I am now going to have to wear my cheap plastic headband ears for a while to see if they hurt. If had more hair it might be all right but now listening to Pixie, i am not sure and time is getting close. Got part of my pressie today -had one idea but eldest daughter gave it the thumbs down so had to go with her idea!!.
Rads- yes southpool, I too have to get into acceptance mode as the 2 months since chemo made me forget for a while about BC and its now back on a daily basis in my life. It doesn't help that it is so difficult to park at my Centre and so have to leave work at least 75 mins before appointment, drive 12 miles, spend 25-30 mins driving round multistory car park getting more and more stressed as time is ticking away, then find there is a message in Rads to say running 1 hour late. Grrrrrr. However, acceptance is the key so with 15 more to go I will probably manage it soon!.
Went for lovely long walk today with my dog and then because its allowed, called in gym and had a swim. Wonderful.
I don't understand the Hormone tablet decision either- I am post menopausal by 9 years but I am on Tamoxifen for 2 years and then AI.
Hi again ladies, do you think this is a bit odd??
As I said before I finished last rads on Wednesday the 10th October, I got a letter from the hospital today to say that my next appointment with the Oncologist is the 10th January 2013 ?????????
3 months away???????????????? Am I now just abandoned with no news if they have got it all????????? am I all clear for now??? or what?
I know I am a bit different as wont be having any hormonal therapies, but to leave me all alone for 3 months????? is it normal??? Wouldnt have minded a little chat with him before then !!!!!
Thank you for your comment on rads. I have been trying to rebel & ranting and raging against rads & I just need to 'suck it up' like I did chemo. So downloading some quality chick lit to my e reader & going to take it as a chance to read & will drive in OH car as it has DAB & that is a chance to listen to my favourite radio show.
I had a long discussion with my ONC about why she choose Tamoxifen rather than an AI as I was peri menopausal prior to treatment & haven't had a period for 7 months. She says she will keep me on tamoxifen for at least 5 years rather than switching me as it works in a different way by stopping the hormone & cancer connecting, so works regardless of whether you are menopausal or not. Fingers crossed I have found it ok, some flushes, a bit of moodiness & some aches both of which have improved over time. Hope it is good for you too.
The article on Cherie Blairs site is fantastic, so bunnies get checking it out. I will check with MIL how many of the bowling league in Carlisle want Xmas happy bags and give you plenty notice as it is certain to be another shipping order!
I have ordered my bunny ears, black with flashing lights, but am now panicking that they have a plastic band. Bought one part of my present in Turkey & the other is on order. I am very excited and can't wait to meet everyone. Ambarose is the other person joining us.
Love & virtual hugs to all
And as Pixie said where the hell are you Vanns. Wave a paw xx
Firstly, margie, try not to stress lovely bunny.... BCC moderators like the rest of us have a modicum of subjectivity. I have been censored several times - never for swearing. I got censored for sharing my website link, referring to my oncologist by name, making an inappropriate comment about men.... no point repeating it or they will censor it again.... and several other things as well, thts what you get with an open forum. Whatever was deemed offensive in your post, none of us will have seen it before they took it down.... so pick up yor ears lovely bunny, fluff out that tail and get flouncing back to the front of this warren becasue I have news... lots of it.
Okay, first news, today Cherie Blair wrote an article about me and my Happy Bags on her website. i would love to give you the link but the moderators would remove it. Its on my facebook and if you want to read the article, please message me for the link. Of course, i am as pleased as punch and the orders are rolling in this evening and am thinking of having to re-instate the MacMillan 3 for the Xmas sacks!
Second news: Jig saw company sent me auntie mary a replacement jig-saw but she still isn't happy.As she says, she only wanted the 2 bits she was missing. She doesn't want to do the whole thing again nor sort through 1000 pieces to find the 2 she needs. So has written it down in her ring-binder and has written them a letter asking for a new jig-saw as compensation for her disappointment and P.S she doesn't like anything with too much sky. beggars belief doesn't it?
Third bit of news: very very important - all bunnyfesters. The hotel have asked me to send a list of full names of all attendees - proper names not your bunny ones. I have some already, Southpool, Namar, Hilary but no others. can you please message me asap?
In terms of who is bunnyfesting, well I don't have my list to hand but as far as i can remember, Natalie, Hilary and me will be arriving on the Friday and staying the 2 nights. On Saturday night we are joined by Southpool, GMT, Sarabee, Libby, Margie, Sameelee, Sara, Big M, Rachel Vanns is coming for the day only. If I have that wrong .... don't panic, my list is on other computer.
Christine is unfortunately unable to join us now.
I have put together a programme for the afternoon and would like to post it out to you - if you have ordered happy bags, i will have your address - but reason i am asking for names again is that i haven't got anything thst links hapy bag orders to our forum names. If you have not rdered happy bags, well shame on you... but please do message me your name and address so i can get Bunnyfeste programme out to you.
My ears came today - 2nd lot. First lot were the usual plastic headband and after wearing for half an hour, they made me head hurt. yes, i have been practising. new ears have lovely soft fluffy headband and have worn then since 6pm and have them on as I type.
Southpool, I found the time element of the rads frustrating at first but quickly settled into it - acceptance is key. My rads were all very targetted as they had to avoid portacath as well. Day 2 without Letrozole and already my joints and leg muscles feel easier. Bit concerend as know Letrozole is the best endocrine out there but if I can't tolerate it.... I hadn't gone through the menopause when I was diagnosed and was on HRT so onc feels that Tamoxifen may suit me better and I can switch to an AI after finishing herceptin.
So excited about Bunnyfeste weekend..... am as busy and buzzy as a bee with preparations..... I shall also bring Pixies Xmas sacks with me if anyone wants to buy (saves me postage costs)
Eldest son came for tea this evening turned up with chocolates and flowers for me.... shall never shift this blooming weight!
Right, thats me done.. Margie, get back here bunny!!!
I have had my 2nd rads and already I am hating it with a passion. Trust me to be the person who hates rads more than chemo!! It is 3 hoursout of my day every day for 4 weeks and it just feels so intrusive. I am having rads to my chest wall & the nodes above my collar bone & the skin on my collar bone feels sore already. Like Sara & Pixie I am hoping that my years of topless sunbathing combined with my twice daily oiling with bio oil will have strengthened my skin, but have convinced myself my collarbone area is going to scar! Has anyone else had rads to neck nodes & if so how was it?
Sorry to come on moaning but my hatred for rads has rather taken me by surprise and I am really fed up.
Hopefully off to Harlech tomorrow until Sunday so that should cheer me up.
Back from Cyprus which was lovely, except that I felt so inhibited about my hair. I kept the wig on all the time, even though it was hot, because I felt so conspicuous. I only went in the pool once, and that was at 5pm when nearly everyone else had gone. I suppose it is stupid but you can't help how you feel.
My hair is coming through pure white and fluffy. Does anyone know of a suitable non-chemical hair dye that I could use to make it look a bit better?
Interesting comments from lots of you on mis-diagnosis and delays - my GP and the Big Cheeseat the breast clinic both told me my lump was scar tissue, the Cheese even going in to writing to say it. SO it was several weeks before I had the mammogram and biopsy. When I went for the results I was expecting a confirmation of the experts view so it was even more shocking to hear I had cancer. It was only by chance I had a friend with me - she had a bad feelign about it and insisted on coming with me which I ended up being very grateful about.
I am having my portacath removed on Tuesday. Not that they have written and told me yet - I just went to the hospital yesterday to ask if there was any news because my neck is so uncomfortable with it and they told me I am booked in on Tuesday! You have to be psychic! I expect the letter will arrive on Tuesday morning. It's typical of me to be a pain in the back side and go in to check, but it's just as well I did. I was going to say pain in the a**e but was worried by Margie's upsetting experience with the censors.
Really looking forward to bunnyfest now. Not long to wait.
Margie, I can understand how you feel, but be assured none of us have found anything you wrote offensive in the slightest. Other bunnies are probably right to suggest it's either an automised pick-up or the comments about hospital errors. I do tend to forget that all our posts are read by people other than us!!!Let us know when bc contact you, but probably best to brush it off.
Sorry to hear you are poorly, Wendy, and Pixie, that is fab news about the Happy Bags. Brilliant to be recognised for what you are doing. Thanks for posting the pigeon story: we had the same problem some years ago in our old house... i remember it not being very funny at the time, though, as I'm a bit squeamish about birds. Lovely through binoculars though.
Bunneyfest approaches... yes, 11.30 outside ticket office sounds a good idea. My train gets in at 11, so will grab a coffee. Pixie, is it possible to let us know how many of us are going on the 27th.... I seem to remember it was about 15 originally. Has it changed, and how many of us are staying over. Sorry. don't want to give you even more work!
it's interesting that some of us are having drugs changes- I am having real issues with my feet and finger joints and generally feel very stiff. I think this is normal on Anastrozole, though. I did google Letrozole and found that it is supposedly a better drug now, but am worried about asking to cahnge, as it would seem there are no easy answers to the joint problems. Like everyone else, I can't help worrying about the fact that it's FIVE years that we have to take these pills! Such a long time to be feeling eighty when I am only 57. I should be peaking now, not sliding headlong into old age.
Then.... (there is always a 'then') .... i have to remind myself of the job that these drugs are doing and try not to whinge. We went to see The Last of the Haussmans last night at NT Live. A reminder to myself to get out more, book stuff in advance and live for the moment, stiff joints and all.
Love to everyone for continued wonderful support. Had to send my bunnygift back as I ordered it on the internet and it was complete rubbish. Not worth ten pounds of anyone's cash. So am on the hunt again. Have ears, but sadly they are pink and completely over-the top. Will have to glue them to scalp as they don't stay on.
be back soon,
Just a quick post to echo what others have posted. Hopefully bcc will get back to you soon and put your mind at rest. I too cannot think of anything that you have said that could cause offence.
Well, radiotherapy done and dusted, now have chest infection and bronchitis so back onto 5 x steroids a day for a week plus Amoxillin. When will this pill popping ever end??? Doc says its because immune system still not up and running properly after chemo, so my cold had developed into bronchitis!! Just when I was beginning to feel it was nearly all over this happens! must have picked up original cold from hospital as havent been anywhere else lately !
I just want to feel normal.................... is this too much to ask !!! grrrrrrrr..................
Sorry for moaning.....................
Margie -quick note from me. You haven't said anything remotely offensive, you have provided fabulous support to us all in our hours of need. I was censored a while back for mentioning my onc by name, so it maybe something to do with the posts about the dreadful mix ups at your hospital.
Please don't take it personally, particularly when having to deal with the horror that is rads!!!
Dear Margietee - Please do not get yourself upset it has to be a mistake of some sort. There has nothing ever been offensive I am sure to anyone, ever written by you or any other bunny. So please, come quickly over to the spa, hop into the hammock and the team will give you a lovely gentle massage to ease those strains away.
Margie - just a quick note to say that I can't recall you posting anything remotely offensive in all the months that we have been posting here. Don't let it get to you - it might be some sort of automated check that has interpreted things wrongly... hope you do get a swift explanation. At first I thought it might be because you'd referred to a 'cock up' a couple of times, which an automated system might object to - but then those references haven't been removed, so perhaps not. Anyway, I'm sure it's a misunderstanding.
i have been censored. I saw last night that I had a pm in my messages and went to open it in great excitement wondering which bunny had got in touch with me, only to find it was from bcc to say they had removed some offensive words from one of my postings. I pm'd straight back to ask what I had said and in which posting and await their reply today.
i have gone through every possible emotion since receiving their pm. From confused to angry to devastated. I was so shocked that I Have apparently said something offensive that I feel as if I have been trodden on by a big hobnail boot and crushed. I have gained so much support and benefit from this forum and hope I have given some back in return and in an instant I feel bcc have taken so much from me. I feel I have been punched to the ground and kicked. I perhaps this sounds extreme but in the vulnerable post chemo / currently having rads state that is how I feel.
i apologise to all you lovely bunnies if I have offended you. You all mean too much to me for any offence to have been intended.
Back from my 1st rads & feeling very grumpy! Rads itself was fine but I am covered in pen marks & have a big plaster on my collarbone to protect one of the marks, I am going to have to be really careful what I wear for the next 4 weeks. Being on holiday & back at work normally have helped me stop feeling like a patient & now I am back to spending 1/2 my bloody life travelling to or waiting for hospital appointments it brings it all back. All this combined with the sea of pink we are faced with every where we look in October there is no chance I can forget about bc. Raged at Debenhams window on my walk to the station today, massive posters about bc awareness surrounded by the type of bras no bc sufferer could wear! When did bc awareness become about marketing opportunities for pink products? My bunny ears won't be pink as a protest!
Pixie your story of the pigeon made me roar laughing so I looked like a mad woman on the train, glad your meds are being changed, I have found tamoxifen ok apart from the occasional raging mood (think I'm having one of those today). That is brilliant news about Cherie Blair, I've always been a fan of hers (working class woman reaching the peak of her profession), but now she has gone up in my estimation by recognising the genius that is happy bags!! As Sara has said you must send us the link & step away from google!
Hilary when I lay on the table today & closed my eyes I was at Campos spa, lying in my hammock with the sound of the waves in by ears. Although it was slightly disturbed by the disco background music in the room. How can they expect you to lie still when they are playing great dance music I'm not quite sure.
Feeling much better for being able to vent on here. So looking forward to Bunnyfest & 11.30 at the ticket office sounds good to me. I will be the one with the high necked clothing.
Pixie, loved the mucky pigeon story! Glad your meds are being changed and hope your scan results are reassuring when they come back. And I'm echoing Hilary - step away from Google!
Congrats on the Cherie Blair promotion - you'll have to give us link to the site when the details go up.
About avoiding banal conversations with nurses - was chatting with one of mine and she said that some people won't/can't have conversations with them and it's awkward.... and she said 'and it's worse when they don't even have the TV on'. Now, I'm not a daytime TV person so it would never have occurred to me to put it on - but perhaps that's your answer... let the nurse choose a programme to watch and then you can get on with other things whilst being infused.
Elaine, glad your boob is recovering. I'm a bit nervous about rads which I don't start until next week. Met up with a friend who has just finished hers a couple of weeks ago and she had a lot of pain and redness then her skin broke down and apparently she now has open sores.... yuk! Like Pixie, I'm hoping that my years of topless sunbathing in my younger days have toughened my boobs up.... we'll see.
Pixie you certainly make us laugh. Loved the story about the pigeon - you have got to keep these gems and put them in a book. Congratulations on being recognised by Cherie Blair - sounds like you are going to go viral - congratulations again. Step AWAY from Google - you know the golden rule. So looking forward to Bunny Fest - hope you are not going assess our behaviour at the end of the day?! Special hammock & punkawallah waiting for you at the Spa whenever you are ready.
Hugs & Kisses
Have so enjoyed reading all your posts. As ever, its like catching up over coffee with a group of dear friends.
Well, just over 2 weeks to bunnyfeste, how exciting is that? Have a scheduled call with Chrissie, our events co-ordinator today to do final confirmation of numbers and the running order of the event..... Now come on, you didn't think I was dragging you all to Birmingham for just a sandwich and a chat did you?
Split boobs sound horrendous. I suggest superglue. I was lucky with rads and had no skin probs at all, probably due to years of topless sunbathing that have desentisized my skin.
YesterdayI had my steroids and herceptin and all went well. Do find it difficult having nurse here for over 3 hours. Ones I have had so far are not really my type and i struggle with bnal conversation for 3 hours. However, she was very good and gentle so remain grateful.
Saw onc yesterday afternoon. He has immediately stopped Letrozole. Said the se's i was experiencing were too extreme. Going back in 4 weeks to see if i am better and will then try me with tamoxifen. He has also booked me in for an MRI scan and a further Muga scan on my heart.
Bit concerned about MRI at this stage in the proceedings...... They are scaning my right shoulder and arm. Ultrasound scan didn't show anything untoward but i still have very limited use of arm and severe pain on certain movements, up until now believed to be from portacath mess. Finding it hard to resist googling secondary bone mets 😞
Exciting happy bag news. Got an email yesterday from Cherie Blair asking for permission to write an article about me and my happy bags for her website. Can i send her a photograph of me and one of happy bags. Of course shall send photo of Cameron Diaz but the happy bag one will be genuine. So, looks like me and my happy bags are going viral.
Mother had a trying day yesterday. Had her central heating serviced. She has an open flue gas fire and when engineer pulled it out to check it, he discovered 2 dead pigeons and one not quite so dead that had come down chimney. The not quite so dead one covered in muck and dust proceeded to start flapping all round mother's front room. Engineer trying to catch it by billowing dust sheet over it, spreading more muck and dust and mother waving the Daily Express around like an ack ack gunner trying to swat not quite dead pigeon whilst keeping an eye on her best bits of Royal Doulton. Engineer managed to trap it under dust shhet and carried mucky and dazed pigeon onto front lawn where it sat for half an hour before flying off. Mother said her room looked like a right bloody midden and it took her hours to clean up all the muck. She has now ordered a bird grill for chimney pot as inverted chip basket dad had put on donkeys years ago must have fallen off!
Hope sore feet are healing, split boobs are knitting and worried ears are calming. If not, off to the spa you go.
Hi all sorry I havnt posted in a couple of days but lap top had to go in for a repair. Anyhow, Gaynor I am not going back to work until January, I dont feel ready yet, and my doctor agrees, so I am going to look after myself and go back once I feel fit and well enough, wish I could retire but need to keep working for a couple of years yet. Pixie hope everything was ok today I have been thinking of you. Well finally got my ears for the Bunny feast, but still have yet to find a present, not many bunny things to buy so I will have a search on the internet. Boob is now looking alot better the redness is going down and it feels less tender. I had a good chat to my ONC the other day re the trial I am on that is 6 months herceptin v 12 months, he is happy for me to be on the 6 months and does not see any benefit of having 12 months, so I feel much better about that, also said that I was low risk for it to come back, but I still worry, like Christine said cancer plays with your mind. Some days I forget it, and then I have really dark days when my head is all over the place, and I am still very emotional, cry at anything!!!. On a cheerful note really looking forward to the Bunny Feast , I am now staying overnight so dont have to rush back. Could do with a few days at Hilarys spa, can I book in!! Love to all Elainexxxx
Ive also got the downy face thing going on. I asked my oh if he'd noticed and did say he could see it when the sun was shining on my face ! Bring on the rain, is all I say. Did some rather harsh exfoliating and now have a sore, dry face down one side.
I saw GP Friday and she gave me a note for another 3 months saying I needed to be much stronger physically and mentally before thinking about work. She also said that we should look at it again in Dec and will support me in whatever I want to do. She also advised booking a holiday.
Im not sure about work, I didn't enjoy my job before all this. I've got some savings, which if I'm careful can last a few months and my oh does have some work, though not always regular. So I am seriously thinking of handing my notice in but can't help feeling guilty when I read of many of you back full and part time. I feel perhaps I should just get on with it but I feel quite ill at the thought of work.
Enough doom and gloom. I've gone to stay at my sister's for a few days so hopefully we'll get out and about a bit.
Love to you all, forgot to look for bunny ears again. Does anyone else go out shopping and come back with everything but what they went for?!!
Had first Rad today and all ok now I know what to expect. Must admit was a bit apprehensive lying on table with green lasers all over my chest being moved oh so slightly this way and that by lovely antipodean male radiographer/punkawallah.
Amazing how one does not really care who sees breasts now. Reminds me of when I breast fed my babies-they were out all the time!!
One bit of interesting news is that they told me that their protocol on swimming in chlorinated pools changed today together with deodorant on affected side armpit. Apparently it is now OK to swim in pool and also use deodorant on that side. So no more smelly bunnies in this neck of the woods!
Southpool, Sameelee and sara 12 perhaps we can meet on bunnyfeste day about 11.30 outside the ticket office- I do not know the station so cannot suggest anywhere else.
Pepihorse - Congratulations on your last day of rads.
Southpool - Sorry to hear that the holiday is now a memory - good luck with the start of your rads and be good to yourself as you will feel tired.
Margieteee - Sorry to about your Hospital's problems - as been said before you dont need the stress. Enjoy all your activities - sounds like fun.
Sarabee12 - Pleased to hear your GP is so supportive. You have a lot on your shoulders but nice to know she is in your corner making sure you are okay.
Chrisp1e - Seems to be a common theme with misdiagnosis, late diagnosis, missing scans etc. I found my lump on 2nd November last year, doctor very quick to arrange mamogram and ultra sound. Mammogram goes missing and Doc unable to progress further without the result. If it was not for the persistence of my translator who knows all the medical staff and was able to get the staff to go looking for it, I would of been waiting even longer. Called for a further mammogram on 21 December and it was January before I had the biopsy. Anyway, still consider myself lucky as caught the bugger early.
Sameelee - Like your description re the Angora jumper on face. However, I would rather have the Angora on my body and not my face!
Ambarose - Good luck with starting rads today.
Rache1p - Hope you are feeling stronger. Split boob - eeeeek!!
Sara12 - Thanks for the link for life after c - shall read that today. Hope you are not losing nails too often!
giraffe50 - Congrats on finishing your rads. Thank you for thinking of us with your flashing bunny ears - would love to see a pic.
Little Chick & all other bunnies - big waves to you.
Well I am back to reality & have now worked two 12 hour days on the trot! Already my fabulous holiday seems a distant memory & start 20 sessions of radiotheraphy on Thursday. I am leading a large change programme at work at the same time so will be working until 2 then getting the train back to Liverpool & then driving to the Marina Daglish centre for treatment, so it will be a busy 4 weeks! But I am sticking to my pledge never to work Fridays again.
Pixie I hope you get some answers to your portacath problem tomorrow. Loved the jigsaw story, your Aunt has every right to be indignant.
Hilary I've also got a downy face & am very grumpy about it. I have bought cream & wax strips to try & sort it. Also it is more obvious because my hair is so short. Lee I like your description as an angora jumper that describes it perfectly!
MarGie that is awful to hear your hospital is having so many problems, it us something else to worry about as if we haven't already got enough going on.
On the good news front my hair is thickening nicely & Susie has been well & truly binned. I can do without everyone wanting a feel of it at work though. My nails are hanging on in there, my eyelashes are peaking through & my eyebrows are emerging nicely.
I am really looking forward to Bunnyfest & meeting everyone. My train gets in at 11.15.
Well, it seems the problems Kingsmill Hospital have had with breast cancer pathology were to do with oestrogen receptor tests undertaken between 2004 and 2010, so before my time thank goodness. This led to some unfortunate women not receiving oestrogen therapy which might have benefitted them. But this morning someone is quoted as saying some other women may have had chemo when it wasn’t necessary. I think there is a lot more to come out of the woodwork. I'll keep you informed. As for mammograms missing tumours, I've always known this is quite widespread - what bugs me in my case is that they clearly saw something on my November mammogram as they did recall me. But I am convinced their 'cock up' was that they recalled me for the wrong breast and that's why my tumour was missed at that stage. I really feel for those other bunnies who, like me, were missed for whatever reason. It is so interesting to compare notes.
Kingsmill Hospital has a raft of problems at the moment, aside from this pathology problem - they have no money. It is a lovely hospital, really bright and modern. It's only been open a couple of years, but was built on a private finance initiative and of course now can't afford to keep up the repayments. The Chief Exec has resigned and now all sorts of investigations are going on into the way the hospital is run. The one thing I keep holding onto is that I cannot fault my surgeon nor the chemo team (other than the nurse who messed up my veins on my second infusion, who I will never forgive). I've been satisfied with every other aspect of my care so far. We can't and mustn't dwell on the what ifs as we'd all go mad. We just have to deal with the what now and try to think positive, though heaven knows, with splitting boobs (sounds horrific), nails dropping off (ouch), sore feet, sore boobs, facial hair, no energy etc etc and of course Pixie's portacath problems and everything else we are singly or collectively going through that's not always so easy. I’m thinking of everyone and sending love. Not mentioning people by name today because I’d be here forever, but I do just want to say to you Hilary that I was so sorry to hear about your friend. How terribly sad.
Onwards .... we had a fabulous time with our son, dil and 2 grandsons over the weekend. The sun shone for us and we went in search of Robin Hood in Sherwood Forest on Sunday. I managed to hobble around the forest – the paths are really well laid out, so that even wheelchairs and mobile scooters can get around so hobbling was possible!! This week we have my OH’s company accountants annual do tonight in Peterborough, themed around the 1960s, and then my sister coming overnight on Thursday. Next week we have my other dil’s am dram show to go to – it’s a musical comedy (The Drunken Chaperone if any one’s heard of it) and she is the lead female. A talented young lady!!! And this gives us the opportunity to see our third grandson .... and then in no time at all it will be bunnyfest. Whoo-hooo!!
Better get on and get dressed, then pack a suitcase for tonight. Southpool, you must be back by now. Hope your fabulous holiday stays in your mind for a long time. Great you are booking ahead for next year. Pixie, good luck for tomorrow. Nat, Vanns etc, where are you? Hilary, the naughty punkawallahs are still drawing on my boob, but only 9 more rads to go!!!
Take care lovely bunnies. Love to you all.
PS Bummer, my internet connection has gone down ... luckily have saved this post onto my Word docs so will try and send later this morning ..............
Oh PS. I have hair on my head - am rocking the skinhead look. And the eyebrows may need tidying up before long! Bad news is that my moustache has come back first together with a few chin hairs. Was initially pleased but now a bit cross that they had to come back first... lol!!!
MarGie - glad that you weren't involved too much in the problems at the hospital. It's worrying enough without additional stress on you.
Pixie - loved the story about the jigsaw, has Auntie ever considered working for Watchdog?
Hilary - sympathies and hugs to you over your friend. Am sure that she'll get plenty of strength from your support.
Chrispie - I too am having melt downs about work and I haven't gone back yet. My boss has already suggested that I head up a new project for the company when I get back and has pinned me down to going back into the office at the beginning of November for a kick off meeting. My problem is that my OH is still unemployed and has found it difficult to get something so I am having to face up to reality pretty quickly that if I don't go back soon we will be in even more financial straits than we are now! Good for you retiring though and am sure that it will help your recovery over the next few months not to have the stress.
What else? Well, last rad session tomorrow - boob now looking like a burn and my underarm is sore all the time. The nurse today said that it will continue to get worse over the next two weeks, so that's something to look forward to!!! I won't miss the early morning rush hour traffic though! Am off to my GP to get an extension to my sick certificate as she wants me to have two weeks off without any treatment before considering going back to work. I will also talk to her about my phased return and what she thinks. She's been brilliant from the start and has always said that it's my recovery that's the most important thing.
Read the article about life after cancer and also Helen Fawkes blog where she makes some of the same points about what do you do after your treatment ends but you still feel awful. Am reading the Macmillan leaflets but probably will get the book too. Might download it on the kindle!
Okay, that's it for now. Hope all the bunnies are coping and looking forward to seeing the bunnyfest mob soon.
Sorry to hear about your experience margietee. I too had a bad experience. Went to. Gp with breast lump and was told it was bony callus as I had fallen and broken a rib 6 months earlier. 6 months later I still had the lump and my breast was changing shape. I had a grade 3 tumour with lymph node involvement. Had it been diagnosed properly the first time.....who knows? The outcome may have been different.
Thinking about you. Cancer plays with your mind all the time. We'll it does with mine and I'm sure everyone else experiences this even if only at times once they become more confident.
Regards to all
Hello everyone, just want to offer support to all those worried bunnies out there. We have to put so much trust in other people, and it's awful when things happen that make us question everything. Fingers are well and truly crossed that all worries are put to bed soon. It never ends, does it? Keep us informed, please, and feel free to rant as much as you want.
Hilary, I also seem to have a downy covering on the sides of my face. It is pale, , fine, and not noticeable from a distance, obviously, but it catches in the mirror. A bit like a vey good quallity angora jumper. But on your face.
Am tempted to slather hair removalcream all over, but will probably be horribly allergic. If it has grown unmanageably long by bunny fest time, at least you will all recognise me . Will be wearing a balaclava.
Will check in tomorrow. Sleep well and try not to worry. Hello to long lost bunnies?
Hi Bunnies, what a lot of news I've just read and some happy and some sad. Really feel for you Hilary supporting your friend and the sad outcome. Pixie-hope Weds goes well in the medical world we all inhabit now.
Margie, it must be worrying for you - I am not at the same hospital but I too had a routine 3 year mammogram in November 2011 in one of the caravans sent round to rural areas, had letter telling me all clear and then felt my lump in February. Mine was 15mm Grade 3 and fortunately not in the lymph node but despite asking to know whether they have reviewed the mammogram from November , everyone seems to shrug it off. Its "difficult" apparently as it was done by Oxfordshire and I'm being treated in Berkshire!. The thing is that the treatment would still have had to happen but if I had not felt it who knows where I would end up. It just makes you worry that little bit more-I'm feeling my other breast to check for lumps very freqently now!.
Southpool, Sameelee and sara12- perhaps we can PM southpool with our train arrival times for Birmingham as she has all our details and then we can agree where to meet in the station-I am not wearing my bunnyears till I get to the hotel so it may have to be a pink flower or something!
Start Rads on Weds pm so its good to hear what you others have found about it. Wonder why there is such variation on drugs-I know it depends on Oestrogen receptors etcbut there is huge variation -I am on Tamoxifen for 2 years and then being changed to something else. Have put repeat request in for 3 months so will let you know what happens.
Margie, Had similar experience myself, had mammogram, got letter to say it was all clear, even though I felt a lump, so ignored lump as letter said I was all clear, it kept growing though and I eventually went to GP who sent me to a different hospital (as I had changed Drs surgeries) and the lump showed up on their mammograms and ultrasounds, when I told them about the one I had at the other hospital,just 3 months before, they were astounded it didnt show up, and was going to try and get my notes and copy mammogram from them, but I havent heard anymore about it. By the time I had it removed it was 5cm and had also gone to 1 lymph node. The hospital that did mine originally wasnt the same one as you it was the James Paget at Gorleston in Suffolk. I am now under the Norfolk and Norwich. So it goes to show that hospitals do make mistakes, but unfortunately, they get covered up as its still all the NHS.
I just wish I had changed Drs surgeries sooner, maybe it wouldnt have gone to the lymph node if I had, but unfortunately, I didnt, and as I had a busy lifestyle then, I did not pay as much attention to it as I should have I suppose, if I had, I may have got away with a lumpectomy instead of a mastectomy.
We do seem to be having a very similar experience, what with the aches and pains and the red hot feet too !
How are your feet by the way, any better?
Margie, I had just heard the news about Kingsmill Hospital on the radio - how worrying for you - particularly in the light of your original experience, which sounds incompetent to say the least. How fortunate that you felt the tumour for yourself. They say that they have already identified the women whose results were suspect, so if you haven't heard anything, hopefully that's good news.
Not surprised you needed to offload. You could always call the helpline they've set up if you're feeling unsure? Hopefully you'll feel better when more specific information comes to light.
it never rains but it pours. Have you picked up on the news that kingsmill hospital in Mansfield is undergoing investigation about misdiagnosis in breast cancer patients, mainly it seems they have had problems with the pathology of bc patients. Well folks, that's my hospital. At the moment I feel numb, trying to digest the news and wondering if there are any implications for me. I think probably not, but nevertheless it is really worrying. Just as I was reading the Guardian link from Sara's post about people having long term worries after they finish treatment, this news popped up on the bbc online newsfeed. Great. I've never been able to reconcile in my own mind the fact that although my tumour was only 1cm and I was told it was a young tumour, grade 2, and yet in a matter of weeks it had not only grown so that I could feel it but it had also spread to my lymph nodes.
ive never gone into the cock up of my original mammogram here on the forum, but I'll share that with you now. I had a routine mammogram in mid November 2011 and was recalled for a further mammogram and ultrasound for my right breaSt. This was done in early December and I was given the all-clear for both breasts and told I needed no further examination until my next routine mammogram in what? Two years? three years? Not sure which it would have been. Then less than three weeks later I felt the tumour in my LEFT breast. I paid for the original mammogram to be reviewed by another radiologist and sure enough the tumour was showing in my left breast in that first mammogram. My only conclusion is that I was recalled for the wrong breast, but I've always thought what if I hadn't felt the tumour myself, how long would it have gone undetected and would it then have been too late for successful treatment. I'm now thinking were my margins really clear following surgery and what else is going to come out of the woodwork at kingsmill hospital.
sorry this post is an offload from me. Just had to share it all. I'll try and post tomorrow to answer other people's posts.
I am still here, just exhausted!!!! It's like my body is so relieved all the treatment is over it won't move!!! Very frustrating when all wnat to do is get back to normal. Whatever the hell normal is, I can't remember.
I have done a little bit of work (freelance) and some more applications.
I have switched to letrozole (with zoladex) instead of tamoxifen which has increased the hot flushes. And my boob has split. Not a happy bunny. Just trying to rest up and looking forward to having more energy,
Christine - sorry you don't feel well enough to return to work, but I expect it's a great relief now you are planning to retire and spend more time with your family.
Hilary - it was sad to hear about your friend's husband, and sorry that you are coping with nasty SEs from your ongoing treatment.
Pixie - I shall look forward to the next instalment of Jigsawgate..... the conspiracy to deprive your Auntie Mary of her last jigsaw piece! Perhaps she could send a photo of the jigsaw and the duplicate piece, to prove her point. I still feel a sense of injustice from 40 years ago when we bought a new Monopoly set and one of the property cards was missing. We sent a lighthearted letter to Waddingtons, saying how our whole evening had been ruined by the lack of the card etc etc and got a very po-faced letter back saying that we could purchase another set of cards if we wanted to (they obviously didn't believe us... strict quality control, blah-di-blah).
I'm sorry that you're having such a hard time with all your SEs and portacath complications... it's amazing how you are coping with it all.
Still fed up about my nails - only have one intact on my left hand now. Have resorted to false nails to protect the sensitive exposed nailbed, but they have a tendency to pop off - nearly lost one in a box of plums at the greengrocer's this morning - had to rummage around to retrieve it!
Just checking in from the May chemo thread to say hi and to tell you I've finished my rads today - WOOHOO!!!!!!! Just have a very red and very sore boob now! So that and the dodgy knee and aching arms from falling over outside sheffield arena on saturday I'm fairly knackered at the moment!
On Saturday the concert I went to was held just for girl guides. I looked around and saw 10,000 girls - lots were wearing flashing bunny ears - me included! - and I thought of all you in the warren.
Hope those who are poorly feel better soon.
Dearest Pixie & Chrisp1e - Both of you have been reserved special hammocks at Campo Spa - Large Duvet & fluffy pillows waiting Pixie so you can hide from the world and the team are there to get rid of each of your ses. I will be round with Healing Paws......
Good luck on Wednesday and hope they get there act together to make you a lot more comfortable.
Chrisp1e also hammock waiting as you will be exhausted after making such a hugemongous decision - Congratulations!!!!!!!!!!!!! New beginning!!!
Am on holiday at present in somerset. Went back to work last week for one day. Had had a bad week. Wondered what I was doing driving myself to work. Day went okay tho was bombarded with information. On way home I thought. I can't do this. Was unwell at night and not good next day. Came on holiday yesterday and promptly went into meltdown. Crying and vomiting. OH hadn't realised how I'd been feeling. We've talked things over and I've decided to retire at the end of the year. I'm not well enough mentally or physically to continue. Now that I've made the decision I can't wait to be at home and be able to spend more time with my daughter and my grandsons
Sorry to those of you who have sore feet and other see. Sorry to ihave been a moan.
Sorry to hear about your friends partner Hilary, that must have been tough for you to support her, really brings it home about the seriousness of what we are dealing with.
Well todays post brought more hospital apointments: Oncologist has called me in for wednesday afternoon as physiotherapist has contacted him and told him she is concerened about my right shoulder and arm following her full assessment last week. So wednesday morning i have the nurse here for 3 and a half hours to fill me with herceptin and steroids and then off to see onc.
Another appointment for my next muga scan to see if the herceptin is buggering me heart up - and an appointment with my GP as i haven't seen him since February ad he thinks we should 'catch up'. He probably keeps getting all this stuff about me and the portacath and wonders what the devil i am up to.
Hilary, if I grow a beard i am going to hang myself. It will be the final ignominy. I am covered with the most foul facial eczema that is bright red and scaly, I ache so much i feel 100, I have insomnia and lay there aching and having one hot flush after another, I am the fattest I have ever been, my nose bleeds every morning and the cyclosphomide has buggered some of me teeth up and they are loose and aching.
You know, I used to think that once we had done the chemo and rads we would feel like we did before all this started. I cannot believe how naive I was. The Se's just keep on coming.... yet I am too frightened to consider stopping the herceptin and letrozole - and the alternative AI, arimidex is supposed to be worse on the SEs than letrozole. I want to get into one of the spas hammocks and pull a great big duvet over my head and stay there for a year!
What a grumbly myxi bunny i am...... good news, I am £2 short of having raised £4000 on my Happy Bags and tomorrow production starts on my Pixie's Xmas sacks - hope to have raised £5000 by end of year. We will only beat this by research and I want to do as much as i can to contribute to the funds. So please by Xmas sacks..... and if someone could buy one teensy happy bag for £2 that will tip me over the £4000 mark! (I would do it but that feels like cheating)
Auntie Mary is in dispute and has bought a ring binder! She is passionate about doing jig-saws - the big ones of 1000 pieces or more. Now she is on her own she says it is a way of getting her moneysworth out of the dinig room table. Anyway, she bought herself a jigsaw whilst on her recent holiday on the Isle of Wight - from a gift shop in Godshill. Picture of the round the needles yacht race, 1000 pieces.
Well apparently, a bit of one of the needles and a bit of the sea is missing and her 1000 piece jig-saw only has 999 pieces. yes thats right, 999 as she has 2 of the same piece. said jig-saw was £9.99 and so she phoned up shop in isle of Wight to tell them it was faulty. They said it was sealed so it is manufacturers responsibility. Auntie got phone number of manufacturer and rang them and they said the shop should deal with it. Auntie said shop is 360 miles away and she is 83 and only has a Fiesta and a bus pass.
Told her it is sales of goods act...and the shop is responsible. Auntie mary is livid and the dining room table is now full of faulty jig-saw and she doesn't want to break it up as it is 'evidence' - this is doublt frustrating as she has castle howard waiting to be done.
So she went to citizens advice who are taking it up for her as she is a vulnerable adult. (She is the most invulnerable adult I know!) So Auntie has bought a ring binder and a punched hole pad to keep note of all the 'proceedings'. I of course, shall keep you all updated.
So nice to see bunnies popping into the warren again. For those with the horrible feet problems the Spa have invented something to help relieve those pains. I shall detail below.
Pixie - SORRY I am also guilty of making a change on your contract - did not realise it was going to be so problematic - won't do it again - taking myself off to a corner - bad bunny! Your portcath problem sounds horrendous and hoping they sort out soon - you just dont need the extra stress! If you are not careful the Bunny Police are going to visit your house and tie you to a chair/bed to make you rest! Please take care.
Re statements people make - met a friend who I used to work with for coffee yesterday and another joined us briefly - just as she was leaving she asked "so what are you doing with yourself these days?" GRRRRRRRRRRRRRRRRR!
Must admit been hiding at the back of the warren for the past few days - a friend of mine lost her partner to cancer on Tuesday night. They were getting married the following day. Had managed to have their rings blessed though. Wanted to tell you bunnies a few weeks ago about Martin but well, it was just so very very sad did not want to depress everybody. Anyway makes me realise how lucky I am, as are we all that we are here albeit with aches, pains, probs & crass friends
Letrozole! Nearly ruined our trip back to the UK in September - I forgot to mention one se I am dealing with. Facial Hair! Yes to add insult to injury after everything we have gone through the Letrozole has given me more facial hair. Getting ready to fly to UK, caught side of face and signs of more hair not only on the side but the chin as well. Had to have a very serious word with myself about not having a major melt down. Came back from UK armed with creams etc. Spoke to Onc who acknowledged this side effect but after several months it will go. So not doing anything with the creams just yet but if not gone within the next few months watch this space!
Managed to get two months supply but going to try and build up a supply so I don’t have to go back so often. Only other se is slightly emotional at times and aching finger joints in particular Index on on left hand – hurts like the devil some mornings – ridiculous.
Samelee – Have a lovely time in Lisbon and hoping your off site meeting with your Head is just a chat. Take your time re your decision to return to work.
GMT – Don’t you worry about being moany – can relate to everyone of your worries – your friend certainly was not very sensitive. Me thinks we should have a virtual SLAP gallery ie. so we can deliver a virtual SLAP to anyone who has been insensitive, crass, or just downright ignorant etc.
Southpool – Your holiday sounds absolutely fab so pleased you have had a wonderful time.
Sarabee – Hoping your cold is going away and you are having a nice weekend.
Margietee – Have a lovely weekend with your family. Shall have a word with the Punkawallahs drawing on boob – TSK!
Sara12 – Are you still celebrating your birthday? Re your hair mine has taken a while to cover – still will not go without hat. I have a tufty bit on the top and the rest of it is slowly growing and I had thick hair down to my waist – surprised it is taking so long. OH says I should colour the tufty bit and have a Mohican!
Pepihorse – Sorry to hear about your feet and not fair we are not going to meet you this time round but maybe next time. Come to Campo Spa for our new treatment of your painful feet.
Big M – Welcome back on 7 October – hope you had a wonderful holiday in Cyprus. Pleased to hear the results were good from the MRI albeit watered down because of Onc not having results on record.
Libby12 – Sorry to hear about your Lymphodema and the sore feet.
Little Chick – Also sorry to hear that you are not going to be able to join us, such a shame. Nevermind, hopefully you will be able to come and show your face at the next fest.
Chrisp1e – Hoping your Lymphodema is also easing.
Ambarose – You are welcome to dip into the sea in Campo Spa cause there is no way I would be dipping into the sea in November in the UK – my Grandfather used to take us winkle picking and have a dip into the north sea at Aberdeen around Easter time - I am scarred for life!
Teabelly – More from you please
To all those I have not mentioned – where are you????? Yes that is you Hyzentlay, Namar82, Gadget Gal, Spacehopper, Vanns, Rachel1P, Kitty Queen a wave to you all.
The spa has developed an ultra light knee length sock when worn by pressing button A will start to cool your feet, also can deliver a cream which is a bit like deep heat but does the opposite delivers deep cool. The team of course have all the necessary creams, oils & lotions to ease the pains away.
The temperature is now a very comfortable 26 to 29 Degrees. The air is still very gentle and soft whilst lying in your hammocks listening to the Parakeets playing from Palm to Palm. Enjoy Bunnies.
Just popping in to say Gaynor, you are right about people not understanding unless they were with you while you went through it all, or have been through it themselves. We are off tomorrow to the south east coast to see my sister and brother and respective family members and we haven't actually seen them since before the mastectomy and the chemo, incredibly! They all live so far away and for various reasons visits just didn't happen; we kept in touch with phone calls. I know that I look fine now, and it will almost seem to them as if everything is as it has always been. Still, I guess that it might be good in some ways. Might be better just to let them think I have moved on.
Have finally addressed the issue of a return to work and am meeting with my Head next week. I asked for an off-site meeting so as not to be distractd by other school stuff, but will need to think about what to say! I am hoping he is happy just to chat for the moment and is not expecting me to make any firm decisions as I certainly don't feel ready to do that yet. Apparently I might need to see an occupational health officer to ensure that I am ready to go back.
I am honestly astonished by how little I have missed working. Maybe it's my age, but I am enjoying the lack of structure- it's great to be able to take my breakfast back to bed and linger over a coffee. I don't seem to get bored at all! There is always something to do, somewhere to go, or something to read. It is lovely; like being on holiday but without nice weather.
Am really excited that I have managed to book a city break with my old chum from Drama school. We've recently done trips to Madrid and Amsterdam. This time we are off to Lisbon for a few nights, just before Bunnyfest, so that will be a really busy week. Am a bit worried that I won't have the stamina for all the walking and art gallery visits, but i'm sure we can fit in the odd cafe!
Hope the Vitamin D i am now taking does the trick in relieving The Aches of Arimidex. Good luck those of you with the Lethargics of Letrozole......etc ( sorry, couldn't resist. )
Not time to mention everyone by name, but take care, and have a lovely pain-free weekend, all.
Hi to all,
Belated birthday wishes Sara. Sorry thosebunnies with sore feet, muscles etc and manky portocath, Pixie. My feet are very tender as I get out of bed and fingers are very achey, general aches and pains as well.Saw doc today and she has given me 3months of Letrozole, so won't have to keep remembering to do repeat prescription!
Had a good break on my spa getaway but got my knickers in a twist ( but kept it all in till I got home, then the flood gates opened) when one of my friends said it was good that I'd had cancer at 50 at least I was going to be ok, could have been a different story if I'd been 40. I did feel it was rather insensitive, only finished rads last week, glad she can see into the future and know its all going to be ok. I havent seen her for 12 months and dont think she really gets what we've all gone through, but then why should she. But perhaps then you shouldnt make crass statements. I think I'm also suffering from the end of treatment blues, I feel all lost and a bit scared, not dissimilar to how I felt back in January. Phoned to see where I was on list for psychology support ( referred a little while ago) and was told I'm on top of list. So I'm hoping I can get some of my worries about work, isolation, feeling guilty about not being at work etc etc out before I send myself and my lovely oh round the bend. ( sorry for being moany)
Must look for bunny ears this weekend.
Love to all,
I am enjoying my last day in paradise. Am writing this sat on my sun lounger in the shade, cooled from a dip in the sea & waiting for OH to arrive back with takeaway lunch from the restaurant just up the beach. I will be sad to come home but we've decided to book same time, same place for next year as soon as we get back. I always like a ho,iday booked when I return!
Pixie you wore me out just reading your post! Sorry you are myxi again but congrats on winning the Tiptree account. My OH loves their tomato sauce, but I work for the company that makes Hartley jam so have to be loyal in my jam buying! While I've been away my contract gas been renewed until the end of Feb when I am going to take a sabbatical again. My replacement has been recruited so they are happy for me to work 3 days a week managing some change & coaching my successor, which is perfect.
The bad feet sound terrible that must be such a debilitating SE, it affects everything.
Can see OH strolling up the beach so must go.
Love & virtual hugs all
Sunshine S x
Morning buns - glad it's Friday as well. Only 3 more rads to go and my boob looks like I have scorched myself with an iron Lol! Also got my OH's cold so been dosed up with tablets and sleeping loads. No change there then ha!!!
Belated birthday greetings to Sara - glad you got to do something nice.
Not much to tell here but sending you all hugs for the weekend.