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Xeloda / Capecitabine - Your Top Tips, please?

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Community Champion

Re: Xeloda / Capecitabine - Your Top Tips, please?

Just popping in to send Carolyn a big hug and to say you have cheered many of us up over the last 2 years - chocolate teapot you are not !!! Hope you are comfortable and feeling loved and supported .

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Community Champion

Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi to all Cape Crusaders but mainly sending big, gentle hugs to our lovely Carolyn. I’m so sorry to hear the news you have been given and wish you strength to cope. I do hope you are getting good care either in the hospital or maybe a local hospice? Please do keep in contact if you are able. I’m sure all of us are, in spirit, standing around your bed, eating your chocolates (I’m sure there wouldn’t be any grapes!) and helping however we can. Thinking of you and your family.

To Ramade, I’m sure someone else had problems with clots to the lungs whilst on Cape but I can’t think who or when, possibly our lovely Moijan who was on this drug at some point? It is known that blood clots are more likely whilst on cancer treatment but what a shock for you. I do hope you recover quickly and can start the next cycle. Sending gentle hugs to you as well.

Good luck to all of you ladies waiting for scan results, always a worrying time. Fingers crossed for good results all round.

Nicky x

 

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Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Dear Carolyn ( my namesake...I'm Carolyn too )

So sorry to read your news...you are very brave and I imagine you are still keeping a smile on your face.

Hope the Drs are wrong and you are with us for a long time to come. You are in my thoughts and prayers.

Lots of love  GG xxxxxxxxx

 

 

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Re: Xeloda / Capecitabine - Your Top Tips, please?

Morning Ramade 

 

Pleased you seem to be getting sorted and able to go back on cape. I was not aware it could cause lung clots. Think the oncologist should tell us it can happen. Only thing I can remember being told it was well tolarated . 

 

Good luck for Wednesday . 

 

Linda

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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi everyone,after a long break for side effects i am hoping to get back on 3rd cycle of Cape on Wednesday. Now i just wanted to warn everyone that if you get real shortness of breath like i did,climb 3 stairs and panicking that i couldn't get my breath- this requires serious help. i did not realise and by the time i saw onc they rushed me in for chest x ray and ct scan, result treatment for clots on both lungs which were life threatening.

hope this helps

love to all

Ramade x

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Community Champion

Re: Xeloda / Capecitabine - Your Top Tips, please?

Lyndloo, Yes kidney function improved in most areas. I only had a few,days of the changes I made. Hoping when I go back in April it will show more improvement. The levels  are hanging on the edge of normal.  But I passed!  Now to keep up the changes. The loo and I know each other well.FF

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Re: Xeloda / Capecitabine - Your Top Tips, please?

Carolyn, so sorry to hear your news, hope you are being well looked after, sending lots of love and hugs

Bon xxxx

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Re: Xeloda / Capecitabine - Your Top Tips, please?

Yes sad as high hopes on it ...chocolate tea pots are lovely but the spout gets a bit tough !!!! It's like having a fireman with a wooden leg !!! Think about that one xxxx

Anyway night night ..sleep well ..I have antibiotics masks on  ....phew they will soon fall off tonight. .

 

 

Xxxxxx🍟🌽🍨🍦

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Re: Xeloda / Capecitabine - Your Top Tips, please?

oh Carolyn, i'm so sad to read your post. Could you go on a trial perhaps? i do so hope that they manage to help you and make you comfortable at least. i hope your husband is holding up too. big hugs to you both and bless you. 

Ramade xxxx

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Re: Xeloda / Capecitabine - Your Top Tips, please?

Carolyn..........thanks so much for messaging us here on the threads. We all do like to know what each of us are doing. So sorry about cape, and despite everything you are sounding strong and positive. I won’t start cape until next week..........have had nothing that worked for a long time now. Maybe cape no good either! We’ll see. But like us all I will give it a go. Seeing little Anna on Sunday. Squeeze those babies of yours hard! Lots of photos with gramma! Keep in touch if you can. We love to hear from Carolyn!

 

all the best to everyone else, including ff, and stillhere! Keep posting. 

 

mo.      xxxxxxxxxxxx

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Re: Xeloda / Capecitabine - Your Top Tips, please?

Sending you big hugs Carolyn, I am saddened to see that you are so poorly and hope that you can spend as much time as possible with your family especially those beautiful grandchildren Heart

Am thinking of you, love Helen x

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Re: Xeloda / Capecitabine - Your Top Tips, please?

Afternoon Ramade

 

Thank you for your reply regarding the problem with your lungs. Hope everything settles down and you are able to start the treatment again. 

Good luck. 

Sending u a hug. 

 

Linda

 

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Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Afternoon Carolyn

 

So sorry to hear you are back in hospital and given such awful news. Hope something can be done for you. 

 

Sending a cyber hug. 

 

Linda 

 

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Re: Xeloda / Capecitabine - Your Top Tips, please?

Afternoon Funnyface

 

Hope your kidneys are OK and you are able to stop on EE. It worked for me for 3 years 8 months . Got fingers crossed it will do the same for you. 

 

Linda 

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Community Champion

Re: Xeloda / Capecitabine - Your Top Tips, please?

Carolyn, We love your craziness! It put a smile on our faces and we all need that! I need a chocolate teapot! FF

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Community Champion

Re: Xeloda / Capecitabine - Your Top Tips, please?

Stillhere, It's great to hear from you. I'm doing OK. Waiting to here if my kidneys are functianing OK. Other than that hanging in there. I'm still on E & E. It will be 2 years on it soon. That's wonderful the trial is still working. What drug is the trial for? The longest I got out of a chemo was 5 years out of vinorelbine. Good luck. FF

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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hello still here. .how nice to hear from you. Cape didn't do anything at all and lM in  hospital .liver very swollen. .lungs got fluid but can't drain it ..they say I only have a few weeks . .I accept this as I have not quality of life anymore 

So thank you ladies for putting up with me and my useful banter zxxx

 

 

 

 

 

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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi Carolyn and FF, it's lovely to see you both still on the forum! Feel a real oldie these days! Carolyn, I'm sorry to hear Cape is no longer working but I hope that there is another option and that you are getting good care in the meantime. Living in pj's sounds good and I hope you are still having a daily chocolate fix?

Hope all still well with you FF? Is your wildlife menagerie still with you? I have a very tame pheasant now.

I don't come on the forum much because I'm still stable on my trial after almost 3 years, I don't know how it's happened but I'm blessed and very grateful. I think I'll be off before long, taxane chemo next probably. Take care everyone xx

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Community Champion

Re: Xeloda / Capecitabine - Your Top Tips, please?

Carolyn, It's good to hear from you! Hoping you are cozy with good care, yummy food and comfy PJ's. Wish I could deliver Kentucky fried chicken and chocolate. FF

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Re: Xeloda / Capecitabine - Your Top Tips, please?

Dear Carolyn

So very  sorry to hear that Cape not working for you and  hope the doctors have other things in their kit bag that will work some magic. You do so deserve it . I love reading your posts.. you  are always so positive . helpful ,wise (and funny!).  Please let us know .

Big gentle hugs from another non sleeper

xxxxx :

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Re: Xeloda / Capecitabine - Your Top Tips, please?

I was just hoping cape would be my magic pills but oh no ..it's fallen out with me ...  never mind will keep in touch as much as possible. ..xxxxx🐕🐕🐕🐕

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Re: Xeloda / Capecitabine - Your Top Tips, please?

thanks lyndy, i'm glad you're doing well at the moment. yes it was the cape, i'm so low at the moment that i'm not sure i want to go back on it but there's only trials left i think. maybe i could manage a really low dose. C arolyn i know your dose was dropped i do hope you are starting to pick up now.

big hugs

Ramade x

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Re: Xeloda / Capecitabine - Your Top Tips, please?

Afternoon Ramade 

 

So sorry to read you are having such a bad time of it. Were the clots on your lung caused by cape then? I was only on cape for 10 months before it stopped working . 

Looking back I was really lucky I suffered few side effects. Don't know whether you are aware I ended up on weekly paxlitaxol for 12 weeks which finished in October last I am now on tamoxifen which seems to be working had CT scan results on Monday everything stable. 

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Re: Xeloda / Capecitabine - Your Top Tips, please?

hello everyone and thanks for your replies, yes i started with the discreet pads and then had to move on to more water holding ones.infection being treated but still not back on cape because of this then just to make things worse i have clots in my lungs so hubby having to give injections every day to break them up, then back to hospital tomorrow for ct scan to look at those and sludge in gall bladder, i'm a right mess basically and have only had 2 cycles of cape. i want to start soon on a reduced dose 3rd cycle but need all these other things resolved first onc says.Glad most of you are managing.

to all you brave ladies, much love

Ramade x

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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hello everyone

This is my second attempt at posting, first one vanished , so fingers crossed.  Never brave enough before but  have been an avid reader since my secondaries  (bones and liver) diagnosis in July 17 and I've drawn so much comfort and reassurance from all your posts thank you.  I felt much better when I read this thread and realise I'm not alone! I have to rush to the loo, almost not making it and thought it was just me or my age (67) But on my 11th round of Cape so that must be the answer. I'm worse in the day hut drink lots in tbe morning. As you say belts are a real hindrance!  However if the peachy pills are working I guess it's a small price to pay. Never thought I'd be a  Tena lady!

Good luck to all of us on Cape and thank you for your lovely positive outlooks . I'm sure there are lots of us silent watchers who get so much from your posts.

MaggieB x

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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi again

Bon & GG. I have exactly the same ‘problem’  having to rush to the toilet, mine is worse st night as well.  During the day I manage okay but sometimes it is very urgent....I no longer wear trousers which need a belt!!

hopefully starting my 8th cycle tomorrow- had diarrhoea for most  of my week off - not too bad though.

seems the SEs are similar for a lot of us.

 

xx

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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi Graceland

I've been having trouble with unpredictable peeing, sometimes I'm OK, sometimes I'm taken short and it's a nuisance being woken up at night. I try to drink a lot which is supposed to be good but does lead to more trips to the loo. I can put some of it down to being old (72). Perhaps the best thing to do is to take the bulk of the fluid intake in the first half of the day.

Bon, with legs crossed xxx

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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi Ramade, sorry to hear about your urinary problem. So miserable. I dont think I have an infection, but since being on Cap I am out of bed at least 3 or 4 times a night to go for a pee...in the day I can hold it, but come nighttime, I have no control at all. I barely make it to the bathroom ( sometimes I dont make it I'm embarrased to say)

Hope you are feeling a bit better.

Love GG xxxxxxxxx

 

 

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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi everyone, just wondered if anyone is suffering with urinary infections and how they are treated when on cape.

really suffering here.

hugs to all

Ramade

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Re: Xeloda / Capecitabine - Your Top Tips, please?

Lovely to see you on the thread again, Carolyn! I totally agree about one’s own bed at home. I also hated the hospital bed.........mainly because it was in the hospital. But you are now home and dry. I know you will feel better when back on the peachy pills, but I can see that people often have breaks for one reason or another. I will have to have a break to have my kidney stent removed in a couple of months.........haven’t even started the pills yet!

 

i see the nurse & pharmacist on the 15 th to get my first pils. Nobody rushing. But it gives me 2 weeks of normality to Go! I have tubs and tubes of creams and moisturiser, and am doing my homework reading old threads. Thank you everyone for your good advice!

 

take care, Carolyn, and do try to keep us posted when you feel like bothering. It’s good to ‘see’ you here. Squeeze your twins for me. I had my little Anna last weekend..........late Christmas, so .lots of pressies! Then play, play, play. Shops, teas, cafes, are her favourites. Had to be careful about change this time..........just swapping toy coins wasn’t good enough! I was prepared to waive the change but she wouldn’t have it!

 

mo.................xxxxxxxxxxxxx

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Re: Xeloda / Capecitabine - Your Top Tips, please?

As I've been bedridden for 4 weeks I just wear baggy pj's now easy for toilet etc ..still waiting to hear about starting cape chemo pills ..I have felt ok on them after 10 cycles and hope they do some magic

 Just thinking. About pussy haven't heard from her for a while. ...she was taking cannabis as a last minute treatmenit. .hope she's OK. Xxxxd🐥🐥🐥🐥🐥🐥

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Re: Xeloda / Capecitabine - Your Top Tips, please?

so glad you are home Carolyn.rest and enjoy eating anything of what you like

hugs

ramade

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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi All, Hoping this post doesn't disappear like the other 4 I posted earlier in the week...so annoying.

Carolyn....I hope you are feeling better.

I had my review this week and TMs had gone up slightly, but The Onc okayed my next cycle of Cap.

On my week off, I had cotinuous stomach ache and went from constipation to diarrhoea alternatively I also seemed to get my stomach ache more after eating or drinking. Also I get so bloated . I feel like I'm bursting and have to hold the waistband of my clothes about 6 inches away from my stomach to make me a bit more comfortable...at the same time, I want to eat something. It's making me a bit scared to commit to going to Memphis in May. I dont want to spend the time in a hotel room as I dont seem to have the energy to do much walking. My heart says go and my head says dont be daft !

I hope everyone reading this is feeling ok and sending you love and best wishes for a good weekend.

GG xxxxxxxxxxx

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Re: Xeloda / Capecitabine - Your Top Tips, please?

Thanks ...love my own bed ..hospital beds worry me I will fall out. I'm on no medication at moment. ...just morphine spoon before bed and 2 paracetamol. ..hoping for my peachy cape pills again soon

 Nurses in twice daily for wash and clean pjs eto.  

Waiting for scan results but only done Wednesday so early days 

Gorgeous weather here xxxxx

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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hello again Carolyn..pleased to hear that you’re home....there’s nowhere as good as your own bed is there?

your platelets have gone up well I have been given my pills with that reading...fingers crossed 

don’t do too much too soon and take care

Xxx

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Re: Xeloda / Capecitabine - Your Top Tips, please?

Yes at home in my bed ..nurses coming twice a day. ...not back on chemo yet though.  Hoping to get a call from hospital to collect new supply ....platelettes back up from 88 to 124 ..looking good .

Xxxx

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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi Carolyn

Glad you're home. hope you are being well looked afer. Hope scan results are good. Tried posting earlier but it seems to have disappeared.

love to all Bon xxxx

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Re: Xeloda / Capecitabine - Your Top Tips, please?

 
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Ta

Ramade 
Good to hear from you 
.....aRe u still getting double vision and the wobbles ....it's horrid. I'm home from hospital. . Strange bloods good ..blood ptessure good. .no more chemo at moment but keen to get back on the peachy pills....the cancer must be partying inside Me. Waiting for scan results done yesterday that they are giving priority .
Xxxxx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi everyone,

 

Thanks for alerting me to your posts going missing - I think what could be happening is the login prompt triggering too late. 

 

At the moment the system allows you to type a message even when you're logged out. Then, rather than posting the message, it says "oh, you're not logged in" and quits - not very helpful! 

 

I've updated this setting so that now as soon as you hit reply, it checks that you're logged in and prompts you to do this if you're not. Then it allows you to write and post a reply. 

 

I've just switched user to pose as those of you who were having problems and it works. 

 

Could you let me know how you get on the next few times you post to check that this solves the issue?

 

I've also disabled the robot checker - it's now only in use at registration stage rather than every time you post. 

 

Thanks very much, 

 

Becca at Breast Cancer Care. 

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Re: Xeloda / Capecitabine - Your Top Tips, please?

Carolyn........sending best wishes. Thinking of you and hoping everything settling down now. Perhaps you are back home? Give your body a chance to heal. I am seeing my onc tomorrow and he will probably start arrangements for me to start on cape. Then I will be an official member of this experienced thread! L plates.

 

so.........take care, Carolyn. Sending hugs.........and all the best to all the others visiting here,

 

mo.         xxxxxxxxxxxx

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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hurray I've managed to post after several days of failure.

Bon

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Re: Xeloda / Capecitabine - Your Top Tips, please?

Thinking about you Carolyn. Take comfort from the good care I'm sure you are getting.

Lots of hugs Bon xxxx

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Re: Xeloda / Capecitabine - Your Top Tips, please?

Morning Carolyn

 

Sorry to read you are in hospital. Hope you get home soon. 

 

Must have been really scary for you. 

 

Sending a cyber hug. 

 

Linda 

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Re: Xeloda / Capecitabine - Your Top Tips, please?

carolyn,love to you and thinking of you. i hope you are soon home where you can get some sleep and hubby can cook you just what you fancy

hugs

ramade

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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hello Carolyn, just to reiterate what Mo has already posted.  Hope you start to feel better soon, hopefully you are able to relax and have a good rest.  Hope the steroids aren’t affecting your sleep

 

hugs from Lynne x

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Re: Xeloda / Capecitabine - Your Top Tips, please?

Thanks for updating us Carolyn. Like everyone I was wondering what you were up to! Hopefully the rads will do the trick........thats the idea! Chemo stopped? From reading this thread cape is often stopped when other things intervene then restarted when appropriate. I assume you are in recovery mode now. Wow........they are prescribing the steroids! Just keep taking them. If pain was a symptom I hope that has settled. If you are still in hospital just lie back and enjoy the room service.

 

basically we are thinking of you and hoping your recovery is steady. Love and hugs,

 

mo.       xxxxxxxxxxxxxxx

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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hope this posts ..I have tried the threads.  It vanishes in cyber space .

In hospital had emergency radiotherapy for spinal compression. .chemo stopped and I am on 17 steroids tablets a day.  Feel like I'm living in Moo Moo land ..

 

Anyway ladies I still here 💟💟💟💟💟

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Re: Xeloda / Capecitabine - Your Top Tips, please?

thankyou all for your kind comments. Lynne glad you had a nice holiday. Carolyn is your lower dose working just as well. Bon can i ask why they gave you a blood tranfusion.

i have tried several times to send posts of thanks but the site steals away my posts. i'm actually getting quite upset about the site problems because this is such a lifeline and it used to work so well. i see others are having problems aswell.

Anyway hopefully it will be fixed soon.

hugs to you all

ramade xx

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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hello everyone.  Carolyn  and Ramade Sorry to hear that you have both been so poorly.. hope that you’re feeling better now and that the bed rest helped Carolyn.  Dehydration is horrible, I had it many years ago when I had food poisoning so am always wary, as you say Ramade it’s best not left too long.  Also Bonariensis..hope that you are continuing to feel better after your transfusion....do you mind me asking why it was given...had your bloods gone to a really low level.

Been away for a week to Spain, we just pottered around and sat in the sun...with hat and lots of high factor sunscreen...but it was a nice break.

I had to miss my 7th cycle but recommenced it last Friday.  During the break my hands healed I was worried that my TMs would increase because they did rise dramatically last summer when I had a 7 week period with no treatment.  However they hadn’t- in fact they fell a little.

Feeling a little tired since started this cycle but not too bad.

Hugs to everyone 

this is my third try to post, when I tried to view in a pop up my post just disappeared so am going to hope this one works

 

Lynne