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Embarking on an adventure, you are welcome to tag along

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Embarking on an adventure, you are welcome to tag along

Like all adventurers, I am going into the unknown with some apprehension next week. However, I happy to have met some wonderful people here, during my preparation, since March 2010. I have found out who my real friends are and I am overwhelmed by the love I am surrounded by. Like an adventurer I am ready to push myself to the limit of my capabilities when necessary, and I know it won't be a bed of roses. however when I reach my destination after many months, I hope to arrive triumphant, and a better person.

Don't get my wrong, I have been on another adventure in 2003, so I know a little of what is entailed and I have no illusions, but I thought an up beat thread of discovery would be interesting.

This adventure is peppered with other changes in my life, as before I knew this adventure was about to start, I had plans for other things which I have decided not to cancel.

At the moment my garden is strewn with chopped down trees, so I hope "the man" will come and tidy every thing away soon (as he promised). I hope he is not a "cowboy" tree feller.

In June I am having a completely new kitchen, from top to bottom. The old one is going to be ripped out and I will have to "camp" in my own home. Luckily I have some friends who will help me pack up all the stuff, but we don't have a date fixed yet.

My adventure will also be planned around a special holiday (leaving 25th July for 2 weeks)

So if your adventure is starting too, or you would like to help me on mine I will be very happy. I am sure there will be a lot to discover and share.

All the best to one and all, Maria

PS check my profile for the more boring details of my adventure

4,151 REPLIES 4,151
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worrying over for now, Nell. Great news.
colour therapy didn't do much for me, wouldn't have it by choice. think I'm down for a Swedish massage for a different student, that sounds more up my street!
back still twinging when I went to the gym today, didn't think I would be able to do much but surprised myself and left the gym pain free. hope you feel better soon, Sandra. I find keeping on the move helps.
my daughter did gymnastics when she was little and I know she did cos I was there!!
Had some lovely sunshine this afternoon and some more tomorrow apparently.
eating broad beans now-yum yum, oh, and salad leaves.

love Carol

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Excellent news Nell xxx

Carol hope the colours are good! l use to work with a girl that believed in Aura colour! I remember she told me the colour aura l had, but it was many years ago and have forgotten! I have a bad back too!! came on a couple of days ago, no idea what l did! Just know l have to roll out of bed onto the floor and try and get up that way, took me ages this morning! OH asked if l was ok!! Why do they always ask silly questions when you are on the floor in agony!
Dil came over yesterday with granddaughter and grandson (son on stag weekend) was doing granddaughter some lunch while she was telling me all about her gymnastic class she goes to after school! Told me she comes out of her class then walks along the hall through another door then into a hall, and by the time she gets there she is tired! Then she does gymnastics for an hour and she is really tired! But she likes going with her two friends (forgotten their names) oh l said l wish Ben’s school did gymnastics after school he loves it, told her how lucky she was. Mummy walks in the kitchen, l said ‘that is good Ims has gymnastics at school, Mum looks at me strangely!! What gymnastics? Seems little granddaughter has a great imagination!! Or is she a born liar? Jury still out!

Having a kind of lazy day, a bit of Tennis, (watching, would play but with the bad back!!) a little bit of book work and a little play on the laptop!
xxx
Jill where are you!! need you on fb xxx

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UTM....

Just spoke to my BCN and my Mammo was 'clear' - Yay!!!

Have a lovely day ladies,

Cold and miserable here - and got the heating on! Well it is June!!!

Carol enjoy the colour therapy - do let us know......

Love & Hugs, Nell xxx

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Hi, ladies, back OK ish. I am trying to "listen" to it and when it twinges, stop what I am doing to make it twinge ie weeding, I am supposed to do back stregthening excercises but can never remember to do them until it hurts then I can't do them!! think the Herceptin makes things a bit worse oh and the wet weather. had enough rain up here for a bit thanks. don't know how you ladies find time to study. I can't seem to fit everything in, well, I don't, housework is not a priority!
How are the holes, Sandra? and what tattoos are you having? going for the full sleeve? horrible weather for outdoor events. my son is doing an 11 hour shift at Platt fields party in the park tomorrow-hope they provide waterproofs!
having colour therapy tomorrow for a student (free). no idea what it involves.

off to bed now

love Carolxx

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Wot ?? Sandra has more piercings wot have I missed?
Heather Hope all is going well with you How is Lola Mae?Just getting sorted on FB with some difficulties Phew !

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Morning Ladies,

Gosh Heather what a mix up! that's awful! hope your fil does report it.
Nice to see you posting too and are you glad you course is finished? at least we get the benefit now! I was pleased when my course finished, but I had been strudying for three years and working too so couldn't believe how much time I had - and then I got bc!

Carol, how's the back? Really feel for you, I have two protuding disc and they're very quiet at the moment and not bothering me (sshhh).

Well not much news here; other than tried to slice the top of my thumb off the other night preparing meat - ouch and it's my 'bad' side too so keeping it covered but it's v sore and think it may have needed stitches but it was a no no no going to hospital for me!

It's our town gala today and hope the weather brightens up and the rain stays off; it's rained here everyday for the last two weekd I think 😞

Keep wondering how K is, hope she's alright. Need to check FB reg.

Jill are you going to join us? We're missing you.

Ooh Yes and Sandra's got more piercings - tattoos next I think!

Love & Hugs to all, Nell

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Hi everyone, I am more gar gar than normal at the minute. I am still quite confused with FIL, I have told him he must tell his oncologist on Tuesday what as happened with his medication, he answered me by saying he wasn't seeing the oncologist on Tuesday he is seeing the Chemo Doctor DAAAAAaa so in the end I said just tell who you see. The cancer nurse as rung him today (well it could have been the cancer nurse or the cleaner lol) She has told him the drugs he had taken were the same as the other gentlemans fortunately, it doesn't bare thinking about what could have happened with some of the drugs he could have had. She as told him he must report it on Tuesday as it needs to be reported further up the chain. Hubby is a bit worried at the minute though because FIL as to go for his pre op and a scan nearly 4 weeks before the operation, is op is 18th of July, his pre op and scan is 22nd of June. Hubby is worried that they are checking it is going to be worth going ahead, we will have to see.
Carol, take your time in the garden, bet the broad beans were nice though yum. I know how you feel about going back to were you worked, I use to hate going for a drink in the tea room were I was in charge. I could see things that needed doing, but it was nothing to do with me. I don't go in no more though, it as been sold and all the staff are different.
Hope all you other ladies are ok, as anyone heard from Karen? I have not been on fb yet.
Well take care everyone,
Love Heather,
xxxxxxxx

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Heather, think you need something a lot stronger than coffee!!!it's a wonder you're not off to the funny farm! I hope everything is sorted soon, you've got enough to worry about.
Karen, hope you're OK.
Maria, if your ONC feels you're fine and you feel you're fine then you must be fine, don't work too hard.
I went to the garden centre yesterday, sat in the restaurant drinking coffee and watching my ex collegues working, something quite nice about that although I still do miss it sometimes, 25 years is a long time to work in the same place. fortunatley, when I go to the till someone will put their code in so I still get discount, can't be bad.
more plants for the garden yesterday, have to squeeze them in somewhere!!
had my 2nd complementary therapy at the hospital yesterday, I have 2 more. had an Indian head massage-very nice.
pulled my back again yesterday picking the first broad beans so no alottment today.
Hope everyone is OK

love Carol xx

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Hi ladies, well we had another moment with FIL yesterday. He as had to have an injection every morning since chemo. He got a friend who is a nurse to come and do it to start off, then he said he would be ok to do it. Anyway the first one he couldn't get the top off, he yanked at it broke it and the stuff fell on the floor. So that meant he was one injection short. He rang the hospital and they told him he would have to go and pick one up from the hospital, the hospital is 30 miles away !! Anyway yesterday off he went with the broken needle, he gave it the nurse, and she came back and said ' Mr Astle from Hemel Hampstead' nobody went to her, Fil stood there and she said it again, nobody came forward, then she came up to FIL and said Mr Astle this is your perscription. So he told her thats not me,I am Mr Monks from Banbury, so the nurse said ok do you want to go for a coffee while I sort it out. So off he went to the League of Friends for a coffee, then the head nurse came and found him, they had only gone and given him somebody else's perscription, not just the injection all the medication he took since his chemo was somebody elses. The nurse said it would be ok though because the other gentleman was on the same drugs. So not only as FIl been taking someone elses drugs someone as been taking is!! they have said he as had the right chemo, but hubby said that should be ok because he was there and they kept asking his name and date of birth before they gave him anything. The tablets were just given to him in a plastic bag with instuctions when to take them. Fil did say he had noticed that name on one of the boxes but he thought it was the pharmasist, I think I will need a padded cell soon lol He has got to see his oncologist next week, we cant go because hubbys as appointment the same day with the neurologist, MIL is going so fingers crossed they sort it out.
Dee, wow keep your fingers out, we had a waste disposal in the flat we use to live in Banbury, I very often use to make it bang and crack with cutlery lol
Maria, glad everything was ok with your appointment, just dont go doing to much, just baby steps forward.
Sandra, you are really brave going for op, I wish I dare. I say to hubby I know how a horse feels now with a saddle on, I dont like the thing strapped to me yuk.
Kanga, glad you got your pills sorted, and have a fantastic time on holiday.
Pam I hope your oncon visit went ok, I am going to look at my pills see what there giving me, I am fed up of pills this week.
Well going to have a strong coffee before I ring Mil lol
Take care everyone,
Karen hope your ok (((( hugs ))))
Love Heather,
xxxxxxxxxxxx

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Thanks for all your messages

Nervous about tomorrow but know it has to be done to get rid of the little buggers !!

K x

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UTM
My onc feels I am fine, and I agree with him. Back to full time work from tomorrow (except it is a day off !!) Just realised that it is 1 year and 3 months since I worked full time. Feeling good and feeling strange. Gonna post on mile stones and anniversaries in a very positive way for all the newbies. Next appointment in September, for a scan and blood tests and the works. I celebrated by doing some retail therapy. No need to worry again now until after the summer. (if only that was completetly true)
Little Nell, all the best for tomorrow. What a story, I don't think Kanga or Heather would have done any worse !!
Karen, holding your hand tightly
Vickie, I know you are not here, but you see we still think about you.$
Sandra, I saw your post of fb. Well done for moving forward.
Pam, glad you have an understanding onc.

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Thanks Sandra; Mammo Thurs 😕 Not tooooo worried though as had US on it a few weeks ago cos of 'dimpling' and 'tenderness' but was ok so think mammo will be too - hopefully not speaking too soon - Eek!

and good luck to V too, but know she's not reading at mo (not...).

Love & Hugs to all and everyone, Nell

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Oh my Nell, what a two and eight you got yourself into!
Mammogram tomorrow Nell? sure it is! anyway good luck! hope the results are back quickly!

Kanga well done, lets hope this has sorted your problem out! have a lovely holiday.
Yes your Meerat/Meerkat is the right way up, well done you!! next you will be calling it a Meerkat!!

Maria and Vickie, Good Luck with the oncs,

K, nearly there now! hope you are ok! Lots of Love and Hugs coming your way for Thursday xxx

xxx

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Kanga I am so pleased that your onc is putting you back on Femara. I saw my onc today and mentioned that I had arthritic pain in my hands since changing to anastrozole and he immediately said he would write to my GP to make sure I got arimidex and not the generic anastrozole. He then went on to say that when I next see him if it isn't any better we would try a different AI. So different oncs different opinions again!
Pam x

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Yes Well Done Kanga, and to you too Heather for blowing the whistle - goodness knows what she'd have got up to behind close doors.

Maria (((Hugs))) for tomorrow, hope it goes well.

Thinking of you Karen for Thursday and sending more (((hugs))) your way.

Had a 'Heather (or Kanga) moment this afternoon..... Making a chicken curry for tea in the slow cooker only forgot to add the chicken, panicked and started chopping it up and putting it in and the waste down the sink. Only I forgot I had left the pebbles from the fish tank in a little bowl at the side of the sink (as cleaned the tank this morning and didn't put them back) and knocked the lot down the sink too! Had to 'fish' them out with tongs and they were covered in all the chicken bits and veg leaves. Thought I'd got them all out, switched it on and CLANG - it stuck, one bl**dy pebble was still inside and jammed the machine. Arghh..... Had to then get the long spanner out to unjamb it and then that was covered in goo! Not nice! Anyway all is well, and smelling nice - the curry that is!

Love & Hugs Nell xxx

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well done Kanga, everything is relative so it IS fantastic that your onc understood and gave you femera. Here in Switzerland, the chemists can also give you generics even if your doctor prescribes you the real thing, so I hope you do get what you need. Have a lovely Birthday break (even if it is not your birthday.
Heather, sorry you feel lost, hope you find yourself soon !
Karen, thinking about you for Thursday, and Vickie too, although she is not reading this.
My appointment is tomorrow for the onc, but my meeting with the place for no 2 son is postponed until the 22nd. So now I only need to concentrate on me. I feel better already.
Hugs to everyone who is reading this
Maria
PS love the meercat, I would love to meet him in person

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Sounds horrific Heather , what a disgrace that you had to be the one to report it to get changes made , but what a very good job that you and others like you continue to do just that .
I found when I was going around the residential and nursing homes with the community dentist that actually the council run ones tended to be better than the private ones . Generally , in the council ones they had occupational therapists and others coming in to get the elderly to do gentle excercises , to play bingo , all sorts of things like that to keep their brain going , even the room with the "worst " cases of dementia there was either a television on with an old film playing or nursing assistants talking away to them . In the private homes , not always but quite often , all the inmates were just left to themselves , and the homes smelt worse . Unfortunately , many of the council run establishments were closed down ( costs !!)
The other thing that can be quite frightening , is the fact that we may end up in one of the homes ! Thats why they say , treat your children kindly , they chose your retirement home !!
Well I saw my doctor this mornning , and I cannot say she was too happy with my request . As she explained , Spain´s finances are in a state of crisis , and although they have always been able to prescribe exactly what they wanted for their patients , times are changing , and they have already received a directive telling them that this has to change . As I said , I do appreciate that , but I don´t appreciate the fact that I have , in the space of just over one year , been prescribed letrozole from at least four different laboratories , and last month , for the first time been prescibed Femara . I am never given the same brand two months in a row , that there is absolutely no continuity for me . She knows that I have struggled with this drug , and I told her , that for the first time in all this time , I actually felt more like my old self . I feel happier , certain s/e¨s have diminished , others are more bearable , and despite the fact that my joints are worse , this seems to suit me better than anything else thats been thrown at me , but , I quite understand if it´s a problem and my mind is made up , that if that is the case I will quite happily stop the treatment altogether . She was shocked . I think she thought that it was a bluff , but girls I can tell you absolutely it was´nt . I had talked it over at lengh with my OH , and he was in agreement with me . I feel that I want some quality of life and that Letrozole had taken that away from me . He could see that quite clearly , and I had made no secret of the fact when I have spoken both to my onc and to the doctor in the past.
So I´ve now got Femara , or hopfully will have on my next visit to the pharmacia . Believe you me , it´s not fantastic , but OMG it is sooooooooo much better than it was . Coincidence ? I don´t think so !
No Maria , you did´nt sound pompous at all , I know you were only thinking of what you think is best for me , and I appreciate your thoughts.
Pam and Sandra , yes I did think that perhaps a different AI would be better , but my onc threw cold water on that one by telling me that they are all the same and the s/e´s would be also . Honestly , I do not know of anyone else at all here thats on Femara or letrozole , they are all on Arimidex ..........why me ?
Anyhow thats enough of that , this weekend I´m off to Toledo and Avila . It´s my birthday trip I never had cos of little Archie . I will see him tomorrow for the last of his jabs .
So if you don´t hear from me , have a good weekend girls .
luvKanga
ps How do you like Meerat, now he´s up the right way ... I´m getting there Sandra , not quickly but.............

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Hi Ladies,
Maria I feel a bit lost at the moment, normally on a Monday morning I sort out what work I have to do that week. It was strange this morning, I thought I had forgotten to do something lol. That episode I had to deal with was awful at the time, I was in a turmoil what to do. I couldn't leave because I would have been upset at what was happening. Because it was my first time of caring for learning disabilties I didn't know who to go to, just thank god that lady came.We had meetings afterwards explaining to us what we had to do if we suspected any wrong doing.One day I had been there about 5 years and I had been out shopping, I walked back in and there was this woman in the office I knew. I remembered her from school, she use to run with the gang she bullied me, because I was shy she made the whole of my comprehensive life at school a nightmare. I heard things about her after I had left school, and I had heard she had recently got the sack from a local factory for hitting a worker. So after she had left I went and asked in the office why she was there. Shock horror she had got a job there, she had been for an interview with the owners of the place and they thought she was wonderful. So I told my manager what I knew about her, and I rang my neice who worked at the factory to confirm why she had been fired. The owners than rang me to ask what I knew, they then did more inquiring and found out a lot of what she had told them was not true, so she didn't get the job. I couldn't have lived with myself having her there looking after a group of vunerable people.
Kris, I hope you get your tablets sorted out, and the doctor sorted out.
Jackie, I think I have made you a friend on face book, if I haven't message me and I will try again.
Well ladies enjoy the rest of your Monday,
Take Care,
Love Heather,
XXXXXXXX

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Heather, what a horrific story. I didn't watch even a tiny bit of the panorama program,I could not bear to. I just heard about it. I look forward to more mammoth posts again now you have finished your creative writing course.

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Kanga, Sorry reading my last post, I sounded very pompish, but it was not meant to be. This is the problem with generics, that they are mixed with different stuff than the original, so stick with your real femera or "demand" to change to arimidex. I had tamoxyfen for 5 years and my joints were terrible for the first 3 years, then they got a bit better, or I got used to being old ! Then I had arimidex, and I was OKish. Now take nothing, and have lots of arthritis which is getting worse. AS for hot flushes, they started after my chemo in 2003 but since I have stopped caffeine, they are much better, but still there. Hpwever you certainly sound to have suffered much more.
Group hug
Maria

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Hi ladies, I tried to watch the Panarama program when I was up in the night, hubby wouldn't have it on as he said he wouldn't be able to sleep. I saw the first maybe 3 minutes and I couldn't go no further. I worked in a place like that, well sort of. I got this job just cooking 3 afternoons a week in a home for people with learning disabilties of all ages. Well If I finished early I would go and sit and chat with them, and didn't like what was going on with one young girl. She was partially sighted and I thought they are tormenting her. I didn't know what to do because I was a part time cook and shouldn't be with the clients. I didn't know who to report it to as they all seemed in a group. Then this new carer started, she came in the kitchen on her second week and I asked if I could talk to her.I asked had she had noticed something was going on with this young girl because I didn't like it and I didn't know what to do. So she asked me a load of questions, I told her everything I had seen, it was really hard because I wasn't a carer and I had no proof, the kitchen was right at the back of the building. Well I finished work on the Thursday afternoon and I felt a bit better because this lady was there. Then my next shift wasn't till Sunday and I had a phone call I had to go to the home, when I got there all the staff accept this lady had gone. What had happened she had taken this girl to the doctors and got her to tell the doctor, she said as soon as it was documented she could act, and act she did. That evening the police were there, all care staff suspended, matron moved to another home, so what was left were 18 clients the cooks and this carer. They managed to get tempory staff in but it was very difficult because the clients didn't know them, but at least they were safe. This carer asked me to give a statement, she was from social services, I did no problem doing that. Some of the staff were charged with abuse, and the others sacked. It took a while to get back on its feet and we got a fantastic manager. I stayed there for 12 years then it closed, but I went to work for them in another home, but that is when i had that fall and I couldn't go back. I loved my job, I was cook, cleaner, support worker, well infact any job they wanted me to do. There are some fantastic places Maria, but we only get to here about the bad places. After that program on Monday it must be your worst nightmare. I wonder do any of the homes near you have like a family involvement, I thought perhaps talking to other familes might give you a better idea of what the places are like. Your son sounds like a lovely youngman and I am sure you will find somewhere lovely for him.
Wow look I am writing a book again, its because I have finished my course work lol
Sandra, yes whoever said it me and Ksis wouldn't have noticed it came from M&S, I have not done that one yet !!!! lol
Dee,did you find your new car? I have spoken to MIL & FIL today, he isn't feeling to well today so I have said if he feels worse ring the hospital and just ask them they wont mind. I shall ring again later.
Carol, were I got rain on the IOW from I dont know. I was talking about you the other day to my FIL, he had a list of foods not to eat, I didn't. So I said a friend of mine didn't eat runny yolked poached eggs, and they were her favorite Sunday morning breakfast, but she can eat them now. I think he thought he could never eat them again.
Vickie, yes I would have convinced them I had bought the top from M&S lol
Pam I am on Arimidex, I have terrible pains in my joints, but I have arthritus everywhere so I dont know if that is causing me some pain.
Well Everybody hope youve had a nice Sunday,
Take Care,
Love Heather,
xxxxxxxxxxxx

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Kanga, The trouble with these oncs is they all tell you something different! my onc and bcn at different times told me if l didn't get on with Femara, l can change them for something else, at the time she suggested arimidex!
My bcn said some tablets don't suit some people and they have different side effects, so if l was having bad side effects they would try me with something else!
My Mum can't take a certain antibiotic, she has terrible side effects, but doesn't mean she can't have others!!

As for the tablets you are taking, surely it takes at least three weeks for a tablet to get into our system, so if they are changing them every month or so, you are bound to get very different side effects!
xxx

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Your absolutely right Maria , to be loved by your sons and daughters is the most important thing .To be able to ride a bike and ski is definately more than I can manage .
Cannot speak about any other generic ,but I knew the difference within 10 days , I was never bothreed about taking the others , it was all that was given to me , but I hated the side effects and last year , i thought I would lose my mind it was so bad . Only the othre month , my OH and I agreed that if this summer was the same as last , then I would not go through another summer with these tablets .However , if i can stay on Femara , then that does give me a chance .
Pam , last time i saw my onc , I asked about another AI , but he said they were all the same , ie se would be the same , and so i felt that i had exhausted all my options . To find that there is a difference with Femara , and that I can put up with the other se´s just to have a reduction in the intensity and lengh of duration in hot flushes to me would be fantastic .
I don´t believe in co-incidences , it´s too unbelivable to think that just "out of the blue " my se´s are easing up of their own accord . Has to be the pills . Also , I´ve had so many se´s which may well be due to the fact that I was never on the same tablet two months running .
luvKanga

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Kanga I do hope that you can get femara from our doctor. Yes the main active ingredient is the same in the generics but the coatings etc are different and that can make a difference to how our bodies react/tolerate the drug. I started off on arimidex and had terribly painful knees. Now on the generic anastozole and knees much better but hands painful especially first thing in the morning so can't win. It depends what I'm doing which seems better for me! Your se's sound much worse than mine though so it might be that you need to try another aromatase inhibitor completely.
Maria as you know every child is different and if you have a happy child then you have done a good job. What more could we want for our children.
Pam x

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Par Two .

From the word go I have had awful se ´s .I put up with them all cos you do . The hot flushes were definately the worst as it made me feel so lousy , and needing to wee immediately , plus at the begining they were every hour without fail . After nearly topping myself ( mentally at any rate ) I spoke to my onc , you all know the story and eventually I was prescribed gabapentina , this reduced the flushes to every two hours , which is where they have stayed .
On top of this wa all the other se¨s sore joints especially fingers and toes ,the trots ( still cannot spell it Sandra !) my asthma flared up again after years of no problems , high chloresterol , now angina etc etc . you name it , I seemed to haveit . Then the last three months or so , muy nails got so brittle that they just broke off atall the time and the my face just broke out in lumps , bumps and spots , I fetl like s***!
Last month , for the first time ever I was given Femara at the pharmacia . It should have made no difference at all . It did . What a difference , Although I am still havu¡ing hot flushes day and night , they are much shorter in duration , don´t affect me anything like as much , my breathing is so much better it´s untrue . I just feel better in myself , seem more positive , which is how I always was before this .
The drawback is my joints are worse , my elbows , knees , and shoulders seem to have joined up with my fingers and toes and the cramps are worse , that I cn cope with . I just needed to be able to cope with the flushes .
So , it´s make or break time on Tuesday . No way am I going to take any more Letrozole , there was never any continuity , different ones most n months , then back onto one for a couple of months then a differnt one , thats not good . If your system is fine with it then great , save money , but for me , that did´nt work , why ? I don´t know , but it is so obviously different , that I don´t intend to argue about it , it´s either them or nothing .
By the way , do you like Meerat ? Jackie met him , cute is´nt he , I must try to turn him up the right way .
Love to you all
Kangaxxxxxxxx

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Yes I know he has done well, really. He can ski, ride a bike and swim. He is very happy, although he still misses his Dad, and he is very healthy ( with lots of energy !!) We don't want more than that for our children. No 1 son has acheived a lot (has a phD), but what is important is that he is happy and healthy too. Both of them are wonderful and love their Mum. What more can I ask for ?
Alex, thanks for popping in, you are always welcome.
Kanga, I have not been following your femera stuff, but after "demanding the real stuff, please don't stop, if you don't win. I "know" about generics, we use them a lot here in Switzerland, are they realy not as good ?

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hi marial, sorry to but in on your thread, just to say i think u are a super mum. wont go into detail but have experience of very special children and i can tell just from ur posts ur are doing just a fine job of mum.good luck and lots of love to u all alex xxx

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So don´t knock yourself up Maria , all downs children are different . I worked as a community dental surgery assistant when I worked in the UK and our brief was mainlly school inspections , elderly in care homes and disabled children and adults . I saw many downs children and they were very easy to treat as in the main they were so trusting and so long as you were kind and spoke gently to them there was no problem .However their skills were very wide ranging , some were able to achieve much more than others and you know that, it´s not your fault that Seba cannot read or write , so long as he is happy and contented , and now that he is an adult , perhaps now is the time for him to be away from you a little more . As Sandra says , listern to what he says . We all know that you are a good pperson , go with your instincts .
No Sandra you´re wrong , as Maria pointed out , Heather and I would´nt have noticed that it was´nt M&S !!
We heard allabout the Panorama film on the news here , pretty horrific , but are any of us suprised , sorry to say but I´m not .
Copy and Paste . Maria , that is Blue Peter stuff , too advanced for me I´m afraid .
On a more serious note ,I´m going to see my doctor on Tuesday to ask for ( demand is such a harsh word !) Femara . I do not want to take any more generic versions , and if the answer is "no , " then I am going to stop taking them .
This has come about in a rather round about way , originating from these forums .
There was ( still is ) a thread about Arimidex and generics , Jackie and Pam I believe contributed . I read it with interest cos ever since I went onto "Femara " it has been Letrozole , the generic form , and not from just one laboritory , but from several , at least four and I belive five , alwways from the same pharmacia , I never knew from one month to the next which I would receive , there was no continuity , but at the time it did´nt bother me too much .

I am going to post this before I lose it and then continue .
Kanga

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Maria, speaking as a mother of a child with 'additional needs' (shall we say), any achievement no matter how big or small is an achievement and you must not feel inadequate as a mother (but I do understand what you're saying).

As for 'small achievments' my example:- I remember when my son was five and not speaking and I kept wishing and hoping that one day he would speak - and now he doesn't stop.... I could go on, and I'm sure if you look back over the years you'll see those small steps, albeit small but they'll be there.
It's taken me a year to get my son to have butter on his bread, but hey we're they're now! and it's these small steps that I see as achievements. And when he smiles back at me - well wow! That is a massive achievement and it makes me so happy and another step forward. It's a bit like our journey in some ways - one step at a time.

Each child is unique and no matter what they achieve in life they are still your children and you still love them more than anything, and I know this is true of you. We do our best for them, give them love and hold their hand - just like other mother's do I know, but there's a bit more work with our children - and I just don't see you as being an inadequate mother!

And last but certainly not least is that they're happy, and only you as a mother can see that about your son.
And yes I am fortunate that my son has learnt to read and write but for me nothing can beat them being happy.

Extra ((((Hugs))) for you and your son,

Love Nell xxx

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Little Nell,
Strange anniversaries this year for us this year, and I suppose forever more, but it is better to share them with people who understand. Yes we are in a better place than last year, but we will never be where we were 2 years ago.
And now for something completely different........as the saying used to go........Just to give you something else to think about
I really enjoyed watching James on BGT, I think it is wonderful, but when I see people with learning difficulties doing so well, I begin to feel rather inadequate as a mother, because my no 2 son has never achieved much. I mean there are people with Down's that have o-levels and hold down a job. My son cannot even read and write.
Hope it stops raining soon
Maria xx

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Yes Sandra a def Kanga/Heather moment ,lol....

V Sandra started it, bit like the song "The wheels on the bus go round and round" and then "The mums on the bus go chatter, chatter, chatter"

Carole glad you enjoyed the IOW - mentioning the Red Ferry brought back memories from when we went a few years ago. Enjoy the poached eggs!

Oh Heather, feel for you but not much you can do unles you're with them 24/7; you just have to live in hope I guess - but then we all don't we!

Maria, I never watched either; just couldn't as it's too close to home. Good luck for Wednesday and some (((Hugs))) too.

Izzy good news too x

Jill where are you? We need you on FB! Let's get a petition going ehh girls! Even Jackie is on there now! (sorry Jackie ;o)).

Right off to take OH a cuppa - still in bed probably cos we can't go out on the bike cos it's p*ssing down here - well it is June!!!

Oh yes seeing as I got told off for keeping quiet I've got my mammo on Thursday - exactly a year on from when I was first told I'd need an mx.....

Love & Hugs to everyone,

Nell xxx

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Vickie, yes I noticed, but I didn't even contribute to it !

Sandra, yes definitely a Heather/Kanga moment. But they would have gone on to convince the person that it was was from M&S because they would not have realised as quickly as you did !!!

Anyway its made me laugh, Thanks
Hugs to one and all Maria

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Had a bit of a Kanga/Heather day today. Just before l left to take my Mum to M & S decided l would take back the last top l purchased last week, had a quick look for the receipt but no luck, so popped the top in a bag and off we went. There was quite a queue at the returns, everyone was moaning, as there was more staff standing around than serving.
After about 15 minutes, l was next in the queue, l got the top out and saw the label!! Ahhhh it wasn't M & S!! quickly put it back in the bag and run away!!

Maria, I thought of you when l heard about the Panorama filming! l never watched it, although knew it was on, upsets me too much seeing people being cruel.
I hope your instincts will pick up any negatives in the homes you go and visit. Very difficult l know, l am not sure if the people in Panorama had friends or family looking out for them! I use to work with a little girl with downs, and her Mum always said 'Megan knows who she likes, even though she couldn't talk' So l hope Seba will be able to 'tell' you his feelings, obviously like anything new it will take time to settle in! Feel so much for you, such a rotten thing to have to do, but as you say, it is the right thing to do.

xxx

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Only the ladies on this thread could rack up 130 blummin comments for one post on facebook!!!!!!!

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Hello, Ladies

Maria, sorry you have a conflict going on, but Heather's probably right about getting it sorted, I guess you can have him home quite often, don't know how these things work.
Heather, you seem to have a lot going on. if your FIL and MIL won't take advice, you can't do any more than you're doing already. we didn't get rain on the IOW ( they hav'nt had rain in weeks)but was just cold with an Easterly blowing all the time, good for sailing. it was so windy one day we watched the Red Funnel ferry come in sideways!
I am keeping up with reading on FB, Maria. daughter is doing Race for Life tomorrow but weather forcast not good.
we will probably do the allotment after poached eggs, of course.
going to a raptor experience on Monday, son's Christmas present to his Dad. the rest of us get to be spectators, should be interesting.
Isabelle, hope you have a good holiday-sounds like you good do with a rest!
Nell, so pleased your results were clear.
Sandra, how's the wiggling going?
time to get my jimjams on

Love and hugs

Carol

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Kanga, you must copy and paste or write what you want to say in a document and then copy it here, it will save you a lot of frustration, and save us being frustrated too, cos I know your posts are always fascinating, even if I can't always understand them !!
Heather, thank you for your kind words, as I said on fb, my head knows it's right but my heart doesn't feel it yet.
I have my onc appointment on Wednesday morning and an appointment with the director of the institution for no 2 son in the afternoon. That Panorama program last Monday did not really come at the right time either, and I didn't even see it !! Anyway I'll let you know how it all goes.
Hope everyone is having a good weekend
Hugs
Maria

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Hi ladies I have been about but not had a lot of time to post. I had to finish my end of course assignment for Thursday, and I managed to get it sent off on Wednesday. Thursday we had to dash off to Banbury, FIL chemo was suppose to start Wednesday and they had cocked up. We had a phone call Tuesday saying it had been changed to Thursday, and the person that was taking him couldn't do it Thursday, so me and hubby went down to take him. I didn't go to the hospital though because I have been a very tearful these last few days, so I thought going in a chemo suite and getting upset isn't going to help FIL who was terrified anyway. Hubby went in with him to check it was going to happen, but the blood test they had given him on the Friday was to soon, so he had to have another then wait 2 hours to see if it would go ahead. Hubby stayed because he was at the John Ratcliffe in Oxford which is about 40 mins from Banbury, hubby said it was waste of time him coming home incase he had to go back, and also I think FIL wanted someone there which I totaly under stand. Anyway he had it done, but he wasn't finished till 7 in the evening, it sounds like it is a very strong chemo. Were a bit worried though because FIL and MIL dont seem to understand how important to look after yourself while your on it. Hubby was trying to get through to his mum how the nurse kept saying if you dont feel well ring us, if you have a tempreture ring us, If your sick ring us. After every sentence she just kept trying to make FIL understand to ring them, so hubby told his mum and she said he'll be ok, hair pulling out time. They told him to keep out of the sun, or if your in the sun use high factor sun screen or long sleeve shirt and wear a hat, yesterday I rang to see how he was, he was ok had been in the garden, I asked if he had put on sun cream or worn the right clothes, she said no, it will be ok, so really there is nothing more we can do only keep nagging and hope they listen and nothing goes wrong.
Vickie, so glad you had a good holiday, and have chatted to you about Take That and screaming daughter lol
Carol, sorry you had a wet IOW,
Jackie I haven't seen you on face boook, will have another look.
Sandra, you deserve a nice skirt, so go strut your stuff.
Kris. I like the sound of those books, that is one reason I did creative writing. I have started to write my life story for my kids and grandchildren. All my last 3 assignments have been life stories, I had do an activity during the course. I had to write 200 words about someone I knew and 200 words about somebody I didn't know. I chose my dad first, and I chose Ladybird Johnson, former president of the USA's wife. I found out more about Ladybird Johnson than I knew about my dad lol I knew a lot about my mum, but nothing about my dad when he was growing up, thats why I am doing my life writing so my kids know everything about me
Isabelle, I saw that your mamogram was ok, that is fantastic, and I hope you enjoyed the baby sitting:-)
Nell, brilliant news abiout your bone scan. you naughty girl keeping it secret, psssssttt how many G&T's did you have lol
Maria, my dear Maria I hope your feeling a bit brighter, you have had a rotten couple of years. Part of me understands how your feeling about your son. My SIL's uncle had problems, he lived at home with his mum. When her husband died she kept him with her but it was hard work.Another son and his wife helped out with him, so when SIL's grandma took ill and died quite quickly the family didn't know what to do. The other brothers and sisters wanted to find him some place nice but this one brother said no they would look after him, and the family thought they were thinking of the finacial help they would get. Well because they had only had him for a few hours a time before, when he was with them full time they couldn't cope. Then 2 weeks later they rang round all the family saying they couldn't keep him and he had to go the next day. Well as you can imagine it was chaos and he had to go into this emergency place which they said was awfull. Anyway the following week they went looking at places and found him this really nice place. He has been there about 6 years now and he loves it. What I am trying to say Maria, it must be an awfull time for you, but if your son is sorted you will feel a weight as been lifted from your shoulders. I really hope things get sorted for you (((hugs))))))
Well ladies sorry if I have missed you, I might have a bit more time now my course as finished,
Take Care,
Love Heather'
xxxxxxxx

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Every B***** time I write a long piece the blasted thing dissappears before my eyes , and unlike when I´m doing an email I can get it back on this pigging thing it just goes . B***er !!!!
So frustrating , it was important as well .
I´ll try tomorrow , just going to go and throw the computer through the window and kick my OH .
luvKanga

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Carol, we seem to be on fb more often these days. What are you up to this weekend ?

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UTM-page 4!!!!!!

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Been trying to read and catch up before posting but is taking so long that i think i'mbest off just posting! I'm sorry to see its a sticky (read cr@ppy for sticky) time for so many of my cyber saviours. Hugs to you all but spevial big hugs for Karen and Maria, and a half hug/half telling off to Dee. We are here to help you through the worryinv bits you buffoon!!!!!

I have had a great holiday, met lots of lovely people. My son made a lovely new little friend, his family were same age approx as us so we spent a lot of time with them. They've had an horrific 5 years health wise, and it kind of helped to meet another family who knew how hard life can be. You'd never have known looking at the four of them and they didn't have aclue about us/me either!

I've put my snaps on fb if anyone wants a nosy.

Right, off to sleep. Big day tmrw.......de de de de de de de de take that, and party!

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Hello Ladies,
I hope you are all having a relaxing evening. Maria, I hope you are feeling a bit brighter today, sending you lots of big hugs, as Sandra and Karen have already said if you would like to have another bc buddy to chat to, please feel free to send me your phone number any time. I love a good chat, will probably bore the pants off you but I'm here if you like xxx extra BIG hugs xxx
Nell, I'm pleased that you got good results from your scan, everything is such a worry after bc isn't it?
I got my mamogram results today and they say that they are 'satisfactory' can't ask for more, such a relief...
Loverly to see that Vickie has had a great holiday, love your holiday pics Vickie xxx
I'm babysitting tonight,just for a change!!! Boys all in bed, having a bit of peace and quiet for now.
Went for a check up at the doctors (gp)this morning, before my letter came, all ok, next app 2 months time.
I've been sorting out my packing this afternon, hols on Monday.
Best Wishes and lots of hugs to all my virtual family xxx

Isabelle

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Right , I´ve been and gone and come back again , if you know what I mean !

Karen was talking about starting a memory box , and I think we all thought this an excellent idea , no matter what our current state of health .
Someone mentioned a 100 year diary ,( how great to be able to fill in all those pages !)

There´s a company called the handpicked collection ,www.handpickedcollection.com and they have what looks to be a beautiful book called "My Life Story " which allows you to fill it in with pictures etc . it´s 34.95 , but if it gets you on the right path , it may well be 34.95 very well spent. I´m thinking of ordering one for myself to collect when my OH comes over in August .
If it is as good as it looks , then I would be happy , cos it ´s a start , for me , to begin first then perhaps a ,memory box .
luvkanga

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So sorry to hear that you´ve had these worries Nell , as Sandra has said many times this really is a rollercoaster of a ride , never ending .Glad all is well , and for you Anne , ever real thing is frightening is´nt it . years ago , when we were all fit and well , we never gave ill health a thought . My best friend had a thermal imaging scan done last week , it picked up a hot spot where she has quite a prominent mole . The results are now back from the states reccommending that she sees her own health care provider for futher tests and she is absolutely bricking it !! Says she knows now how I felt . It´s going to be a tense time until she has an answer .
Such a sad time for you Maria , and what a turmoil , you want to do your best for your son , but what is the best ? Go with your gut feelings , thats always the surer way , and as Sandra saays , if it´s not the right place , well you can find another , so long as he is happy , thats the mmost important consideration , so sad for you though.
Hey Jackie , on FB at last ! Well done , you knew I coul´´nt help you , dongles , are a new language for me , it sounds like the appendage on a male donkey , but I´m sure your not trying to plug one of those into your laptop ..............are you ?!
I heard yesterday that Archie has not been promised a definate home in Holland . Have to get more information tomorrow .
It seems a bad time for many of us at the moment , thank goodness we have each other, at least we can all spill our hearts out here and on FB without censure from people who just do not understand.
Sending you all ((((((HUGSSSSS))))) as some of you are in dire need .
luvkanga xxxxxxxxx

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(((Hugs))) for you too Nell, for all your worries!
so very pleased they turned out to be nothing to worry about xxx

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Gosh Sandra your post to Maria was so touching and it really went deep with me; and my heart goes out to Maria.....

Just feel for everybody and I've cried buckets tonight - of relief I think cos I had to have bone scan last week and was too scared to tell anybody (even my bf and bright face for OH) as had constant ache in neck and shoulder for weeks now so onc arranged for bone scan - and it came next day so straight into vomitville for a week until results through today and all ok - hence the g & t tonight....

anyway straying off the subject, just want to say thinking of maria and Karen and (((hugs))) to all and off to bed .....

Love & Hugs Nell xxx

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Hi Ladies,

Maria, sorry you are on that emotional rollercoaster! Like K l am more than happy to have your number and chat, and it can be about nothing in particular! The weather, the shops! Just to take the lonely times from you! Not sure l can offer any advice with regards to number 2 son. I am sure you have thought about that moment many times, even before you were diagnosed with bc! The placement they have found may not be to your liking, so as much as l know you would like to see him settled, you know you don’t have to accept this placement! But on the same understanding it might be somewhere he and you really like.
And it would be good to see him settled. I am sure it will take him quite a while to settle in, and if it doesn’t work out you have plenty of years to find him somewhere else!

Having him in a ‘new’ home will reassure you and of course number one son! Because he also needs to know his brother is settled somewhere he likes, so then he hasn’t that worry, bad enough worrying about his Mum without worrying about his brother too!

And it will also give you extra time to spoil your grandchildren when they come along!!

You are bound to feel lonely, you have always had the company of number two son. You have been through more than anyone deserves to go through, with your bc and your husband’s cancer, the return of bc, then the loss of your dear Mum, and the worry of your niece and more results and another operation! And now work!! What are you some sort of superwoman?
Try not to push yourself Maria, sometimes we push ourselves to the edge, and then we are exhausted, l know done that!

I don’t know if you a have any close friends near to where you are? I know people have their own lives and families, perhaps join some type of club, not sure what your hobbies are! Probably never had time for any, but if you have perhaps you can join a club relevant to the hobbies!

What day is your onc?

I went shopping today, bought a skirt, then spent the afternoon worrying about spending money on things l may not get any wear out of! Just can’t help it can we! Such a worry!

My hula hoop girl is the ‘new’ me! l have started hula hooping!

Hugs and more Hugs Maria (((HUGS))) and some for under your pillow (((Hugs)))
xxx

Oh Gosh Anne, Pleased you had a good time, but sorry you had the worry!! never far away is it!! hope the new lot of antibiotics work!
xxx

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Hi everyone...just back from my break at Hebden Bridge with SIL.We had a good time whilst there at the festival and popped to Howarth and had a walk at some Craggs.

Have today booked a holiday to Torquay for 16th June for DH and myself as think he needs a break.

On the breast cancer front...I had a big scare today as my nipple started leaking fluid and as also gone inverted...so rang my BCN and went to see her and my surgeon this afternoon..they think it's an infection from the lymphodema in my breast so I'm back on antibiotics again and they've postponed my lymphodema appointments until it clears up.The surgeon seems to think it will settle...I hope he is right.

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Maria,

i have read your post on facebook and have tried to reply twice but not sure you have got my message. Please pm me you phone number and I will ring you. Sod the cost you need someone to tell you how wonderful you are even though you don't feel it right now. If you did get my message you will know that my Mum and Dad went through the same as you with my brother and he is so content now. Nothing i can say will make it any easier but I really feel that you need to talk right now and am here for you so please let me have your number either through facebook or BCC pm

sending massive hugs, hugs and more hugs to a very special amazing lady.
xxx

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PS
Jackie, wonderful news
Sandra, I love your hola hoop girl
Nell, I love your motorbike lady too.