low bp and anaemic hence general fatigue! Now the weather has improved I think this will help me to get out an about more and get fresh air which will help my recovery. Only 5 days to chemotherapy now.
i hope everyone has a good weekend.
best wishes,
rachel x
Guest user
Not applicable

Re: May Moonbeams

Nanniereeree
they did take 4 of my lymph nodes out when I had my mx but 2 had cancer in them, so thnow are now removing the rest to see if it is present in anymore of them, hopefully not, as this will mean tests to see if I have secondary cancer.
lucylou
elliedog
Member

Re: May Moonbeams

Hi everyone
Fantastic news Beeny hope you will post from time to time and let us know how you are getting on.
Glad all the girls are still doing well after their first chemo is so encouraging for the rest of us coming up behind you. How is your head Marie I hope its easing of now.
Can I just ask. When I was told I would be having chemo I went into ultra cleaning mode and telling everyone (my 2 boys) they had to wash their hands and generally keeping germ free. Think I have been going over the top and after reading everyones posts I think that maybe I should ease of a bit and that maybe I don't have to lock myself away in a room and that it is possible that family life can go on albeit with just a few changes.Did anyone else do this or am I just a cleaning freak?
Had my MRI yesterday. It was noisy but had my own music on so the most difficult thing was stopping myself from moving to the music. Also was given my next slot of appointments including starting chemo on the 13th May (at last). Before that I have a pre-assessment appointment and a radiography reveiw (having rads after chemo) think I know what to expect on these appointments but no one has actually sat me down and told me, so not sure if I need to take someone with me. Appointments were left for me to pick up from the reception so couldn't ask any questions. Maybe they will phone me after the bank holiday. Any way better go, got to go clothes shopping with my eldest son, 14yrs, im sure boys are harder to shop with than girls, wish me luck.
Lots of hugs
Angelaxxx
barbara2013
Member

Re: May Moonbeams

FEC treatment one
Hi all
Pleased to see lots of positive posts here and that so many of you are coping so well with the treatments and with the anxieties. I had my first FEC yesterday and so far pretty good. I was pleased to have had the PICC line although found it a bit scary at insertion. Side effects so far- feels a bit like a bad hangover- which is how my oncologist described it- a bit rough, headachey, bad taste. Had strong anti-vomiting IV before chemo which should last for 72 hours- after that have some anti-nauea meds of necessary- does anyone else have this? My steroids are tablets rather than injections. I wonder why the regimes vary so much?
Didn't try cold cap and have booked to have my hair cut really short next week- I am worried that I will be completely grey then- my son flies home from US the following day and might not recognise me!
I admire you Lexi for getting into work! I am not sure when/if to try- will see how the next few weeks go- my chemo nurse said the effects are cumulative though...
Beeny do let us know about tamoxifen- I'm worried about that one too- but assuming that the chemo will catapult me into menopause first. Does anyone know- I am on the point of heading menopausal anyway although period arrive to join in with chemo- just my luck.
Anyway hope you all get some rest and some sunshine this weekend!
Love Barbara
nanniereeree
Member

Re: May Moonbeams

Beeny I'm so pleased for you xxxx
lucylou I really don't know why all hospitals don't do things the same I had myMy ndes checked whilst doing my op and removed the same day .
I think headache is because I'm sleeping so heavy or it's just being around my hubby xxxxx ?( his words not mine lol )
i have district nurse coming to give injection today for 8 days might as well keep them in work will see if I can do it but am very very squeamish lol even after two kids and all this
have a lovely weekend
Marie
Aly1971
Member

Re: May Moonbeams

Beeny that is such fantastic news, so pleased for you and good luck with the Tamo - let us know how you get on with it - you can be our guide on that one as I'm sure a lot of us will be taking it when chemo ends - I know I am xxx
Penny47
Member

Re: May Moonbeams

Lucylou and Anna- Thanks for riding with us so far- Have a great time on your new treatment plans and whatever else you do now! We'll meet again on these boards...
Guest user
Not applicable

Re: May Moonbeams

Hello melrose
I had my mx on 15th April but went back for my results on 30th, only to find out it was in my lymph nodes. Now I am back in on the 7th May for the rest removing and then have to wait 2 weeks to find out if it was present in any of my other lymph nodes. If not then will see oncology and start chemo in June. Hope you are all doing ok and coping with the sickness, it is the sicky feeling which will be the worse part for me, I hate feeling sick.
Rara
Member

Re: May Moonbeams

Brilliant news for you Beeny! Whoop whoop! I am delighted for you. What a marvellous way to start the bank holiday weekend x
mills1
Member

Re: May Moonbeams

Hello, I must say how encouraging i find you all, I'm really not the only one and YES it is doable. I like to hear that your still to some extent doing 'normal' thing ie. hairdressers, work and out for meals. After the onc telling me all the SE and risks of tretment and infections i came home imagining being closed in my room for months. Hope you head is better Marie. I start FEC on May 27th then June 17th AAAAARRG. Have booked in for look good, feel great thingy on 18th june so hope i'm ok to go. I have decided to shave my head before my first treatment, Think i'ts psychological, I will decide when i lose my hair!! At the mo it does not bother me will brazen it out and hoping to go scarf free sometimes too. I see it as telling everyone i'm a fighter. Thinking of you all, we are doing this together xxx