Glad things are still improving Nicky… apart from the hand. hope it turns out to be self healable.
Angie
Hi,
glad to see I haven’t upset anyone so far. Angie I used to drive at people in our volvo estates. LOL. Everyone knows they are rock solid, would love to see but not meet you on one of those roads! Siggo I loved the bike stories and just keep your eye on being able to go back to things like that. I am now feeling quite sensible and will make no comment regarding you drving a car like that! LOL must be a testosterone thing!"!!!Hope Jill is improving a little every day and must do exercises gently lots of times. Try to point out when she moves a little further each day on the stretches, it keeps you going. The onc will most likely just go through the actual results and tell you the treatment, take a pen and write it all down. Then you can come back on here and read thread or ask about likely side effects, etc.
Nicky brilliant news again. You really are a star since your tv appearance. So pleased for you, I bet you had a big grin until the zoladex, yuk. Worried about the chemo leak, is it likely to be something serious? Is it in your right or left hand? Can you see anything on the surface or is it all inside? Keep us posted as usual on that. Angie I do get that inspiration comment and I have to say I am a bit embarassed and don’t know how to reply. I usually just say its nothing but that makes them even worse. How do you handle it? Better than being ignored though. BTW I am now sleping in a silver lamee hat with glitter, princess or what! It was the only hat loose enough not to annoy me but keep my head warm. No comment from hubby yet, obviously hasn’t noticed!
A few things I read up in the USA guru book on Bc - 'Women who took Tamoxifen for 5 years and then stopped showed that the benefit persists long after the drug has been stopped. Even taking it for one year gave benefits that lasted for at least 21 years in one study.The longer a woman takes it, for a period of up to 5 years, the greater the benefit. In the past years we’ve discovered that when tamoxifen is used for too many years, the cells can become resistant to it, sometimes it even starts feeding the tumour. A study found that patients who took it for 10 years did slightly worse.
In 1998 a study of premenopausal women with positive nodes were put in a random trial to have CMF chemo or Zoladex for 2 years. 7 years on there is no difference between the groups.
Wil post more another time. Hope everyone well. Who is in the bunker this week, sorry I have forgotten but wish you luck. Nicky lots of luck tomorrow,you need a season ticket to the hospital. Lisa how is your skin holding up so far and hope your car is fixed without too bad a bill.
Lily x
Stop the car talk, mine in still in hospital, its no longer my baby, aaarrrggh!! On plus side, getting lifts organised for me by friends and family til next friday (gonna sneak 1 in on own this fri if car back, need my tunes and freedom) but doesmake you realise how much people care, my uncle whos only 3 years older than me was upset because I hadnt asked him for a lift, but he works full time, but wants to take a day off, bless!! Few wines and pride of britian and blreay eyes down.
On the old nether regions, worried its something else as problem seems to be slightly further up if you know what I mean (blush blush).
Nicky - great news re results, lets just hope hand is okay!
Rads crack - still going well so you all have a much easier time to look forward too - but cant drag myself away from you lot on this post. Angie only found it today butbefore the main car park turn off theres one for radiotherapy and there’s a tiny car park that was empty just to dump car for free for short period.
Another question for us all, has anyone looked into their mortgage insurance in terms of critical illnees, I havent done anything as havent been off work 6 months but woman atwork her husband had bowel cancer, caught really early didnt have any spread, had op and didnt need chemo or rads or any follow up and had 3 months full pay off work and now back full time, they have had a fight but had a pay out of 98k today and there mortgage was only 83k - how?!?!?! Im going to look into it but sure will come to nothing as dont hve luck in this area, as when husband died got nothing. I know finances shouldnt come into it but the thought of my mortgage being sorted and not struggling each month would be a relief.
Off to watch more tv crap, dirty dancing time of your life show, sad or what!!!
xxx
Hi Everyone,
Lisa re the mortgage thingy I believe you need to have taken out critical health insurance at the time of the mortgage and guess what I didn’t! but good luck I hope you are luckier as that would certainly ease the burden of not being able to work and not earning as much.
Lily thank you for the info on tamoxifen makes me feel much more secure as that is what has been suggested for me two years of tamoxifen and then check that I am postmenopausal and then go onto an aramitose inhibitor. Thank goodness there are such informative people on here.
Siggo re the painful arms that is exactly how I was as I had terrible cording looked like pieces of rope in my arm and under the arm and was sooooooo painful and the area on my side kept feeling full and puffy and painful to touch or move. However I have kept up the exercises and thankfully it is now becoming easier not gone completely but so much better than it was. I have also been massaging the arm and under arm which has really helped (at first I was too scared as it hurt so much) so it really is a waiting game but try to encourage the exercises and it will suddenly become easier. If it is any help I had my axillary clearance on the 16th of June and I am only now beginning to feel it is getting better and I also had a time with severe nerve pain. Just keep at it and it will get easier hope that helps a bit.
It is so nice this week to feel almost normal! what a relief but I dreading next Wed aghhhhhhhh! the 5th FEC as the chemo nurse said I will be fecking glad when it is over! not my words!!! (ofcourse I wouldn’t use such expressions)
Bev x
Hi all: Wow so much to catch up on. And so much technical info on Hormone stuff - will have to read that carefully but it is very interesting. I am post menopausal by about 7 seven years - I’m 61. Don’t really want another menopause thank you but having fllipped thru all the earlier info can start to see the sense in Tamoxifen rather than Arimidex or similar. Will have to do more reading.
Change of subject: Has anyone had a rest between ending chemo and starting the chip fryer? I know there are two trains of thought - you carry on like it was the next dose of chemo or you can have up to a month off. I would like the month off option to get my energy levels up and get my blood count better. Any thoughts? Angie: with all your knowledge I am sure you will have some comments.
Will respond to all the other posts later when I have had a chance to read them all.
Julia
XXXX
Hi all
I feel much cheerier today. My poor little pea brain is still playing me up and making me feel nauseous when I go to hospital - esp chemo ward so all in all did not feel great yesterday. However 1st pamidronate went well and no after effects, I think you can get them with the 1st one but as my chemo side effects would have masked them I didn’t notice them. 1st Zoladex OK - which is all I can say when I’ve already had them for 2 years and know the size of the needle - don’t EVER look if you have to have it! Just wait for the flushing to begin, I think it was 2-3 weeks after 1st one that they started last time. Will be searching for short sleeved tops as I know how hot I got before, I thought I’d never wear long sleeves ever again - well, maybe I won’t now. Will find out how long I have these for before I get a permanent solution re ovaries, then Lisa and I can swap menopausal stories - sorry you’re in this boat too, Lisa.
Well, another hospital this time, Salisbury, a nice drive - or would have been if it wasn’t morning rush hour. Saw the plastic surgeon who looked so young, but then again they are made of plastic aren’t they? Ha ha. Thankfully no long term damage caused. They (Surgeon and nurse) reckon only a small amount must have leaked because if it was more I would have been in hospital before now with my arm held up, on IV antibiotics, and a hand and arm so swollen you wouldn’t believe. It manifests itself as blisters etc on skin surface like a burn so it could have been a lot worse as I only had 2-3 dry patches. No long term damage to muscle etc underneath as it always works itself to the surface - you live and learn. So, all of you still on chemo, if there’s ANY stinging when getting chemo, make sure you tell the nurses and they will do a good flush out to dissipate it. I thought it had stung at the time but nothing that I thought was too bad to mention - silly me! Anyway, on the mend was the general opinion so no skin grafts for me, thank goodness, couldn’t face any more medical procedures atm.
Regarding insurance stuff I keep meaning to check out our policies, we have a couple of life ones but need to read the small print about critical illnesses. Plus, with secondaries, I think some life policies pay out early, if you get my drift, as it’s non curable. This is next on my agenda for sorting out things.
Take care all, soldier on if you’re still on chemo, enjoy the days in between and make the most of the Autumn sun.
Nicky xx
Well after a night of screaming at laptop doing backups I’m back with lots and lots of space on my machine again… phew. A geek with a full hard drive is not good 
What busy bees you’ve all been.
Lisa, it’s our car’s MOT soon too gulp. Really hope it passes. It should do as we’ve done lots of work on it over the last 2 years new exhaust and brakes, youch.
Bevy look at it this way, after wed you’ve only got 1 more haven’t you?
Nicky: Phew, that’s all I can say. Bet you’re relieved.
Julia: Well I was told I would start rads a month after last chemo so get an extra week off to recover if you like, 3 weeks of the chemo cycle plus 1 week and then rads start. Looks like I’m going to get 2 weeks extra but they like to get you into rads as fast as possible and lets face who wants this stuff to drag on longer than it has too (sorry Lily, I know the chemo seems like it’s taking forever for you, but only 2 doubles to go right? I say only, you can thump me).
Re the inspirational comment I just say Thanks, but if I am then so are all the others doing this, and there’s lots of us.
Anyway back to work now that I have enough hard drive to actually do my job… lots of love to you all.
Where’s Kirsty? Or has the fec totally got my short term memory now?
And where’s Lorraine (everydaymatters) too.
Hope you’re both OK.
Angie
Hi All: I have been reading thru all your posts for the last week and am commenting on bits as I go through so that is why the following is a bit disjointed!
Lily: Yes I feel cold a lot especially my nose and eyelids – bizarre or what? I also have a low temperature around the 35.8. Mentioned this to my Prof and he said it was OK, just my normal running temperature. Just checked it and it is 36.0. Re the steroids and the face – my sister has been on the bloody things for about 25 years – she has Lupus disease – and she has the round face but I think after that length of time we have all got used to it. When I mentioned this to my BCN she said the dosage was so low I would not have the same probs as Susan but have definitely filled out the face – unless it is the lack of hair making it look that way - one good thing at least it fills in the lines, but you are not as old as me so probably don’t have ant… I only had them as anti-sickness.
Re your rads planning, haven’t had any of that yet but have meeting with Prof on 20 Oct when no doubt that will come up. Re your comment about amount of chemo – my BCN looked at my file and said she thought they were probably over treating me. Didn’t know it was a treat!!
Love your dog story – little sods aren’t they? We have 10 year old Airedale who is lovely but I always know when it is desperate to let her out – single bark about three times – ignore it at your peril – cleaning up after dog in morning not my idea of heaven.
Nicky: thanks for your kind thoughts – yes I am fine. I keep saying how lucky I have been compared with so many of you girls and can only hope that it continues for the next two lots of poison. Can’t wait for 25 November when I take the last chemo pill. Champers and fireworks that night!!!
Have just read thru your post about hormones, etc and it does get more complicated the more you learn, but I believe in finding out as much as I can, so keep the info coming! Sorry to hear about your chemo leak – I always watch like a hawk whilst they are messing about with me. Had one useless nurse who bent the canula needle after putting it in!
Bevy: hope the arm is feeling better. I think using it gently and doing the exercises will help – I worked on the basis that if it didn’t let it seize up I wouldn’t have to unseize it but you obviously are having more trouble than me. Your comments about the environment and BC have to be right. My Prof said that the way it was going in ten years it would be one woman in 4 that had BC currently it is one in 8/9. Got to be something to do with the muck which is poured into animals which we then eat and into our veggies and fruit and the muck in the air.
On the nodes thing, I had 24 removed and only 1 cancerous, since I was dx DCIS don’t’ quite know how that happened – but will check with Prof.
Angie: thanks for earlier response. The reason I wanted a break was to make sure I was fit for the rads – I would normally say I was anaemic – pale insides of eyes etc – and hit the iron and lots of liver, etc.
Loved your comments about the Chelsea tractors. I live in small village with newish estate of 18 houses on edge. They are all townies with 4x4’s and don’t understand how to use passing places on single track lanes. I drive a Peugeot 207 SW and if they ignore the passing places I make bloody sure they go in the ditch! I am sure you have heard the definition of a Chelsea tractor going off-road – it means parking on the pavement!!!
Next week we are off the Grasmere for a few days. Have been recommended a restaurant with rooms (only 3 doubles) by friends who have been there several times so thought we would give it a try. Don’t care what the weather does so long as someone else makes the bed, cleans the bathroom and does the cooking! Understand the food is excellent and the vino – owner is Italian and gets great wine from Italy. Will let you all know what it is like in case you want to try.
Having written this essay am now signing off probably until end of next week.
All keep well, keep laughing and counting the days to the end of this rocky road.
LOL
Julia
Julia… please do let me know if it’s good. Always on the look out for good places to eat. If you get the chance and want to spoil yourself a bit pop into Beck Steps Gift Shop. They sell the pure lakes skin care range which is all organic and not your usual organic prices. I know Sandra and Iain who make the stuff (we do their website) I can’t believe the prices some people pay for nasty chemicals to put on your head. I expect we’ll all be nicer to our hair when it comes back… in fact I’ve just bought some brewers yeast tablets as I read on here it can help with regrowth and according to OH I now have a definite 5 o’clock shadow, reckon hes’ right. I have a hairline again!
I don’t mind the skin head look actually but I hate being cold… oh yeah I have a cold nose too. what’s that about?
I hadn’t heard of Chelsea tractors going off-road before, that made me chuckle… thanks 
hi everyone
vertangie
hi there im still around, stupid computer is throwing a wobbly half the time, i just get logged in and then it goes blank, hard drive problem i think. i tried to log in at library and wouldnt recognise my password, can you use the same password on another computer?
thanks for asking anyway, im fine really enjoying the break from chemo, but havnt forgotten what your all still going through, stick with it though, it will soon come to an end. (even though it doesnt feel like it sometime)
lily 2000
So sorry you feeling so rough, my husband told me to ask for trials, listening to your stories im so glad i just accepted what they dished out. ( but you may be the one with a big smile on your face later, who knows? Cant you give the dog a sleeping tablet, the poor thing, so restless! (only joking) you must have felt like killing him. take care enjoy the rest, if you can.
Nicky 08
thanks for useful information, so much to take in at times. ive just plodded along now, and just let them get on with things, hoping they know the best thing to do. unfortunetly this disease is so unpredictable we cant even blame the doctors if some treatment doesnt work. we can only hope and pray for a good outcome. and at least weve all made good friends along the way,
take care everyone, should be back soon if computer behaves x
Hi,
well things are settling in the gurgling sewer that used to be my stomach. I swear there is someone in there from the noises coming out. LOL. This is good because the toilet broke and we are down to one. I usually claim one just for me when dodgy. I had a nice surprise today because my Mum bought me a gold chain and gave me my Grandmother’s wedding ring to hang on it. We were very close and I saw her almost every day until she died. So I now have almost every wedding ring in the family, 2 are made into my wedding ring and now one round my neck. So sweet to be entrusted with such precious things. I have also just inherited all my Mother in law’s jewellery so also all the wedding rings on that side too. My jewellery collection seems to be expanding by the minute. Guess they all know how much I love sentimental things and jewellery. I found out that the rads unit I will have to go to, has 2 specialist macmillan radiotherapy nurses so I have been trying to find out more about my port. Apparently they will look when I go for planning but expect to find it is in the way and so will need to have surgery straight after chemo and then they can deep fry this whale in batter from about 2 weeks later. I was hoping to do that bit much later on, because as soon as I go back to work I go back to full pay and then could have a few days off at a later date. It will prolong my treatment poooooo and yikes I have to be awake for this one in the operating room! Not sure I can face that with it being so close to my face and pulling it out the veins in my neck and in the top of my heart. So no problem I will pass out with fright and it will all be done when I come round!!!
Lisa hope the car is sorted and so nice that everyone rallies round when you need them too. The up there can still be the same problem, tablet should get it all but sometimes you need to take a second one if it is bad or go to the doc for a course of tablets. I had to take 8 when it took over all my tubes. If you have started any tablets they are probably causing it. Hope it improves very soon. I don’t have critical illness cover sadly. Rads people are moaning about bad rib pain after it finishes so don’t panic if you get it. Early warning! Bevy you are going to finish chemo before me !! I hope Lorraine is right and it has all been worthwhile, who knows? You just have to keep believing. I wish more people posted good news, perhaps they think it is tempting fate. Lorraine I am back on my toes and out there! How are the tablets going? Julia the next chemo for us would be 4 weeks on our CMF cycle so you will probably get what you want. Have your Hb levels been very low? Mine have hardly moved, always abbout 12 - 14 so not a problem so far. Could you start eating iron rich foods when chemo finishes? How is your stomach on CMF? Mine is horrible and diet is very restricted unless I want to pay the price later. Nicky I am going to will myself to be post menopausal, not good with any injections so very scared of an op using locals. I will be squeeking and jumping up and down all the way through. Oh poor you, how often do you get them?
What a relief the hand does not need more surgery, and hope it improves very soon. Is your wedding ring still too tight to wear? That sounds really bad if you get a big leak of the drugs. I am wondering which bit of me would swell up? Would I have a 96 inch boob? I had to carry the iceberg from Titanic around for weeks after the initial surgery, couldn’t even get the big bamboozle under water in the bath. LOL. You could probably get some great cotton stuff in the summer sales. Wish I could have a little bit of it, still freezing. Yes I have turned into the dog and got a cold nose too, fab! Angie can’t reach you, you are safe! I was supposed to go to a meeting tonight and they said teachers TV would be filming it! Oh yes I want to be on that - not, so haven’t gone. Stayed at home and stuffed cashew nuts which make my mouth feel really good, must be the oil. Will see if they affect neuts as well as other neuts and report back. Not that many people are bothered these days, all swanning off to tropical radland, just joking! Julia I definitely have the steroid face coming. I have a relative with lupus too and mine is not that bad but i can see a resemblance, just hoping it goes when we come off them. Did you know if you take any steroids it is 2 years before they get out your adrenal glands, scary? I laughed about the wrinkles because mine have all gone and someone was jealous - well be my guest if you think the price isn’t too high. What a thing to say to someone!! Yup, ignore 3 barks at our peril too with the dog. Are there any chemo ladies left who don’t drive people off the road? I did laugh at that, thought it was just me. Not many tractors for me so have to pick on boy racers and slow drivers!! Have a fab time in Grasmere and take it easy, you deserve it.
Hope all are well and Kirsty please be alright on this one, you deserve a break. Joanne have you surfaced from number 6 yet?
Wonder who will get post number 1000
Hugs
Lily x
hiya all
Lily thanks for tip of for tablets today over counter, thanks for the spelling! Well tad nervous today for some reason!!! Maybe its cos tomorrow is my first trip outside sunny cumbria all year, cant believe it, havent been further than a hospital all year. Nothing too exciting just to the rugby league final at Manchester but my parents are going, my bro and sis in law and my friends, there’s 16 of us so should be a good giggle if I can stay awake long enough! Well hate putting pooch in kennels as that’s where I got him from and he’s such a handful, well is with me, last time he went in I was panicing the whole weekend as not friendly with many other dogs, come back and said only problem was he was a bit timid, what!!! but its me, he’s very protective and domineering apparently but if you seen him cant help it, looks like the dog at the end of the rspca advert a while ago. Well thought seem as he hasnt had as much walking as normal and my usual kennel was full a new one has opened, would you believe it “Pampered Pooch Hotel” - he wont want to come back, gets his own room with cast iron bed and matress, music, cctv, curtains, windown and 5 walks a day!!!
Sounds yuk having to get your port out Lily, gives me a pain just thinking about it!!!
have good time Lisa. Tis one of the best medicines
Lee
Hi: I thought I would leave posting until next week but – hey – it’s addictive!
Angie: will definitely do a Michael Winner review on Stonegarth! (Their website is Stonegarth luxury B&B if you want to have a look). Will also check out Beck Steps – have had a look at their website and will look at the hair stuff – I too have the shadow but it is growing – ditto the bloody legs which I will have to shave some time! Will also try the brewers yeast to give it a boost – can’t see that doing me any harm. My comments about chemicals in everything affecting the BC must be right, you can hardly get away from them even breathing in!
Lily: How lovely you are inheriting all the family jewellery, particularly the rings, what a nice way to remember. Can’t remember what my hb levels are – docs at home, me in office – but my white cells are about 6 and my neuts best are 4.2, will have to hit the chicken soup again when I get back from Grasmere. Stomach is OK but have occasional dash to loo but that it usually when I have eaten something like spag bol, ie sloppy food. If I stick to meat, fish, poultry, veg, etc am OK. Have been avoiding fruit and cereals but have upped the eggs and cheese – good stopper-uppers! Yeah, steroids are the pits and just hope the moonface goes down when we stop having them. Glad I made you laugh about my assertive driving – aggressive moi? Never!
Lisa: love the pampered pooch bit – our dog gets radio in her kennel as she is used to being in the house with people most of the day and enjoys radio 4!
Siggo – hope Jill is making progress and you are getting some rest and time together – it will help.
Will go now – really must do some work as I am away all next week. Thanks for your good wishes, hope you all have a good weekend even if it is going to be freezing cold, and no one has the horrids, will report back next week.
LOL
Julia
Should have kept my mouth shut about car… .spent the day hunting down an offside rear light unit for my Volvo… so that’s what Offside means LOL
Anyway hope you all have a great weekend, suns out
Hi,
well went for a wander round Maldon today, which is an old market town near us and also a river estuary where a lot of the old sea dogs still come in to visit. You often sea the old sailing boats come in, which are so graceful compared to the powered boats. Too cold to walk along the promenade so hit the shops and cafes. Every time we stepped out a shop it started raining as though we had a cloud right over our heads. So another plus of chemo - you don’t worry about getting your hair wet any more because you don’t have much/any and it can’t look much worse if you tried!! LOL. Anyway good old tummy survived mid day snack and lunch before growling in despair and had to drive back fairly pronto. Sorry to mention it but I got some Christmas presents as well as birthday things for number 2 daughter, next week. I am also having my Grandson for the night when she goes out to celebrate, so yippee I can kidnap him again. We have a little routine of walking the dog (with 2 leads so he can have one) and then we visit the hospice shop and get all their cars and secondhand toys out all over the floor and buy all the best ones, then on to the cake shop for cream doughnuts and yumyums to bring home. At the moment he has an obsession with Scooby Doo and camper vans, followed by Wiggly Pooh, as he calls him.
Lisa I can quite understand why you feel nervous. I keep thinking about going to places and then don’t. I think you will get carried along as you are in a group and I hope you have the best time ever. You just forget all this cr.p for a while and have some good old fun with your family and friends. I love rugby, would shout my head off. Doggo will be fine, the worst bit is dropping them off when they look sad. Mine just walks off like we don’t exist! He comes back with no voice from barking, every time. Rather them than me having all that woofing all the time. Yes it looks like a lot of us will be going back to surgery again. Mine is minor so shouldn’t complain, it just sounds horrible. Julia, the books say increase your fibre to stop the runs as it bulks you out. It makes me bolt instead!! LOL Spag bol gets me too and I crave it because I can’t have it. Have a really great time, you deserve it too.
Everyone else no doubt will hear from you over the weekend, have a good one if you can and keep away from colds, lots of people sniffing and sneezing at the moment. If my nose and eyes drip much more I will have to get windscreen wipers fitted and walk round with my nostrils packed with cotton wool all day!! LOL
love
Lily x x
(drip drip sniff wipe)
Lily… interested in what book says that… it only works like that if balanced with binding agents AFAIK (as far as I know)
Scooby Doo, camper vans… the mystery Machine . maybe we should all get scooby doo wigs and put on a show. By collie could do scooby
us being the other characters… not scooby of course
this should fix the nets… little britain USA