message for Dilysp Pauline & Dhalia

message for Dilysp Pauline & Dhalia

message for Dilysp Pauline & Dhalia HI Ladies

well I hve started a new thread that old one was getting a bit long i hope you dont mind.

Pauline you posted at exactly the same time as me nearly how weird & dilys while I was looking you too posted…

Dilys well I am glad that your bits and bobs are all fine…that is great news, I havnt heard of the herceptin part of it before i thought they gave that to you afterwards? lucky you with 3 FEC but I think that is not too bad I have had to endure 6 of those nasty things. 3 I could have dealt with.

Love
Lucy

Security - proceed with caution Hi all

I’m a technophobe and don’t want to be a scaremonger but …

I recently joined bcpals - very good. I was reading a thread earlier about security and how anyone can Google and read threads on the BCC site - not the pals site though.

Just a word of caution with regards to what you post here; I certainly hadn’t realised how “open” it is. I just Googled “dilysp” and you can read these threads without being registered or logging into an account as far as I can see.

Hopefully Private Messaging will be available very soon, as it is on bcpals.

Meantime be careful.
D

Hi Dahlia

It does tell you that anyone can read the threads but not answer them unless your registered…

I dont think we have given anything away about ourselves that is important, everyone in here is in the same boat…

Lucy

Dilys, Lucy and Pauline Hi

Yes, Lucy I agree but I wandered into a thread the other day that was getting very personal and it has been known for friends and family of posters, to try and follow up or track what their loved ones are “saying” and quite often people posting here would say things they’d not say to friends and family. I daresay that those who go digging on Google and the like are not real friends and have mischief in mind anyway but some may be genuinely concerned family who end up reading something they weren’t supposed to see leading to grief all round.

I read one a few miniutes ago, without even having to search, and it made my blood run cold.

It’s sad reflection on the world that we cannot have real privacy on these wonderfully supportive sites, the sites we need so much.

I just want you girls, us girls, to continue being mindful of what we post and who can potentially read it that’s all.

Hope I don’t sound like a misery - I’m not, and when PM goes live I’ll prove it!

Love D

HI Dahlia…

I wasnt having a go at you, please don’t think that at all…you are not a misery and I know what you are saying …some of the things that have been posted on here about marraige etc could be potentially used if someone was that way inclined…

I think most people are aware and it does say something when registering about what name would you like to go by on here, if you look at peoples names I think a lot of them have sudanyms/made up names not sure how you spell it…

Love Lucy
XXXX

Dear All Dear Lucy, Paulne and Dahlia

Yes they do indeed warn you not to say anything too personal that would give away who and where you are and I dn’t think we do really. Anyone sad enough t want to read my posts deserves everything they get! Mnd you I will try googling my name just to see! I sometimes wonder if the various surgeons look to see what is said about them! In case he is looking, mine is brilliant

Off to the the cinema today between hospital appointments! The heart test has come through for Friday which is good. And a couple of visits planned to look frward to, so am feelng a bit chirpier.

How are you Lucy? Feeling any better? I really hope so.

Love to you all

Dilys
xxxx

how funny Hi Dilys

Yes I am fine my love got the results of the blood test - I just have high cholesteral and low blood count but they are not worrying now about the cholestral as it will probably sort itself out when I start eating prorperly again and becasue I have been so sick they dont want to change what I eat now, thankfully not the diabetes thy thought…

enjoy the pictures hope all is well at the hospital

you have so given me the giggles with your last post It was so funny especially the bit about the surgeon…

LOve to all of you as always
love
Lucy

Hi Lucy Dear Lucy

Oh dear does it never end? Suspected diabetes? High cholesterol? You will be so pleased to get back to normal, won’t you?

Cinema is off for today as my husband isn’t feeling so good and is having a sleep instead. Never mind, we can go on Thursday. Not the end of the world. I’ll wander across to the library instead later.

Loads of love

Dilys
xx

message for ssilver Hello Lucy,

I’m glad your results have come back o.k and you donot have to worry about the dibetes.

Weather’s lovely here i hope you are able to enjoy it at the moment.
I’m off for my 3rd Epi tomorrow, i must admit i am dreading it as my arm is still sore and bruised from last time i might try and ask them to use the other arm as my viens are shot now in the one they normally use.

Keep well and take care.

Candy.

Hi Dilys & Candy Dear Dilys & Candy

yes thank you both I was so relieved about the diabetes side of things, I also had to get antibiotics this morning from the GP as my arm is still bad and hardly able to bend it, he thinks I have an infection in the veins but doesnt know how, as it isnt where a needle has gone in, so we will see what happens now…

Cabdy sorry to hear that you arm is still sore it is a real pain you just get over one thing then something else crops up…I hope your epi goes ok that epi is nasty, they wont use the other arm if you had nodes removed, they will offer you an inline, which I didnt want.

sorry to hear about your husband Dilys hope he is ok

hope you chemo goes ok tomorrow Candy

love
Lucy
XXX

Hallo all Dear All

Our Pauline-Lucy-Dilys chat is getting popular, so welcome everyone. Can I ask a really stupid question? Well two really. First, what is Epi? And second, has anyone yet dared to shave the affected armpit? I am dying to but can’t even really feel it. Mind you I shaved my legs at great personal cost (remember the bad back?) before I went into hospital, and had forgotten about the sexy surgical stockings! Personal pride rules sometimes!

Much love

Dilys

xxx

Hi Dilys

I think Epi is short for the epirubucin the red chemo they put in with the syringe type things, it is the one that is most likely to make you ill and you wee red after having it…it is the evil one as I call it…and just the thought of it makes me want to vomit, its the one that wrecks your veins and is the E in FEC.

No not if you are using an ordinary blade razor Dilys you should have been told not to shave with an ordinary razor if you have had your lymph nodes removed…you need to buy an electric razor…that is what I was advised to do and did…otherwise if you cut yourself you could get lymphodema.

They sent me home in those damn stockings i still have them at home somewhere…

love as always
Lucy

Epi Hello Dilys,

Epi is short for Epirubicin, i am on it at the moment and Lucy is right it makes you feel like s**t.
I have only had two doses with the third tomorrow (dreading it ) and my veins are shot already so i’m going to see if they will use my other arm the side of the op.

I am also having trouble shaving under the affected armpit, as where they have sewn me up there is a ridge in the middle and an electric razor won’t fit, i did try a bic razor but as i am numb there i would not know if i had cut myself until it was too late, so i won’t use that either at the moment.

ps : Hello Lucy, i hope you are keeping well at the moment, take care and best wishes to you both.

Candy

Seeing red! Hi

Dilys - didn’t they tell you to only use Immac or suchlike? Just use cream or else you’ll shred yourself - you won’t feel it of course but it’ll look damned unattractive!!! Youywon’t need to worry about your legs soon because the hair will disappear and that is a summer blessing although arms look ever so slightly odd when bald. When it all grows back you’ll feel like you’re going through puberty again, chuckle.

I know Lucy didn’t “rate” the FEC but I had no problems on it at all, bags of energy, insomnia, hunger etc. Won’t bore you with all that I “got up to”. Could have sworn they were running water through me until my hair parted company with my head to quite an extent, despite using the cold cap for hours and hours. Oddly enough your hair starts growing before you finish the chemo.

Hope this is a little encouraging but everyone is different.

Hello Ladies

Have done a lot of work today so feeling very pleased with myself.

Lucy could you tell me please what an “inline” is? I know they won’t let you have it in an arm that has nodes removed and just wondered what the inline was? I am so glad Lucy your blood test showed high cholestrol and not diabetis. I have had high cholestrol for years and they control it with tablets so its nothing to worry about even if it doesn’t go when you get back to a proper diet.

Was interested in your remark about the cold cap Dahlia. I was told by my oncologist that I will almost certainly loose my hair even if I use a cold cap. This was because of one of the chemo treatments, but don’t know which one he meant (I am having FEC + Taxotere), I am therefore thinking if its going to go anyway there is no point in delaying the inevitable by trying the cold cap?

Hope you are okay Dilys, and that you get to the pictures tomorrow.

love to all

Pauline
xxxx

Hallo ladies Dear All

Thanks so much for all the advice. I have checked the literature they gave me and it looks as if I will have the same as you Pauline. In my case three cycles of FEC (thanks for telling me about the Epi) and then three of Taxotere, although they also told me the second three would be herceptin as well. I am seeing the oncologist again this afternoon so will double check. Might also finally get a start date, much though I don’t want to start.

They said the same thing to me about the cold cap - that it was very uncomfortable and that I would lose my hair anyway. So I was planning to do without it and accept the inevitable with grace! Mind you I am hopeless at tying scarves at the best of times. Hopng someone at the hospital will be able to teach me.

No one had said a word about armpit shaving! I haven’t dared as I can’t feel it anyway. Hadn’t really dared to think about creams either but may be that is the answer. Mind you I suppose it will go once the chemo starts anyway? And after that I mght have worked up the courage to touch it. Do I gather I am not alone in still being numb under the arm and down the arm a bit? Also if I scratch under the missing breast it makes my left arm all tingly! Very weird.

Candy I hope it goes ok today for you. And well done with all the work Pauline. Must make you feel a bit useful again! Lucy - fancy coming home with surgical stockings! I ripped mine off the mornng I knew I was going home! Lovely to be rid of them, as well as the injection in the stomach every night!

Lots of love to you all

Dilys
xxxx

Hi Pauline,Dilys, Dahlia, Candy

My you have all been busy, pauline an inline is like a catherter type tube that they put in your upper arm or neck Ibeleive it is also reffered to as a picc line, it is so that they dont have to keep finding a vein each time, I didnt want this as I had read quite a few horror stories and there was one on here the other day where they had trouble getting the line out of the lady, it has to be done by a qualified person and they have to take x ray’s etc to make sure it is in the right place, I was concerned because I had read that it was near to your heart and I thought well if it’s done that with my veins in my arm what an earth would it do to my heart…but then some people on here seem to swear by it, mum finally made my mind up as she said “Lucy why do they not do it as a matter of course???” so who knows.

Dilys The cold cap, I could have had it but didnt as I too had heard that it didnt work from my chemo nurse and they see a lot of people up in London and I think maybe I do too much investigating but I have again read on the net that you could in future get cancer of the scalp, which I could understand becasue if you are blocking the stuff from making your hair fall out it cant be working on your scalp…so I thought just for vanity it wasnt worth it, I hate not having hair but it is starting to come back now…if but slowly…I also didnt want to be in the hopsital for more time than nescesary…

Dahlia I am glad that you had s better time than me and Candy with the Epi side of chemo we have both suffered dreadfully, I think it is to do with your genetic make up…and I have always told Pauline & Dilys just to take it as it comes not everyone is the same but just be prepared incase the sick side of it does happen…

Candy…I hope everything has gone well for you today and I hope it doesnt make you too ill again, how many more of those are you having???..the last time I had it they gave me emend anti sick drugs if you are sick this time and you have to have more epi ask them for those I know they are expensive… I feel lucky that I just have one more to go although I feel sick at the thought of it, I have to take Lorazapam the night before and before chemo for the sickness & I think that has helped me get through this as it is also a sedative…it doesnt make you like a zombie but it calms you down a bit…best wishes my love.

thinking about you all especially Candy today

Love as always
Lucy
XXXXXXX

Hi Lucy,

Just butting in again! My oncologist refuses to let his patients use the cold cap treatment because of the reasons you’ve said.

How is your hair growth doing? I am so happy to report my eyebrows have started to grow back and I have teeny, weeny stubby eyelashes on the top lid. I may lose everything again now I’m on the Taxotere but right now it’s so exciting - am I sad or what!

I’m glad you’ve had the diabetes thing sorted out - that’s one less worry for you. You seem to have had a rough time, but you’re nearly through it now.

Take care

Love
Jibby X

Message for all on this post Hello ladies,

Just got back from chemo, my arm is sore as they used the same side again albiet a bit further up this time in the crease of my elbow. I only have one more Epi left this will be on the 4th July (independance day!!), they were a little worried about my red cell blood count as it is a bit low ( i haven’t got a spleen, which helps make red blood cells,long story!) so they were talking about a blood transfusion, i hope not as more needles and i hate the sight of them now.

Thank you for enquiring after me and i hope every one is doing ok and Pauline that you enjoyed your holiday.

Lucy i hope you are alright and that the chemo will soon be over for you.

Once again love and best wishes to you all
Candy.