Sorry I haven't been posting especially to you Gail,I offended some people in an earlier post about not posting enough.
Gail how you been then, when do you start your new treatment,I'm glad it's been approved for you,what does it do? is it like herceptin?
I don't know much about it I will read up on it though.
I'm glad you have calmed down a bit now,there's me telling you that ! I'm the most paniky person ever!
Ive got another lot of surgery coming up soon this will be my third lot now,I remember the first time I was so worried about surgery,but the second time yes I was still worried but no where near as much.
I'm having this time a bigger implant in fact he said it's twice the size he used last time!
I'm glad he's not a mathermatician! cos he measured me the first time and Ive got to have twice that now! mind you he is fabulous at what he does so ...
The breast cancer rates have gone up even further now it was 1 in 12 then it was 1 in 9 it's now 1 in 8 in just a few years whats going on???
Ive just had my second mammagram as well they tell me there and then the results.
Kate how's your tiredness now? I'm still low on energy I can get up for 2 day's say then the next day I can't get up and thats how it is now better than before though I expect it to keep improving bit it going to take time.
Oh yes couldn't believe this I had a period it's been 2 years since and I really didn't expect them to come back as they said they wouldn't only under 40's might do.
Victoria how are you I know your work is hard now bloody tories! lol xx
A bit knackered from all the treatments. On my first week free from the tablets. I didn't have too many sideffects, but my count is low...so have to get another blood test before I can do my next lot.
Good news - MRI is clear too.
Wishing you the best of luck with Herceptin again and the new chemo. I hope you can still keep as much of your life as you do now on the drugs regime. How are you finding the Zolodex? There's a cream I apply an hour before the injection which numbs the skin which is quite good - it's called Emla.
At least Spring will soon be here, and the lighter evenings should do something to life the spirits.
Thanks Hatty. Good luck with it too!
Im starting Herceptin on Tuesday hope all goes well for you.
Seal watching - how fantastic!! Envious!! Where are you off to on hols? You have such a fun time in your travels!
Well I start herceptin Monday. The joy! Grateful I can have it though and am thinking about all those women who fought so hard for it.
Grumpy husband (aka "sicknote") has man flu still. Seems it is a bit of a chest infection, so he has been in bed for the last couple of days. Luckily, he has the strength to play his "shoot em up" game!!!!! We must be thankful for that!!!!! He now has "man"ti-biotics, so hoping he will feel better soon. If he doesn't, am going to practise my knife throwing skills on him ... so much better with a sitting target.
I'm so pleased to read from you and despite the worry that you managed to enjoy some of Christmas. The Zolodex is very effective at absorbing oestrogen, and I've been on it slmost as soon as I started the Tamoxifen. There are some side effects (at least I have them) but one is willing to put up with those if it helps gain ground on the bc. I have aches in my joints in the mornings and much worse hot flushes than before. It has also given my osteoporesis, though that's treatable. The chemo that you are on is meant to be a really good one. Praying it works well for you and that it was just a rogue lymph node at there is are no more rogue ones.
I went up to Grimsby for New Year and had a great time with Caron and her family. We went seal watching. The weather was bitingly cold - but it was a magical experience. Caron made some lovely meals and is looking so slim! I'm sure she'll be along to write soon.
No date for my surgery yet Kathy. I have a holiday booked in May so if it isn't going to happen soon I may have to delay it until I get back.
I'm sorry you find yourself in this awful place again. I've thought about you so much and how you were doing.
I'm glad Xmas was better than expected. As Victoria said , if there is anything we can do, please ask.
Also am pleased your consultant apologised and now doing his best for you.
Victoria has surgery soon and we're still waiting to hear about Caron.
I know when you are depressed and worried it's hard to concentrate and write on here, but please continue to let us know how you are doing.
All the very best, to you, your husband and Kai.
Hi all, Hope you all had good times at Christmas! Ours was actually better than I thought.
My lump had exactly the same hormone levels. They have taken me off Tamoxifen, as thought I might be resitant to it and put me on the zoladex injections instead. Menopause here I come! Will be back on herceptin, as soon as staff shortages allow somone to sort it out!!!! Started chemo - tablet form this week. It is horrible being back here again. . Am trying to keep working, as last time I just shut myself away and it was very depressing. But, I guess I will have to see how I feel. MRI next to check if it is in my bones too. Another thing to worry about.
Consultant actually apologised and couldn't do enough for me. Made me feel so much better.
It's so awful being back in this cancer world again!
I'm back now from Christmas break in Banbury and had a great time. There was quite a lot of snow there but I wore boots with a decent grip and went on a walk on Christmas day to see the Banbury Cross and statue of the Lady on a white horse.. Banbury cakes were served instead of mince pies on Christmas eve during the hotel's carol service. The food was good, with plenty of variety and it was nice to be able to spend the time resting and chatting with fellow guests rather than doing the cooking on Christmas day. One of the bedrooms is reputedly haunted by a monk who lost his life as the result of a cruel trick in the 17th Century (he drowned in a well) and there's a secret set of stairs that leads up to the room from a priest hole which is disguised behind oak panelling in one of the public reception rooms. The couple staying in the room reported the lights went on and off by themselves at various times during their stay - and the wondered whether it was due to the ghost. They didn't seem phased by it though. In another room Jonathan Swift apparently wrote much of Gulliver's Travels - taking the name Gulliver from a family tomb in the churchyard opposite the hotel. The tomb is no longer there, though there's a plaque to commemorate the occurence in the church.
I hope you had a good Christmas Jacq.
Caron, I'm thinking of you for you appointments on Thursday and Friday and hope you get good news and the all clear on the scan. I agree with your thinking about giving a routine scan after treatment.
Gail, you are in my thoughts every day. Let us know how you are getting on and if there's anything we can do to help. xxxxxxx
Just like to say MERRY CHRISTMAS TO ALL !!!!!!!!!!!!!!!
Jackie, you are so right !
I am made to feel like my GP is doing me some sort of favour !
He didn't even refer me to eye's when he was meant to,I'm sure this one DR doen't like me,after all the balls up's he's made with me,I can't believe he treats everyone like he's treated me or I'm sure he would be out of a job by now??
No I'm not changing Drs now,I think he's retiring soon (hope so!)
Gail we are all thinking of you xxxxxxxxx
Gail - that's good news at least that you've had the lump taken out. Let's just hope the test results come back with the best pathology - even if it means you would need more Herceptin. Like Caron and Jackie say - there's absolutely nothing more you could have done to keep the bc at bay. It's all just a lottery. I'm thinking of you every day and willing you to have the strength to go through treatment if it's needed needed again.
Caron I'm more noctornal too since diagnosis - but suffer by being tired in the day! Hope we get back to normal at some point.
Hi Gail, glad you got yourself 'done' already.
It's easy to change your medical team - just go to your GP and tell him/her and they should sort it all for you - if they grumble, just INSIST that they do it. At the end of the day, it's their job to serve you. I know we all seem like we should be ever so grateful/ever so humble .... but they do get paid to do all this stuff for you.
MERRY CHRISTMAS to you and yours .... you've done all you can .... enjoy! xJacqx
yes am still having trouble sleeping at night???
Don't know if it's too much on my mind,actually I suspect the laptop is to blame !!!!!!!!!!!!!! haha
Glad your surgery is over to be honest I don't know what my surgery is called? lol .
So do you think you will go ahead and have some nipples done? lol it's no where near as bad as mx and you had more surgery !
I had brain scan,heard absolutely nothing so assume all is well?
I'm seeing onc early Jan so assuming if it was bad they'd have rung?
Going to see another eye specialist next week so I assume she will pass me on to stroke DR whatever they are called? lol.
I hope it hasn't mutated I read once that DR's try to predict if a cancer is friendly or not,I know this sounds odd but they see if it will behave how they think it will,or if it doesn't behave,I don't know how they can tell??
I think it will be the same cancer (hopefull it hasn't mutated) so that means that the chemo can't have killed it all?
This is exatley why I think they should invest in CT scan's after chemo/surgery/radio etc alright they might have to run the cost of them,but on the other hand they will be saving money by not putting the said patient through chemo herceptin(if needed)again,just think how many lives could be saved,loads I guess?
Did they say if you have to have chemo again? god poor you.
I don't know how you would go about changing onc's? but you do need someone who has a sympathetic ear!
You have done EVERYTHING in your power to stop this !! evrything you couldn't have done any more nothing ...... you went through the nightmare of chemotherapy/surgery/radiotherapy/herceptin and tamoxofen what possibly could you have done? nothing,so don't beat yourself up about it,you should be giving yourself a pat on the back for bringing it to their attention so quickly.
You get straight back into treatment girl and you make the best christmas you can.xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
Eileen where you gone to girl???
Thanks for all your good wishes. Has been a hard week. Has been tough to go from absolute joy at an all clear to absolute fear and horror. Had lump removed on Friday in private hospital. What a different experience! Everyone very lovely. Everything very clean (no cockroaches in my room this time!!).
Results possibly tomorrow, but we already know it's cancer...so now it's about finding out if it is still ERpos and HER2 or whether it has mutated and become harder to treat.
Following some of the things you have said (thanks for your help ladies), am thinking about changing consultants. Can't believe how cold they were to me. Private nurse whispered the name of a nice consultant that does both NHS and private here. Just not sure how to change. Don't want to get labeled as difficult patient.
Feel very negative. Feel that as it has come back so quickly, it will spread quickly. Feel that I didn't do enough to stop it! Feeling very angry. Need to get Christmassy for the sake of my 5 year old!!! Maybe I'll just get some vino down !
Caron - am thinking of you too my dear...many hugs to you...
Much love all,
Thinking of you every day Gail and Caron. xxxxxxxxxxxxxxxxxxxxx
Kathy, pleased that your operation was a success. It's good to read the positive stories as I'm due to have second lot of revision surgery some time after Christmas. I hope you continue to heal well.
Eileen in case you are reading thinking of you too xxxxxxxxxxx
I'm having a busy week with work and things to do with Christmas. Yesterday I went out with a friend to the English exhibition at the British Library and going off to see the play Deathtrap tonight.
I'll write more soon - phone is ringing which I need to answer!
When I saw the time of your last post, I wondered if you were still having sleep problems.
My night times are still unpredictable, but last week I had my first session of acupuncture. It's going to take a while but fingers crossed,
Regarding my op, I was very lucky. East Grinstead hospital was wonderful. It is a specialist hospital for plastic surgery . If I remember, you had a different procedure to me. I had a diep. Both sides were done, and my ovaries and Fallopian tubes were removed as well. The recovery was far better than I expected and it all seems to have healed well. The worst part has been not being able to drive, the snow has been bad here so I wouldn't have been able to go out anyway.
Christmas has been overshadowed by my surgery this year. No cards have been sent, presents not bought etc. We're going to my daughter's for lunch, weather permitting. I have never been so unprepared.
Please let us know how you get on?
Also any news of Gail?
yes thanks for that,yes was really scarey at the time,I went more or less completley blind I realised I could just see at the outer edge at the top but if my eye stayed like that I would have been blind cos it wasn't no where near enough to see out of.
Mine lasted about 2 minutes I would say,I haven't had any chemo for 18 months now,but I was very bad on it and even now Ive only just lost half a nail again,my legs are wobbly and my balance is even worse than it was before which wasn't great !.
I suspect she (eye dr) will pass me on Ive got to go on 30th Dec to find out whats going on,but I know now it's probably down to the chemo as I said I still deffo have it in me still,even my onc is now amazed by it ! trust me .............. xxxx
I too had a TIA but one eye went only half blind. It lasted about 5-10 minutes and was very scary. I had been on tamoxifen for about 11 weeks.
After that I had to go to the eye department at the hospital and then to the TIA clinic for a load of tests. They could find no other cause for it and my surgeon took me off tamoxifen as soon as I told him.
I hope they find out what caused your TIA and that it doesn't reoccur.
I wish I could help you,I wish none of us had ever heard the word cancer !!!!!!!!!!!
I hope that you will get the best possible treatment as it's the least you deserve,do you think they didn't want to talk to you because they were wrong?
It's no good them hiding behind closed doors when your frightened to hell.
You don't know for certain that nothings worked for you,I feel very strongly that the balls up they make is not giving us a CT scan when we've finished all the chemo/surgery etc,they give us one at the start so why not after? then they would know for sure that nothing is left behind,I think this is the way forward??
I do wonder though how good herceptin is as every single person I know that has been her2+ has had recurrance,apart from me so far.
Gail don't lose hope,you try and have the best christmas you can for your little un,your a great mom so just enjoy christmas day if you can I know it's hard,and this is my exact point for me saying that we still need each other,and that we should still support each other because you can't just put this out your mind it's a curse we have got to live with.
Gail yo got facebook haven't you,maybe you should get in touch with Cat Johnson? she's on here too but don't know if she still comes on here but she is her2+ and has now got to have chemo daily but it's not as bad as the infusion's it's in tablet form so maybe Cat could give you some pointers? If you haven't got Cat as a contact look at my contacts she's on there she has a little boy too.
I know she would be happy to help you if she could she's a lovely person 🐵
I had a brain scan on Wednesday and god I don't want to speak to soon but they haven't rung me yet I'm praying they don't but I can't remember how long after they rang me when I had my CT body scan to tell me it was ok?
Ive got a appointment on 30th Dec about my stoke well actually it's the optitian Dr I'm seeing cos I went blind so obviously I thought it was either cancer in my head/eyes so I got a appointment with her and it's her who said Ive had a stroke,I know I have myself now Ive looked TIA up it's identical to what I described,I don't know the chances of having another one I do know it is deffo related to me having had chemotherapy.
I guess she will pass me on to whoever I need to see but I saw my medical notes well some of them a short version and I remember seeing stroke/Grandfather,it's funny cos I had no idea it was a stroke I had,I am glad it went to my eye though and not my heart or brain then I might have been left with some perminant reminder,but no I haven't got any remnants from it which I am thankful for,going blind even in one eye all of a sudden was very frightening I mean really frightening.
Kate glad your back now has your surgery gone well?
I was left with a bit of dead skin that turned black some has come off but the cut he made is open so I dare not keep fiddling around with it,I'd have thought it would be healed by now but it's not,when they took the stitches out the nurse made it all bleed it wasn't till a week later that I looked underneath the nipple and it's all open,Ive still got dead skin on it too I had the surgery on 5th November like I'm gunna forget that date ! not lol.
V looking forward to seeing you too hope all the snow will have gone by then? xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
Sorry girls, what with surgery and then a router problem., I've not been on here.
I was so shocked to read what you are going through. This scary stuff is bad enough at the best of times, but it must be so difficult when you have a family to be 'normal' for at Christmas.
I don't know whether normal exists any more.
Gail, I would seriously think about a second opinion. You need to have an onc that you feel comfortable with, and trust completely. I know it's little comfort but you are in my thoughts and prayers right now.
Caron, you really have had a rough time, one thing after another since you were diagnosed. We really don't know what is round the corner with this illness. I hope the TIA hasn't caused long term problems for you.
Victoria, I hope things are better for you . Are you still travelling around the country in this awful weather? We've had it quite bad here, just so glad I haven't been out. Unfortunately I'm really behind with my Christmas shopping.
Just to let you know ,imthinking about you all.
I have seen 4 different oncologists,I told them straight that i wouldnt settle for anything less than one that i could trust and work with. I have Professor Radstone in Exeter and he is brilliant and thoughtful. He even rang me up to say dont bother to come for your appointment im on the ward the day you have your chemo so i will come and see you then to save you making two journeys.
I have seen all via the NHS despite saying i was quite happy to go private. Good luck but dont struggle with someone your not happy with.
Hi Gail, sorry to butt in - and so very sorry that you're having all this scary crap to contend with. Please, please get yourself referred to another consultant if you're dissatisfied with your current one. So many people change to the Royal Marsden - it is the very best! Good luck with whatever you decide. Best wishes, Jacq. xxx
Oh Gail I'm so sorry you are having to face all this scary stuff again. If you really don't like your consultant or hospital you can ask to change. That's what my partner has done about his eyes. He wasn't happy with the treatment he was getting for glaucoma. Something else I would do - is to pay for a one off consultation with another cancer specialist to make sure you are getting the best advice possible. You get so much more time and can ask all the questions you need to without feeling like you are on a conveyer belt. Let's hope if you have the node removed that will be it and they will manage to take it all out. Like Caron says - do get in touch anytime. If you get scared and it's the middle of the night, I'm happy to talk as I've always been a bit of a night owl.
Caron, I'm thinking of you for tomorrow. 3.30pm - my thoughts will only be for you - and so looking forward to seeing you over Christmas.
Love and hugs.
Oh caron - so sorry to hear your news. Like we haven't all had enought to deal with!
My news keeps gettign worse. The biopsy showed cancer cells not abnormal cells, so I just feel that nothing has worked. Seeing the surgeon tomorrow. The consultant team have been really unhelpful and vile. Trying to get someone to speak to has been impossible.
How am I meant to have Christmas? How could they get it so wrong when I went in?
I don't know what to say to you to make you feel better when I'm in such a state myself.
They don't know for certain do they so lets just hope upon hope that it's not.
When are you going in? god you have got the fear of going in hospital again,but I promise you it won't be as bad as last time,well at least my second surgery wasn't so hoping you won't be as frightened?
I hope they are wrong please let them be wrong..............
I have had a stroke,I was rushed to doctors then hospital after steve complained the dr said I wasn't urgent when I lost my sight,anyway they have told me they think Ive had a stroke.
Its a certain type of mini stroke called T I A
I'm just finding out that its a good possibility that chemo has played a part.
I am having a brain scan on wednesday as I keep getting headaches and pains that are not headache,so just hope for the best.
Gail please don't leave us wondering ,and you can always pm or email on facebook. xxxxxxxxxxxxxxxxx
My good news didn't last long! The final test results, which the snotty consultant told me not to worry about (and the ones he wouldn't have ordered if he had seem me first) have come back as abnormal and they are worried this means the lump is cancer after all. I have to have an op to remove it. So gutted. Had Christmas back for a whole 2 days. He phoned me when I was walking the kids to their school disco.
Fear is back...
Sorry I haven't been on for a while. Just couldn't face logging in to the site and couldn't be trusted not to use it unwisely. Steve has actually banned me from evening internet use!!!
I've had the all clear!!!!!!!!!!!!!!!!!!!
It has been an awful few weeks. I found a small lump in my neck, went to clinic and they told me it was an enlarged lymph node and that it was (and I quote) 50:50 on whether it was cancer recurrence. I've had biopsy, ultrasound and CT scans and found out today that I am clear. Well, they haven't got the biosy results back yet ... but Professor (lucky i got him today) said he was happy it was nothing to be worried about and that he actually might not have sent me for all the tests in the first place!!
The fear has been raw and huge. Plus, clinic waiting time to day was 2 1/2 hours. Can't stop crying with relief!
Love to you all, Gem xx
Kate hope your operation went well,and you are recovering now it's a week now so I assume you may be home by now?
Anyway take it easy for a while,your body has got to recover.
Kate too it's nothing to do with feeling low,I thought the whole point of this was to give each other support?
But Ive noticed for a long time,there is no support everyone just talks about themselves as if the person hasn't even mentioned anything worrying about them even if a person asks something it doesn't get answered or any advice given??
It's as if your (not you Kate all of you)not reading what has been written?
I noticed first when I said I had them laryxngospasm's that I had a really terrifying time,(you would all understand if you saw one,look on youtube)and none of you mentioned it,maybe I am being stupid,but I really thought or we did support each other not just ignore what a person has said and just write about our selves.
Anyway thats how I feel as a few things Ive mentioned has just been ignored.
And we can't all just be getting on with our lives when were still run by breast cancer.
Jacknotyetinthebox how is your nipple now?
What will happen to you will they try to do it again? or will they leave it now?
A bit of mine has died now too,I think I told you that he said " Oh size wise it's not bad" (it is bad,very small still way too small) then he asked if we had any question's Steve said Caron is concerned about the size difference", he then said " yes it's a bit small,we can put a bigger one in" Oh great more surgery then!
I'm waiting to see about why I went blind still cos my dopey doctor didn't refer me a year ago when they found the dark patches,so Ive just got the letter but Ive got to wait a week to make an appointment (don't ask me?).
You all know my friend Mel who had surgery same day as me first time (mx) well (can't remember what Ive said so soz if I'm repeating) she just found out it had spread to her brain she had some radiotherapy on her brain,she came home,I saw her at bingo,next thing I know she died a couple of days later,I went to her funeral it was awful,really awful,her husband is heartbroken,I can't understand why they didn't look into her when she was having headaches,I mean she had to bribe them to get her scan !! it's appauling,they told her to go to her GP,(I told her to tell them BOLL**S!) so she said well I'm going off the trial then ,they got her a scan date then,but it was already far too late,it makes me think back how bad she was at walking,I just thought it was from the taxotere,but no it must have already spread by the time she had her surgery as when I saw her next only a week or so later,she was already limping then.
Last week (gorr bet you all think I make my life up!!) yeah last week Monday Jordan had been to my house with his girlfriend Beth anyway he went back to his flat Beth went home on her scooter Jordan text me at 11 pm saying Beth had come off her scooter but she was ok and having xray's next thing I know he's saying she's broke her jaw ! in 2 places,so they transferred her to Hull Royal Infirmary
as they didn't know if she needed surgery (she did),so Tuesday was spent visiting her then Wednesday Jordan rang me "where are you?" I said just near Scunthorpe now why? so he say's someone has just drove into his car (god it never rains!!) but he said " it's ok the lad admitted it was his fault and was willing to pay for the damage,so all well and good,then this kid's father rang Steve up and said "my lad said only the grill needs replacing" So Steve said " no not only the grill, the bumper,bonnet is broke,the scutter bar (chasis part) is bent which has gone into the radiator so that needs replacing" so the bloke was saying, " well I can't see how all that has happened,so Steve said well come and have a look if you like,so he said he would do,which he did come round,he said no arguments he knows his lad admitted it etc can he take it to his mates garage,so he did take it,anyway he was meant to have brought it back next day only noone heard nothing from him,so we text him,so he say's don't worry he is bringing it back in morning and getting it repaired on Thursday, so still all well and good.
Then the bloke comes next morning to bring his corsa back,and he say's "well I'm not paying for the radiator because thats alright,I'm not paying for the bonnet cos the garage said that was already done" (BULL,it wasn't done and the radiator was leaking) so Steve wiped the radiator and said look then where's all this water from? so the bloke said "it's not it's ok" then Steve said there was nothing on the bonnet at all,so the bloke said well it's got 2 or 3 dents in it,so it can't have all been done"
It had what had happend was this kid had some kids in his car all pulling faces to Jordan,then this kid goes to park his car only there were no spaces there so he reversed his car without even looking! and went straight into Jordan's car!,He hit Jordan that hard that Jordan's car bounced so hitting it again,but the bloke wouldn't listen he was a arrogant barsteward Steve told him it would be at least £300 to put right,but when the bloke found out how much damage there was he said he wasn't paying for the 2 most expensive things! so anyway the bloke said he's give £200 tops,so anyway then he said "well another witness has come forward and said they don't know if Jordan was moving forward (wouldn't have made no odds cos his lad was still in the wrong) so then Jordan rang this lad up,but this lad wouldn't talk to Jordan he just kept passing the phone to his dad,so JOrdan said " I don't want to talk to you,I want to talk to the driver at the time your son" so this bloke said " nowt to do with him,it's my car" so Jordan said " of course it's got everything to do with it" anyway this kid then ignored all the calls we made.
So I said I can see them not even given us the £200 now,so I said this is silly (we wasn't in the wrong,but anyone would have thought we was!,anyway we knew if it went through insurance it wouldn't have made no odds to us,but they would have wrote Jordan's car off,and JOrdan didn't want to do that) so I said right text him (so he didn't have to talk to Jordan)and say " I am giving you till 8pm tonight to respond either give me the £200, if I don't hear anything were reporting it in the morning" anyway they responded hour and hald later saying they'd bring the £200 round.
He's got it now Steve's going to have to get used parts now cos £200 is not going to cover it all,especially with the colour of the car it's a light green Corsa we all call it "the green pea" ! lol
Yeah so had a run of the mill normal week for us !
So got that to sort out.
Ive been making curtains for our caravan but there not any ordinary curtains I will have to show you when it's all done,it's taking me ages,I got my Nanna Peggy's sewing machine out,I inherited that cos I'm probably the only one who likes sewing in our family!
Tell you what it was smoking a bit lol (probably dust? steve oiled it ok now).
Eileen , I am certain you are right about the inherited gene but it just hasn't been found which is responsible yet,I have thought this for a long time,it's just too coincidental to be a fluke look at The Nolan sister's what is it now 4 affected by Bc only not genetic ! NO WAY HOZAY!!
They found something intreasting though recentley that we have a gene that protects us from getting breast cancer and they have found that in a certain number of women this gene has been turned off.
They are doing more tests.
Gail,I understand your fears I really do well we ALL do, anyway so maybe instead of just writing to one surely we ALL could help?
I hope it is nothing Gail,I hope you don't have to wait long for your results as worrying doesn't help.
I have had some pains at the back of my head not like a headache but stabbing pains, not constant like a headache,I hope it's stress related,but I want to get my eyes sorted out first before I start worrying about the next thing !
This is what I mean Kate we will never be free as awful as it is we are to live under this cloud.
Oooh nearly forgot to say guess what ??????????
I have lost another nail AGAIN! 3rd time now,its only the little pinky and the ring finger affected this time but it's still from the chemo,he said I was odd 6 months ago ! what am I now? why am I still affected 18 months later,I know it can still affect people this long later but not normally it doesn't.
Victoria thankyou for the post card I love Bakewell (I mean the cake!) yum yum yum .
Ive done some xmas shopping but still got to get Chloe and Jamie something yet got Jordan's and Owen's done.
Jo what you doing,I know you have women round you that are ill,so you might not be in a good place?
Hope everyone is ok. I'm sorry Caron you are having such a rough time and that you feel so low.
It would be good for another meet up. I went to see the Lion King on Saturday. I' didn't think it would be my kind of thing but it was spectacular.
I'm off to the hospital now. My op is 8.30 am. Not feeling too nervous at the moment.....
Thanks for good wishes,
Love to all Kathy
Sorry I've been meaning to come on here and write after Caron. She's quite low at the moment as she's got a fluey cold that she went down with straight after surgery and she told me yesterday that her nails are infected again. She seems to be having really bad luck with things.
We are still in the process of having two houses renovated (London and Rye) and it is time consuming. Can't wait until it is all over, and I have some free time back.
I spoke to my hospital last week and it seems like my revision surgery will be in the New Year so felt safe to book a break for Christmas in a hotel in Banbury right by Banbury Cross.
I'm happy to fix a date in January Kate and would be surprised if it clashes with surgery - as my impression it is likely to be in Feb/ March time. I'll email some dates through so I can copy in Jo and Gail. Wishing you luck with your surgery by the way.
Hope you are okay Eileen - keep meaning to call you as you are only just down the road, will try to next week.
Caron I can only beg forgivness if you feel I have been unsuportive recently. I do read the thread but somehow missed the fact that your surgery was imminent.
What are they doing about your eye problem. I know when I was on chemo and Herceptin I had eye problems and the optician was reluctant to change my prescription because she said it was a common problem and would settle down. It did eventually but caused me problems reading and watching the TV for months.
Kathy my Son in Law had surgery at East Grinstead for a really bad accident to his hand and I did some of the driving him to out patients appointments. The hospital may look small and old but it has a world class reputation.
V you work too hard!. A pink house sounds fun. One of my daughters moved into a house that was pink at the time but her husband refused to leave it that colour and had it painted white.
Gail glad you had a good holiday, just what is needed as the days get longer and winter approaches.
Jo I hope things are OK in your world.
Again Caron I can only say I'm sorry, forgive me.
Thank you Caron, I think I certainly needed a kick.
I assumed probably that we were all getting on with our lives and coping well. I, as you know, have so many other issues. Along with another move, my daughter having BRAC 2, more surgery including removal of ovaries and Fallopian tubes, various worries ( health and emotional) with my grandchildren, I have neglected my friends here .
I have brilliant friends, but not one of them can really understand what I' ve been through except you guys.
Victoria, let's choose a date for the New Year and plan something. A show would be good. I'm going to see the Lion King next Saturday. A treat before my surgery.
Caron, going back to your eyes, I think every thing deteriorates with chemotherapy. We know things such as hair etc are never the same. Unfortunately every thing especially opticians cost. My eyes are really bad, they have cost a fortune. If we were heroin addicts we would have free dental, optician costs and everything else thrown at us. But through no fault of ours we are in this position. IT MAKES ME MAD.
Have you had a diagnosis about your eyes? When I complained to the optician about mine, I was told the deterioration was due to age. I know it wasn't.
I went for my pre op assessment last week. I am nervous but they were vary reassuring. East grinstead is a small hospital specialising in plastic surgery and burns. They have said I'll be in for 7-14 days. At least 10 hours in surgery, 3 teams 1 on each breast and 1 for the gyny bit. They are not usually done at the same time but my surgeon felt it would be better, save having another anaesthetic.
I hope all is well with everyone. Has anyone any news of Jo and Gail.
Yeah thankyou Victoria and Jacknotyetinthebox,for your support,maybe I'm being stupid I don't know but I feel there is no support here any more??
I wrote about my eyes which could be very serious indeed not one of you have mentioned it??
I mentioned my surgery again same although Eileen you did wish Kate good luck??
I wish you good luck Kate too,I hope it's not too bad for you and not to painful.
Eileen its good that your wound has finally healed at last.
There is only me and Victoria who bother writing anymore,and we don't need to do this as I can speak to V anytime.
(your not included in that jacknotyetinthebox no offence X )
It is Shelly's birthday next week (13th) I hope Simon has peace in his life and has come to terms with losing Shelly?
I'm sure I will look on here the next couple of weeks to see if anyone has bothered?
good luck to all of you love caron xx
Ps - so sorry indeed to read about your nipple infection Jaqui, that must be truly terrifying. Hope you respond to the antibiotics. I need to go onto stormriders later to catch up.
I'm so pleased Caron is home from surgery - another milestone for our little group.
I'm still waiting for surgery too Kate, and was thinking just the same as you about the show. If we aim to meet in the New Year that will be something to look forward to.
That's excellent news about your seroma finally healing Eileen - you must be so relieved.
Glad you had a good holiday in Ibiza Gail, that's an island I've always wanted to visit given the links to artistic communities.
Hope you are okay Jo.
We are still in the middle of various building projects. The latest ones are having a new patio laid which will be made from Mixed Stock reclaimed bricks which have pinky tones, and then the front garden landscaped which is currently covered in horrible crazy paving. We are also having the house painted pale pink (Briar is the shade) as for some reason I've always wanted to live in a pink house! Ideally it would be located in the middle of the country somewhere, but that's not possible for practical reasons so we'll just settle for a pink terraced house in London.
Work is hectic but manageable and we are being kept very busy with the schools white paper coming out later this year. This week I'm off to Leicster to a conference and then the week after to Sheffield for a meeting.
Thinking of you all.
Love Victoria xxxxxxxx
Hi Caron, I wasn't going to mention my 'nipple story', as I thought you might have read it on the Stormriders' thread anyway. So if you can't resist it, it's there to read (but try not to - lol). Good luck for Friday, take care. xJacqx
Not sure if I mentioned that I had an appointment with the genetics people in September to test for BRAC1 and 2. Much to everyones relief neither of the mutations was found, it has just left me wondering as my Mum and Aunt had BC, about any as yet undiscovered mutations. They are keeping my DNA stored so if that is the case, in the future, and I am no longer around my girls can access my records.
I really want to whisper my next bit of news because it seems like fate making a big thing of it but finally after 10 months the wound left from my seroma surgery has dried up! Now I am waiting for the results of the new Bone scan that was done last week. I was a bit surprised because I knew I was having a bone scan like I have had before, but afterwards the doctor said he wanted a different type of scan done(not sure now but I think it was something like SPECT) I'm trying to keep the worries at bay but you all know what it is like. Because the bone scanner at my normal hospital is out of commission at the moment I had to go into London to Guys for it. I just hope the results are in the right place when I go next week.
Good Luck with your new surgery Kathy, I'm sure you will bounce back OK.
I will tell you another time about my recent visit to see Cliff Ricahrd - When you're as old as me that was exciting!!
What a lovely surprise for Steve! I don't think I could have kept it secret though. I'd be far too excited. Flatley can tap about 30 steps a second, so no wonder your photos are a bit blurred.
I'm sure your eye is unrelated but I would check it out with the doctor if I were you.
Every little pain and niggle causes me to worry these days. You're right Caron, my op is coming up (17 th Nov). I have my pre - op at 11.30 this morning . They are removing my ovaries and Fallopian tubes at the same time as op due to my hereditary gene.
Only one of my children has been tested so far, and sadly she has inherited it. We were both devastated but she feels that it is good she knows as she will be carefully monitored. I don't know what she will decide to do. But she has 3 children and her family is complete.
Eileen, you asked if I lived near Polhill. Yes very close. It is much better for us. Loads more room and agarden( still unkempt) for Bertie. My eldest son is coming over from Spain when I have my op, so I'm hoping he'll put in some work,both in and outside the house.
When we last met we talked about seeing a show. Due to the changing dates of my op, June,Sept and now Nov, it was difficult to arrange anything but perhaps we could do something in the New Year. Maybe a matinee and a meal after.
Hope all are well. I'll let you know how I get on. But it will be back to the waiting game as my ovaries and tubes will be analysed.
Sorry forgot to say I have been a sneak and I bought tickets to see lord of the dance MICHAEL FLATLEY Steve didn't know !!
I hid the tickets but I nearly got found out because I got frauded didn't I,so I thought Steve was going to see but luckily he never went back far enough PHEWWWW.
So Saturday I was in bed I said oh I'm off in the bath in a minute Steve,ok he says,then he said don't get dressed now theres no point get back in bed (he's a star) anyway I said it's ok he said no don't I said oh alright then but I had a bath and got dressed then I said "Steve do you want this water"?
He said no I'll see if Owen wants it,I said no it's lovely and hot just for you so in the end he agreed and went in the bath then he put something I wouldn't want him to wear if we were going out so I said you can't wear that put this on ! lol so he did then he said are we going out? I said yes and then I realised how early it was and I thought I bet he thinks were going to bingo (cos we would go early) so he said yes so I said yes thats it,we got in the van I said right we need to go on the M180 then A1 hahaha Ive got tomtom on my iphone Steve said he thought I was joking until we got on thr M180 lol I then told him we are going to Sheffield but thats all I told him arnt I horrible? lol I said I can't believe your not guessing he said well theres no point cos you won't tell me,haha yes he was right I wouldn't have.
Steve only knew when we sat down in the arena, there were posters up on the wall I said thats where were going to the circus then there was one for Hollyoaks (which none of us watch) so I said you like hollyoaks don't you? he said no Ive never watched it why have you?
Haha I'm horrible lol yes so anyway it was really really good Mchael Flatley crickey can't half move! we took loads of pics but loads of them are a blur where either the legs are or the arms lol
It was very expensive though the merchandise he was selling a signed photo well actually it was a poster and it was £50 !! needless to say I never saw anyone buy one .
I forgot to tell you about Jordan too he passed his driving test 2 weeks ago it was his 4th test, I drummed it into his head to not make any moves without checking all around anyway the driving tester said you need to move your mirrors you check far too much !
Jordan said " well thats because I failed on not looking enough" think the driving tester was quite shocked that Jordan hadn't passed before because Jordan only got 4 minors, but a copper we know said they are hardly passing anyone lately,which I think is damb unfair really,Jordan failed once because he was doing a turn in the road and a car waved Jordan to go on but he never they both waited again then Jordan did go so he failed for that!
The next time Jordan failed because a car again was waiting so Jordan didn't move this time he failed for it !!!
Anyway thats my moan over with xxxxxxxxxxx
I had a terrible scare Sunday night,I was just bobbing off to sleep when I realised I had some food ready on cafe world (don't ask!) anyway I got my laptop from under the bed served the food,put my laptop down shut my eyes, opened my eyes and thought my vision isn't as wide as it normally is,so I stared to panic I shut my good eye and out of my right eye all I could see was a grey circle on the outside of this I could see but only just,I shouted Owen and Steve I said Ive gone blind in my eye quick put the light on,my vision was all blurry but at the same time was coming back into normal focus.
It never lasted long I'd say about 1-2 minutes.
I don't know what it was? I hope it's not cancer deposits? would my vision recover if it was?
Once it's there it's there isn't it?
I was extremely tired it was 3am and Steve said if my eye was anymore red then he said it would have been bleeding.
Also there is a street light outside my bedroom that has got a intermittent problem and it keeps going off and on all bloody night long !
So this is my theory that at the same time I opened my eyes that the room was in total darkness and the street light went off at the same time,and you know what it's like if your tired your eyes can be blurry,also just before this I had a pain in my head,and I jut don't know if my mind was running overtime?
But also Ive found out about Mel so thats been playing on my mind also Shelly went blind didn't she so .................
I keep asking did I imagine it?? Steve said no cos it still wasn't right when I went downstairs.
Because it was 3am and Ive now convinced myself did it happen? so I'm not running to medics just yet,even if I did the outcome would be the same CURTAINS for me,so I'm waiting to see if it happens again so far everything has been normal.
Ive got my surgery this Friday Bommie night too so maybe Ive just worked myself up? any ideas welcome xxxxxx
Eileen are you ok ? also Kate isn't it your surgery soon? good luck with it xxxx
Please try and write everyone, Jacnotyetinthebox how is your nipple now,did it take long to get over?
I imagine it won't be as bad as the mx (I'm hoping) lol xxxx
VICTORIA thankyou for the lovely pussycat postcard you sure know how to cheer ppl up xxxxxxxxxxxxx
Sorry to be so quiet. I started a new job at Oxford Brookes and have been so so tired. I am now working every day again, although not full time. It's quite a shock not having a day of rest!!
So sorry to hear about your pal Caron. It's so sad. Like you Bright , I am up and down. I still get very very scared. Sometimes I feel lumps and bumps and I get all terrified and then find...it's a muscle or something. It's so hard to relax. I do think about recon Caron, but I can't face being a patient again. I feel relatively normal at the moment and the thought of surgery and then loads of weeks to recover fills me with horror. I know though, it would make me feel whole again. So difficult.
We are just back from Ibiza today. It was so good and so sunny. Quite a shock to come back to the rain. Yuck!! Hubbie's Dad lives there and it was great to catch up with him. Really love it there - so chilled out! Back to reality now!!
Lol - sending you a pm. x
Oooh really home that soon !!
Don't you have the drains then? that would be great if I can go home that soon mind you will it??
I'd have to make Owen a cake! better stay in hozzy lol xx
Hi Caron, op took about an hour - if that - so you shouldn't be longer than 2 I wouldn't think. Won't they let you home the next day on the 6th so you'd be there for his birthday? I came home the same afternoon.
Good luck xJacqx.
Oooh thankyou for that info,yes I am looking forward to having a nipple! as odd as it sounds,how long did the op take??
I'm just having an inplant and the nipple done so I'm expecting it not to be as long as my mx and recon (5 hours).
I know they look real when they are finished,the pink rose rang me today they have brought my surgery forward a week so gulp not long now in fact it's 5th November and my pre op is on 29th Oct.
So gunna be fireworks for me! It's Owen's birthday on 6th as well so thats 2 special day's I will miss,but never mind there's always next year.
V I know it's really bad for M, she is still laughing though,and I think she thinks she will get out of hospital this week,I hope she does so she can spend time with her family.
Just to butt in here .... Caron, I had the nipple recon on my LD flap recon yesterday .... and it's really good - feel 'normal' again. You'll love it! xJacqx
Caron, I cried so much when I read your post. Firstly because of so far we have all come, and secondly for poor Mel. You told me already, and I have thought about her all day. But seeing you write about her makes it even more real somehow. I think of Shelley and then all the other girls we have met on her and lost over the last two years. The whole mortality thing is affecting me again, I wake up at night and think about the disease. I'm starting counselling again next week as a positive step, and buying the wii tomorrow as another one. xxxxx
Forgot to say the asshole that broke into Jords car pleaded guilty cos steve and clo went to court if they hadnt gone he was gunna plead not guilty hoping they'd throw it out he got 4 months WOW !
he does it all the time does his time gets out commits another thats his life !! saddo
and the girls we are really annoyed about this cos the police reckon they are going to arrest them but they can't find them !! they know who they are and where they live btw ! but not letting it drop no way hozay . xxxxxxxxxxx
Eileen ::: Oh for a moment there I thought you was going to say your grandaughter got an eletric shock !!
But the burnt bum is bad enough poor girl,although sounds amusing bet it's not for her,she will remember that and be more careful in future.
It seems along time to leave you with an open wound even if it is small it can be a gateway for bacteria,isn't it maddening when they go back on themselves!!!!!!
Mine did too,he said he was going to find out what it wrong with my hips and back and I would have xray,bone scan and mri,so I had the xray and bone scan done then my appointment with him was getting closer so I rung up and said I hadn't had a mri yet,anyway she (nurse) said she can't remember if he had said that (I know he did) anyway because it's nothing to do with cancer then thats it this is the second time he has done this to me now.
I am worried about my bones etc but noone has mentioned bone strenghening to me so I'm on ziltch for them,but I know other ppl are so I don't know if to keep mentioning it or not??
I am now seeing onc every 3 months now as my herceptin has finished,it's nice not to revolve around the hospital.
Gail ::: I am still suffering with tiredness too,I can easy still sleep 12 hours if left alone,but it's only normally 1 day I am left to sleep the rest of the time,I set my alarm to get up but at the end of the week I am very tired,beause I still obviously need 12 hours and I'm not getting it............... wonder when I will need 8 hours again???
My friend Mel who I met at Grimsby Hospital as we had our surgery on the same day and Ive been friends with her ever since,she too was her2+ so we started hereptin the same week although different days anyway when we finished surgery,the next time I saw her she was limping then the next time she was using a cane,I asked her what they had said about her not recovering (from taxotere) and she said they have said nothing,I said well you should really find out whats going on,I think she thought it was still from the taxotere as my legs were terrible,so we all know how it affets us.
Mel was on the same trial as me for herceptin anyway she rang me the other week and said that she has told them that she is going off the trial ( because she'd been having headaches,and they said see your GP!!!) so she said that then they all took notice and ordered her a mri scan,I haven't seen her since then,the last time I saw her she was using a zimmer frame with wheels on,anyway I text her asking if she was alright she rang me and she said she has got secondries in her brain !!!!!!!! she's in Hull hospital now having radiotherapy.
Can't understand why she didn't insist on answers a year ago when her legs got worse??
She is still very upbeat and still laughing so ........... it's CRAP!!
Her sister was dx 2 years before her also her2+ she is doing well so it is important to have the gene tests.
Bernie Nolan was on thismorning did you see her?
I'm not sure if she is genetic or not but she said that I think it was 2 or 3 of her sisters had been through it already so I'm thinking 2 or 3 is alot if she's not genetic which makes me think that maybe they are genetic??? another gene I mean that they haven't yet found responsible?? after all the T.cell gene hasn't been known for a long time.
I tell my sister to check herself regular even though I'm not genetic,they said she wouldn't be affected because she's older than me???? don't know why they think that really??
Anyway I must admit I am doing good (thank god selfish as it sounds) My hair is still very thin but I'm getting day's now where I can draw my eyebrows perfect !! and MOST days NOT ! lol
I have lost my weight gain now 2 stone now well Ive got 3lb then I would be 10:stone 3LB which is what is normal for me well put it this way if I lose weight say to 9 stone then it's really hard for me to maintain that weight but if I'm 10.3 I stay that so I figure that must be my natural weight,anyway I'm going to try and lose a bit more say 1/2 a stone but it's hard to lose weight!! grrr
I do exercise daily I have to do 500 calories or I' not happy,now I wonder if I'm getting addicted to exerise! lol hated it all my life but that was beause I was made to run the country run at shool weekly and it's no fun when your affected badly by asthma whih I was, my asthma hardly affects me now,I think it was bad beause my parents both smoked and later I did,but know it's sort of tabboo to smoke now and it's the minority now who smoke.
God listen to me rabbiting on................
Hey I went to see my surgeon,he said I could have an implant (as the muscle that was used isn't big enough) and I could have a reconstructed nipple at the same time if I wanted!!!!!!!!
I said "yes please" don't know why but I really didn't miss my boob (I know it might have been different if I never had recon) but I did and do miss my nipple?? which makes me think I never miss the boob cos Ive sort of got one but I haven't got a nipple,so maybe ladies who are considering recon should go for it (yes that means you Gail!!!!!! lol).
I was quite surprised a couple of weeks later I got a date for the surgery !!!!!!! (here we go again GULP!) yes I will be terrified again but this time I'm also looking forward to having a nipple and you ALL ought to see some examples of reconstructed nipple you can't tell it's amazing what they do,they make a triangle cut it turn it inside out and sew it and sew it then later it's tattooed.
Victoria you never mentioned the bowling we did on the wii !!
V's gunna get one now,they are really really good I can't tell you how good they are really but it has certainly helped me to lose weight as you can do any exercise and it will tell you how mant cals you have used.
Anyway thats me all done hope you are all doing well,and we all need to keep writing (says me even I left it)but we do need to keep this going you never know someone might have seen what we have each done say V having the coldcap or E having the seroma or me having recon you get the picture but they might want advice on something?
KEEP WELL XXXXXXXXXXXXXXXXXXXXXXX