Hi
Quick catch up before work today - everyone sounds busy at the moment but all doing gardening of some sorts! How similar are we?
Lisa - it’s sooo annoying when you’ve posted a long comment and you lose it - you also lose the will to type it again! No doubt when you’ve stopped fuming you will try to re do it! Just a quick comment about the aches. I was checking one of the other threads about Hormone Therapy and there is one about Arimidex and aches. I’m already taking glucosamine and the Ch one (can ever remember it’s full name) but it seems adding MSM (sp?) to the mix will help even more. I had read about this a while ago as well so I’m off to get the MSM at some point and see if it does improve things. My onc says these are fine to take and do not interfere with anything.
Other than that no news other than some flipping travellers have set up camp in the common opposite us. I don’t usually rant against a group of people but they all have a bad reputation and I know that when they get moved on they don’t take any mess with them. Who pays for the clear up? Yes us muggins who pay our council tax! Keeping an eye on things and making sure all is locked up until they get moved on - again, can’t quite understand why we all have to wait for the eviction notice to be served, why not chuck them off straight away? The only ‘pleasure’ was watching them try to get their vans, caravans and cars into the field after the heavy rain we had yesterday - a lot of wheel spinning in the mud which, of course, they were making worse!
Must dash, hope you all had a good day and I’ll try to catch up later.
Nicky x
hi everyone
nicky 08
how strange you mention travellers, my friend is grumbling about the same thing. she says the noise from the generaters drive them up the wall, and when they decide to go the toilet outside and you just see a big hairy bum in the distance, not a pretty site. still got lots of pains too, i was talking to pharmacist today, about the bonefos i take he says they are about £100 a month, i asked what else they use, and he mentioned one you can get for a few quid, but at least i know im getting the best.
lily 2000
of course we read your posts, they keep us amused. hope your results are ok, i still havnt heard about a mamogram yet, and its about a year for me too. my surgeon said i would be seeing her, but she s not been in touch as yet.
lisaf
it is so annoying when you lose post, somehow it never flows the same second time around.
i ment to ask all of you if you have regular blood tests, one of the nurses asked me about my markers, i havnt had a test since chemo, what about all of you?
take care x
Hi,
well no school work this evening, hooray. We took ED to one of those greeny people who do food sensitivity testing. It was fascinating and I could have talked to her all night, will probably go back myself just out of curiosity. ED always has tummy trouble and doc wasn’t helpful. It seems she has a big reaction to milk, onions, sprouts, oats, barley, rye and rice. A milder one to others including vodka and white wine. She is ecstatic that chocolate came up ok but desperate that she can no longer be a crunchy nut fan!! Turns out most days she is having her worst things.They also tested air-borne things, pollens and vitamin and mineral deficiencies. We went out to dinner on the way back and were laughing at the menu and trying to work out what was safe. She has to wait till she is ready to start, then abstain from the big reactors for a bout 6 weeks, then she goes back to be re-tested as often some things are ok when they are all separated (or something like that). It was £35 for over an hour and hundreds of tests, which I thought was a bargain. Visit to the vampires went ok. I was glad it was almost empty with the pig flu scare. Not sure whether I was more annoyed at paying £2.50 car park for 5 minutes or pleased to be out so quick.
Lorraine I got the mammo appointment about 6 weeks beforehand and separate from my other appointments. Perhaps I am attached to screening now? Glad to hear you are getting the expensive gear, quite right too, you are worth it. I have been seeing the onc and then the surgeon, in turn, every 12 weeks since finishing everything. I have to have tons of blood tests (same as when on chemo) before each visit to the onc and he always checks my tumour markers. So this will be the 3rd check on them since new years eve. My surgeon has moved me to 7 months for next check up. The onc I see this week. Some people’s neuts stay down after chemo so that is one reason my place do a chack within 6 weeks of finishing rads and chemo. Not sure if that is standard or unusual. Nicky I am not gardening - repetitive movement so forced to admire others doing it lol. Don’t stress over the travellers too much. You would have loved the food allergy lady and all her potions and drops. She wanted to know every single thing or trouble she had with every part of her body and was reallt trying to help but in a way to fit into everyday life. Sending the rest of them down there and with a bit of luck I can banish sprouts from the house forever lol. Hate the rotten little greenies! Lisa did you amke the most of the day off and weekend or are you still enjoying yourself? had to record all my progs tonight so I have a nice stash to watch on boring nights.
Hugs
Lily x
Hello ladies its been awhile it has taken me ages to catch up with all the posts! You have been busy.
Ive managed to borrow a laptop so will be able to keep up and post more often.Have any of you heard of health care leave? I met with my manager at work about returning and asked about holidays I didnt take last year as I was off sick and was told I havnt got any cos im on health care leave Ive never heard of it. Ive got a pathways to work interview next week about finding a job dont they realise Ive got 1. All this for the small amount of money they give you, a medical has been mentioned aswel I know a few of you have been through this any help would be great
:0)
Hi Soulgirl, can’t help with any of the work issues as I’m self employed so don’t have the luxury of paid holidays 
Hope you get some advice though.
Catch up with everyone else, here goes…
Lorraine - will you stop telling me how you are getting the more luxurious treatment for your bones! You have nearly convinced me to change and that was before the 5, YES 5, attempts to get blood out of me on Tues. 1st at the GP’s surgery then the hospital. My vein (I think there’s only 1 good one left) is playing hard to get and what with needles and being in hospital for the IV every 4 weeks I’m definitely thinking of going onto the tablets. Seriously - can you tell me how bad it is each morning taking them on an empty stomach and waiting to eat or drink? Don’t hold back - I need to know! I get a blood test before each IV, hence knowing my current blood stats but my onc doesn’t use markers so I’m none the wiser as to what they are atm.
Lily - hope you are able to catch up on your trash tv! We’re only into the great british menu and grand designs - well we can dream can’t we? Hope all goes OK for tomorrow - sure it will do - and then you can have a break from tests etc - something we all need.
Lisa - hope you haven’t given up posting for good! We need to know how you are getting on with your fab weight loss and what else you’ve been up to with your mad friends 
Julia, Bev and Angie hope you are all doing well, update when you can.
I’m off for next, and hopefully last, IV on Friday. Just have to hope my onc or sidekick is there to discuss this further. I did mention it last time but that was before the last hunt the vein episode which I’m now getting fed up with. Will need to know how and when I can start the tablets if they think it’s OK to do this.
Hope everyone is busy and doing OK, hooray a Bank Holiday to look forward to and hopefully the weather will be good.
Nicky x
Hi,
well up late but not due to work this time, the imminent hospital visit is obviously on my mind as usual. We are planning a big cooked breakfast at the hospital just like in the chemo visits. I swear my OH enjoys going so he can pig out!Hope I might meet my new research nurse as you always jump the queue with them and it is long. Went out to dinner tonight and feeling rather uncomfortable. Hey it was hand made meringues with wild berry compote and mascarpone, yummy yum. Lisa I blame you entirely, this is the third time I have eaten meringues in just over a week and I had not eaten any for ages! I have not been back to the gym yet!!
Nicky poor you, 5 attempts would have had me in tears.I nearly was with one go as feeling madly sorry for myself that day.Think the anniversary of losing my Dad and hubby’s Dad (they died on the same day but not the same year) hit me harder again this year, not sure why. Does your arm hurt or ache afterwards or is it just at the time? The tablets sound very tempting if as you say there are not too many SE. We love Grand Designs too, OH being in that line of business. He nearly did one of the programmes but the owner of the house decided he wanted privacy. Anyway stick to your guns when you see the onc, you could always post on here about the tablets to get responses. Soulgirl I went through all that. Phoned the medical people up said I have BC do you think your doc knows more than my onco plastic surgeon and consultant oncologist and anyway I have a return date for work? They straight away said they have to send that form and no need to go.I didn’t get any hols as a teacher and the holiday system is different. However one of my local friends is being given hers for last year and this. I was made to go to the pathways interview too despite having a job and being about to return. It was just a formality. They do offer help as you go back and that is what mine was mostly about but it was means tested so no joy there. Then out of the blue they sent me a letter to say I might qualify for a job grant and had to reply quickly with child benefit details. Shocked to be sent £250 for returning to my permanent job!! So go along and hopefully you will be sent a letter about that too. I was furious at being asked to go and in particular the pathetic comments on the letter but it was ok. Good luck.
Nighty night all
Lily x x
Hi all: Haven’t been on here for a while but have been reading all your news. It seems we are all doing OK apart from odd things – Nicky your vein problem would have had me ready to kill. Hope they find a better solution for you.
Have been on Arimidex now since end of Jan – can’t believe it is that long ago. All OK apart from aching shoulders – why shoulders, don’t know. Worse in morning not so bad once moving around. Told my Prof that I was trying the Gluco, Chrondrotin and MSM and he just smiled – don’t think he thinks it does much good but since it doesn’t do any harm, will continue with it. My sister recommends strong cod liver oil capsules but they make me feel sick. Had a bone scan on Monday to set a marker for the effects of Arimidex, was sent an appointment for mammo for next week but have put that off until June. Don’t think my battered boob would be too happy being squashed flat.
Have got appointments for the surgeon and my Prof later in year but am not thinking about any of that. Am also trying not to do the “this time last year…” stuff. Lily: I started my chemo on 28 May and caught up with you when you had to have any extra week to recover – but I’m not thinking about that!!!
The hair is great – very Judi Dench – just waiting until I can get proper colour on to it – about another month I think.
Hope Angie is OK – we haven’t heard for a while have we???
Bank Holiday weekend looks a bit iffy but that is English Bank Holidays for you. Take it we are all avoiding pigs and going to Mexico! I always look at the list of jabs you have to have to go to various countries and think “I’m not going to a filthy place like that!”. I’m even dubious about going to London since that is virtually a foreign country. Think I will just stay in Warwickshire with a quick trip to Suffolk in a couple of weeks.
Keep well all, and keep making progress.
Love to Angie if you are reading all this twaddle!!!
Julia
XXXXXX
Hi all, sorry been missing for a day!!! will catch up tonight! Lily hope results were fine!
Anyone know anything about insurance - Ive grovelled at work and looks like me, bro, and the kids incljuding 2 week old might go to florida next week and surprise my mam and dad - dint think I could get time off but might be possible - quandry is worried about my arm and insurance in general - any ideas?!?!?!
xxx love from a happier Lisa xxxx
Hi Lisa
I am sure you will receive some excellent advice from other users on the subject of travel insurance, but, in the meantime, here is the link to our factsheet on travel insurance which you may find a useful read:
breastcancercare.org.uk/upload/pdf/bc_travelinssep06_0.pdf
Kind regards
Louise
Facilitator
hi everyone
nicky 08
i am used to taking the tabs now, and dont notice any side effects.i do miss a cup of tea when i wake up, but im used to it now, and i do my jobs first and then sit down after 2 hrs and enjoy a breakfast/lunch. i also feel the body is getting a steady stream of whatever is in the tabs and not all in one dose, so hopefully that cuts out many side effects. i couldnt be bothered to go hospital every few week.(the further away from there the better) and my veins are so glad for not being played about with. but u need to ask questions your end, dont go by what i say. hope you sort it out arms sound sore.
lily 2008
glad work load as eased. hope mamo’s alright. so scarey though.
ive got a constant pounding in my ear at moment which is driving me mad, another trip to docs i suppose soon.
lisaf
great if you could get away, some fun would do you good.
everyone enjoy the day take care x
hiya, anyone know much about chickenpox?!?!? My niece had chicken pox which I have had when younger, theyve crusted over now so fine, however the little two week baby now has it? Im wondering if my immune system means I might get it a 2nd time??!?? Also typical, it would be 11 days to we go on hols and they said the baby should be over the pox within 8-9 days so dubious about what to do
xx
Hi Happy Lisa!
Insurance to the states is a lot higher than Europe but it’s worth checking out Maionline (google them) as they are very reasonable for Europe and were meant to be introducing a USA policy this year. Also there is a thread about this on the secondaries bit. I’m not trying to scare you, honest, but it’s more difficult for us than you primary ladies so check the companies out on there. If they insure mets ladies they will definitely insure primary ladies. If you can’t track it down let me know and I’ll have a search Florida - jealous or what!
Take care
Nicky x
ps Chicken pox is usually contagious before the spots show and then after, before they’ve crusted over. As long as there’s no bad spots you (baby) should be OK to travel. You may get it a 2nd time but I’d think your immune system would be pretty much back to normal by now.
hi lisaf
that does suprise me, the baby getting chicken pox. it must be rubbish what someone told me about them having immunity for 3 months off their mums. poor darling.,im sure youll be fine,
take care x
Hi lisaf
I would get a doc certificate for your baby to travel, (if your flying)as watched it on t,v, when little boy had them, they had to get one
Lornaxxx
Hi,
well mammo results still not back and have not been received by the hospital either. We have a separate swanky in town breast clinic separate from the hospital. So have to wait for a letter as the doc who reads them all went on his hols the day I had it done! Touchy feely was good apparently - blush Lol LOL. My tumour markers have now sunk to 17 hoooooooray. I confessed to having written the Ca 15-3 test on my blood forms whenever they didn’t, which they thought was hilarious. Big breakfast was yum. Parents evening was fine but quite tired again now.
Lorraine good luck with the ear. Lisa I should seek advice from a doc about travelling with the babe being so young as USA might be a bit funny, being so attached to Mexico. Hope your plans work out, sounds very exciting. I don’t think you would get it. I came in contact with shingles while on chemo if you remember and they said unlikely to get it. hi Julia, my hair has been colored 3 times now, go for it!! Nicky good luck for tomorrow with the bone strengtheners, hope the one and only vein does his stuff.
Hugs Lily x
Weel nowt ever simple with us, babs doesnt have a passport and was going to be a pain to get sorted in time so they arent going. Im still undecided wether to go or not?!?
Mam and dad has room and havent mentioned it but just a bit undecided. have travelled over alone to brothers before, but it was me, it was the day they were trying to bomb planes, i was a wreck at airport, had to unpack on floor and even take contacts out etc , mind did get upgraded to first class as wanted my seat, but its the self conciousness, brother has his own villa whereas my mam and dad are in some villa/apartments with around 600 apartments so worried about costume issues and carrying suitcase etc. dunno.
Well gonna catch up later on posts off to check out flights and insurance xxxx Hey its bank holiday weekend, no work now till tuesday xx
Hiya
Lisaf get yourself on holiday you deserve it wish we could all jet off somewhere
Ive had some mixed news today had a follow up appointment with my onc hes had the results of the heart scan I had on Monday, they are stopping my herceptin for now as my heart isnt functioning as it should be! Ive only had 4 herceptin im realy worried cos my sis had a heart attack at 36 my dads got heart probs, just hope its due to the herceptin and not a hereditary thing. Anyone else on herceptin at the mo? This is my last night of smoking got the patches to help I hope I can do it, cos this is another wake up call. Does anyone believe you can physicaly have a broken heart Ive had a horrible few weeks Ive lost the love of my life, my soulmate, my dad was taken into hospital 2 weeks ago, hes had an aneurism which caused fluid build up on his brain hes doing well now but why does everything happen at once.
Sorry for being a moaner tonight
welcome to all the new ladies who have posted
lisaf
go for it! with what youve been through it will be a peice of cake(oh no where did that word come from, so early in the morning too)
soulgirl
dont worry about moaning, ive done my share too while going through this. as long as we pick ourselves up and move on, well be ok.
sorry your dad is so poorly as well, i know what you mean about things coming at once, often seems that way., and thank goodness theyve realised what the herceptin was doing, now it can be sorted.
take care
everyone have a brill weekend, most of you will have a few extra days off work, so enjoy!
bye for now.x
Hi Soulgirl: As I posted some weeks ago, my onc and I decided that Herceptin was not for me as I have had tachycardia (irregular heart beat) for about 30 yrs and have terrible family heart history on my mother’s side. He reckoned that the benefit to me was about 4% improvement on my survival stats and heart risk was about 5%. I had echo cardiogram which said my heart was OK but we decided the risk outweighed the benefits. Suggest you get your heart checked out carefully before you go back on the Herceptin. Don’t want to scare you, but that would seem sensible. You do seem to have a lot to cope with at the moment, so sorry about your Dad. Life can be a bitch can’t it?
Hope everyone has a good Bank Hol weekend – think we may even see some sun.
Hugs to all
Julia
Hi,
we have been having terribly slow internet response here due to old lines they won’t renew. Made it hard to post as took so long and then lost broadband, etc. Anyway Oh has been on here beavering away and cursing and hooray it has speeded up again. I have not really planned anything for this weekend so feel like I have tons of time to do what I want. Little chap is staying tonight so we are watching Winnie the Pooh as he is too excited to go to sleep. Managed to see Gordon Ramsay on low volume (too many Fs) while he built a den with all the sofa cushions and wrapped up ‘treasure’ for me.
Lisa sorry things are becoming tricky. That last trip sounds scarey but I guess you have been through much scarier things since then!Well there is, how much did you say? - over one stone less to pop into that costume after your diet. No-one except your parents will know you so does it really matter? They have REALLY BIG girls over there lol. I think you should go x. Soulgirl sorry to hear you have a lot on your plate at the moment (sorry I am food obsessed too).Julia was the only one of us who was HER2+ so we did not really debate herceptin too much. Might be worth doing a search or starting a new thread as I have read of a number of people who had to stop taking it for the same reason. Have they arranged for you to see the cardio team now? A lot of us have seen them for various reasons over the ladt year. They put my port in and then removed it before rads. It sounds like it would be a really good idea to quit smoking, so hope it is not too difficult for you. People tell me the inhaler things like a real cigarette are good, even some of the kids at school use them. Lots of luck to your Dad, how is he? Things do pile up but hopefully you are getting all your problems over in one go and will then have an easier time afterwards. Keep moaning, it always helps me! Lorraine and Nicky have you anything nice planned for the bank holiday weekend? Just been invited to a bbq so hope the weather holds.
Hugs to Angie
Lily x x