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Bone mets - please join in

2catlady
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Re: Bone mets - please join in

I'm so sorry to hear this dreadful news about Lulu. She was a wonderful ,supportive ,lovely lady who was a great friend to many on here. She will be so sadly missed by us all.
I send all my love to her family at this extremely sad time.
RIP lovely lady xxxxxxxxx Helen xxxxxxxx
funnyface
Community Champion

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Lynnq, Wondering where you were in USA? I live in Pennsylvania. Funnyface

JulieD
Community Champion

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I have passed on the condolenceslove and support on the BCC site to Lulu's sister and family. As you can imagine there have been lots and lots of people expressing thier sadness and telling how much of a support and inspiration Lulu was. I hope that the outpouring of love will be of some comfort to her family

LemonDrizzle
Member

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So sad to hear about Lulu. Only 'talked' with her a few times but it is obvious she was well loved. Heartfelt condolences to her family and friends x
roxy12
Member

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Hi Julie, thanks for letting us know about Lulu.would you pass on my condolences to her family? She was a very brave strong lady. R.I.P Lulu. Xx

rosie53
Member

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Oh Julie i am so sad to read about Lulu, i wasn't very familiar with her as i have only been posting on here since April last year.
Please give her family my love, my thoughts are with them.
Hugs Janette x x
Lucy_BCC
Member

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So sorry to read this news about Lulu Julie, please pass on our sincere condolences to Lulu's family and friends from all of us here at BCC, she will be sadly missed and has been a valuable member here for a long time

Lucy BCC

JulieD
Community Champion

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Lynnq, good to have you back and pleased to hear you had a good holiday. Don't overdo the washing, it can wait! Where did you go, what did you do? Glad you enjoyed it and had energy.

 

I'm afraid I have sad news about Lulu. She died this afernoon. She was at home and had her family around her, she was comfortable and peaceful. She will be missed by many.

Mermaid007
Member

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Baggy I colour in his chest! Omg I had my ovaries removed years ago but think they returned last night while watching him unlace that dress!! Lol
LemonDrizzle
Member

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Sorry Chocolates but I missed your reply at the weekend. Yearly scans show just how well you're doing on this treatment - it's fab news x
Lynnq
Member

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Hello everyone. Back from our holiday in the deep south of the USA....had a good time, felt really well most of the time, hardly any aches .... I wonder if adrenaline keeps me going when away....been achey and tired since I got home but expect jetlag and the overload of laundry have contributed to that....refused to wash clothes on hols....told OH to take sufficient with him.

Just done a quick read through all of the posts since I was away.

Helen...what a time you have had....glad to hear that you're home from hosp and that they have finally discovered the cause of your pain....hope the rads blast it away quickly.
Bev....so sorry to hear your news - hope you had a Good weekend away and that your treatment plan can be sorted soon
Sheila. Hope you're doing okay as well. Any results from the MRI?
Marie welcome ... These posts keep me going and I am sure you have discovered how helpful they are already.
So sorry to hear about Chris & Lulu...my thoughts are with them.
Stresshead - I have had chest pains on Letrozole...ended up in A&E one time, but they found nothing untoward and put it down to really bad reflux.
I have my zometa infusion on Thursday and also my 3 monthly consultation with the onc....i have been stable now for almost two years. Like Macie and Helen44 I feel a little guilty because so many of you have had real problems just lately. Hope I can inspire someone.
To anyone else who I have not mentioned hope you're all well and warm wishes on the way. Anyone waiting for results, scans etc. hope the waiting isn't too bad.
Take care xx
belinda
Member

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Ye olde Ross Poldark also has his own website,
http://robin-ellis.net/
I see a gap in the market for a "Romantic Cornwall with Poldark" colouring book.
roxy12
Member

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Do any of you know that the judge in last night's Poldark was the original Ross Poldark? I didn't know but hubby had seen it somewhere. Xxx

 

LemonDrizzle
Member

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Belinda, the colouring book looks lovely. Thanks for the tip - I've just ordered that and the secret garden for my daughter's birthday.
Stillhere, your mantra makes more sense than my 'not snuffed it yet'!
Oh Helen, poogate sounds horrible, I'm sure BG will help you to find some positives from it though. Hope you're feeling a bit better today and on your way to becoming pain free. Can't wait for your next instalment of your hospital story!
Hoping everyone is having a good day
LD x
Stillhere
Member

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He's mine, mine all mine! Pistols at dawn again but I think we all been shoved off the perch by a certain auburn -haired beauty last night, nooooooh!! I'm only 3 times her age.......
To everyone having a hard time, please be strong with my mantra...where there is life, there is hope...lots of best wishes. Xxxx
2catlady
Member

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Oh,Belinda,I've just had a look at book. Oh sooooo pretty. That may be in basket today hee hee xxxxx hugs,Helen xxxx
Marie123
Member

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I am glad to say that Ross is definitely mine, I will let Chocolates have George Warleggen ! Marie

Barton
Member

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Good grief, Helen! That sounds absolutely disgusting (poogate, I mean). Yeugh!!! Other ladies seem to have been nice, though. Glad someone was treating you as human, not like your Onc! Glad you are home safe. Take everything easy. Chocolates and Marie, how did the pistols at dawn go? Who won Ross? Good luck to anyone having tests, results, treatments, etc. Hugs. Barton.x

belinda
Member

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Oh my goodness Helen, sounds more like a Bear G challenge going to the hospital bathroom.
Has anyone treated you to the new Johanna Basford "Enchanted Forest"? If not do treat yourself. 🙂
I have always found pain gets worse but then gets better after rads so hope you start to feel the benefits soon.
Good Luck to everyone waiting for treatment to start, results, appointments this week. X
2catlady
Member

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Good morning lovely ladies,who keep me sane and positive. I've missed our chat so much xxxxxxx you are all fantastic xxxx

Pain a bit rough at moment after rads. I opted for a trial of one off high dose instead of 5 smaller doses!
Nurses at hospital great and friendly even scary one but communication dreadful between staff. Sometimes waiting two hours for pain meds. I did take my own stash in and didn't tell them. Macmillians nurse said that was okay as I knew how to control my sickness symptoms .

Well now for poo gate story.💩💩💩 Met two lovely ladies on ward,one got me through some crying under blankets times and was a blessing( we were all teachers and TAs too!!!)
Well,in night you tend to be a bit of a zombie trailing to bathroom. So the younger teacher and I had been doing this and also had shower in morning. We both never noticed "Marks and sticky floor". Well older teacher came back from rads ( she went down very early) and said please tell me you haven't used bathroom or walked through "marks" on floor. We both said yes and showered! Well apparently marks were poo trailed out over ward floor on odd ladies slippers and Zimmer frame and poo was all over floor in shower room/loo. Matched colour of floor in bathroom so apart from sticky didn't notice!!Well you can imagine our faces. We were hygiene gelling our feet,rubbing it on slipper bottoms. Then odd old woman came and sat on my clean freshly made bed and started fiddling with my colouring pens !💩💩💩💩 yikes. So I started to gel wash my pens. Then nurse came in and we told her about "mess" bless her she changed my bed again and moved odd woman to cubicle. The strange thing if you went to loo she'd get out of bed bang on door and say get out that's my loo I have diarrhoea . Nurses even showed her other loos to use. So let's say she wasn't a miss when they moved her and air was fresher. Loo and floor eventually got cleaned at 11:00!
So glad to be home.

Well in off for wig today,yikes !hope they still have Elsa wigs in lol. Hair is coming out in bunches now. I'm hanging on to hope I'm the 25% that keeps it but I think I'm kidding myself oh well it's the last time I'll ever have hair again 😭.💇💇
I'll catch up later. Massive hugs to the most fantastic bunch of ladies I've ever met xxxxxxxx Helen xxxxxx

Chocolate,oh a bed bath from Mr Poldark😻😻 hee heee.
Ladies ,I hope my hubbies have been behaving themselves while I've been gone and you have kept them busy !!🙈🙉🙊
funnyface
Community Champion

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Helen, Glad you're home! Gosh what a time you've had. I hope you can find a new oncologist after this mess. You deserve better treatment! Rest up and get some strength back. Gentle Hugs! Funnyface

Chocolates
Member

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Hello ladies, lovely bright day here. I hope the sun is shining on Bev in Tenby. Helen, hope the pain is beginning to settle. I know you - your absence means you are struggling. Keep popping the meds - it will get better shortly. I suppose depending on the position it may also up set your tummy. Really hope you feel better quickly xxx
My last weekend before we break up for Easter hols. I'm really tired - desperate to finish. I need to recharge my batteries and sleep, sleep and more sleep. Good luck all for the coming week. Sheila fingers crossed things happen quickly this week. Nicky - how lovely to get away. You are an inspiration to us all. Helen hope we'll have you back this week to keep us in check.
Marie - I have no words - it looks like there is only one way to settle this. I'll meet you at the top of the hill at dawn!!!

Huge hugs,
Hxxx
Marie123
Member

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Hello,

So sorry for all having a bad time, you are in my thoughts and prayers. Good luck to all getting results this week.

However, I must say that Ross Poldark is mine, I have loved him since I was 15 . I will only share the books, they really are a good read.

Take care, I will have my angry eyes polished and ready if needed.

Love Marie.

helen44
Member

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Hi everyone

Just wanted to wish you all the best with treatments, thinking of us all with this horrible disease, and especially Chris, Lulu, Bev, Sheila & Helen at this time.

Pleased you had a good break away in Italy Nicky08 - catch up with you very soon.

Big ((((hugs)))) all round, love Helen xx

 

LYNDYLOO
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Morning Catlady sorry to hear you have not been well. Not been on here for awhile just trying to get on with life. Still working at moment. I am still on same treatment e/e. Due to have 6 months scans of chest abdomin etc. Is there many people on the e/e now. There was a thread for it can't seem to find it now. Nice weather in the North East today might go for a walk after lunch. Reading through the messages alot of people seem to be having a bad time of it at the moment. Cyber hugs to you all. Linda

edwina64
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Hi Helen so glad to hear you are home and despite everything you still sound up beat. I had radiotherapy  at the start of my treatment it was a bit painful at first but since then it is a miracle  cure, no pain for 18 mths now. Are you able to change your onc? I had a registrar for a while she was nice but when I told her I was in pain she asked how long I said a few weeks and she said she wouldn't do anything unless I had been in pain for a few months. I wondered if she would like to be in pain for months!  Anyway my brilliant breast care nurse sorted it out for me, but it does make you wonder!

Barton
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Hello all. Just a quick note to say to Helen glad she is home safe. Sorry you are still in pain, but hopefully the rads will sort you out. Hope everyone else is doing well (but so sorry to hear about Chris and Lulu). Bev, I hope you have a good time in Tenby and get to recharge the batteries. Chocolates, thank you for your updates on Helen, and I hope you have a good time with Mr Poldark (but treat him gently as it seems everyone else wants to borrow him too!). I am of the age when I still fancy Robin Ellis as Poldark (no-one else -male, that is - can carry off a pony tail like him! Sorry, I'm really annoyed that I can't see any other posts, and chemo brain means I can't remember what stage other people are currently at/going through, but all my best wishes to everyone. Barton.x

 

Chocolates
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Hi LD - I've got two cycles without monitoring and then back to see him. No scans since last November. Was scary at first but now getting use to the idea. I'll ask him in the summer if I have a yearly one just to double check. The reason for less scanning was that as you know the scans themselves carry radiation and so can be harmful. It's a catch 22 position isn't it?
Stillhere - I nearly pushed the button to report inappropriate content - you can't have him, or at least I'll allow you one day a week!!! He is such a brooding hunk - just love it. Don't tell Helen - she'll be asking for a bed bath before you know it. I record the show so I can watch it later in the week in peace. So no spoilers!!!
Hope everyone is doing ok. Bit cold and mis here - the oh has mowed the lawn and been shopping with me - probably going to the pub later for the rugby!!! I know him so well.
Huge hugs,
Hxxxx
LemonDrizzle
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Thank goodness you're home Helen, as you know we've all been so worried about you. It's a good job Dr Gingerhair is more on the ball than his onc even though it should be the other way round. Can't wait to hear your stories about your stay in hospital as the pain lessons and you feel up to it.
So sad to hear about the poorly Lulu and Chris, thinking of them and their families at this worrying time.
Sheila, glad you managed to choose some new glasses and that youre feeling better today.
Marie, the tears do become fewer, honestly.
Love to everyone x
Stillhere
Member

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So glad that you are home, Helen, must be a big relief. I don't know the 2 ladies who are poorly but they are in my thoughts and prayers.
All the men in my life are watching rugby so I can whisper to Chocolates " sorry but Ross P is already taken!!" What a lovely Cornish hunk!! Btw I have 1 husband only, but 2 sons/ 1 stepson!! So space for 1 more.....
rosie53
Member

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Yeyy Helen so good to hear from you, glad you are home and posting again we all miss you so much when we don't hear from you, so sorry to hear of the way you have been treated its dreadful!!
My thoughts and best wishes go out to Chris and Lulu.
Hi to all, much love and hugs Janette x x
Marie123
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Hello New Friends,Glad to hear that Helen is home, I changed my onc early on as recieved upsetting mews in a letter instead of being told face to face. My new onc is good and the letters only say exactly what has been said in consultation. So change your Onc if you are not happy.

This is probably very old info, but while shopping for England this morning I found a bcc bra, no jooks etc. This means I can wear it to my next pet scan and not get undressed.Hooray. I seem to be constantly taking my clothes off to be examined.

I have been worrying that I will go into a room mis hear what someone says and start taking my clothes off LOL

Have had a better week no tears, thank you.

Wishing  you all a good restful weekend.  Marie

 

 

 

 

 

stresshead
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Helen, lovely to know you're home.

My thoughts and prayers go out to Chris and Lulu.

Havent posted for a few days but hope everyone else is well and coping.

I have just had pet scan following end of treatment and so am at the dreadful 'waiting' stage. All omplicated now by pulmonary embolism. my mind is in overdrive. I'm terrified the embolism is due to the cancer spresding and that if it has gone elsewhere they wont be able to treat me. Has anyone else had this problem?

Not sure how i'm going to get through to Thursday and beyond. x

nicky08
Community Champion

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Hi lovely ladies.
Having been away for the last few days it is such a shock to come back on here and read what a dreadful time so many of us have been having, or are having right now 😞
As others have said it is awful news from Chris, she has been a member on here for so long and she has been a great support and cyber friend for many of us over the years. Lulu as well. I know she has kept mainly to the triple mets thread that has again been going for many years but I have ways kept an eye on how she was so it is upsetting to hear that she also is not doing well.
I am sorry if I miss anyone off from this post but so much has happened to so many of us. However I wish Bev a good weekend in Tenby, hopefully the bracing sea air with strengthen her for her upcoming rads and also it is good to hear that Helen you are eventually out of hospital. But what a disgrace your oncologist is! I do wonder sometimes why anyone goes into this extremely difficult area of medicine if they cannot listen to their patients fears and real experiences of pain etc and don't do anything about it. I hope the rads do the trick on your spine and you get pain relief very soon.
To everyone else suffering from treatments or the shock of news that they didn't expect make sure you look after yourselves, it is all too easy to overlook our own needs and our those of our families especially at such a difficult time.
On a plus note from me, who felt so ill 2 years ago I really thought I'd had it, I have just come back from 5 days in Florence. Celebrating my birthday whilst there with OH and enjoying some sun. The eclipse was also very clear s it was a very sunny day and the temperature drop was very noticeable whilst it was happening. Not as complete as the UK but at least we could notice it! Lots of people lining sides and the bridges over the river Arno to get a good view.
Take care ladies, it's been a tough week or so but I know from experience that the strength of this forum will help all those dealing with bad news and we will continue to support them and each other.
Nicky x

roxy12
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Helen, so glad you are home!😊 I'm sure that makes you feel much better too. I was so miserable when I was in last year. There were a couple of scary nurses then who you tried to avoid asking for anything!

I'm sure you will feel much better in a few days. Glad to have you back on here. Xxx

Lemon drizzle, I managed to choose some new glasses. Have had prescription since Jan. And I bought a couple of new tops but then I felt faint in Boots and had to sit down. I thought I was going to be sick and the staff were very good. They brought me a bin  and said I could go in a cubicle for privacy if I wanted but the sickness wore off so we went home. I am OK today..

Hope you are OK and everyone else. Lots of love Sheila xxx

bertie1
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Helen so good to see yor post ,glad you are home and hope the pain from rads eases soon ,you will soon be like a new women I felt much better after rads to my spine last year and am still pain free.looking forward to watching the rugby later and then I'm going to see Dirty Dancing in cardiff.
Hope everyone else is doing ok
Take care all
Kaye xxx
pam01
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Great to see you posting Helen. Hang on in with the radiotherapy. I had 5dqys of radiotherapy to a collapsedmvertebra in my back(touching spinal cord)4 years ago and going strong......hope the pain settles quickly.xx.

Chocolates
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Yayyy you're home Helen, so so pleased. Others have said pain from rads initially is horrendous but when it goes you'll feel like a new woman - look out all those hubs. I feel it important to say now that I have a new hubby - Mr Poldark - oh my. Helen you are not well enough yet so I'll just keep him here for a month or two. Now rest up lovely lady. There's loads of things to catch up on, all in good time, just don't do too much.

Was very saddened by steris' news. Such a shock. It might also be worth saying that Lulu is very poorly. I know a lot of you ask often how she is and when she was able would come on live chat. Unfortunately, she is now out of hospital but is being cared for by the marie curie nurses. She is pain free and comfortable.
It's a difficult time ladies, yet that is what this forum is about, through the good and the difficult we are here for each other.
Lots of huge hugs for each and every one of you xxxxx
belinda
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Oh hooray to see you home Helen, that is such good news. 🙂 When you are a little better I must tell you all about my new hobby making fruit bowls from smashed Bob Dylan records all lovingly re glued together. Bear and DC gave me a lovely collection of them. 😉 x
JulieD
Community Champion

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It is so good to see your post and to know you are home! I´m sure you've lots of tales for us. At the moment just rest and enjoy being home. Welcome back! xxxxxxxxxxxxx<3 xxxxxxxxx

 

2catlady
Member

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Good morning lovely lady's im home. A massive hug to everyone ,your posts have been a God sent and your good wishes and love have meant to world to me xxxxxxxxxxxxxxxxxxxx

So saddened to read about our lovely Chris. Its knocked me for six as she was doing so well.

I got home about seven last night,yippee. Pain is bad from rads,didn't expect It to kick in so soon but I kept that quiet and got home.ahhhh bliss.
I must admit the nurses and beige dresses staff( not sure of job title ) were lovely. On nurse really scary even other nurses scared of her lol!
Never got to see my onc on ward apart from we bumped into his on Monday in downstairs cafe and he said oh,your still in,I only found out on Monday! Oh you are out of bed walking that's good!! Didn't know I had spinal compression then.This was blatant lie as the week before I had an appointment in out patients with him and Rachel's onc said ive just been down to talk to Dr💊 and tell him your in he may pop up to see you!
Any way I've been seeing his reg who is very on the ball( don't know name,apart from has ginger cropped hair and beard) but very nice man. I did say to him Dr 💊is nice but dozy at times and he smiled at that. I said you need to keep kicking him subtly and he said he would lol.
Well ,I have poo gate to tell you about an the physiotherapists who had to come in a pair to see me after first visit !!!! I'll leave those to later.
A huge thank you to you bunch of wonderful ladies ,you give me strength and I love you all,massive hugs,Helen xxxxxxxxxxxxx
Porkie
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Thank you Belinda for this sad update xx

belinda
Member

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Dear All, Chris, Steris, has posted her update on my weekly Taxol thread in the Treatments forum. She is now in a hospice and believes, has been told, she has 4 weeks. I am hoping she may return there to read any replies so if anyone wants to send their love to Chris, Steris, I will post the link here,

http://forum.breastcancercare.org.uk/t5/Treatments-and-medical-issues/Anyone-had-weekly-Taxol/m-p/91...
LemonDrizzle
Member

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Chocolates, again thanks for the update about Helen. You're all right this has been ignored for too long - it's ages since she first mentioned it on here. At least she can move forwards now with the rads then sort out her pathetic care and even more pathetic onc. Fab to hear H&P still working well. When you say you've got a break before you see him again can I ask how long - being nosy really!
Sheila's, hope the shopping went well and you can enjoy the weekend before rads on Monday.
Julie, I missed all the excitement of the eclipse today, as I was at Christies at that time - typical isn't it, the one day it happens and I'm attached to machines and not even near a window to look out of. At least some of the photos look good.
Hope everyone can enjoy the weekend
LD x
JulieD
Community Champion

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Thanks Chocs for update, I am so angry at Helens Onc, right back at the start of her pain I was worried about compression so why on earth wasn't her Onc!?! I hope when she is better and has the strength that she will make a complaint and definitely move to a a different Onc, Julie's Onc sounds much better. Big hug to Helen and hope she is home SOOOON!! xx

 

Sheils gla you haven't got long to wait, roll on Monday, the sooner you start the sooner you finish. Hopr you enjoyed your shopping trip.

 

Bev, have a good time in Tenby, recharge your batteries and come back renewed and strengthened for treatment.

 

Hope everyone is doing as well as possible

 

Did anyone see the eclipse? Too cloudy here on South Coast and couldn't even see the sun! |iut did get darker, colder but nothing to see.

 

xxxx

 

 

Chocolates
Member

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I just checked the boards - Helens back pain started on the 16th jan. As you can see I'm still so cross about it all. How can they ignore her for two months. There is a slim hope that she may be home today after the rads, if not then it's monday. Will be lovely to have Helen back posting. I've passed on all your love and she sends you all massive hugs and has missed you all.

Have a good weekend everyone.
Hxxx
roxy12
Member

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Hi chocolates,

Will you pass my love onto Helen please. I can't believe how awful she has been treated by the medical staff. I hope the Rad's sort it out. She must be in agony! Are the rads being done today? When she is feeling better she should put in a formal complaint.

Hope you are OK. I'm glad to hear all is well at the moment. I didn't know you had mets on your lung. Mine haven't gone any worse in three and a half years and I have no symptoms. Hope yours are the same.

Chocs, I saw the onc yesterday and my treatment starts Mon for 2 weeks. I've posted on the brain mets and it's quite a long "waffle". I've gone in more detail. You're right about my onc though. He is fab!

Hope everyone else in coping and I hope you all have a good weekend. I am off shopping later with my daughter before I get too tired from wbr. You know what they say? " when the going gets tough--------"

Love to everybody. Sheila xxx

 

 

belinda
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Hi Bev, have a lovely time in Tenby, X
I can hardly believe the complete lack of basic care Helen's received. No wonder she has been in so much pain. I am just stunned by what she has been through. 😞 I only hope now she will receive the care and treatment and there is no more wait and do nothing. Shocking. Thank you Chocs, please send Helen my love, she is one strong lady. X
Have a peaceful weekend everyone. X
bertie1
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Oh poor Helen hopefully the Rads will sort her pain out her Onc has been useless when she,s feeling better she needs to tell him how awful she's been treated.hope everyone else is doing ok and everyone has a good weekend
Kaye xxx
Chocolates
Member

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Hi Janette, I don't work full time - 4 days a week Mets are bones and lungs. It's not easy but keeps my mind occupied which is the best thing for me xxx