message for Pauline7252

message for Pauline7252

message for Pauline7252 Hi Pauline

I just wanted to check that you are ok? and coping with the operation after math…I was thinking over the past couple of days a lot about you and Dilys and hope she will be back soon to tell us everthing had gone well, of course you get blips along the way but that’s part and parcel of it all to be honest…I felt bad about not being able to give her much support before she went into hospital but i felt so ill, I think I must scare the life out of you 2 about chemo and I’m sorry about that, 2 out of the 4 have been ok and I hope the next 2 will be ok, at least then I stop waffling on about it…

takecare my love
Lucy
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Dear Lucy

Thanks for your post I am really fine after the operation thank you very much.

Like you I keep thinking of Dilys and I do hope everything has gone well for her.

I went for my results yesterday and I have to have FEC and Taxotere
chemo followed by radiotheraphy and a year on Herceptin. I don’t know how many yet as firstly I have to go for a heart test. Oh well obviously in for the long haul!!

Only down side to this is I have to travel quite a way to the hospital for these treatments, not the same one as I had the op.

What chemo treatments are you having?

Reading through the posts about chemo I realise that probably the operation was a walk in the park and the worst is yet to come!!

Don’t worry about scaring the life out of us, I would prefer to know what’s coming, I believe you said in another post that they don’t really prepare you too well.

I was warned about infection and hair loss and must admit the hair loss is a major worry to me as I guess it is to most of us. However, it seems to me that there are probably greater worries with how you feel after the treatment.

Do hope you are feeling okay today, its not so sunny here but still quite nice I hope you are able to enjoy a bit of the decent weather.

keep in touch

lots of love
Pauline
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hi Pauline nice to hear from you Hi Pauline

Firstly I am glad that you are ok, I am sorry to hear that you will require chemo, it isnt very nice, but it seems to be part and parcel for most with this illness¦if Ican do it any one can, I am not a wimp, you can get through it with support from friends and family and the website too¦

I have had to endure 6 FEC, my next will be the 5th¦…I think it is the epibucin that makes me sick, but no everyone is the same some have no symptoms of sickness with it, just other more minor side effects, I cant speak for taxotare as I am not having that, I have read some horrid things though about that on here, but again not everyone is the same¦.I have to have rads but don’t know how many as yet, but that is it for me as I am triple negative as far as I know so I am out in the cold¦…

I don’t want to scare you with it, you just need to go into it positively and think you will be ok, I find it maddening that there seems to be lack of information given as the same questions seem to come up on here time and time again from different people¦…

When you go for treatment I would take someone with you as it may make you feel ill straight away I have read on some posts, mine usually kicks in about 3-5 hours after treatment, I am still finding things out now but they don’t tell you about and things you may want to consider getting in advance

  1. Digital thermometer to keep an eye on your temperature fior infection if you don’t have one, I got mine from Boots for £9.99 it is one that goes under the tongue and is made by Braun but I found them later on in Allaince and made by Allaince Pharmacy for £3.99. I was told If your temp goes over 38 degrees for 2 times within an hour you need to go to hospital.

  2. If you get sick constantly for more than an hour call the helpline day or night don’t be afraid because that is what it is there for, they sent me straight to hospital for treatment and I was seen as an emergency.

  3. I have just been told by the last chemo nurse I had to get movelat gel for my veins, as they have started to harden, I wish I had used it straight from the start, because they have now started to improve since I have been using it on Friday.

  4. try not to mix with people who are ill as you don’t want to get an infection, I was also told not to eat shell fish or live yoghurt or unpasturised things, I did ask about meds and supplements so if you take those you may want to ask your oncologist, they all seem to differ greatly.

  5. if you have pain whilst having it make sure you tell them it is most important.

  6. I try to eat lots of fruit and fish not shellfish though, not always easy oh and get some sherbert lemons for the horrid gloopy tasting mouth, I had trouble getting them but you can get them In Julian Graves.

  7. shampoos and things bathing things they said use things like simple soap and baby shampoo

  8. oh and I get terrible heartburn which is apparently a symptom of fec so I got omeprazal tabs from my doc and onc and if you are sick badly as for injections or ondastron melts that melt on the tonge 8mg they are brilliant as they go straight into the blood stream and are not sicked up apparently they are very expensive but don’t be fobbed off

If there is anything else I can think of I will let you know or if you want to ask if I have the answer then I will tell you.

I did get my wigs before I started the first one was a night mare too fussy so I sent it back and just got a plain short blond bob from wig elegance on Ebay everyone says it looks like real hart and no one bats an eye lid when I’m wearing it it cost £30 with postage I did get some bandanas but people seem to look at those more for some reason, my hair when it started to fall out begain to itch 2 weeks after the 2nd chemo then it got so painful I know it sounds brutal but I just riopped it out at the roots 11 pm one Sunday evening I didn’t have clippers to shave it and I couldn’t stand the pain anymore, it didn’t all come out and has already started to regrow my top eyelashes have also fallen out but I just line the inside rim with black eye liner and I don’t think peole really notice, my brows have just thinned as has other body hair, you do get used to it, I used to cry and feel ugly but it passes I think we are more critical about ourselves than others are.

Yes on a lighter note it had been nice today, did you read that post about dogs giving you breast cancer it gave me the giggles¦.I too hope that Dilys is ok, I only spent 3.5 days in hospital but after you don’t get time to breathe with hospital visits etc, I passed out when I had my final drain removed, that was the horriblist part of my op it was so scary I felt myself going and I just slumped and there was nothing I could do about it¦¦ I laugh about it now I felt so stupid.

Oh well take care Pauline always here if you want a chat

Much love as always
Lucy
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Hi Lucy

Thank you so much for all your information and advice. It is so kind of you to take the time to tell me all this particularly when you are going through such a rough time yourself.

I have had a quick look at the Ebay wig elegance and they do look good. I live right near a wig shop that specialises in wigs for cancer patients but they want £25 just for a consultation and the cheapest wigs seem to be about £130 going right up to £240. Did you get a National Health wig as well?

I know what you mean about we worry more about how we look than other people do but I have always taken a lot of time with my hair and I make up. Glad for the tip about eyeliner when I loose my eye lashes.
I have terrible legs as I suffer with varicose veins so I feel when I loose my hair, I will have top, middle and bottom bits of me that I won’t like!!!

I did read the post about dogs, what will they come up with next!!! It seems we can’t drink, eat, be over weight or keep pets!!!

I hope Dilys is either out of hospital or will be over the weekend. I do feel so sorry for her particularly when her husband is poorly too.

I am going to print out your post and digest it all.

I sometimes have a bit of difficulty getting on line with my laptop, think I am too far away from the connection, so I am sorry I don’t always reply as quickly as I should.

I do hope you have a good weekend and that you feel better than you did this time last week. Once again thank you so much for giving me all that advice, I cannot tell you how much I appreciate it.

lots of love

Pauline
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Hi Pauline

Yes, thank you I do feel better sick wise…there was just a few other things that came to me in bed last night you can’t think of it all at the time…I did get a soft hat to wear in bed as sometimes your head gets cold especially I find this after chemo for some reason, i also get the shivers after Chemo but it has never done me any harm as yet, so I dont worry too much about it unless my temp goes up too much…my breast swells on the op side and goes red and my cheeks too but the onc thinks that may be the steriods…the steriods keep you awake so I was told not to take the after 2pm not that it really helps they still keep you awake, they also make me ravenous and I had begun to put on weight I also have that Chemo bloat look sometimes after the steriods, I keep saying oh my God I look like that Russian Spy that they bumped off…I also get dry gritty feeling eyes from the Chemo after a few days as it seems to dry out your body so I use moisturising eye drops you can get them from Superdrug or Asda for about £3.00 or your onc or GP can prescribe them for you if you get that, my feet for some reason get very dry so I mosturise them with foot balm stuff, I also get cording after a few days again it seems to dry my body out not sure why…they also don’t tell you about day 7-10 you get very low and tearful or I do and I have noticed this as a post on here from others, its where your blood count and bone marrow drop to zilch I think, you feel so tired, I get a sore mouth start so I use Corsodyl for those days you can buy that in the supermarket or get in off the onc or GP, my mouth cracks at the side which is painful I read that that is anemia on NHS Direct so I use Superdrug Lip and cold sore cream about £2.49, I also take sanatogen A-Z Gold for these days I did ask my onc he checked the pot and said it has everthing but the kitchen sink but as they are a good make they are fine, you may want to ask your onc if he has a problem with you taking them or anything else I dont take them all the time just the time I am low if I feel I need them…

I hope I havnt bored you with it but it is better to be prepared I know I wish some had prepared me…the cost is so much of what you need, you dont realise…

oh well better go, dont worry bout getting back to me straight away with things its not a problem, its just if I can help I will…

I too hope Dilys is ok and is at home for weekend its miserable not being in your own home I couldnt wait to get to my own bed…

Have a lovely weekend talk soon, hopefully we will hear from Dilys very soon and I hope my post doesnt scare the life out of her I think she is also very worried about Chemo Bless her…

lots of Love

Lucy…XXXXXXXXXXX

Dear Lucy

Thanks so much for the extra post about what to expect.
I cannot tell you how grateful I am that you have told me all this and you certainly have not bored me.

Like you I really prefer to be prepared and I think if more people were there would be less panic and distress.

The weekend has turned out really miserable with this weather such a shame for people that like to get away.

I hope you are doing okay and hope to hear from you soon.

Much love
Pauline
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Hi Pauline

Nice to hear from you, I thought we might have heard from Dilys by now, I hope that she and her husband are ok…

The weather is horrid and you cant do much when it’s raining like this, it is so boring .nothing much on tv etc…I never thought I would hear myself say this but I will be so glad to get back to work…

I am glad I havn’t bored you, you may not have any problems at all with Chemo some people dont seem to and go to work in between…the more mine has gone on the more tired I have gotten, I suppose it must build up inside you or something… 5 weeks to go and mine will be over, I am so looking forward to be able to eat out again, as I was told not to have take aways or eat out etc…first thing on the menu chinese or pizza…oh and I so love scampi and chips missed that so much…

I always say fore armed is fore warned, I thought I may be ill as I get sick from just having antibiotics for some reason…I have gotten stronger sick meds from my GP for next time ones that melt on the tongue so I dont have to worry about keeping them down, hopefully I wont need them, but I won’t hold my breath either.

The way I have gotten through this is to let everything out and to stop bottling it up, I have laughed, cried, screamed, raged, been positive and negative and at times wanted to curl up and never wake up I have felt so ill, but I look at it as a new beginning and I count myself very lucky so as long as you can come back from being negative you will be fine.

love as always
Lucy
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Hallo Lucy and Pauline Dear Pauline and Lucy

Just a quick post tonight to say I am back. At home at about 4pm today. As you predicted it wasn’t so bad at all. Discomfort more than pain and a real nuisance with the drains. But all done now. Well, the end of the beginning at least. Hospital was fantastic - could not have dreamed of better care. Own room with en suite and a view of City airport, the Dome, Canary Wharf and the London Eye to entertain me. Right now I feel quite perky, and am so so sorry to read about what you are going through with chemo.

I go back on Monday for the wound check and to hear what happens next. Until then I am trying not to think about it too much. But your posts wil certainly stand me in good stead if I do have to have chemo.

Thanks for keeping me in your thoughts, as you are in mind. Going to bed shortly but more in the week. My husband has held up well s far but I think the relief of having me home after all this strain has struck home, as he feels poorly tonight and has already gone to bed. Least I am here now to start caring for him again.

Much love to you both my dear friends and thanks for being there.

Dilys

Welcome Back Dearest Dilys

I am so glad to hear from you and it is lovely to have you back.

It sounds as if you almost had a hotel room how lovely, like you I cannot praise the hospital staff enough. I am sure some people do get bad experiences but they all do such a fantastic job under a lot of pressure and I can only praise them highly.

Have your drains come out? I am so glad you are feeling quite good and hope we didn’t depress you too much with our chemo posts.

Sorry to hear your husband is poorly, but as Lucy says I am sure he will perk up now you are back. You must take great care of each other.

I don’t expect you will feel up to posting much but if I don’t hear from you I wish to well on Monday with your results.

So lovely to have you back, much love and hugs.

Pauline

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Hi Lucy Dear Lucy

Isn’t it lovely to hear from Dilys again and I hope she gets some good results next week.

It’s funny but you don’t think about things like eating out until you can’t do them anymore. I too love Chinese and Pizza so may just make a pig of myself in the next couple of weeks!!! So you see you have helped me yet again!!!

I bet you can’t wait for the next 5 weeks to go, is that the end of your treatment or just the chemo?

I am usually the sort of person that manages to pull myself up when I get too down so as you say, I am sure I will be fine.

Thanks once again for being there.

lots of love
Pauline
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Hallo Pauline and Lucy Dear Lucy and Pauline

Well, day one back has gone ok. I feel fine.Took pain killers this morning just in case but none since then. I refuse to think about Monday when I know, hopefully, what I am in for. I am trying to enjoy feeling ok. One of my dearest friends came over today and we went out for lunch. I had four glasses of wine - haven’t had a drop for ages - and feel just great. Something here about enjoying yourself while you can, I think!

You two are such a support and inspiration to me. Whatever the next few months brings we can face it together. I have learned a lot about my family. A somewhat awe-inspiring sister in law has been an absolute tower of strength to me and her brother (my husband). And my step daughter has been brilliant too. It is quite humbling really. Mind you, on the mean side I think the hospital drame is one thing - when the long haul starts, as you well know Lucy, then you see who cares.

I am still finding that men find it embarrassing. My gay friends have no problem but most men can’t even say the word breast! Leave alone cancer! They will get there eventually. I find myself worrying about poor men who have this thing. How on earth do they cope?

How are you both today? Hope all is well. I am so pleased to know you both. When they get the private messaging service going we must get in touch and meet up!!

Much love

Dilys

Pauline & Dilys Dear Dilys & Pauline

Hello to you both I am glad that you are both ok and yes I am glad that Dilys is back too…I did start a new post think you must have missed it…but hey we are here now…

Yes i will be here for you both if you need me, if you want to ask anything please feel free to do so and yes it will be nice when the messaging service starts and I’d like to meet up once we are all better…we are all going to be fine and we are all going to come through this no matter how long it takes.

I looked in the mirror today and thought oh my god my hair has started to look like stan laurel, but at least it is growing after a fashion so thats something I guess…

yes you really do find out who your friends are once it starts especially if you are having a tough time on chemo…my family have learned to just take it in there stride now as I scream and shout and say I am not having it any more as I have been so ill with it, but they know I am just letting off steam and anger…

I feel sort of ok today, the longer the chemo goes on the more tired I have become, I dont mind as they say when you sleep you heal…

Yes just 2 more chemos to go I don’t know how I have mustered up the strength for it but you get it from some where…I cant wait my last one will be on my mums birthday the 29th June of all things…

I am so looking forward to be able to eat chinese food not long after that…and yes I would eat all the things you like now as they taste different once chemo starts somethings taste disgusting and there are limitations what you can eat i.e takeaways but no one told me about that until I actually asked which is daft as the last thing I would want to get is food poisoning it could possibly kill you on chemo…

Its funny how you feel great after the operation I went out the week after and everyone said they wouldnt even know that I had had an operation let alone breast cancer, weird they still say I look great on chemo I wish I felt great…

oh well glad you are both ok and look forward to hearing from you real soon, remember to keep smiling and keep your chins up I know it can be hard but try to stay as positive as you are now.

Love as always
Lucy
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Sorry Pauline you asked me if my treatment was finished, I dont think so I think I have to have rads after chemo because although I didnt have Lymph node involvement I am triple negative which isnt good as far as I know and because I am only 41 and breast and bowel cancer seem to run prodominantely in my family they said they will chuck the book at me with treatment…so I will be here for a while yet…
Love Lucy
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Dear Dilys and Lucy

Great to hear from you both, like you Dilys I am trying to enjoy a few things whilst I can, I think its the only way to deal with this! Each step at a time and if you get a chance to enjoy yourself in between go for it!

I did see your new post Lucy, but thought I would leave that for Dilys to read before I joined in!!

Wouldn’t it be lovely to all meet after we have conquered this. I believe you two are both in London, I am in Sandhurst, Berkshire, but Dilys it could be on your way next time you go to Bognor!

There is another site called bcpals where I believe you can actually have direct contact, I haven’t been there myself yet so don’t know exactly how it works.

Sorry to hear you will probably have to have rads too Lucy, although it would seem that it is no where near as bad as Chemo, only think you have to go every day which is probably a bit of a nuisance. My father had cancer of the liver and although I have mentioned this to various medical people, no one appears to have taken much notice. We have no breast cancer in the family though.

I hope we can all enjoy the weekend and fingers crossed for some better weather.

love to you both

Pauline

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hello Dear Dilys & Pauline

Hope that you are both ok - I dont blame you for ejoying yourself now It seems a never ending road with the chemo so near yet so far…I have a terrible thirst with it this time, I am going to ask why next Friday on the day of my next poisoning as I call it…

I did think of another thing you may want to get a soft bristle tooth brush as your teeth and mouth get quite sensitive and some people seem to get sores and ulcers, but that is one thing touch wood I havnt had the sores and ulcers…

Yes I would like to meet I live near to Heathrow so I am sort of in the middle of you both really, my partners mother lives in Cookham in Maidenhead so we often go there, not sure if that is near to you Pauline. I know Berkshire is a big place.

Yes as far as I understand there are only certain types of cancer that are linked to Breast cancer and I think bowel cancer is one of them, because when I asked about Lung cancer I was met with the same response as you and then the onc explained.

Yes we are hoping to go to a boot sale on Sunday just for a look round as next weekend i expect i will be looking at the bottom of a bowl again…so I have to get out while I can.

Have a lovely weekend both and takecare

Love and hugs as always
Lucy

Hallo Pauline and Lucy Dear Pauline and Lucy

Yes we will defintely have to meet up when we are through this thing. As you probably gathered I am in East London so we are fairly scattered, but that won’t stand in our way. I am still feeing a bit guilty about feeling so well at the moment. Sounds as if it is par for the course. And still not thinking aout Monday until I have to. I am pretty strong but as you know everything I hear about chemo scares me to death. May be I will avoid it. Just keeping everything crossed

Have been doing normal things today like going to Tesco, filling the car with petrol etc. It is nice to be out in the world again. Just so sorry for what you are going through.

Much love to you both

Dilys

Dear Dilys

Best wishes for Monday, I hope everything goes well for you, let us know how you get on…It is pretty scary getting results, but no more than being told you have cancer, I sat in the hospital and just cried…I cried again with relief when I got my results.

I too hope you can avoid chemo, but if they offer it to you then don’t be scared of it Dilys, you may well be one of the lucky ones and have minimal no side effects, not everyone is the same …I think my case is extreme, but I have gotten through it so far and still bracing myself for the last 2, I sometimes wonder how I have got this far with it but I know it is for the best, if I can get through it so can you , me and Pauline will be here for you, you can do it my love…I will be so relieved on the 29th June as that is my last one…the thing that I hate other than the sickness for me is you get funny smells and I get the smell of Lilos of all things and that makes me feel sick. Don’t ask me why lilos,weird.

oh well have a lovely weekend

love
Lucy
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Hi Lucy Dear Lucy

I think you are one of the bravest people I have ever come across. And you have been a tower of strength to me and I am sure to Pauline and others as well. I am just going to enjoy the weekend and see what happens next. Incidentally what does triple negative mean? You mentioned it a few posts ago. I was told I was strongly oestrogen positive but have no idea if it is the same thing or indeed what it means at al!

Just had a lovely afternoon. A friend came round and finally showed me his wedding photos from many years ago. Fascinating. His father was a Yeoman Guard in the Tower of London and his wedding was held there. Bit posher than mine in Plaistow Register Office! People are endlessly kind, are they not? I keep trying to imagine coping with all this without the internet and e-mail, and it would be bleak I think. I only got the computer at home last August and am so glad I did. Where I work we have offices in 109 countries and as news spreads I am being inundated with messages from all parts of the world. It is enough to make you weep, but much appreciated.

Lucy I hope you aren’t feeling too bad now and that you can enjoy the weekend. Did you find out any more about your job? Is that all ok now?

Much love to you both

Dilys

Hi Dilys

I am glad that I can help you and Pauline through it, I don’t know if I’m brave, like everyone you don’t have much choice. but to get on with it, I do try to look on the positive side and I don’t like to be moaning about it , some people seem to have the world on there shoulders about it ,I have it I have to get on with it the best I can it does you no good to keep being down and negative or that is my thinking…

I am triple neg which means I have a greater risk of recurrance within the first 2 years and there is no further treatment for me as far as I know other than rads, where people have herceptin or tamoxifen those are not suitable for me…

thats nice about the people at work from other countries…I don’t really care about my work at the moment I did ask them what was going on and they tried to re assure me, but there are more important thiongs in life Dilys like kicking this up the butt…

yes computers are great they are full of knowledge and it is nice to be able to come on here I think if I had had this years ago like my dads auntie I would have gone nuts with it…

I feel sort of ok now but it is next Friday I have another poisoning it seems to have come round really quickly this time I suppose because I spent about 4 days being sick…

oh well I feel tired now going to bed soon

love to both of you
Lucy
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