Darling buddies from May - moving on

Life after a breast cancer diagnosis Recovering from treatment
81

Hi,
Bev, surely you guessed who the tv star is, or have you forgotten (Nicky)? The holiday sounds fab and I am so jealous about sun, I could just soak it up. Keep us posted how it goes with the onc. I really don’t know why but some docs seem to want to see people more often. Will let you know what goes on but think it is touchy feely. Can’t wait!!!
Lisa I have been told by the research nurse that brain mets are rare from Bc and that is why they allow us to use the cold cap. No consolation to poor people who get them though. I think the level of worrying we have is enough to give anyone a headache. Try chilling out and remember some huge % of headaches can be cured by drinking water as being a bit dehydrated can cause them. Not sure if that works but an easy remedy to test out at least. Good luck and hope they soon go. How did today go Nicky? You should have some weeks of freedom now. Roll on Thursday!
Hi to everyone else on here and hope you are ok.

Well I had my big return to work today, all planned to a tee. Dropped Victor at the station to try a short day at work and went on to school for a quiet meeting and visit to see some members of staff. Next thing, the fire alarm goes off and so all 1200 of the kids see me as we line up for the fire registers. What a hoot! I had lots and lots of hugs, ignored by a couple of people, and managed to stay grinning and not get emotional, thank goodness. Actually I did not feel sad at all but absolutely shattered when i got home afterwards. Someone has bust my laptop so oh dear I have a brand new one waiting for my return! I had forgotten how disgustingly like mud the cheap coffee tastes like though. Most of my things have been chucked around by the newest tenent of my desk and all my notes taken down, argggh my brains! Still they say they are going to let me do very little for the 2 weeks before half term and would I be happy to sit in the office. Yes! It will be great as I should be able to poodle about and work out where everything has moved to in my absence. Also got to shake my department up a lot as a lot of people have done bits and bobs while I was away. Didn’t think it was the right time to ask for a rise!! LOL.
Lily x

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hi everyone

best wishes lily on your return to work, i have a cold now, so i will just have to chill out what with that and me back everytime i sneeze i dont know if to hold my back or cross me legs cause the bladders a bit weak at the moment. i feel ive aged in a very short space of time. goodnight god bless x

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Good luck with going back Lily - its wierd but nice - I like to be in control so hate that I wasnt and others had been tampering but back in control now!

Well enjoy your TV Star guest!

Oh, forgot to tell you all, i visited a web site called applause store where you can apply for free tickets for shows - got 8 free tickets for Britian’s Got Talent tomorrow in Glasgow so Im off to see Ant and Dec and Simon Cowell etc. - sad but excited. Decided to take some family down as a little thank you!!!
xxx

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Lily, glad you got back to school and saw everyone, at least that’s done now and you can move on to whatever new normal you want.

Now’s a really good time to read up on CoQ10 if you haven’t, I’ve been taking it to help get my cognitive powers back, it’s supposed to help memory and conversion of food to energy. It’s just a vitamin but I think it may be helping. I notice if I forget to take it for a few days.

Hope to catch up with the thread in a few days, it’s mad here. Moving house in a week, work’s gone mad because there’s a big vote in Parliament on Thursday on MP’s expenses, looks like some of them are trying to stop the publication of that data, and they tried to do it sneakily so we have 1 week to tell the world before they get away with it.

Nan’s still in hospital and I’m hoping to see her later this week, looks like all 4 heart valves are leaking. It’s not good at all, nothing short of a miracle. In the darker moments I fear the my Mum may loose her mother and daughter this year but I’m determined if I have anything to do with it that won’t happen and my Nan’s made of tough stuff too.

Stay warm and well ladies and don’t worry if I’m quiet it’ll be work/family/moving/weddings/dog/walking/moving… did I mention moving… Wah

Loads of love

Angie

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Oh yeah, am on nolvadex-D 7 days down, ok so far.

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That’s better, Nana’s back on a normal ward and Obama was just sworn in so today’s got a *lot* better… phew.

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Hi everyone
Wow - amazing about Obama - let’s hope he’s the gift that everyone thinks and hopes he is. Quite emotional watching it unlike when Dubbl - ya was sworn in!
I’ve also been busy with work (today) and treatment (yesterday). A busy week with my A list visit to the folks in Essex!
Lisa hope the arm improves. Also I get headaches, I’m sure it’s Arimidex and I too think of Brain mets, which is even scarier for me as my mets are already here, arghhhhh. I’m sure another cause of mine is tension and stress from the past year. I’ve had stress headaches before and I can definitely feel my shoulders being very tense. I need a massage and have to chase up my local hospice who give them for free to us mets girls.
Angie - busy or what? Understand if you’re not in touch, lots going on and really hope your Nan is doing OK.
Bev - how’s the tan. I remember having one of those once - don’t they happen in what’s known as the sun? Hope it’s not been back to earth with a bump but a gentle glide!
Lorraine - never rains but it pours doesn’t it? Hope you are resting up and get the back seen to soon. ALso that the scans show no further problems.
Julia - hope you are ok and keeping busy?
Lily - not long now! Please don’t be a mass murderer - my girls are quite concerned about my internet meetup :wink:
Bye for now, gotta sort out food for the hoards - well OH and 1 daughter!
Nicky xx

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Hi Girlies,

oh yes Lily ofcourse the famous Nicky!! that will be good. So glad you too have been able to return to work and move back into the real world and not the horrible place we have all been for the last 6 months or more. I had my first day back today and got on o.k. and it was lovely to see everyone my only problem is the tamoxifen is causing me to feel really really cold inside one minute and then hot flushes the next. This happened in Tenerife too so it is not down to our horrible weather! although that doesn’t help. I saw the Onc yesterday and told him that I would like to try Nolvadex instead but he implied I might have trouble getting it and would need to check with my GP so I have made myself an appointment for Friday. I will have a blood test done soon to check on my hormonal level now and then see the Onc again in Nov to check it again with a view to swapping to an aramotose inhibitor if post menopausal. I will have a mammagram in May (aghhhhhh that will be the anniversary) and then I believe also see the surgeon for a physical. So I have a few months of nomality to forget it all once I can get these side effects under control.

Good luck Angie you sound as if you have your work cut out for you. I agree Obama was amazing let’s just hope he is the man he appears to be and doesn’t get tainted along the way.

Lisa hope the arm is improving have they given you lots of exercises to do to help it?

Love to all

Bev x

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Bev. I just had a prescription for Tamoxifen but went to boots and kicked up a fuss. Nolvadex-D is a form of tamoxifen and I essentially said I don’t want extra side effects and I’m not leaving until they give me my chosen brand as I had been told that the side effects would be lower in me

I didn’t tell then that it was here that I knew that I just said “Isn’t Nolvadex-D tamoxifen”… yes he said. “That’s the one I want” I glared. repeat until they cave, best done when there’s a queue of people with colds looking sorry for you LOL.

he also said that I’m now on their system and will automatically be given the same thing next time so if in doubt and you really want Nolvadex go to boots with a stern face.

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Hi,
Nicky, I am nearly being sick laughing about being a mass murderer!! I guess all the warnings to the girls about strangers and chat rooms backfired on you! At least they are wise to reality which should keep them safer. Tell them I am so short and unfit that you could hold me off with one finger IF NECESSARY!!! Shall I fax my CRB certificate over??
What a hoot! Had my hair redyed today, just in time for your visit. Hairdresser said I have loads more hair now and even better there is a lot of new growth still coming through - wish it was on my head.LOL LOL! Not long to go now!!
Lorraine hope that cold goes soon. I had a cough and found I was really impatient and annoyed that I had it. You wouldn’t think we would bat an eyelid after what we have been through would you? How is your back? Victor is still doing his John Travolts impersonation and thinks they are helping. I drove him to the station today and yesterday but he is going to attempt to travel solo tomorrow on the 5am train. I think he forgets about it at work so better to have a distraction. His firm are really busy so he needs to get back. Have you been to the job centre about work? I think if you are actively looking for work, you could get some benefit until then and also they have cash help when you start a job.Worth asking as I found they were quite eager to help ‘people covered by the disability act.’
Lisa hope you have a fab time at the show and what a lovely idea to take people to it. I would love to see it, can’t wait to hear all about it.I have a lot of work sorting my things out as they left a 23 year old male in my area! Argh. it didn’t look like my little home any more. The only thing not removed were the photos of my children on the wall. Have you asked for a good chair for your back yet? Do you think you will manage a holiday at all this year? I think we all deserve a break but easier said than done sometimes.
Angie, I think I need a memory transplant some days. It is multi tasking that I can’t do very well now. I also can’t have a conversation with one person while listening to another, which is a skill that was invaluable when teaching. Hope your Nan gets on ok. I am a bit cynical about politicians as yet to see one that does what they say they will. Reality checks in when they realise that it is impossible to please everyone, especially as America is such a diverse country. They are so far behind us in many ways. Anyway so glad to hear you have something to get your teeth into and hope the move goes really smoothly. Get that broadband sorted asap so we can hear from you. Hope the nolvadex continues to be nice to you.
Bev I am glad your return to work went well too and take it easy for a while. I think if you said the consultant is happy for you to change or even stronger that you have discussed it and onc agrees, the GP will go along with it. They are not usuallly very knowledgable and if he/she says no ask for something to prevent the flushes. I jus think yoiu really push your symptoms if they don’t agree straight away. Soon they will be free anyway so will make no difference to the GP surely? Great to think we can all get them free soon, as well as all our other prescriptions, about time too. If not try Angie’s tactic in Boots.
Julia how is the tanning going? Hope you are not going up in smoke like I felt I was. You must be through it all soon, what a great thought.
Well must just catch some of celebrity big brother to watch them all arguing and being pretty pathetic! I still keep watching it though.
Take care
Lily x

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Hi: what a lot to rad. As usual will catch up tomorrow when back in office and can spend a decent amount of time reading all your lovely news.

Meeting with onc was OK. Gave him family heart history - cousins and g/parents dropping dead with heart attacks between 40/55, etc. Wasn’t too worried about that with me as was more concerned about my heart muscles than arteries. Unfortunately my heart beats so quickly the MUGA scan couldn’t take proper pictures so need ECG, waiting for appointment. Have been for blood test today for everything including thyroid and cholesterol to see which hormone I get. He did think we may go staight to arimidex but will know after test results - will see him again this Friday. One thing I have never been convinced about were my survival stats, Angie you came up with some good answers to that some time ago. He said that my 67% was post op and that chemo would 10%, rads 5% and herceptin 5% which would get me up to top 80’s - wow, that’s better. I guess the hormone stuff will make a contribution too. Not sure I will be able to have Herceptin due to the heart thing but will sort that out over the next coupleof weeks.

So far the frying seems OK - bit pink and itchy but nothing else. Have no 12 of 15 today, it does seem to have gone by quickly but it is still a pain driving there and back. Never mind, nearly over. WIll look out for the porpopolis aloe vera, I have just got the ordingary stuff.

WIll chat more tomorrow when I can read all the fab stuff you have been up to.

Love

J
XXXX

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Hi
Have been at work today and then straight to Tesco to get my YD’s ingredients for her canape party she is holding for friends on Saturday. She’s paying by the way and OH and I just have to make ourselves scarce for a few hours. Having got back late I haven’t much to report on other than tomorrow is the BIG Day when Lily and Nicky meet! Just making sure OH has filled the car with petrol and then a lovely scenic drive around the M25 - hardly any stress at all I should think! I’m sure we’ll report back but after all we’ve talked about and experienced I’m hoping it’s like meeting a well acquainted (I couldn’t say ‘old’ now could I?) friend. Let’s hope the roads are clear so I get to spend more than a few mins there before heading home!
Good luck to all with Tamoxifen prescriptions. Arimidex seems OK and certainly not getting anything like the hot flushes I had at original dx 5 yrs ago and I’ve been on it long enough for them to have kicked in. can’t believe I’m still wearing long sleeves, definitely couldn’t when I’d been put on Zoladex 1st time round. Julia - only 3 to go and then I hope you can forget all of this.
Take care all, see you tomorrow Lily for a bigger catch up. Will text you when I’m leaving.
Nicky xx

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Hi,
Nicky, I think I have told everyone I know that you are coming, so don’t be surprised if people flap curtains to look at you.LOL only joking! Now have I accidentally given you the address for the tank top terror??? What a treat that would be and I’m sure you would get at least a big snog on your neck!! Only joking again, it is the correct address! Hope the traffic is light so you can bomb round the M25 and stay as long as possible. I am really chuffed that you are driving such a long way to meet up and will have your tv appearance primed and ready for you to groan over!! Can’t wait!
Julia, I had to laugh, is your first sentence an indication of how rads is taking over your life right now? Hope it stays calm, mine took off on day 16, the day after I finished and had no-one to show it to. Still you can bare it all to that lovely sea breeze if it gets too hot to handle!! It seems your other health issues are going to have to be balanced with the onc’s personal preferences on drugs, to find out what is best for you. Hope he comes up with a good plan on Friday. You might check whether he has taken advice from the cardio team as he can’t be an expert in that field too. I would have thought that your heart function takes priority right now, especially as your stats are good enough to make a decision to stop Bc treatment now if you needed to. The heart is more black and white than BC when it comes to decisions. good luck anyway.
It feels quite sad as I am doing all my ’ going back to work soon’ last visits. All the social life I have made at home for 10 months now has to try to fit into my busy work schedule. I hope people will be ok with me not seeing them every week now, just not enough time. Took my Mum out on a trip this morning. I tried a top on that I thought was lovely AND it fitted, most importantly. I came out of the only changing room and Mum said it doesn’t do much for you, pointed to the lady waiting next to her and said, she doesn’t think it does much for you either! The woman’s face was a picture! So I shut the door, counted to 10 and tried to work out why I thought it looked nice when they didn’t (possibly just that it fitted), only to hear my Mother telling this woman all about my BC so everyone was staring when I came out! I went straight to the till and bought it anyway!!! Some things I won’t miss about going back to work.
Well wishing you all a good week and frost free windscreens.
Lily x

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hi everyone.

i really cant believe im getting frustrated by a cold , like lily says its suprising things like that get us down after all the other rubbish weve been through. but i think i was enjoying galavanting about and what with my bad back last week, and now this, im just a little ------------------------------------------------------- (some words best left unsaid).

what do you all think about jade? ive always thought she was an ok girl, shes been through a lot in life, but she doesnt really moan, just gets on with it, and she explains the emotions so well, when she talks about discussing things with her children, and wanting to protect them. i really hope she does well.

lily 2000

im trying to imagine you and nicky meeting up tommorow, and for some reason it makes me chuckle. how nice to be able to meet each other after what youve shared online. just look out everyone! i can imagine the mischief you can get up to.
i bet your going to have a big fat cream cake as well. thanks for the thoughts on the job shop lily, someone else had suggested going and paying them a visit. so thats on my agenda soon. anyway have fun tommorow, and report back promptly, dont keep; us in suspence.

everyone else hope your out there getting on with life, i thank god for each and everyday especially since weve finished treatment, just hoping my scans ok on friday

goodnight, sleep tight.

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Hi Lorraine
Fingers crossed for the scan and results, when will you find out? Really hope it’s just all the hormone and bone stuff kicking in rather than anything else and boy do I know where you’re coming from on this as any extra creak I feel makes me start wondering. I’ve not read too many articles either by or on Jade other than knowing she’s in a dreadful position which none of us want to be in, must read the thread on here but don’t know what’s been said so far. Wouldn’t wish any of this on anyone. Not sure which shop Lily mentioned but on Monday when I had my bisphos in hospital one of the ladies who was also having it said she’d just got a job at her local hospice shop. Not sure if it’s volunteer work but if not they may be worth contacting. Good luck with everything and hope the cold clears up soon. Like the idea of a cream cake though - hope Lily is listening LOL
Take care Lorraine and everyone
Nicky xx
ps - maybe I won’t go now that the TTT has been mentioned again!

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Hi: Going to try to do catch up before I have to go off to be fried again – last three coming up.

Guess we are all coming up with anniversaries of the type we do not want. Yesterday 12 months since seeing doc with lump, then in two weeks I have the first hospital appointment, and then on and on. Think I will mark each one with a glass of bubbles – any excuse!!

Angie: Sorry to hear your nan is not too good, let’s hope they can pull her through. Glad the scumbags didn’t get the expenses thing thru but knowing this lot they will find a way of sneaking it in under the door. Do you think that strange noise some of us can hear is the first of the worms turning against ghastly Gordon, or is that wishful thinking? Good luck with the house move, fingers crossed for dry weather. Just read that Obama doesn’t have the lovely Gordon top of his visitors list – obviously man of taste.

Hey: if I’ve added up the dates correctly today must be the big Nicky/Lily meeting. Who said the Obama thing was the most important this week!!

Lily: can’t you encourage them all to elope? £2,500 for the snaps? Haven’t you got a kind friend with a decent diggie camera who can be bribed to stay sober?

Glad the day at the office was good. Must have been great seeing all (well almost all) the people who have missed you. I know you are going to just love it when you get back there.

Re the spelling mistook - now you know why I use word and get it spell checked rather that type straight on to the site. See I can’t spell propolis, either. How the hell have I managed to be employed for 40-odd years. Still so long as it makes you larf!

The battered boob is still OK, bit pink but not sore or anything. Yes, I am more concerned with the heart thing now but am seeing Prof again this Friday and will ask even more questions. I have had the tachycardia for about 35 years and the only time it went away was when I did loads of aerobics and strengthened the heart muscles. Guess I could go that route for a while and see what effect it had – they may even pay for my gym membership.

Bevy: sounds like you had a great time, the thought of some warm sunshine is lovely. Will start searching for some of that when I have finished the rads and sorted out the future. Always love the washing and clearing away bit after a trip, makes it all worthwhile – not.

Lorraine: good luck with the scans tomorrow.

Someone mentioned bloody mammograms – if anyone thinks they are shutting my poorly bit into the squashing machine again, they can think again. They can pay out for an ultra-sound!

hugs to all

Julia
XXXX

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hiya All

Well Im sooo excited to hear how Lily and Nicky’s meeting goes - have fun but not toooo much xx

Britians got Talent in Glasgow - well what can I say, Simon Cowell is tiny, ant and Dec and cuties and well, Glasgow had very little talent - we were there queing up for 2 hours I was freezing and as you know sore head and stiff neck and sore throat had started!!! The show took 4 hours in total with all the stops and starts, however one of the funniest people was the person who keeps you entertained! Well as we hit the afternoon session we got allt he dance troups (obivously had to leave for bed time). Got home very tired and cold at midnight but had a lovely day but…

to top it all, throat was very painfull this am - decided to go to Docs, always at back of mind something wrong - well guess what, Ive got tonsillitus (cant spell), got some penicillian for a week and keep bouking every time I talk as feel like there’s a golf ball inside - but in a stange way its nic eto have something normal for a change!!! Of course it may help with the diet but doesnt help when Im talking and bauking at my boss!!!

Have fun all
x

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hi everyone

where are lily and nicky,?

hope theyve not been locked up!

just cant imagine the day theyve probably had, they probably are all talked out. i think its so good having the support of others who are treading the same path.
thank you all for the kind wishes on my scan tommorow, in one way im looking forward to it, hopefully it may bring reasuring news.

got to go and fill my tax form in, i only have a few days left, speak to you all soon.

and lily/nicky maybe we can all club together and put up the bail, we couldnt do with out your tales on here.

x

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Hi,
well we talked and talked and talked and talked and in between we well talked - for 4 hours !!! BUT she definitely talked more than me !! LOL . I had a really special day and was so chuffed that Nicky drove so far to meet up. She is as you would imagine charming, elegant, THIN, very easy to talk to and she HAS hair and it looks lovely. I met wiggy, thanks Nicky. Not sure how much you enjoyed watching yourself on sky, but I enjoyed watching you watch yourself, if that makes sense. Hope there were no hold ups on the M25 and thanks for the text, so i know you are not still doing circuits round that horrible road tonight! My family are still chuckling at the mass murderer bit! It is only the tank top terror who needs to fear! After you had gone, the little chap said Nanna are you tired after doing all that talking? I had to play shops for the rest of the afternoon to make up for gluing him to 200 episodes of Pink Panther, so we could get a few words in!!
Anyway thanks again for driving and this is definitely the first of our meetings, well I hope so x.
Lorraine, no I think we could have kept talking for months, maybe years even!! Can I wish you lots of luck with your scan too and hope it is just picking up little childrenitis. Have you shaken off the worst of your cold yet? I hope so. I am not a Jade fan but would not wish that on anyone. Personally I hate seeing the pictures of her bald everywhere, bit selfish of me but just reminds me of that time all over again and makes other people ask me things that I was trying to forget! I have not read any of the articles about her though, just saw the pictures in shops. Anyway I will be thinking of you tomorrow and hoping for the best news.
Lisa, I think half the country has tonsilitis at present and it is a particularly nasty bug. My son has to take 8 penicillin each day and is really struggling to get them all down. Sorry to hear you got it too and make sure you stay off work if not well. His temperature hit 39 and he has a stiff neck and a lot of headaches, so keeping a close eye on him.He went back to school today but was worn out afterwards. You take care. The show sounded very exciting but very long. It is great to have been to it though. I will look out for that show when it comes back on.
Julia, yes anniversaries and bad memories all round at the moment. Not only do I have a check up with my surgeon on Monday (3rd day back at work) but today my oncology appointment came through for my first morning back in work!! Wonder what they will make of that. So grrrr that is also another blood test to get done before I go. I was just enjoying getting out of going for them. I met a lady this week who is on the same trial as us and it brought it all back talking to her, so long! Lots of luck with your last 3 days on rads but even more so with sorting your treatment out tomorrow. If in doubt you can always ask for a second opinion. Keep us posted as usual. I too am a little concerned at what I might be having at these appointments. The only mammos I have had were agony and the woman pushed me about so much I felt quite distressed. Re the photos, it is unbelievable but they are one of the big costs now, mainly as you ahve to pay for copyright to be able to get the cd. There are cheaper deals if you just have an album but they are still around £900. They won’t chance anyone else doing them so we will just keep looking round. Good luck tomorrow. Hi everyone I didn’t mention before

Well this has been such a nice week, meeting Nicky and going to look at wedding dresses on Saturday. Even one would have floated me along all week. Hope you all have a special moment this week. Makes it all worthwhile.
Love
Lily x x

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Lily and Nicky, sooo glad you had a lovely day together, sounds like it was good to meet in person! Im sooo shy when I meet people in person.

Im on the old 8 penicillian a day too, but as have to be on empty stomach hoping will help the diet!

Anniversaries are wierd arent they, I found mine on 30th my birthday, got appointment fo 6th and then confirmed on 13th - its wierd scared to celebrate but want to too.

Hope everyone well and Angie that you are getting packed up
xxx