Dearest All
I am back!
I have just had a quick read through all your posts and thank you so much for all your hand holding, good wishes and hugs it really helps and I began to think you
would all wonder where I was.
Firstly, Lucy I am so glad you got to the final goal on chemo it must be up from now on.
Dilys I am so glad you are okay apart from the mouth and really hope it continues that way for you.
Well I had the chemo Tuesday last and within 3 hours was being as sick as a dog. UGH!! That went on for three and half days, then I couldn’t focus my eyes on anything. So you can imagine I wanted to let you know how I was but just couldn’t risk getting on here and making myself worse.
All seems to have calmed down now and fingers crossed it will stay that way until the next chemo. (When you put it into a few words it seems nothing doesn’t it!).
Lucy your advise about the barley water drink and sherbet lemons came in so very handy thank you although my mouth didn’t get that bad.
Ladies, my question now is does each chemo follow the same pattern? Can I expect to be sick for the first few days on the next one?
Love to you all and again, thanks so much for your support.
All my love
Pauline
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Hi Pauline
So glad to have you back. We have all been so worried about you. Sorry to hear that your were so ill after your chemo but hopefully like you say you should feel ok now until the next one.
You ask if each chemo follows the same pattern. Well I can only speak from my experience and I had 4 AC which I think is similar to FEC and yes I did feel similar after each one. Have you spoken to your oncologist, hospital or chemo nurses about your sickness as they should be able to change your anti sickness medication for next time to make it a bit better for you. Got to be worth a try! The good news is that when I was on taxotere I didn’t feel sick at all and I think generally sickness is less common. Of course it does have other side effects but you won’t know how it will effect you till you get that far.
Dilys, I hope you have had a good day with your cousin.
Love to all
Love Lollie x
Hi Pauline
I am so sorry you were ill, I know what you have gone through, I did have a couple of chemo’s that were semi ok, but you could ask for these tablets ondansetron melts 8mg they melt on the tongue rather than having to swallow them and keep them down and emend aprepitant www.emend is the website they have really helped me, I also take lorazapam the night before and before chemo, I got the ondasetron melts from my GP and the Onc gave me the emend, that is if they are suitable for you, I have not been sick this time at all or last time when I had them feel a little queasy but nothing more. I would contact them before hand and ask about it…
I did go to the hospital today for a check about my boob to make sure it is ok for rads to go ahead it is then promptly cam out of the hospital and my blood count must be down because i just couldnt stop myself from falling over, grazed and bruised but nothing major…
I am glad that you all seem to be ok, I havnt been on here as I have been trying to clear out things and de clutter now chemo is over, think I may have been doing a bit too much though…
anyway Love you all takecare Love Lucy
Hello Pauline
Good to have you back - we can put our worry beads away now!!
Seems a few people are sick with FEC. I had 4 and was right as rain. I then had 4 Taxoterre and was also fine so I feel a bit guilty really!!
Just goes to show how differently we all react to everything from the surgery, chemo and radio, I’ve even been reading about some people’s strong reactions to their hormone therapies and here I am having had Tamoxifen and Arimidex and not gained an ounce or had an aching joint. I’d like to think that gives you some hope!
Let’s hope you are now over the worst with the first round and knowing what to expect takes the awful dread away. Does that make sense?
Best wishes
D
Dear All
Pauline - welcome back! So sorry you were so sick. Like Dahlia I feel a bit guilty really for getting away so light. And Lucy - lovely to have you back! Falling over indeed? Hope you are fine again now. I found the anti nausea drugs wonderful. Next time I will take note of what they were called. But they did say to tell them if it didn’t work as there are all sorts of things out there.
Lollie - yes indeed it was great to see my cousin Carole again. We just chatted and chatted and it was lovely. My only problem now is that the hair loss is starting big time. Every time I go near it with a brush or comb it is coming out. I know it will happen but I am miserable about it. I need my parcel ot head gear ordered from an American website. Anyone know how fast it goes from first bits mising to totally unacceptable? Mine is very fine anyway!
Pauiline I have number two on Thursday week so will let you know if it follows a pattern. In my case I hope so! In the meantine we will be in touch.
Love to all. You are such a lifeline
Dilys
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Dear Pauline Dilys Lollie & Dhalia oh and where is Candy I hope she is ok… hair…I ripped my hair out at the roots and that is the truth it was so painful I couldnt stand it anymore, I think you will know when it is time, I am getting bit’s falling out again, I hope that it isnt because of the delayed chemo, I am supporting a sinead o’cconner style at the moment, harping back to the eighties, hark at me I wish…well perhaps not!!!
Chemo is the worst thing I have ever had to experience and I am so glad that it is over, it just makes you realise when you think that the world is getting you down that stuff really is the pits for some people…mine came on a few hours after the first one and I have never seen so much sick it was horrendous…
my blood is really low today and I should be taking it easy, but now knowing that chemo is over it is so difficult to relax, I just want to get on with things it’s so weird…I hope you all have a lovely day…best wishes for Thursday Dilys, I dont mean this horribly but please don’t take the symptoms of chemo as gospel because it can build up on you and everyone I had was different…
Love to you all Lucy
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Hello all,
Thank you for asking Lucy, yes i am ok now thank you. I have not been on here for a while as i was feeling quite down and anything to do with chemo was making me feel worse.
I’m off for my 5th chemo this morning, they are in the form of tablets, no more needles!!, i’m so glad as my arm is still so sore at the moment.I’m a little worried about the side effects, but anything has to be better than Epi.
Glad to here your chemo has finished Lucy i am so pleased for you. Take care and don’t over do it.
I’m sending my best wishes to you all.
Candy.
Dear Lucy and all
And welcome back Candy. Hope it goes well for you today. I am in the clear until a week tomorrow, which is the next chemo. I am just trying the blind optimism route and hoping that it will be ok again. Weird as my head doesn’t hurt, Lucy, it is just hair drifting away all the time. I could hardly bear to wash it this morning in case it all came off, but it hasn’t yet. So long as it stays there until my turbans arrive! Oh well, I do have the wig and a headscarf in readiness.
Much love to you all
Dilys
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Dear lovely ladies
I feel so lucky to have"met" you all. Within hours of me posting you were all there for me, thank you so much.
Dilys when did your hair loss start? If you remember that web site you found it said about 2 weeks after on that.
If you ordered your parcel from the same place as I did, mine arrived just over 2 weeks after placing the order.
Why not email her, she seems a lovely lady?
Please don’t feel guilty Dilys and Dahlia, I can assure you we are PLEASED you are feeling okay. You really wouldn’t wish the
sickness on your worst enemy! Anyway Dilys you need to stay strong for that lovely husband of yours so it’s good that you do.
Candy hope all goes well today.
Lollie and Lucy thanks for the advise about the sickness I will speak to them next time to see if they will change the tablets.
Finally, I had a thought, you remember the “Three Musketeers” and “The Andrews Sisters”, well I was wondering if we could now become
“The Spice Girls”!!! (I think I will have to be Granny Spice - doesn’t give me much chance with David Beckham does it!!!).
lots lof love to you all and thanks once again for being there.
Pauline
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Would you REALLY want a chance with David Beckham? I don’ think so, all brawn and no brain, like his missus.
Bye for now
Bags I be Scary Spice!
Oh how funny Dahlia I think you and Dilys are wasted with some of the comments you make, you should be a double act I’m sure you would make a fortune at it I was going to say cannon and ball…Ive so got the giggles now…I hope everything has gone ok for you today Candy how many times do you have to have that type of chemo???is it a perm thing? I too have gotten quite down with it all, but now chemo is over I feel a lot lighter about it, just itching to get back to some sort of normal… and it is frustrating with the low blood count especially as the weather has been so nice…
My hair started coming out thick and fast and then when I pulled it it really came out and it was really dry like fire wood…it was such a relief to get rid of it, we didnt have clippers so I just trimmed off the long bits that didnt fall out I was far too embarressed to go to the hair dressers even thought I have been going to him for years I just couldnt go even though he said it was ok to do so…I have been outside with the semi bald head it is quite refreshing especially in this weather but I still cant wait to get back to a full head of hair…when I went to see my consultant yesterday I wore a purple wig that got a few looks I can tell you but it ave everyone a laugh and it is quite nice a bob style…
I am glad that you are feeling a lot better Pauline, you don’t need to suffer it is your right not to be ill even if these drugs do cost a fortune that are better for sickness so dont be afraid to ask for them, I think we have been through enough without having that horrendous sickness and your right I wouldnt wish it on my worst enemy, I really thought I was going to die the forst time i was so ill and had to go to hospital for about 12 hours…
oh well enjpy the lovely weather if you can, I have started to eat all the things I couldnt and it is great, was going to try to loose weight but i just want to indulge at the moment…
Love as always to all of you
Lucy
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Hi Lucy, all
As my sister says “you should be on the stage, sweeping it” or “you should be on the stage and the next one leaves in 5 minutes”.
Instead of the Spice Girls I suppose we could be the BC equivalent of the Zimmers? Now, there’s power. I think we’d probably all like to be in the recording studio when we’re 90 or at the very least being pursued by the cops for “pestering” young men in their thirties - hang on to that image when next having chemo!
Laughter is said to be the best medicine but it’s not always easy to take.
D
Dear All
Oh yes I love the Zimmers! I have now officially stopped wailing over my dry brittle and rapidly vanishing hair. In the end Pauline I ordered from another web site in the States recommended by someone else on here, but hell, if it goes before it arrives then so be it. You are all such darlings how can I be down? Pauline it started yesterday, and the first chemo was 6 July, so that may give you an idea. Mine is very fine anyway, so I expect we are all different. Except however much you have ever cursed your hair you still want it in its rightful place on your head! Husband is a star but still will feel embarrassed to be bald. And Lucy, I know! Going nowhere near my hairdresser! And I love the idea of the purple wig!
Beckham - well may be if he said NOTHING. Shame to be so lovely yet so stupid? Unlike the rest of us of course…
Much love to all and loads of strength
Dilys
And PS thanks for being there!
xxx
Hi Ladies
I wasn’t really interested in David Beckham’s brain Dahlia!!!
Lucy would love to see the purple wig, it sounds great! You go for it girl! I was discussing wigs with a friend of mine and told her I quite fancied shoulder length
as my own hair has not been like that for so long and as she said, go as outrageous as you like, if you can’t do what you want right now you never will!!!
Dahlia, love the “Zimmers” idea, will certainly be thinking of that with next chemo.
love to all
Pauline
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Hello Lucy and all the other ladies,
I went and picked up my tablets for the next round of chemo, Xeloda ( Capecitabine ), I have to have 4 rounds of these in three week intervals ie; 10 tablets for 14 days then a week break then start again. I took my first lot about 30mins ago so keeping my fingers crossed i don’t have any bad side effects.
I made a bit of a fool of myself in the chemo suite today, they said i needed another blood test to check my kidneys were working ok and i burst into tears at the thought of another needle, i have never been so embarrased. I didn’t realise how much they were effecting me!
I’m glad you are feeling better Pauline, being sick is not nice.
I hope everyone else is bearing up, love and best wishes to you all.
Candy
Dearest Dilys
You were obviously typing at the same time as me!
Thanks for the timing on the hair loss. Mine is thick actually (yes, just like me) so I guess it may be different but perhaps I have until the weekend to hang on to my lovely part dyed needing attention own hair!
much love
Pauline
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Dear Candy
Do hope these tablets are okay for you and you have no side effects. Fingers, toes, everything crossed for you.
Don’t worry about embarrasing yourself, I am sure they have seen far, far worse. Sometimes we just can’t control our emotions
with this thing.
(If anyone else posts when I send this, I am not replying!!!)
love to all
Pauline
xxx
Hi Candy
I dont think you need to be embarresed about bursting into tears my God those blood test really get you down especially when they cant get blood out for the veins being so hard…the last time I went I had an indian lady doing it and all mum heard her say from behid the curtain was “veins very hard” and me saying “YES I KNOW”…mum cringed and waited for the explosion as normally they cant get blood but fortunately this lady got it first time, such a relief.
I hope that you on’t get sick with this lot of meds hopefully you wont be…
I got the wig off of ebay Pauline it is called a super model wig or something in a bob style, I just got it because my Consultant had said to me he was disapointed and thought that I would have had a purple or pink wig so I took him at his word…you should have seen his face. I just wanted to put some humour in this horrid situation I dont like being doom nd gloom and that is why it is so nice talking to you ladies as I think we are all on the same wave length more or less…however I hope I am not at Zimmer age yet, probably look like it after all the stress of this…
Love to you all as always, keep smiling and chins up
Lucy
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Dear All
Guess we all get embarrassing these days. I wanted to kill some woman wailing just having a routine blood test a couple of momnths ago. Well.hallo! How bad is a routine blood test normally? It is so lovely having you all back, at all our various stages. It proves it can be done! However ghastly. I was saying to my husband today that I really ant to stop playing this particular game, and he just looked at me. But, Pauline, at least he heard me. Hey ho - let’s get on with it. Hope we are all here giggling at the end. And really hope to meet one day!
Chins up Lucy, as you say.
Much love to all
Dilys
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Hi All
I’ve been out all day today and have only just logged on and see you’ve all been busy with your posts. I had to smile at the thought of the Spice Girls or the Zimmers. Great idea. Also another smile at the thought of you in the purple wig Lucy.
It’s good to hear that everyone is feeling ok. Dilys, I hope your hair hangs on in there until your turbans arrive but I am sure your wig will look fine though. I know what you all mean about not going to your hairdresser. I had been to the same salon for years but I havn’t been back there since i started chemo. They probably think they upset me or something! Since my hair has started growing again I have had it cut by a friend in her home instead.
Love to all.
Love Lollie x