sorry its being delayed but you're right, we need our bloods to be up for it, I will find out on wed, must admit I will be gutted if mines gets delayed...but we need to be as "healthy" as possible....xxx
I have just been told that my dose 4 will not happen this Wednesday.
Something in my blood is not at the level where the protocol wants it.
Back here next week for blood test on Tuesday and dose 4 on April 25th instead.
Bit of a bummer as I am feeling fine but good to know that they are sticklers here and they follow the rules.
just back from my bone scan, was relieved to find it straight forward, although they did scan my left thigh twice which I find interesting as that's the thigh that gives me gip....wonder if they picked anything up??? Didn't ask as I like to hoof it after treatments, scans, appointments etc...
funny a couple of you mention tastes...I now can't stand the thought of anything ginger related and I'm certain it's because during my first three cycles I drank ginger water and ate ginger biscuits and sucked ginger sweets.....can't go anywhere near the stuff now!
well, its cycle 4 this thurs ( bloods willing) and I'm still gobsmacked at how quickly it's going.....wow....bloody Barry wow......
And sisters.....remember I bloody love you all! Where would I be without you lot......xxxx
I have my LGFB session Wednesday afternoon this week. I will definitely go bare faced. I can't be fussed with putting on a face full of make up just for them to wipe it all off again as soon as I get there!
You should be able to do as much or little as you like Susie, the lady next to me was about to go and see her oncologist because her skin was quite red and they didn’t want her to put anything on it before the appointment so she skipped a lot of it and just did the eyes and lips. All the products are chosen for chemo skin but I found the moisturiser a little much (I generally do I hardly ever bother) and there was no consideration for the hormonal breakouts I still get around my jawline. It has to be very generic. You’ll be fine xx
I’ll look at the trials site thank you 😊
Thanks for the info regarding the Feel Good session. If they do the face cleanse on me I'll have to ask them not to use toner as it's too drying on my skin for some reason. As promised regarding your onc telling you there may not be a dramatic change in your tumour at the momment, you may find it useful to go to the Cancer Research UK website, click on the Research & Clinical trials, enter ROSCO in the trial type, press search then click on cancer type Breast cancer. I won't go into detail but I'm on the trial and it may help you understand why some people seem to be responding to treatment in different ways. Hope this helps. Like you I don't like not knowing either. For me it's not knowing whether I'm HER2 positive or negative and I won't know until after surgery. Just wish they'd done a second biopsy prior to chemo to try and confirm. Still onwards and upwards as they say. Take care xxxxx
Susie I'm exactly the same with sandwiches. Even thinking about them makes me want to heave. All because they serve them during treatment and I had a particularly limp cheese and tomato sarnie the time before last - never again!
Glad you asked about whether to wear make up to the workshop. I was wondering the same thing. Probably won't bother.
I've got a really busy week with lots of school friends visiting me because they're all on their Easter holiday. Am also going to a breast cancer tea & cake meeting tomorrow. It's no art therapy but I think it's MK's answer to supporting people going through treatment.
Just made some banana muffins for today's visitors. Will be chatting to my counsellor at lunchtime, then 2 lots of visitors so I may not reappear on here until much later.
Have a good day everybody xxx
"You have one week. You must be out in 3 hours"
Sometimes a really bad movie can be a lot of fun
Susie I couldn't sleep last night either. Thought I would be out like a light after all that walking! I finally dozed off around 2 but then woke up bright as a daisy at 6am. And no builder or work today so I totally could have had a lie in! Oh well.
Funny you should mention going off sarnies. I mentioned to my other half yesterday that I hope chemo doesn't ruin jacket potatoes for me. They bring me a jacket spud with cheese and beans mid way through each treatment. They always go down a treat but I wonder if for the rest of my life I will associate jackets with chemo? I hope not.
Edinbird I am much the same as you, in the first few days after treatment my taste buds go a little weird but most food still tastes the same and for weeks 2 and 3 I'm pretty much back to normal. But I am hungry all the time!! I almost wish I would go off some foods to stop me wanting to eat constantly
Have a good Monday all. I am not back at work till tomorrow so I have a morning of painting and then this afternoon I'm going to go and see Shazam at the movies.
Susie wear whatever makeup you want to the session - first thing they do is a complete cleanse. The demonstrated the eye makeup remover on me and I never wear any. I just put on concealer before I went. They do eye makeup remover then cleanse then tone then moisturise and then you do all the makeup.
Make sure you show us your results! I feel really sorry for everyone who is struggling with food... I have an occasional aversion for tea (that I make, more often that my husband makes but never ever do I have a problem with my friend’s!) and then there’s the burning caused by any form of chilli but that’s it! Can’t stop me eating otherwise! I’m back on the heart pills this morning... feeling apprehensive but on a half dose so hopefully it will all be ok now.
Have a lovely Monday ☀️🌈
Sorry Ocean21 Nollywood morphed into Hollywood. Let's try again. Barrying predictive text thinks I can't spell again.
Well just gone through another night of less than 5 hours sleep😴☹. No matter what time I go to bed I wake up at 4:10 for some strange reason. Wonder what miracles Look Good session can do for me tomorrow? Talking of which, those of you that have attended one, did you wear make up there? It's only that I'll have the gaunt look as a result of the Filisgram injections and don't want to turn up looking like a ghost👻. Totally different subject on the food front I have definitely gone completely off sandwiches to the point that when Paul took some bread out to make a late night cheese sarnie🍞🧀. I almost gagged and had to leave the kitchen🤢. Bless him he came into the living room with 2 biscuits instead🍪. I think it's come about as during each chemo session they serve sandwiches and they've tasted worse as time has passed by. The joys of chemo. Paul told his sister last night about my diagnosis. It's coming to the time year when her and her husband will pop in when going to craft fairs and antique fairs in the West Country. She was understandably shocked, followed by why didn't we tell her earlier etc she would have come to help. Paul just told her there was nothing to help with and that he was now an expert with the iron. In his usual calm manner he explained what treatment I'd so far and all the positives to come. I think she was ok after that.
Ocean21 love the piece about the Hollywood film, it did make me laugh last night😀. Thank you. I showed Paul the area you are living in and it was case of oh I've been that way we stayed in Cognac one night on our way to Tolouse - work related - and I had to have a cognac in Cognac🥃☺..
Sonia28 did you ask where Paul was living in Plymouth? He was born there and his parents were at RAF Colington Cross (not sure if spelt it right) but they moved to Norfolk when he was about 4 years old. He still knows quite a bit about the area though, he recognised Noss Mayo.
Sorry I can't remember who's got chemo this week so I'll just say that I'll be thinking of you all. I can't believe how quickly my 4 sessions went and that I feel a little guilty that for now I have a very welcome break from it all. Have a good day everyone. Will drop by later. ❤❤❤❤
Thanks all. Glad to know you’d do the same in my situation with granddaughter. Her account is set to private . She’s so innocent,It would never occur to her to be suspicious. I don’t even like them doing sleep overs but I get told I’m over cautious.
Three of the men following my granddaughter were overseas,in Brazil, US and India to be precise. Some of the other profiles I found could also be overseas but it was harder to tell.
Facebook . initially I signed up to it to make sure that I knew what my kids were up to and to make sure I knew the kinds of people they were mixing with. I’m still on it but I probably use Instagram more because it’s a more visual medium and as you might have noticed I love taking photographs
Im in bed relaxing now. Going to watch a Nollywood ( Nigerian equivalent of Bollywood )movie They’re mostly dreadful but quite addictive in a way . Hadn’t watched one in ages and a couple of days ago watched a ridiculously long one called The Humble Servant. In Nollywood films overacting it’s a requirement and so are terrible film scripts , bad editing and odd choices in music. I find them quite fun .
There was a scene in The Humble Servant where the dad got his lawyer to come to the house to serve notice to quit papers to his son and his wife. The lawyer made a great show of taking a couple of sheets of paper out of a briefcase that clearly only had those two bits of paper in it. He then delivered these memorable lines “These papers are your notice to quit this house. You have one week , you must be out in three hours.’ Cue dramatic music and stratospheric overacting.
On that note rest well all , the joys of Nollywood await.
you are certainly doing right by your granddaughter. When mine got Instagram they thought the idea was to get the most followers,I also had their passwords so knew very quickly that this had happened to explained to them it’s not the idea. I dont
think they have the understanding of what the bigger picture could lead too at that age.
That farm looks great! We could even tie it in with a trip to the ice hockey if our timing is right 😂🤣 Cardiff Devils have just won the playoffs 😁
Rosina, Barry Island farm looks interesting🐄🐄🐄🐂🐂🐂🐂🐂. At 5 ft nothing do you think I'll be able to ride on a tractor🚜🚜?
With you absolutely all the way with regard to children staying safe on-line. Fortunately for us Chris was in his early teens when he started to get onto Facebook, etc and was quite happy to be guided by us. You are in no way interfering when highlighting your concerns. I would do exactly the same and if anyone gets upset then tough. Who knows if anything happened and you hadn't said anything that could end in repercussions too. Go with your gut feeling. xxxxx
Implausible over 17K steps ! Wow and well done.
Bet you sleep well.
I have sent you and Nettinoo a friend request on FB .
Can’t remember if anyone else mentioned FB.
Oh, yes Edinbird.
Get her to connect with me too (if you know how to do it) she mentioned something about her account being ‘out’ due to work.
I mainly repost Guardian articles, books that I am reading, film trailers and petitions and campaigns.
If anyone wishes to find me on FB
I am ‘Diana Patel’ and my avatar is a hare.
Rosina that farm looks lovely!!
Barry Island is .... an experience Have you ever seen Gavin and Stacey? It is set there and portrays it pretty accurately
I love the whole run down seaside attraction atmosphere of the place....
Just in from a nice day out in Bristol. I'm shattered now! Have walked over 17k steps today.
In fact this weekend I have walked so much that I'm winning the steps challenge that I do with my pals every weekend. First time since chemo started I think. They should be ashamed of themselves being beaten by a cancer patient ha ha
Susie, your thing about leaving Facebook rather than having to be Facebook friends with your mum made me laugh. My sister sends me a friend request every year or so, I have ignored every single one of them! And of my 3 sons, only 1 of them is prepared to be my Facebook friend , and I think that is only because he barely uses it. I think that it is quite normal to not want your family all up in your business
Unless you are looking out for a 10 year old as per Ocean's example, that is. I think you are doing the right thing, Ocean, 10 is very young to be out there in the wilds of social media unsupervised. When my youngest first got a Facebook account (he was 12), I kept the password so I could check his personal messages etc. Make sure that nobody was contacting him who shouldn't, and also that he was behaving himself and not being a cyberbully or anything!
After a couple of years of good behaviour I told him to change his password as he was old enough to not have his mum spying on him by then.. but i made sure that he is sufficiently aware of dangers....
For young girls it is even more scary. Especially the kinds of photos they post of themselves in a ton of make up etc!
Love, love, love those sunflower photos!
And yes I've been wondering how trixielady is getting on too, but assume she is still dealing with the family issues. We're all thinking of you missus! X
Love to all
Sleepy Sarah x
just popping in after a super nap ( 1 and 1/2 hours) I did walk again today -my usual - but maybe the cold fresh air knocked me out????
Anyway , trying to catch up with the posts:
1) yes count me in on a get together. Barry Island would be great. I even went on Airbnb and found this
which can host 10 ( how many of us are there this is a guesstimate) and they do breakfast 🤗
I have never been to Barry Island but I did enjoy Cardiff way back when I went to visit a friend when at Uni.
And yes of course we would wait for everyone to have finished treatment .
Ocean21 , you have done the right thing. I am a teacher of Special Needs Children and we often have situations that have involved social media and then are NOT fun or PLEASANT!!! Some have been down right scary and have involved the police. If teachers are continuously receiving and delivering training re. Safe internet usage ( and my age group didn’t grow up with the internet) then parents should also be responsible. So WELL DONE!!!!
One case that I can recall did actually involve grooming of one of our students and the guy had a fake identity and lived overseas.
We have Gatwick airport next door to us and there is such a thing as modern day slavery.
So I repeat, you have done the RIGHT THING.
Food wise , today I cooked a delicious African Stew:
It is a family favourite and I love it.
I also add some sautéed button mushrooms to mine .
Enjoy the rest of your Sunday 🌼🌺🌸
Hi Edinbird, just seen your post. You may find your lump responds better under T. I'll get back to you later re that one. Take care xxxx
Ocean21, yes , now you mention it..had totally forgotten poor trixelady s situation....hope she's doing ok...
Also, for what it's worth completely on board with what you're saying ref safety ref social media, there are far too many perverts out there in the cyberspace world, hiding behind their false personas, ready and waiting to groom innocent children. Not worth the risk! I'm afraid I would be a helicopter parent/grandparent....and if that means upsetting anyone along the way..then tough! I feel it's a shame mum isn't "on it" and takes it as a personal slight on her....I'm glad nans "on it" though....xxx
Quick update re post op bras from asda. They are priced VAT free😊. Just bought pack of two pretty ones in black and white for £16 plus postage. Only £16 if collect in store.
Beautiful sun flowers Ocean 21. Sorry haven't read other posts as only just popped in.xxxx
I agree 100% social media is a real minefield of opportunity for undesirable individuals. I too am hyper vigilant about child protection having taught about the issues for years. My granddaughter is on Instagram and she is 14 but honestly in some of her photos she looks 18. They are naïve and all they think about is their friends saying '' you look beautiful babe' . Your granddaughter is very young at 10 and yes I agree needs parental guidance (or in this case Grandma guidance).
Sunflower pics are from last summer. Sun’s been out but it’s not so warm here today so thought I’d post some pphotos of warmer days.
Marlyn, Trixielady’s niece had a crisis a little while ago so the whole family have rallied round to support her.
A meet up when this bc stuff is done is a wonderful idea. Definitely count me in on that.
Been in the garden this morning , texting and sending photos to my grand-daughter. Great fun. She got a mobile phone for Christmas and I love our little convos, she’s only 10 .I do worry about her having a mobile though.She set up an Instagram profile and to my horror used her actual name. Practically every professional job I’ve ever had in my life has involved safeguarding so I make no bones about questioning motives.
I mentioned to my daughter that I’d have to say something to her dad ( my son). My daughter started on at me saying I always overthink things , make mountains out of molehills and that there was nothing wrong in my granddaughter using her real name. So , recognising that I am hyper- vigilant ,I held my tongue and said nothing. However, it was really bothering me so yesterday I told her dad she needs to change her profile name and make use of more security filters.
All it needs is for someone to ask to follow her, get access to her account,look through her followers and if they find her mum who overshares, they’ll be able to workout their location. Thankfully, he totally got what I was saying and he agreed she should change her profile .Happy to say true to his word, she’s changed it.
This morning, I noticed she’s has a big jump in the numbers of people following her so ,being the protective grandma that I am , I checked out their profiles. I was shocked. There’s absolutely no reason why grown men in their 20s and 30s should want to follow a 10 year old. B*stards.
My son’s in Liverpool and there’s is a pizza takeaway in Ormskirk asking to follow his child. From her profile photo you can see she’s a young girl, nothing in her profile about loving fast food or pizzas and it’s nit worth anyone’s while delivering driving to Liverpool to deliver a pizza made in Ormskirk. One of the other profile photos was of a semi automatic gun, this guy is a gamer totally into really aggressive games. My grandchild is into glitter pens, unicorns and comics. She likes her games but no more so than other kids her age do these days.
I went through everyone of her followers and there were about 15 who need deleting. I sent a list to my son and her mum. Her mum can take offence very easily but I don’t care. No matter what I say or do to the contrary she always thinks I’m questioning her parenting skills.I once cleaned their kitchen because they were both super tired , she took offence at that.She can stop speaking to me if she wants, I’d rather that than not say something and my grandchild be at risk.
Would you guys have done the same?
Everyone is so different... I hate not knowing what I’m having! I know the ideal but depends on how well I respond to the chemo. Am looking forward to finding out on Thursday but I am a little apprehensive in case it’s not doing a lot... the consultant said it shouldn’t be dramatic yet but others on my triple negative group have seen a lot of shrinking early on. My swollen boob is less swollen but there’s no dramatic return to normal. Now I know I don’t have any genetic issues I really don’t want a mastectomy as I don’t want one side different to the other. Fingers crossed T kicks it 🤞
Sorry I forget some of you are having reconstruction surgery after chemo, chemo brain kicking in already. Doh😴😩.
I'm not on Facebook or anything. I did go on Facebook when I first finished work just to maintain contact with my colleagues who were made redundant along with me. Unfortunately my Mum was on there at the time, unbeknown to me and asked to be a friend. I banged out as I didn't want her knowing all by business I'm afraid nor did I want to cause offence by declining her request. I might try again as nearly 7 years have passed and she hasn't mentioned Facebook for few years.
Hi all, just thought, I could be way behind you all☹. After surgery I'll have 4 rounds of TC as part of my trial and possibly radiotherapy. If the biopsy taken during surgery shows that I am HER2 positive (I'm currently inconclusive neg/pos) then I'll be on trastuzumab for up to a year😭😠. Wonder what delights that has in store?
Hereditary is brilliant, possibly my favourite film of last year. Both the Jordan Peele films are worth a watch (Get Out and Us). The Babadook (sp?) was great, as was It Follows. And I thoroughly enjoyed last year's rather odd but beautifully so remake of Suspiria.
And on a slightly lighter note I thought that Ghost Stories was a lot of fun.
Marlyn, Barry's Barmy Army!!! Love it 😂🤣😂 You were made for ice hockey with that name 😂🤣😂
Oh and thank you fellow Twitterers. Mine is (surprisingly) mostly about the hockey, and cats 😺😸
Implausible....if you have any horror recommendations please tell.....I love a good fright ( in the comfort of my home) xx
Mornin My beauties.
implausible...thanks for fringe info, didn't know Susie had one too? I'm finding the wig hot and itchy now, can only wear it for short periods.....susie...good luck for op Hun, you'll soon be back in action x
seadside...you beat me to it with Barry island!!! I love the idea of a get together when we're all willing and able...I will travel anywhere! I will have to warn you in advance that I will most probably be a complete cry baby when we do see each other...it will be a very emotional day!
edinbird...of course we will wait for you....we won't be leaving any sisters behind xx
off topic.....I do love a horror, last night we watched " hush" on Netflix....worth a watch ( well I think so)
i love you all to to infinity and beyond!!!!! Barry babes, Barry beauties, Barrie's barmy army, Barrie's breast buddies, oh the list goes on......xxxx
Have been out for most of the morning so Edinbird and Nettie's Facebook requests popping up was a nice surprise
Will warn you that most of my Facebook activity is either a bit nerdy or about graffiti. And I have been known to get a bit sweary
But if that doesn't put you off, here I am
The kind of photo you are likely to see on my FB, from my current vantage point directly under the M5/M49 junction. My life is so glamorous
Sar I'm also on Twitter, I'll give you a follow. I pretty much only use twitter for comic book stuff though, and checking hockey scores
I am SO down with a day trip to Barry Island
But like the rest of you it will be a while yet. I also have radio and more surgery to come.
I'm not on Facebook but I am on Twitter so feel free to follow @Sarah_bcwarrior
I'm ages away from finishing treatment too as I've got 3 more chemos (with delays knowing my luck) 5 weeks of radiotherapy and herceptin injections until April/May next year.
We'll all get there in the end and our meet up will be worth the wait xx
Susie, your comment about nightwear made me smile. When I first got admitted to hospital a nurse asked me if I had my own nightie. When I said “no I don’t own any nightwear” she asked me “what do you wear in bed then” so I told her “nothing but a smile since I was 13”. Her face was a picture. I have since purchased a couple of cheap nighties from M&S but find it so hard to sleep with clothes on. 😂😂😂😂 x
Just popping on quickly before I go to watch the swimming again !!
My face book is Sonia white was loryman,
love the sound of a meet up, don’t worry Edinbird I’ve got radiotherapy and surgeries to
come too xx
Of course we will wait for you Edinbird. We will wait for everyone to be finished with treatment and feel well enough to come, however long it takes. We all need to have enough energy back to celebrate properly. Xxx
Ps thanks for the fb adds/requests fellow facebookers. X
Don't worry Edinbird, I don't think I'll be too far ahead of you so everyone will have to wait for me too!
Nettie I have added you and Sarah Implausible 😁
My Facebook is locked down because of my job so if anyone else adds you let me know and I can add them too I can do it that way around 👍🏻
Caught up with everything and will see how much I can remember to respond to and pass comment on🤔.
Loving all the photos, especially the sea side ones Edinbird.
Rosina I use the Devine range but I need that for my 62 years old skin😔, but mainly the oil, reset night serum and eye cream, expensive but a little goes a long way. I buy it on line and try to wait until the offers come though. If you like lemony smells have you tried anything from the verveine range? I haven't been told not to use perfumed products but it is mentioned in one if my information booklets. I'll keep going unless I get a reaction🤡.
Regarding VAT free items I've just ordered and received a couple of pair of pjs, from asda.of all places, £15 free of VAT. Sorry it's a bit late for most of you except Edinbird. OK I'm going to own up and admit nightwear is not for us, birthday suits are our preferred choice, so the pjs aren't wonderful but they'll do. Haven't checked for post op bras yet on their site.
Thank you for all your kind thoughts and messages as I approached my final session prior to surgery. I'm trying to think about our break away✈, putting the thought of surgery firmly on the back burner, but also getting organised for it.
Who mentioned getting together when we have completed this terrible journey that none of thought we would be on. I'm definitely up for it. I would love to meet and thank all of you for the help, tips and support you have given me. I've always thought these forums were not for me, how wrong was I. Anyway I'm going to read the Oct link. There's also a group from 2114 that are still in contact and meet up. Like the idea of Barry something group.
Marlyn, I've bought a couple of fringes too from the same site as Seaside Sar and Implausible. Haven't worn them yet as they're for when my fringe goes grey or when I go to France and wear my pretty chiffon bandanna scarves during the day, whichever comes first.
Well that's about as much as my chemo brain can remember for now so I'll love you and leave you for now. xxxxxx
I don’t care where we go! I just now feel frustrated that I have surgery and maybe radiotherapy to come so I won’t be finished treatment as quickly as most of you 😬
Wait for me...!