Read my post back and realised it wasn't very clear as to what I was replying to. My trial is to see if chemo can indeed be reduced from 8 to 6 down to 4 sessions. If the FEC hadn't worked to my onc's expectations then I would have gone onto TC for 4 sessions☹ prior to surgery. That's the risk I was prepared to take. Hope this makes more sence. xxx
Glad to hear you're ok. Lots to catch up on here! As I discovered the other day it can be like reading a novel📖. Take care. Sending you hugs❤❤❤❤❤❤❤❤
Trixielady so happy to see your post and know you are ok. Well as ok as any of us can be! I know how it is to have family at a distance. My brother has lived in Asia for over 20 years but thank goodness for facebook, instagram, video calls etc.
Rosina, omg, your poor eyes. I can totally see me doing something like that though. I’m just so distracted all the time, doing things then not remembering if I’ve done them or not. It’s quite scary really. I had my bloods done yesterday and no call from hospital so looks like chemo 3 on for tomorrow. Delay of treatment is a right pain in the Barry Rosina but a necessary annoyance I suppose.
Seeing Notre Dame up in flames was so upsetting. 😥. I hardly dare look at the news updates on it.
Daisydi sorry to hear you are struggling with the side effects. I hope they pass soon. Big hugs darling.
Anyone else having chemo this week? Xxx
Ps Did I see a new name pop up? Glennherriott was it? Hi there and welcome. Xx
Just a quick check in My brother has been up for the weekend from Leighton buzzard to support us and himself its awful living so far away from each other at times like this.
I had my first herceptin injection today nothing to report so far xx
Had Paclitaxel instead of T lucky for me nothing to report tonight on that score either 😀🤔 haven't read back over yet so sending big hugs and positive thoughts to you all my lovelies, come on keep plodding on xx night night ,hope i can sleep tonight xx
Well week three of the Moving Forward course, more tears and laughter again. First session was on counseling, she was very good and some of it was hard I have to say. Second session was on alternative therapies. I had great hopes for this session but was not so good bit of hand massage and tuning forks? don't think I will be ordering one from Amazon Prime!. Always feel tired after the sessions I think it's all the emotions. One more to go a week Monday.
I can see from your posts that some of you have had better days than others.
I hope Tuesday is kind to everyone x
I have just gone and sprayed perfume instead of rose water in my face. Picked up the wrong bottle from my daughter’s swim bag.
Boy it stank and stung.
My daughter has told me to go to bed and get some sleep.
I give up !!!
I'm working on it. That's partly what my trial is about but just for people with HER2, aggressive grade 3 tumour, minimum 20mm (mine was 21 x 18) requiring chemo prior to surgery, plus a few other criteria. It makes you realise just how long a trial can take. Mine had been going for a few years and is at stage 3 where they will be trialing 1056 people. xx
Re. Notre Dame: I know Implausible, apparently renovations were taking place and foul play is not suspected. Go figure or believe what you wish.
Regarding steroids they are just for the T, to be taken the day before chemo and on the day itself. Amongst other things the blood test is to check liver function. Even though I've finished my course of chemo, for now, I still have to be tested in a couple of weeks for that💉☹.
Tried one of my fringes today with a bandanna which I have worn around the house all day .Just need to get it more central which is a bit difficult when the headgear is quite stretchy. Need to try them with my chiffon scarves that have an inner less stretchy soft cap.
Still nothing from Trixielady. I hope she's ok.
Enjoy the rest of the evening. xxxxxx
Thanks Rosina! Good to know....also read somewhere that chemo used to be in 8 cycles....thank the Barry it's 6 .....shame it can't be lowered again....maybe In years to come it will be?? Xxx
Magic Roundabout😃🤔. Fond memories of late 70s and early 80s. Thanks Edinbird. Brilliant piece of artwork in the making. xx
Hi Marlyn (brain focus- me talking to self),
steroids are taken in advance of the T (Docetaxel) drug.
This is not the case with EC when they are taken afterwards.
The oncologist explained that the high steroid dose prior to T is to minimise the side effects. It continues during the dose day and the following day.
Hi Implausible ,
at was at the hospital for 7.50 , blood test was done by 8.25. Saw the oncologist at 9.15 and told her everything was fine so we were going ahead.
The oncologist said that on T the nausea isn’t the big problem it is more the aching muscles and joints ( paracetamol and ibuprofen are permitted if it is really uncomfortable ) Blood test results didn’t come in till 12.40 so then they were trying to contact me at home and on my mobile .
They did get hold of me or at least a lovely secretary did. She couldn’t tell me exactly what the problem was with my blood test result , only that it didn’t meet ‘expected protocol levels ‘ hence one week delay. The good thing is I don’t take the steroids tomorrow.
It does take you by surprise when you are feeling well , next time I will look more carefully at what the blood test paper says as apart from white blood cell count they were also checking something to do with the liver and there was a 3rd item which I cannot remember.
Anyway I had my walk behind the hospital and my reiki. Then I caught the bus home.
I hope I don’t have any further delays. Hey ho
Evening all, looks like you are all plodding along nicely. Me Im totally fed up! I think I have had every side effect listed with this 3rd dose and I really dont think I could tolerate another one. Just hope the T part is a bit kinder to me. Ive even had to resort to sucking ice lollies today and I didnt think that was meant to come until the T part ....
Seaside, my oncologist will have the results by the time of my next appointment 3 rd may......just hope I won't have to take the bio phosphates as they come with their own wee side effects...
also, why are some of you taking steroids a few days leading up to chemo? I only take them for 3 days ( including chemo day) not that I'm feeling left out or anything, they bung me up! Xxx
Marlyn, when will you get the results from your bone scan?
I know what you mean about ginger. I made the mistake of telling people I liked it during cycle 1 and guess what? I've been inundated with ginger tea, ginger biscuits, ginger everything. I can't even look at the stuff now! 😝
Oh Rosina that's annoying for you. Very frustrating, I know. At least the weather is meant to be beaut this weekend so hopefully you can make the most of it. I'm fully expecting my chemo which is due next week to be delayed again as my neutrophils were low the last 2 cycles so why would this one be any different?
Sarah your comic is looking amazing!
I'm getting on with my crochet project but it's gone a little bit wrong! The pattern tells me it's meant to measure 12.5cm diameter but I seem to be 2cm short. Oh well, who's checking anyway 😂
Marlyn I'm glad your bone scan went smoothly, and fingers crossed for your bloods!
Rosina it is such a pain you have been set back a week:( really feel for you. I hope it doesn't mess up your plans too much:(
I am dreading a delay on number 4 in particular. Not only because it would nobble my trip to Edinburgh. But also because, cos of the Easter weekend, I'm having my bloods on chemo morning for once instead of the day before. So if it is delayed I will already have taken 3 lots of steroids for nothing 😕
There doesn't seem to be much rhyme or reason to it. You feel fine and healthy just like Seaside did the time she was delayed
Yet we have had ladies feeling totally grotty but their neutrowotsits were fine and dandy. 😕
Only thing I can offer to cheer you up is that your walks are still much nicer than mine
I have just walked past Swindon footie ground:
And the equally attractive, and world famous, magic roundabout:
Before my walk though I made some decent progress on page 4 of my little comic. Be warned, nipples!
It is like a montage page of how their evening progressed. Quite well, as you can see 🙂
Catch you all later x
Hi Rosina, joking apart I'm sorry your chemo has been delayed, as you say it's a bummer. It all means that planning ahead is so difficult at times☹. Love the photos of your walk, it all looks very pretty and interesting. Around here wellies are often the required footwear.
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