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struggling for support

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Re: struggling for support

Thankyou all for your kind wishes. I am just back from the hairdresser having a moment of madness asked for some blonde highlights!! Oh god I'm 44. A new me to start the New Year well somebody said that blondes have more fun so here goes.HA HA. I am really goin to try and put all this behind me now. Well until next yearly mammogram then i guess the fears will start til i get the letter to say that it was ok. Here's hoping i don't have to go through this again. It was made worse by the fact that the results were so long in coming.

I wish you all a the very best of wishes for 2009. xXx

Lily200
Member

Re: struggling for support

Hi Laura,
hooooooooooooooooooooooooooooooooooray for you. Really pleased and you try to sail off back to all those dreams you had.
Lily x

Guest user
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Re: struggling for support

Lol,

Have followed your thread and am so pleased for you that at last the news is good. Have a very happy Christmas and a good New Year - I think you've earned it!!

Guest user
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Re: struggling for support

Lol,

Thats fantastic news! Have a fantastic Christmas and New Year, see you on here from time to time, for now party on and look forwards! So pleased for you, xxx

dotchas
Member

Re: struggling for support

I am so pleased for you,it really is lovely to read good news on this site.I wish you a fabulous Christmas and New Year! Try and put all this behind you but you are more than welcome to pop in and "see" us now and again,
Enjoy,
Love
Dot

Guest user
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Re: struggling for support

Thank you so much for that walton. And all the very best to you too. You are right the stress has been awful.XX

Guest user
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Re: struggling for support

I'm so really pleased for you Laura its the best news ever and no you are not selfish you need to take the time to recover from the last fews weeks stress.I wish you and your family all the best for Christmas and a very special new year,it will be nice to hear from you now and again, You have been a tremendious help to a lot of ladies on this site,even though you were going through alot of uncertainty.Take care and hope you never have to return for medical reasons xxxxx

Guest user
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Re: struggling for support

Well folks my news was good i have fibrocystic disease and no cancer. What an emotional rollercoaster, have been crying on and off all evening. What a stranger feeling. Arrived at the clinic and it was my female consultants clinic tho she did not come and explain my diagnosis no way she put a specialist doctor into me. Not that i wanted to see her really but she should have done her own dirty work especially when she was in the clinic anyway!! I am going to ask my GP to refer me to another consultant. I also want to get an appointment with the Genetic folk as it is them who request my mammogram and see if i can be tested for the BC gene. I really cannot go through this again. Although i am so releived i still think of all the people on this site who are still waiting for results, have been newly diagnosed or are going through secondary diagnosis. I have been lucky this time and hope that it can continue. I have found the support on this site to be first class and have exchanged e-mails and mobile numbers so have made some new friends too tho haven't met them.

I feel guilty at my happiness knowing that others are not so lucky.

My family are so relieved it has been a long wait for them especially my mam n dad who have already lost a daughter to BC.

I am gong to come off the site and just log in from time to time as i need to take this chance to put all this behind me but i will be thinking of everybody and logging in to catch up from time to time i hope that does not sound selfish of me as i will still be thinking of you all especially the people with their secondary diagnosis. Take care thanks for all your good thoughts and comments.

Love and hugs Laura xx

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Re: struggling for support

Lily i hope that you got on okay today was thinking of you. x

Lily200
Member

Re: struggling for support

Hi,
I have been having chemo through a port, which is buried in my chest. Now it is finished I need it out of the way for radiotherapy. It is a small op but it gives me the heeby geebies as they are pulling the tubes out of my veins and he told me I would be awake for it. One tunnels under my collarbone and goes up the side of my neck and the other crosses my chest and tucks in the top of my heart. The port just has to have the old scar reopened and taken out. It just gives me the wobblies thinking about them being pulled out. I might have to go roaring drunk!!!! Scared of the injections mostly.
Good luck again
Lily x

Guest user
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Re: struggling for support

Meant to say what your op for lily? x

Guest user
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Re: struggling for support

Just nipped on before bed thanx. Good luck tomorrow Lily what your of for? Will look out for you sparkler good luck to you too. Fingers crossed for us all. XX

Lily200
Member

Re: struggling for support

Hi Laura,
so sorry the jelly legs are back and you are feeling so anxious. Me too, I am going for an op tomorrow and have been in and out the loo every time I remember it. Shall we hold hands and cyber scream through the next 24 hours together? There are lots of people on this forum having results and other not nice things tomorrow, so you are not on your own in all this. I wish you and all of them lots of luck and big hugs.
Everything crossed for you
Lily x

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Re: struggling for support

Wasn't going to come on again tonight but am in such a mess have had diarrhoea since knowing that i am getting my results crikey and all that fighting to get them too!!ha ha. Am sure everybody like this tho. Know that i won't sleep tonight even though am on antibiotics i am going to have a glass of wine tonight just so that it might help me to sleep. You guys have been great with your support andi can't thank you enough. I dreamt last night that it was a secondary cancer to ovarian as i have had such a sore side and back and there was a story in local paper of a young mum who had died of ovarian cancer last nigh. Crikey i woke up all in a sweat so i must have had some sleep. My mind is really playing games with me, see i can say this to you lot but if i told anybody else what i was feeling they would say that i was mad and things will be okay and think positive gee if i get told to do that again i will screem. I have only told 2 close friends one of which is coming with me tomorrow and my brother that i am going into get the results. So tomorrow is going to be a long day. Depending on what news i get it might be later before i get on line but i will post tomorrow at some point. Love to all and thanks again. A very nervous Laura XX

ForumMember
Member

Re: struggling for support

LOL2705

I am at same hospital as you!!
Have just read this thread - and oh my god my heart goes out to you.
I too work for this trust but am in childrens services which is a totally different kettle of fish. I HATE being under the care of adult services. I am just wandering which cons you are going to see now?
I too have an appointment tomorrow at 10 30 as I have an area of concern I am worried about (I was dx July 07 with bc).
Good luck with your appointment tomorrow, will be thinking about you. I really hope its good news, but if its not, and you want to meet someone with a bit of 'experience' of this disease, then send a private message to me.
Take care
Love
S
xxx

dotchas
Member

Re: struggling for support

I will also be thinking of you tomorrow,fingers crossed for good news!

Dot
xx

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Re: struggling for support

Will be thinking about you tomorrow Lol and hope you get some good news xxxx

Lily200
Member

Re: struggling for support

Hi,
I just wanted to wish you lots of luck and will be thinking of you
Lilyx

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Re: struggling for support

Will be on line Monday night thank you so much for your support. xx

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Re: struggling for support

Glad to hear you have some good news at last Lol!! At least you will know either way on Monday and can begin to get on with life (whatever that may be) rather than being stuck in limbo waiting. Fingers crossed for you that it is good news. Let us know when you can. Enjoy your weekend with your family as you can at least stop wondering - when will I know. xxx

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Re: struggling for support

I have read your posts with mounting anxiety for you and mounting anger at your hospital. Congrats on struggling on to get some answers and at least by Monday lunchtime you will know what you are dealing with. I would say to the new man you hope that all the stress you have been put under has not affected you badly, and is that how they deal with all their patients! My best wishes to you whatever the results

Guest user
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Re: struggling for support

Hi,

I second that!

All the best,

LXXX

Guest user
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Re: struggling for support

Lol don't forget to ask for a copy of your results.Will be wishing you the best possible results.xxxxx

Guest user
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Re: struggling for support

Well it just showns what can happen when you go to the top just had a call from the complaints lady whom i spoke to yesterday and lo and behold they have tracked down my results and i have an appointment for Monday 11.40 with a new Consultant man this time - i wonder why they are not letting Miss Smyth loose on me HA HA i hope that he is going to be my consultand from now on as i think i would not be able to stop myself from giving some verbal. Anyway i will know either way Monday afternoon. Like i say I am sort of prepared for the worst though am hoping that as i don't feel anythin that is has been caught early. Just got the weekend to get through now. I am not going to let my family know that a day has been made as this will just add to their stress. Will tell them Monday night. Thank you everybody for your kind thoughts. Will keep you posted ge my stomach in knots now that i have an appt through. XX

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Re: struggling for support

Oh Lol,

Thats rubbish. At least you have the Chief Exec on your case now so it wont get swept under the carpet. I assume your results will be on a computer somewhere not just in paper form in your notes? I don't know how hospitals work with record keeping, perhaps you have a bit more knowledge as a nurse? I suppose on the positive if the results are gone gone then they can call you in on Monday for a re-test and give you your results that day as other hospitals are able or at least within a few days.

I still can't believe they would send results in the post though!!! What if its bad news? Seems very odd.

I would strongly suggest that if there is somewhere else nearby you can go to you look at moving your care there if, heaven forbid, you should need it.

At least you have things moving now and are not just waiting for a call back from a secretary.

xxxx ((((((((((((((hugs))))))))))))) xxxx

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Re: struggling for support

Well here goes folks you are NOT going to beleive this one!! I have received a reply from the Cheif Executive saying that he is making and urgent enquiry on my behalf and will get back to me as soon as he can. Then i received this message from the lady that i spoke to yesterday

Unfortunately, Dr Smyth has now confirmed to me that she has not received your results either and she told me that a letter will be written to you when she gets the results because these results are not given over the phone.

Kind regards,

You know that sinking feeling I had yesterday well looks like they MUST have lost my results yet they said that they were through and the breast care nursed who phoned me on Tuesday was told to tell me by my consultant that she was dealing with my results and an appointment would be send in due course. I really am at my wits end with this and another weekend to pass. With being ill the last few days i am so down i really can't beleive this is happening what a shambles of a Hospital.Am so upset. xx

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Re: struggling for support

Well i have just spoken to my son's and even my ex about going to the press as i feel that it would affect us all. My son's are keen just my 14 year old who i have really tried to protect he still stuggling with his dad leaving and has been sleeping with me again!! bless him. Well he is worried that if it is in the paper that the mums will speak about it and tell their kids and then they will all be at him so i think i will knock that one on the head for now. I have e-mailed the Chief Executive of NHS Grampian and tho i say so my self it is a bloody good letter, have my friend giving it a check over before i send it. I have said that if i get no satisfacion from him that i will be contacting the press - he doesn't know that i'm bluffing and beleive me he won't want the publicity so fingers crossed that mabye tomorrow i will have my results once and for all only 3 weeks and a day after my core biopsy!! I must say that i have prepared myself for the worst though what with having abnormal cells and all. just that i want to know. Will keep you posted and thanks again you really are a great bunch wouldn't get through this without this site X

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Re: struggling for support

Ha ha ostrich just read your thread on the "dying bit" so seen that you are a police officer perhaps i can call on you and you can help me kick my consultant's butt without being arrested for it. LOL xx

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Re: struggling for support

Dont get arrested Lol, its not much fun trust me! I have arrested enough people and the ones who have never been arrested before dont exactly enjoy it! 🙂

Fingers crossed for you that the consultant does phone and your BCN but it is getting late. If not then my thoughts are with you tomorrow when you kick some butt. Don't let yourself go into another weekend not knowing, xx

judyw47
Member

Re: struggling for support

Hi Lol

Just read your posts and really really feel for you. You must be going out of your mind. I live right the other end of the country from you and I was given my 99% certainly bad news just an hour after scan and core biopsy.

I would want lump with abnormal cells present removed too. I do hope they can put your mind at ease very very soon.

Big hug from Judy x

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Re: struggling for support

Well folks here i am again through another day with no appointment the lady from the complaints office e-mailed me back to say that the secretary that i had been leaving messages to and spoke to last friday has now left and that is why i have been unsuccessful in geting anybody to answer the phone. Surley they would have somebody to cover and check answer messages!! However she has e-mailed my consultant and told her that she must phone me today and left my mobile and home phone number's. I also left a message with the BC nurse asking if she could phone me today and as of yet i have not heard from either of them it is now 4.50pm. I have sent an e-mail to the complaints lady tosay that i have given the consultant her last chance and that i am going to the local press tomorrow. I am getting so angry now my 14 year old came home from school and asked if there was any news today it really is getting every body down. I will try osctrich's method tomorrow also. This is like something from a film not real life. thanks again for all you thoughts. I will update you tomorrow unless i have been arrested for being a nuisance. xx

Guest user
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Re: struggling for support

Hi again Lol,

I’ve just seen your post from this A.M.

I was going to post yesterday and say that you should definitely be asking for a printout of your pathology report for your biopsy, because your posts were starting to make me wonder if something had been misplaced or lost. I hesitated though, as I didn’t want to stress you out even more. So I am glad that you have thought about that as a possible explanation as to what has happened. I have mostly found that when there have been delays or lapses for me that it has been because I wasn’t a priority, meaning that I was put to the back of queue for being non urgent; not fair, but no hospital is perfect. I hope that maybe that is what has happened to you. BUT, it is still no excuse for the way you have been treated!

I also want to say that after my initial diagnosis, I had to change hospitals. This meant waiting for data to pass from one to the other. And Easter got in the middle of it. It took ages...well, weeks, and of course I was tortured with thoughts that the delay would make my prognosis worse. But it didn’t. I only mention this is case it could be of some reassurance to you. I really hope that you get to the end of this soon. Keep at them; use Ostrich’s method & those treatment guidelines I mentioned before…

Thinking good thoughts for you,

Lomalinda

XXX

dotchas
Member

Re: struggling for support

Great technique.
Try that (if you are brave enough!) you will get the Chief Executives name and number from NHS Grampian website ,it also gives an email address if the phone call doesn't work.
These people are a nightmare to get hold of in the NHS.
3 weeks is disgusting,I thought waiting 4 days was bad enough! My BCN gave me my results to save me waiting another 4 days to see the Consultant.
I do feel so sorry for you as you will now have no faith at all in the team supposedly looking after you.
I hope you get somewhere today,if not it'll have to be the camping in the waiting room!
Hugs
Dot
x

Guest user
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Re: struggling for support

Lol,

My OH has a good way of getting results.

Call the main switchboard and ask to speak to the Chairman/Director/Head of the Board (whomever is the highest person in the trust) - find out their name from the hospital website and ask for them by name....

"Hi, its Jane Jones (insert your name), can I speak to Fred Smith (or whatever he/she is called) please?" you'll either get put through to his PA who'll ask or the switchboard will ask............

"Can I ask what its in connection with?"

"Its a personal matter, if you could just tell Fred that Jane Jones is on the phone, he's expecting my call."

If he is in a meeting (yeah right) ask when he's free because he's expecting your call and did ask that you call today and then repeat above when you know he's free.

He will get a call from his PA saying

"Someone called Jane Jones is on the phone for you, she says its a personal matter and you are expecting her call"

He will sit there thinking, "hmm, I know nothing about this, maybe I forgot" and not wanting to be rude will probably take your call.

Then, you ever so firmly, ever so nicely (NICE to everyone in a firm way is the key) explain to him that as he is the top man and in charge of the whole hospital you would like him to help you sort out your problem because you really DONT want to have to go to the press and you are sure he doesn't want you to so could he look into it and call you back in about half an hour.

Trust me, my OH has got lots of rubbish in our lives sorted this way. He is always very nice but insistent. He never tells anyone lower than the top person why he wants to speak to them (cos they'll try and deflect you) and then makes it the top person's personal responsibility to give him answers.

xxx

Guest user
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Re: struggling for support

Bloody hell i could scream. OOps sorry for my language. I am from Aberdeen well just outside but it is the Royal Infirmary in Abredeen that i am under. I have just called to be put through to PALS well we don't have one up here and this supposed to be one of the biggest teaching hospitals up here. LOL!! shouldn't say that as i did my training there oh yes back in the good old days.Ha Ha. Was put through to the NHS Grampian Feedback Service where i spoke to a woman now she was nice and helpful but every word took an age to be spoke !! Do you hear me screaming through the screen!! Honestly by the time i came off the phone and had relayed the whole senario i was in tears i am in tears. She lookied up the system to see if there was an appointment for me and it said that i had cancelled one on the 4th November but that is when i had my core biopsy (i am getting a sinking feeling here folks) do you think that they have lost my results or have no record of me being there, when i phoned last tuesday the sec said that she had my notes in front of her and that she was chasing thinkgs up. My GP phoned pathology and was told that my results were sent to my consultant for marking what is going on here. The lady that i just spoke to also checked the system to see if there was an appointment for me to go and get my results and there is nothing on the screen. AAAARRRRGGGG, mabye that is good news as i might be getting a letter to say that all is okay but surely i would still need to speak to the consultand though i realy don't want to see her but there is a lump inside me which has abnormal cells and whether cancerous or not I WANT IT OUT. My god i am going crazy here. She is away to make some phone calls to the secretary to see what she can find out but bless her she is so slow at speaking it could take her all day. As i was getting weepy at the end of our conversation i told here that i was quite prepared to do a sit in until i got my results advising the local press before i did so so!!
Listen folks thank you so much for your kind words it means so much. Love and hugs to all. X

dotchas
Member

Re: struggling for support

This is disgraceful,its nothing but cruelty to leave you hanging on! You need to complain to PALS at your hospital and follow the call with a letter to make it official.
I do agree with walton that I would not want to deal with that consultant so heres hoping you don't ever have to see her again once you get your results!
You could also consider contacting your MP if you have no success with PALS.
These are YOUR RESULTS and they should not be keeping them from you!
I am so angry about this I want to thump your consultant! Might just bash a cushion instead!
Let us know what happens today,
Hugs
Dot
x
PS where abouts are you?

Lily200
Member

Re: struggling for support

Hi,
really hoping this gets sorted for you really soon, there is enough stress and worry around anyway wondering what next. You could think about starting a thread if you wanted to know other's experiences at your hospital and consultant to see if this is routine there or if you have been very unlucky. This would also help you find out whether there is a better consultant there who you could ask to see if you needed to see someone in the future.
Big hugs and hang in there
Lily x

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Re: struggling for support

I'm with you in that waiting room Lol too, sitting next to you, in mind if not in body! If you have to cough and sneeze over everyone, all the better - if you look really sick the nurses may bump you up just to get rid of you! Just make sure you cough and sneeze all over that Consultant too!!

xx

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Re: struggling for support

OMG Lol It is a nightmare for you,There is really no need for this to happen.I really hope the results are good and even more so as you really don't need to have to deal with a consultant thats is so unproffesional.I hope you are feeling better and the antibiotics have kicked in.Hope you hear today,go park you bum in the reception and take all your family with you,infact we will all come with you,it might might make them sit up and do something.Take Care Flowerxxxxxx

ForumMember
Member

Re: struggling for support

i am so sorry to read how dreadfully you are being treated. It is absolutely disgraceful and I am just posting to wish you well and hope you have the energy to take up the fight. Its the last thing you need or deserve, its the last thing anyone in your position should be put through.

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Re: struggling for support

Hi folks thanks for your comments. Well still no letter through for an appointment today!! I have been pretty poorly today and have hardly been able to lift my head off pillow have a sinus infection and chesty cough been burning up, my friend went and collected my antibiotics as my GP just had to listen to me and know that i wouldn't manage down. I am just so run down with everything. I will phone PALS tomorrow as nead to have a clearer head than i had today not much use having a telephone conversation when you can't stop coughing!! Mind you they might have felt sorry for me. LOL.

My auntie had a friend who apparently had the same consultant as me and she was in the same position waiting for results and literally went and sat in the hospital the whole day until she was seen!! Also my mum has heard of somebody else who has had this problem with the same consultant so i realy must do something about it so that more poeple do not have to go through this. If it wasn't for the fact that i would be spread all over the papers i would contact them beleive me.

I know that it is not the secretaries fault but i have left several messages and even if she could call me back to say that she is chasing things up would be better than to be igonored.

My GP has tried to chase things up and when he said that i was one of the nurses at the practice he was basically told that it didn't make a difference to them and he had to stop phoning as the results would not be sent to him. I am sure that the consultant is beeing now am sorry for saying this but being a BITCH yes it is a woman consultant that i have so you would think that she would know what a worry this is!! And as i have kept phoning and my GP has been phoning she is making us suffer!! don't know just a theory. My GP is going to place a complaint he is furious at how i have been treated especially when i said that i would be happy to get my results from him. Sorry i seem to be raving on here. It will be 3 weeks tomorrow since i had my core biopsy, they took 2 biopsies. LILY200 I had a FNA a week and a half before that and that was the one that showed the abnoramal cells. I really need to know what is going on. My friends are txting me every day and my aunties r on phone to mam every day as they just can't beleive the wait that i have had. This is such an anxious time and coming upto Christmas and all. My sister was at her worst at Christmas and died 5th Jan so it is a time of year when your thoughts go back to her anyway not that we don't think of her at other times obviously. Her son who is 21 came back from offshore the other day and i seen him yesterday and he said that he could not beleive that i was still waiting he said that he phones his granny (my mam) from offshore to see how i am. How worrying for him who has lost his mum when he was 4 and to think that something might happen to his auntie too, as i have been like a mam to him and his sister god i wanted to cry, i know that if my niece could get hold of my consultant she would tear strips off her. Well actually so would my mam, dad son's etc wonder if i would get results if i sent them into hospital to see her. ha ha.

Sorry for ranting on folks and a big thank you for your support. I will keep you posted. Love to all X

Guest user
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Re: struggling for support

Lol,

Have just logged on and have to say I am horrified at the way things have gone for you. How did you get on with speaking to PALS today? xxx

dotchas
Member

Re: struggling for support

Hi,
I am shocked at the way that anyone ,consultants especially could think that this is an appropriate way to deal with a patients results.
Definitely put in a complaint to PALS at your hospital and explain you have tried to resolve this issue but your calls are not returned and that the wait has been unacceptable.
(don't blame the sec as she has just relayed the message from the consultant!)
Might be worth asking your GP to complain too!
Good luck
Dot
x

Lily200
Member

Re: struggling for support

Hi,
so sorry to hear this bad time has been made even worse with unnecessary waits. You could get results that are inconclusive, which might not necessarily mean you have it, but would still mean you get called to expain it or to do further test to recheck. Did you say you had just one biopsy? Many units do 3 or 4 or even more to check various areas.
The only other thing I think to try to help is that we were advised to go and pay the secreatry a visit by finding out beforehand when her hours were. Apparently some just pick up answerphone messages to save talking time! Is this a possibilty for you?They are not so brave face to face.
Lots of luck with everything, hoping you will be lucky
Lily x

Guest user
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Re: struggling for support

Hey Lol,

What? Not even a token apology? That stinks if you don’t mind my saying so…
I’m really sorry that you have to contend with this when you’re stressed and not feeling well physically. You should go the PALS route as Ostrich has suggested.
Good luck, I really think that you have waited long enough. And do get any explanations you might need about the info you get out of them.

Lomalinda

XXX

Guest user
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Re: struggling for support

Well i got hold of a BC nurse today and she said that she had spoken to my consultant who just said to tell me that she is dealing with my results and that i will get a letter sent in post shortly. When i asked if it would be my results that i would get through the post the nurse said that it would depend on what the result was!! So i said that if it is good news it will be in form of a letter but if not i wil be asked into the clinic to which she replied yes my god if i get asked into the clinic i am going to know that it's not good news. Surley this can't be good practice. It will be 3 weeks on Thursday since i had my core biopsy and still not news. I am absolutely furious and will be making a formal complaint. In fact i am so angry that i have no energy for tears. Well actually i am full of the cold and have laryngitis so am a bit low at the minute. Away to my bed with a hot water bottle, hot toddie vicks rubbed over my throat and chest bed socks and thick pj's not a pretty sight. Will phone and see if i can speak to somebody from PALS tomorrow as i realy think that this is dreadful. Nite x

Guest user
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Re: struggling for support

Thanks i will try and get in touch with them tomorrow. x

Guest user
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Re: struggling for support

PALS is the Patient Advice Liaison Service run by all hospitals - they should be your first point of call to make a complaint. They are not, as far as I am aware, NHS employees (may be volunteers) and have a fair bit of clout. If you start mentioning PALS let alone the standards of care mentioned by Lomalinda you should start seeing results.

xx

Guest user
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Re: struggling for support

Oh thanks for that ostrich what is PALS? x

Guest user
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Re: struggling for support

Lol, my thoughts are with you, can't think what else to say except your treatment sucks. I would phone the PALS office at the hospital tomorrow if you dont get immediate joy when you call. I am keeping fingers crossed for you that after all this you will have good news, xx