Darling buddies from May - moving on

[peacock]

Lisa good luck with your market stall tomorrow, hope you sell loads. When are you going to NY? Hope your wobbliness and shakiness is down to carrying the table.   You should go easy, maybe wear your sleeve when you do this?

Lily I think you might be right, as the problem with my arms is movement, or lack of it!   I never lift anything more than 2 kilos, and avoid repetitive movements as much as possible, general housework like hoovering andwashing the tiled floor can take a long time but I have just bought a very lightweight steamer - Vax - which makes the job much easier.   I can't manage the whole house on the same day though and have to do jobs on different days.  I will ask about physio when I go back to see the dr in 3 weeks.  The patches I've been given are  "lidocaine" so not as strong as the opioid ones like Fentanyl.  I would just like to be able to use my arms properly again.

I have news of a baby girl, she was born at 11 am today, weighed 7lbs 11ozs and is called Lily Hoa Le (her Mum is Vietnamese).  I've seen a photo and she looks lovely, so want to give her a cuddle!

Went for my walk today, I have to do it before 11oc French time as otherwise it is too hot. I've got to the stage where I MUST do it or I feel restless all day. Endorphins I think it's called lol. This afternoon I had a swim too, so keeping up some exercise while the weather allows, it's been lovely.

Well that's my day, hope you've all had a nice day and Nicky, especially hope you're on the up.

Love Carole xx

[lisaf]

Oooopps my post wouldn't go last night, site crashed I think. Well market was a waste of time today, didn't even cover my costs, wasn't advertised to well so wasn't many people around apart from people passing by. Hope everyone else is okay, I'm aching from standing for 7 hrs. Need to get fit lol!!! Well oh expert Lily, today and yest throat felt raw, still burping but now have a furry yellow tongue.... Would acid do this?!

So, on a better note who's watching xfactor? Can't believe the auditions are finished already 😞

[lisaf]

RHi, thanks Nicky, must try that, think my mind just in overdrive, pain round side isn't as bad right under boob and constantly prodding and poking to see if anything swelled, cough is more just if something catches in throat then sets it off but god awful taste in mouth when make up and cathar and burping so hoping it's just acid but scared to go docs as ever. Very strange thing I notices one side of my extremely fat tummy goes in then and then then bounces out when I use my muscle so either my right side is swollen or it's the muscle missing from my recon, never noticed it before lol!!!

Nicky, hope you aren't too hot with this weather as it's quite sticky. Are you planning to do anything over weekend, hope you manage some fresh air and can enjoy some time feeling a bit brighter.

Lily, weekend yippee. Oh your words are so wise!!!! I think you've missed your calling, you have and get so much knowledge.
Carole, that walk puts me to shame. Lily is right, I actually think my arms swollen a little from a knock in the hot tub at my friends he other week. I'm not as careful as I used to be but I still try not to carry bags with my right arm, I don't wear jewellery on that arm either. Lily's right again best thing is swimming, which is ideal for you with your lovely pool.

so what's everyone got planned for the weekend. I'm a bit shaky and I don't know wether it's worry or a great big portable table I carried down two flights of stairs and then up one into my car lol, wow I'm unfit. I've been keeping busy, our town has a market which has really had it's day so they are trying some local business markets so I have a stall tomorrow (fingers crossed for weather ) and mam and Sophie coming to help so fingers crossed it goes okay as has to even marketed great, could do with some funds to pay off so e of New York, gulp!!!

Have a lovely weekend all and hope the sun shines. Love Mona Lisa xxx

[Lily200]

Hi everyone, hope we will all be having a nice weekend at last, especially Nicky. Carole do you think the doc misunderstood the problem because those patches sound like the ones they have for severe pain. I would think physio or something like that is needed to release the area. Can you try gentle movement to gradually release it over time. When I snapped the ligaments in my ankle, they continued to improve for years as the amount I could bend it backwards gradually increased from just gentle stretches. I was told that anyone who has had our surgery is advised not to do repetitive movements like windows, cleaning baths, definitely not hover mowers and not carrying anything at all heavy or you trigger lymphoedema. Crazy because I know it has to be done but when you have just gone for more surgery, you may be rushing yourself. Can I persuade you to slow down and use the arms less, it might help? If not at least you enjoyed yourself more 🙂  Think about how much you have had done in such a short space of time, it must take time to settle after that. I know I would be impatient but I don't clean windows or mow because they told me I could not get rid of it if it started. We have to be kind to 'battered bodies'. It was a sports event that had a number of my students involved, so went to support them as they got prizes. Nice evening but a rush to get home, eat and be back through the rush hour again. I think swimming might help you more than patches. Nicky let us know what you get up to. Good luck. Lily xx

[peacock]

Just a quiet day for me as usual, went for my 2km walk with Heidi, who loves to sniff far too much when I just want to keep walking! Then did some housework, washing and all the mundane stuff. This afternoon I had a swim, so hope all my activity is a sign of better times. Weather glorious.

The pain dr appt went ok, he thinks I have nerve damage caused by bilateral mastectomy and node removal. He's given me patches to wear, but as I don't really have pain, more discomfort when trying to make normal movements with my arms, like hanging washing out, hoovering and cleaning windows is so uncomfortable. Anyway, have to go back in 3 weeks.

Lily, how was the do? And what was it?

Nicky, hope the weather is good for you this weekend to enjoy some outside moments. Are you now on the "up" from chemo? Take it easy if your body needs you to.

Lisa what are you up to this weekend?

Hope the weather is good for you all, enjoy the weekend xxx

[nicky08]

Thanks ladies
I forgot to say in my last post about a short thread you would love in the secondaries section, Lisa. It was about treatment for a slight cough and one of the ladies has been recommended to have dark chocolate as it's meant to be very effective 😉 Right up your street LOL. Giving it a go myself for the sore mouth as another lady said how that it helped her as well with the soreness. All in the interests of medical science I think. All joking aside I hope you are not too worried as we all know how these things plague you and that it goes soon so you have one less thing to trouble you.
Have a good weekend everyone, hope that mine is better than last weekend, which wouldn't be too difficult!
Nicky x

[lisaf]

Will post tomoz but welcome back to the land of the living Nicky, hope you have some good days before the next one xxx

[peacock]

Hi will post tomorrow xx

[Lily200]

Hi all. Nick I had replied with a pm before reading this. So ditto xxxx

Lisa yes on my way back to work now for a do

Good luck Carole. keep us posted

Lily xx

[nicky08]

Hi ladies
Well I'm back in the land of the living, at least for a while until the next round hits me! I'm on antibiotics for a tooth problem and the pain from that kept me awake all night the other night so not a happy bunny at all. I'm prepared for next time though and have been keeping a diary so will know the low points and the better days and have the right medications in to help. I know that docetaxol is a really tough chemo and how the tiredness really gets to you, as well as all the other aches and pains you get - so different from FEC! We'll see how I get on but have got the first one out of the way and by the next one I'll be a third through so trying to be positive about that. Plus I know you get extra aches etc on your first Herceptin let alone adding Perjeta into the mix so all in all not surprised. Any other tips you ex-Tax ladies can tell me will be gratefully received and don't worry about scaring me I did enough research to know what ones to expect, just hadn't expected mouth to be as bad but the iced mouth will be featured next time! Also I did have a low wbc on FEC and had the blood boosting injections so fully expecting to be on those at some point onwards and I also got infections so, again, expecting to be on antibiotics some of the time. Brings it all back doesn't it?
Anyway, enough about me. Hope all is well with all of you. Have read your posts and it sounds like everyone is doing ok. Carole, definitely use the counsellor, I'm sure it will help.
Bye for now
Nicky x

[lisaf]

Hi all, won't twine today so just big hugs to Nicky, hope the tiredness is easing off a little and your getting plenty of rest, sounds like dvd's and duvet days ?!?!!!
Good luck Carole, sound,like your arm is playing up...

Lily, are you settled back into work yet?' X

[Lily200]

Hi everyone. Good luck tomorrow Carole, let us know how you get on. Nicky thanks for the pm and hoping these blasted effects move very soon. My consolation for you, is that the bc must be having it even worse. Snuggle up on the sofa and fuss yourself, even better get the family to do it. You are quite entitled to be a  princess at times like this. Big hugs Lily x

[peacock]

Nicky, two things I forgot to mention on tax.

Runny nose, streaming all the time and I wore the cold mitts which may have helped my nails, can you ask for these?

Lily, it sounds like you've got your decorating head on, what a helpful son you have doing the painting.

I'm off to see the pain doc tomorrow, have started doing my 2k walks again, also managed a swim today as weather still good. Xxxx

[Lily200]

Hi everyone. Well it took me back with your posts about chemo and all the side effects we struggled through. Hopefully one day they will be able to maximise effects and minimise trauma to the patients. I think until then we have to focus on the success or extra stability and benefit it brought. The cost in side effects is worth battling through for the hope and extra time they give. We wouldn't do anything else. Nicky are you up out the black hole yet? Any nice things planned for the weekend coming, you definitely deserve some fun.

Lisa sorry to hear your worries have been started up again by your cough and aches. You regularly get coughs, I think it may be an after effect of the whooping cough too. If its reflux/acid cough, try taking a remedy each night for a while and see if it improves. Remember the rule to wait 2 weeks for a new ache. If it goes in this time, it is just a normal one. Try not to overthink it. Hugs x.

Carol lovely tohear from you. How many visitors did you have altogether? We missed hearing your news.Good advice, you gave Lisa 🙂 My sleepless nights are just my insomnia, probably not going to change now! At least I get a lot done in a day, that's the bonus.The downside is dark shadows under the eyes. The mummies are keeping well. 8 weeks until the next is due but she has a a very solid big bump as she has had all quite big babies. We all expect number 3 to be bigger but we will see as it depends when he decides to arrive. Great idea for the online name, I love it. Let us know when you hear your happy baby news from your nephew. I don't think I ever had a scan late enough to be told what it was. Part of the fun is guessing I think.. I was surprised that you got novaldex, you have probably forgotten that was the brand I insisted on after hearing it had minimal effects. It is not available in the UK, they all get cheap generic brands. I had almost no flushes on it, because it has a higher quality outer coating but the same drug inside. Mind you I haven't had flushes on femara either, so maybe that's more me than the tablets. You must keep them up because you had a tricky bc and had so long in the little hospital before they worked it out and sent you to the bigger unit. It gives something like 15 years protection after you stop, they say. My friend cannot move to an AI either because she has a history of osteoporosis  starting. I hope the counsellor is helpful and also the pain person. Sorry I knew you had lymphoedema but not that it was painful as well. best of luck for some improvement for both conditions. Hi to Bev. I am really enjoying being back at work, with so many lovley children this year. Not all of course!! That's part of the job but they all eventually grow up and become easier to persuade to think of their future. Son has painted the rendered part of our house and it looks so nice. Only thing is it has made me think about painting other things or decorating rooms! Take care all love Lily xxxxxxxxxxxx

[peacock]

Hi ladies, here I am, back to normal now, quite a lot to say but first will reply to the last few posts from you all:

Lisa, anyone who has had a cancer has every reason to be worried about the slightest twinge, cough, breathlessness etc. etc.   Stress also causes a lot of inner problems, keep looking forward to the next break away and good luck with the dieting, it’s a constant battle for us ladies isn’t it.   The weather is still hot and sunny, I would go so far as to say it is better now than in July and August.

Lily, you’ve given Nicky some good Auntie Lily advice, to keep talking especially to those who understand.   Did I miss why you are having sleepless nights?   How are all the Mum’s to be doing?  I think Pilchard would be a good online nickname, after little chap, smiler, tiny and baby.  My nephew’s new wife is due today so looks like they’ll be having a late arrival, they already know it is to be a girl.   I never wanted to know myself, but had “feelings” and was right each time.

Nicky, poor you I do feel for you so, and sorry not to have been much support so far.   I had 6 rounds of tax myself, without wanting to stress you too much, it can build up and have a cumulative effect.   I was meant to have 8 but my poor body had taken enough poison by 6.   I bought some clear nail varnish, designed to protect the nails and I must say that during chemo my nails were probably the best they have ever been!   I recall feeling ok for 2 days after tax, then it hit me for the next 6 days with aches and pains, extreme tiredness like a constant flu feeling.  I also had to have the injection – Neulasta (if I remember correctly) as I was hit by urine and kidney infections, so the jab boosted up my blood cells.   I was given a prescription mouthwash for the ulcers which helped.   I also had dreadful tummies, diarrheal and  very explosive wind – so batten down the hatches lol.   I also sucked on ice cubes during chemo which I think helped as I didn’t have too many ulcers.

I saw my Oncologist registrar last week at my request because of asking if I could stop tamoxifen and change to an AI.   It seems that I have always been on generic brands of tamox for 2 years, so as we both agreed it could be what is making me feel depressed he changed it to Nolvadex which is tamox but the original non generic one.   He doesn’t want me to stop tamox as he feels it is better for me to stay on it.   As for the depression, I’m a little better but probably because the summer has been so busy, so he is sending me off to see a counsellor who specialises in cancer patients with depression.   On Thursday I have an appointment to see a pain specialist as my arms just won’t move like they used to, hanging out my washing is a difficult thing.   I’ve also been breathless after just a little exercise and coughing a bit.   Like Lisa I’m trying not to worry as it could just be my reflux playing up.

Last week we did a quick trip across the water to see my Mum who is 88 next month.   It was a tiring trip,10 hours driving, a ferry trip from Calais to Dover and then returned on Saturday to do it all again.

YD here for another week and then back to Uni.

Hope I haven’t missed too much in the last few weeks, I will pop in more now.

Love Carole xx

[lisaf]

Nicky I think I painted my nails black too as can give you problems, however I can remember my hair started growing back on tax too so you never know!!! Sounds like hell which hopefully means it's doing it's job xxx

I'm feeling bit jittery god knows why, wee cough not much but a tightening around throat and a bit of wind and tightness round back and boob, I'm hoping it's all just down too far too much weight especially the back and boob with this damn prothesis....but once that worry sits in I can't relax, I did get liver checked a while ago prob half of it due to stressing too much about anything and everything.... However, I really can't moan with what you are dealing with Nicky..... I think I got a little more energy back before next one so hopefully something to look forward too x. Twine over, Nicky pinnapple I used to have, apparently it helps stop the ulcers and manuka honey, don't know if they worked but I didn't get any infections or ulcers. And meringues lol, detox and diet today wish I didn't say that, will be dreaming of them x

Hope everyone else doing okay

[Lily200]

Hi everyone. I think it helps talking to people who understand but also talking to people on the same chemo can be reassuring for different reasons. Have you thought about joining a thread on your chemo Nick?  Nice to know that what happening to you is normal or just to feel not so alone in this part. That's what got me, everyone's lovely and kind but the needle always has one name on it 😞   You all helped me through it. People at work just seemed to be a million miles away on another planet.  I used to just look at the one next thing I was going to do and ignore the big picture and quite often it was a very nice day next 🙂 The family are why we keep going but you have to do the old brave face most of the time for the kids. Good for you Nicky, I used to do the same and let it all out to Victor. He hated it but let me say all the things I never could to my mum or the kids. Did we ever find that big field where we could just scream really loudly and let it all out? Have you painted your nails a dark colour? Don't forget please.

Its good to be planning for number 2 because getting things under control by knowing what to expect is how we make things manageable. Lovley to have YD back and I'm sure she will distract you. Are you feeling better now? About how many days were tough? Hopefully you are almost out of this one and can get out to do some nice things, do you think?The weather is good. Howabout a trip to the coast? The sea air will do you the power of good. Or meringues 😉  Why are you apologising, you helped me tons and still do!! Chose hmmmmm tricky little word that one lol. No I couldn't have worked at all, especially when I had the terrible runs on the cmf. Would never had made it from toilet to toilet to get to work 😉 Anyway the really good thing is that you had the first dose, it is doing its worst to the bc but you were able to tolerate it. It being the best and latest wonder treatment available. Get planning for good days and get planning to be ready for crud side effects and see how many you can minmise or avoid next time.  Cheering you on from the sidelines as always buddy love Lily xxxxxxxxxxxxxxx

Lisa glad to hear the sun found its way to you. Makes such a difference. When do you go to the hospital again to talk about surgery? I can't believe you ahve had so much. Wish you could just come down here for a week as we have a seriously top plastic/onco/bc chap in the recon unit. My friends are so pleased with their recons. Might it be worth going to a bigger unit for a final sort out? Hate to think of you going through it. Better buzz off for another restless night for me. I sympathise with that Nick, so annoying Lily xxx

[nicky08]

Yes, Lisa - you nailed it!  It really has been cr@p!  So different to the SEs from FEC and they have caught me unawares. I'm hoping to be prepared next time and have a long list of things I need from pharmacy to help me if the other precauntionary things like sucking ice lollies etc don't help.

A rather sleepless night last nigh which was sooo annoying so woke up feeling very sorry for myself   OH went in late to work to give me a bit of moral support and YD is back from her short break earlier this afternoon so at least I'm being looked after.

I think in 2008 when we all went through chemo I must really have had my head in the sand - I apologise now.  I thought we'd all had FEC other than Lily who 'chose' to have the longest chemo regime ever.  Can't remember that some of us had Tax so also don't remember the different side effects and timings of them.  I just knew with FEC that I felt rotten for about 5 days and then had the remaining 15 or so feeling pretty OK and went back to work in that time.  I defitely couldn't be working on this regime, its floored me.  I suppose I wasn't expecting the sudden drop in energy levels and the extra aches/pains/mouth problems. Live and learn!

Certainly less exhausted though so I hope to have a week and a bit before we start all over again with hair due to be a-falling in a week or so as well! Hmmmmm.

Take care all, have some fun for me!

Nicky xx

[lisaf]

Oh poor you Nicky sounds like crap, I can't remember what I done to help tax chemo, I think I had to go with flow as it was more aches and pains that drive you bonkers! I can't remember mouthwash, it could have been corsydoll but I know there was one type you couldn't have, épée ugh mouth ulcers poor you the puts I imagine, hopefully you pic up and have a few nicer days xxx

Lily hope your settled back in work, Bev how you doing? Carole how's the weather? Been lovely here today for a change xxxx

[Lily200]

Hi hang in there. We mostly found the first of anything new knocked us for 6. Then often on later ones it wasn't such a shock to the system. How you felt on the day seemed to have an impact too, especially with the worry over reactions and if your heart would be affected. I think that going in more reassured and confident next time, will help. Crikey I can hardly sleep at all, what a pair! I spent the whole night dreaming I was talking to md about baby names and woke up wondering why she didn't seem to like the name 'pilchard'!!!! Where the heck did that come from. Poor little kid, Nanna wanted me to be called pilchard lol. Love Lily xxx

[nicky08]

Hi Lily. That's a good idea about the flask and cold drink and ice. I was thinking of making up some flavoured ice cubes and you've now just given me an idea of how I can take them into the hospital!
Must admit I had a really cr@p day yesterday. Felt sooooooo exhausted that slept for four hours in the afternoon and then went to bed early and slept another 12! Hoping that I pick up a bit soon. On FEC I used to feel really rubbish for 5 days then bounce back. No such luck with this. But I did feel OK for the first 5 or 6 days which I have to keep reminding myself about. The low point for wbc is days 5-9 so I'd imagine this is why I feel so shattered, didn't get that at all on FEC so it's all a new learning curve that I will work around for the next cycles, I hope!
Have a good weekend everyone.
Nicky x

[Lily200]

Hi,Nicky I hope the weekend turns out better than you think. I have not tried a taxane but vaguely remember e/cmf side effects just vanishing when i woke up, so hopefully this will happen to you. Joanne on our original  thread discovered the lolly thing 6 years ago. If lollies are tricky to organise how about an insulated cup with a drink and ice cubes in. Alternatively putting a bottle of whatever you like to drink in the freezer/fridge on the night before.I find those macdonalds drinks stay cold for ages too. I saw a suggestion of swooshing small ice chips around your mouth to ease ulcers. I guess you would smash ice cubes in a bag to get them.Still can@t remember the name,so annoying. Must be almost over for this time now. Hugs xxx

What's everyone else up to? I am doing the usual food shop, visit mum and then some baby item shopping with md 🙂 I am likely to get a bit carried away ha ha. Victor just groaned when I told him lol.

Love to all Lily xxxxx

[nicky08]

Thanks Lily. Last time I didn't have any problems with mouth ulcers or thrush, which I've seen mentioned, so have no idea what's on offer from the NHS medicine cabinet! However I now have a long shopping list of possible things to help with the side effects for next time. It's interesting you mentioned the lollies as I have never understood why sucking a lolly might help. However, somewhere else on this helpful forum equated it to having the cold cap for keeping hair. By cooling the mouth whilst the chemo goes in it helps protect the cells. It's worth a shot! So it will be an insulated bag full of flavoured ice cubes for me, or a lolly next time. I don't think our hospital give them out but I know others do so I shall choose something I like.
Have a good weekend, not sure mine will be as good but I'm still learning on this new chemo regime about my good days and my not so good days.
Nicky x

[Lily200]

Someone - what was the name of that blasted bright green mouthwash we were given by the hospital for ulcers and to prevent thrush from the chemo? That's what I'm trying to remember to help Nick.

Lily x

[Lily200]

Hi everyone. Carole where are you? bev are you ok? Lisa have you made your niece some jewellery for her birthday or bought something else she wanted? Have fun. Nicky bloody chemo ehh. You know you need it, may even want to have it but in those days down the dark hole, its totally crap 😞 Good girl being so brave but moan moan away about the side effects. Have you tried iglu, where it coats over the ulcer? Like you I don't get them so can't speak from experience but it looked good on the advert. Don't forget the ice lollies to freeze your tongue on the chemo day. Really hope this part doesn't hang around because it sounds horrible. Hugs Lily x

[nicky08]

Thanks ladies. Aches now moving on but bad mouth ulcers:-( Never suffered with these either with or without chemo so not a happy bunny. Will be checking out anything I can get on prescription for next time. Otherwise just fine !
Nicky x
Ps Lily, have discovered that the email alert for a PM is now going into my junk/spam folder for some reason even though it used to go in my inbox and even after I moved one message into my inbox, it still sent the last one to 'spam' Will now be checking in there before I do my 'delete all'!

[lisaf]

Oh no poor you Nicky, is it the tax clan of chemo, I can remember those awful aches sometimes I wished for the sicky option back, hope your having loads of rest and being spoilt, just think in few days they should be wearing off, like to say those damn steroids mean you miss your kip for a few days. Big hugs

Hope everyone else doing oaky, I've just been really busy at work and off to nieces birthday party tomorrow. Back at hospital on 17th re plastic surgeon, think I need another op still wearing prothesis after op number 4 with them, as per they will mange to blame my weight I'm sure 😞

Take care will pop in tomorrow for a longer chat xxx happy back to work Lily x Carole have you recovered from all your visitors? ? Bev, have you recovered from your booby party ? Xxx

[Lily200]

ps Nick I saent another pm

[Lily200]

Hi everyone, what are you all up to? Nicky I guessed this one would hit you differently but as you say there's no benefit in thinking about it all, just makes extra worry. On the positives, your heart has coped with the 3 drugs and you haven't had an allergic reaction to any of them so that's a real relief. It would have been so disappointing if you hadn't been able to cope with the drugs, after all the effort to get back on some treatment. Probably not a consolation when you feel crap and I really don't like the sound of those aches and pains, poor you! Do any of the painkillers help to relieve it? Regarding the steroids, I seem to remember the effect of them wore off or got much less noticeable in later doses. My first go I was awake for 48 hours but never got it as badly again. How is the nausea? If you don't get it,., they may reduce the steroids slightly in later doses. Do you remember they made me lose my sight, well my focus for 2-3 days I could only see through a foggy cloud, horrible things. I think wimbledon was on at the time and I couldn't even see the ball! Bizarre. I have a good feeling about this treatment and that it is going to be worth the torture now. Hoping the bad days are not too many and then you know what to do - plan lots of things for the good days on the next cycle. Hang in there love Lily xxxx

ps I consider myself fortunate going to work after hearing about digging the garden with a fork. Hugs x

[nicky08]

Hi buddies
As expected the SEs take on a different pattern to the ones I had on FEC so, having got off lightly for the first few days I'm now really feeling the aches and pains. Ouch. Will be keeping an eye on what does develop over the first cycle so I know to be prepared for the second one, and all the others after that 😞 V tired but that could be something to do with the steroids not letting you sleep for 3 to 4 days as well as I hope the chemo killing the little uggers.
Hope you are all doing ok and getting some of the lovely sunny weather that has been appearing later in the day, sorry you're back at work though Lily, at least its. It horrible and cold and wet though.
Nicky x

[lisaf]

Will catch up tomorrow been a bit hectic, love to Nicky xx

[Lily200]

Hi everyone. A bit quiet on here. Nicky I sent you a pm, hoping to hear very soon that you are on the way up. Take care and fuss yourself a lot, that's an order. Not much to report except back at work and that dratted alarm is sooooo early I could smash it on the head. I have started Christmas shopping. Sorry for mentioning that word! love Lily xx

[Lily200]

Hi everyone. Bev that sounds like an amazing day and I would have cried too. Parrot cosume!! You old bird lol. I bet you laughed your head off trying to put it on. Well done and long may it last. It was our grandson's naming day on that sunday too, so I was joining you in a happy family day and sun!

I am grrr that the weather is supposed to be nice just as I go back to work. I still have quite a tan and very brown feet for some reason! No its not mud;) Its been a nice quiet weekend, so plenty of time to get organised for the major shock of having to get up tomorrow morning arggh. Yesterday ED and I went down to the coast and had a quiet but lovely day, just the 2 of us and then she stayed over as her partner was away. That's probably our last 'just us' time with the baby due but that will be even more fun. We had been out to dinner on the previous evening and Victor had raided my purse as he wanted cash, promising to hand some over when we got home. I had got a stash out for the trip the next morning. It didn't occur to me that he hadn't given it back until I was happily eating my lunch, which cost a lot more than the coins I had in my purse plus drinks, etc. Bit of a panic moment as they didn't used to take cards but thankfully now do. Otherwise, I would either be writing this from jail for killing Victor or from the cafe kitchen washing up to pay the bill lol.   Nicky thinking of you buddy as I think this might have been a bit of a grim weekend. Hoping to hear you are on the way back up out of the dark hole. Love to all Lily xxxxxxxxxx

[Motherhubbard]

Sorry been away but after all clear on mammogram for two years got ready for the family and friends boobie BBQ. It went really well last Sunday and we choose the best day if the weekend, it was my oh, our two sons and their girlfriends then seven really close friends so lovely day. My two sons always say that I dance like a PAROTT so half way thro and a few drinks later I dressed up in a full PAROTT costume which went down a storm and suddenly I felt like I was back, strange but true. My youngest son gave me a plaque from him and his brother saying " just remember you are alway loved". That's started the tears. I still enjoy reading all the posts and looking at a lot of you ladies I think that I have got away lightly and for this you have my greatest thoughts. Kind wishes and love to all have a great week. Bev

[Lily200]

Hi everyone. I am loving the wiggo talk, takes me back to a tough time, made so much better by all the buddies and our insane tongue in cheek humour. My favourites were Nicky test driving her wig in the mg to see how fast she could go without it blowing off her head. Lisa and I planning to shave our dogs and pinch their hair and many more. I had quite a few 'for those who enter the bathroom in fear' tales. So Nick you will have to let us know when you want us to take the ... and when to be soothing and sympathetic. I wouldn't like to get it the wrong way round 😞  I laughed and did actually do the Boysy voice in my head lol. Well hooray for a nausea-free start and fingers crossed the tablets will keep it that way. Are you taking the 'champagne' tablets (Dom Perignon/domperidone - someone had a sens of humour naming that one). I used to have chemo early tues and used to have no effects until the friday and then foggy all weekend, so see how the next few days go. Be ready to counteract any quick drying cement effects in particular. Fingers croosed first go will be manageable to give you confidenc to walk in  for the next ones. Is it a timed number of doses or will they scan you periodically and decide from that whether to leave you on it or have a break? I'd forgotten about the wakefulness, has that passed yet? I used to have jigsaws to do at night, kept the brain busy but no physical energy needed. Good luck over the next week and be careful for when you white count will drop, usually after 7/8 days if I remember right. Take care and thinking of you love Lily xx

PS Lisa little chap did the challenge too and the beasts put a lot of ice in, so squeaking and jumping up and down and laughing all at the same time.

[nicky08]

Mine will be Rachel, obviously (said in the voice of Boysy from Only Fools and Horses) or, if I'm feeling energetic Wiggo - as in Bradley Wiggins 

Quick update.

So far so good. No nausea at all hooray - just hope that it stays that way.  It certainly will help with going back for the next treatment as it really got to me last time on FEC. I used to feel ill even before I got in the hospital, yuk.  So, a few aches and pains which I think are a common SE and heart pounding a little bit but being thoroughly looked after and it has calmed down now.  There are quite a few different SEs to FEC so we will see when and how they show themselves.  Just finished the steroids yesterday so I hope I get a good night's sleep - waking at 4 every morning hasn't helped me at all, even though I was taking the second dose before 2pm.  All in all OK for now but I think the SEs may kick in during the next week or so so I'm not holding my breath!

Hope you are all having a good weekend. Is it back to work on Monday Lily?  Poor you if it is but I'm sure you've had a lovely time off with the family over the summer - at least we got one this year!

Nicky x

[lisaf]

lol rattans still in the cupboard, yikes eugh!!!! Well I will see if I can pm you my ice bucket challenge lol!!! Can we have a nickname for yours Nicky?!!!! Big hugs for chemo day xxx

[Lily200]

Hi everyone. Lisa hope you have dried out now 😉 . Carole nice to hear from you and we hope to hear all your news when you get the chance. Nick I have replied to your latest pm and will try not to repeat myself too much (when did that ever stop me lol). I agree I would never do the ice bucket either! Brave girl Lisa. Nick, or should I say Raquel (how fabulous !!!) I am disappointed to hear that the hospitals still leave people hanging around, even though they are expecting them. You would think you had just turned up!! Hope they are on the ball for the next ones. At least they let you out eventually and hope it was not just so they could go home!! Fab news that the first use of the port went so well, so you can relax about that now. One less worry and veins get a rest. Taxanes hit the veins hard so the port will come into its own for this. I' m sure Raquel wouldn't even mention veins lol!!   Its so upmarket compared to beloved Ratty 😉   I had forgotten her nickname for it. Did you burn it in the end Lisa?  Hoping to hear that the chemo went in ok with no probs Nicky. Then just keep a note of your s/e as usual so you know when to hit the prunes 😞  . Take care, stay away from people with bugs. Remind people they have to think about telling you if they are unwell. Eat lots. especially protein. Drink a lot, but not your fav wine. Snuggle down on the sofa and hope you ride the first one out well. Love Lily xx

[peacock]

Hi all, sorry that I've been absent for so long, all visitors have now gone so life will return to normal.

A special hi to Nicky, hope the chemo is kind to you and you dont suffer too many SE.

Apologies for not reading back, hope all is well with you

Love Carole xx

[nicky08]

No way would you get me doing that challenge! Brrrr but well done for you and yours Lisa. As to giving a donation go with your heart and decide who will be using it the most effectively, if you're not happy with the one it was set up to help then go with something you do know will benefit the most.
I had my first trip to the hospital yesterday, needless to say a very long day, pretty much a work day 9-6! As ever the drugs weren't ready so had to wait around for nearly 2 hours which meant getting my Herceptin was delayed and you are meant to be in under observation for 6 hours for the first one. I managed to escape a bit quicker than that otherwise I would have needed my blankets for a good nights sleep! Anyway all went well and the portacath was brilliant! None of the hunt a vein trauma I used to have to go through for an hour before! Filled my time with puzzles, mags and chatting to a very nice lady who was also in for a similar length of time but for a different type of cancer so a whole host of different drugs to the ones we're familiar with. Oh, and also visited the wig lady to pick up my wig. I tried on the ones I thought I liked when I tried them on a couple of weeks ago but not so sure this time. Now, this will make you smile, especially. Lisa who, if I remember correctly called her wig 'ratty' . There is a new range of very stylish wigs but, you never guess, Rachel Welch LOL. So, I will now be channeling my superstar look when I go out - or so I hope ;-). It is very nice and I feel comfortable wearing it when I need to and also bought some much nicer looking cotton cover ups, far more choice and style then 6 years ago!
Well, that's me for now, onto the actual chemo today but should be a shorter day and don't start till after lunchtime so have the morning at home to chill out.
Hi to Carole and Bev, hope all is well with you.
Bye for now will be in touch.
Nicky x

[Lily200]

Lisa, its ages since you bounced me, no wonder I was having trouble! Well done, especially to poor mum and dad who are probably of an age people should fuss them, not dunk them! Not sure about the money either. Well done xx

[Lily200]

Hi everyone. Nicky I thought you might have your first lot today, so have been wondering how you are and thinking of you. Will try to pm, if I can remember what button to press! Lisa poor you! I have got quite annoyed about the whole thing after hearing how many people were just enjoying it as a pramk and not actually making any donation to a very needy cause. Son is on facebook being dunked by a large amount of water and naturally nominated his pals. I think its a laugh if it helps a cause so hopefully most people will now. I have told everyone not to even bother doing it to me as I would not even consider it and its for young folk not people old enough to have a heart attack from the shock lol. Its for youngsters like you but bet it will be freezing, poor you.   Went on my shopping trip to lakeside today. I was really creaky with a very stiff back from my training. Very annoying still tonight and can't bend to pick things up and stiff when walking too. Arms, tummy, all the dodgy bits have had no effect at all yet 😞 Cheered myself with a KFC fillet meal and then a hokey pokey ice cream cornet at Millies, so diet gone again! Bought a few xmas pressies but only if I saw something exactly right for one of the littles. Bought myself another black cardigan, a big baggy winter jumper with a cute animal on, a work autumn weight jumper and a bright pink lacey top for the school bc wear it pink day. I really wanted to buy boots and shoes but was unable to bend down to take my boots off. Victor had put them on my feet to go there and refused to put new pairs on my feet in the middle of the shop! What a spoilsport. Next baby due in 10 weeks 🙂 love to all Lily xxxxxxxxxxx

[lisaf]

Nicky if today was the day fingers. Roses you are doing ok, get plenty of rest.

Well today I done my ice bucket challenge, then mam and dad brother wife and kids all done it, was funny! Not 100% on who to donate to as read some stuff about employee and management costs of asl so not sure xxx

Well won't be on till late tomorrow 1 d tribute for niece and nephew lol!!! Happy days xxx

[lisaf]

Lol sounds fun lily!! Good luck Nicky will be thinking of you, sure your tummy is in knots but hopefully it will kick a**e!!!

Well, hum, only been nominated for an asl ice bucket challenge today ..... Eeekkk xx

[Lily200]

Hi everyone, how are you all?  Nick message noted and yes I will. Hugs buddy. I know the first of any new treatment makes you wonder and it can be an anxious time. I think it should also a time of optimism, to be starting something that could turn this around and bring you stability or even better. Didn't he say it would splatter the liver mets? Very exciting to get that under way 🙂  After all he mentioned millimetres, so there is still a lot of good news out there. Two days in a row 😞 but as you have explained it gives more control and the taxanes are strong and very effective drugs, so good to try that family of chemos out now. Hold on to your hat, believe and jump straight in. We will be cheering you on as always and hoping for the very best xxxxxx

Lisa well you may be jealous of my personal trainer but you probably wouldn't envy my aches this evening. Thought I might need to crawl up the stairs but it is easing so hopefully not agony tomorrow. It was free from a Tesco promotion on any organic fruit or veg you bought, some time ago. They had a list of people and I chose a lady who sounde kind, and she was very kind, thank goodness. She knew all about axillary surgery and that ladies who have had  lots of children don't have the best bladder control ha ha. So no star jumps. I was so relieved not to be jumping or running at all. I enjoyed it and now need to decide if I keep it up as quite expensive but I don't belong to a gym so I don't have other costs. YD is having a session and I thought we might share one. That would mean I only had to do 30 mins, so surely I couldn't be poleaxed in that time, could I? Funniest thing was she arrived in a car with 'personal trainer' splashed along both sides of the car. So now everyone in the street (being a very nosy street) will have seen it and be watching to see if I get thinner argggh. Too much pressure. Will keep you posted. Going on a big shopping trip tomorrow 🙂 well that's if I can walk! love Lily xxx

[nicky08]

Hi ladies and thank you for your thoughts and support.  I will try and log on as and when I feel like it but do feel free to send me a PM as I may not be putting on the open forum all the details!

Glad you both had a nice weekend. Sun has left us for a while and a very wet Bank Holiday Monday which has continued today.  Thank goodness we got our outside jobs done on the Sat and Sun.

Speak soon

Nicky x

[lisaf]

Wow lily personal trainer, I'm sooooo jeleous, let's hope he's a hunky male 🙂 nothing to report here, had a lovely weekend and sun has shined all weekend so had a lovely night in friends hot tub, oh minus the bruises after slipping on the handmade step and I was sober too ouch!!! Hope you have all had a lovely weekend and good luck Nicky for the chemo this week, will be thinking of you xxx

[Lily200]

Hi everyone, a bit quiet on here. Hoping you are all busy enjoying yourselves this weekend. Crikey it rained a lot today. We were visiting relatives and it poured the whole time, so lucky it was all talking and eating 🙂 I will need a miracle for the weigh in tomorrow! Also booked a personal trainer for tomorrow froma free offer on organic  vegetables? So I might be unable to lift a muscle tomorrow after that eek. Pretty scared about it now! Nicky keep us posted how this week goes. i think you might have a couple more days enjoyment before the first day of treatment. Everything crossed for sailing through and minimal side effects. Start upping the protein in your diet now ready for the drop in white cells. Thinking of you, right there with you love Lily xxx

[Lily200]

Hi, its not just me that's noticing the cooler snap then. Cannot cope with feeling cold in Aigist!! Hope that doesn't mean a terrible winter. It usually gets warm again as soon as I start work grrrr. Yes a lovely day to thank our blessings  for our dear youngest baby. I have been helping with the very very old family gown today. It is several layers and he will only get into the larger under layer, being a bit older than some (and a very good eater ). It all happened quite quickly so I was dashing about to find a cake baker, who could meet the very many dietary issues in the family. Anyway I did and it looks lovely with his name, little teddies made out of icing and a blue check gingham bow round the outside. Cannot wait to test it! It is  a  casual do afterwards, as YD doesn't like anything fussy, so hoping for nice weather so we can all sit outside. Then we also have a family meet up on the other side of the family on Monday, so the diet is !!!!! It wouldn't be so bad if I had any kind of will power when looking at the dessert menu! Mum is quite erratic, hurtling from sweet, kind gestures to comments, that are hard to swallow. She has  so little understanding of medical matters that she feels someone could just hand over a body part just like that with no consequence to them, their life, finances, anything. She thought it would be pop in to the local hospital and visit the next day! Very tricky at the moment. He is relatively stable and coping but seems intent on following the transplant route from a cadaver and has understood the guidelines that no-one can be asked to do it. It is clear that the team have discussed me and other members but nothing is said, apart from that it is far worse and more painful for the donor. Time will tell how this pans out.

Nicky yes I think the boho look really suits scarves and the necessary head gear. I like long earrings and lots of long necklaces with it too. Its taxotere you are having isn't it? We didn't have any of the taxane family before so its anothe good line of treatment. Am I right in thinking you need to start using dark nail polish to protect/cover your nail beds so your nails stay on? Doesn't it make them sensitive to daylight? Add some nice long boots to the look too 🙂 Sounds like a lovely trip to London. I haven't been inside the Shard yet, it is on my to do list.  The poppies must have been quite an emotional sight. Keep having fun all love Lily xx