Seaside, Implausible, Edinbird, Sonia, you all sound like the T is knocking you for six at the moment you poor things. I suppose your bodies are all in the process of saying “what the Barry have you put in me now?”. Are you all still taking steroids too? WBC injections? Be kind to yourselves and try and not get too worried (so hard I know). Hopefully side effects will calm down very soon. Special Nettienoo cuddles for you all today.
Rosina, I’m really getting into the Yoga Nidra. I think when I’m well enough, I may look in to starting Yoga. I’ve always done quite high impact gym stuff before but I did do Pilates for a bit a few years ago. Xx
Morning my lovelies,
I've had another crud night. Shivering, sweating, worrying...
Consequently, I am in a really bad mood!
Sorry to hear the effects of T are hitting those of you who have had this treatment. I hope it eases soon.
As for hair, I was thinking the same as you, Sarah and tempted to trim to short length all over as it's gonna be a right barry mess when I get the regrowth next to the longer locks. However I've decided to wait until chemo is over as it might continue to fall out in the meantime.
Hope everyone's day is OK. Rest up and take care.
PS Nettie I look forward to your hair regrowth diary
I am not quite sure what to do with mine. I'm currently sporting a bald crown with a wispy friar tuck around it. And a little wispy fringe. At the back where I had the really short undercut it is still ok.
If it starts to regrow it is all going to be odd lengths and look rather peculiar
I am half tempted to clipper it all down to a number 2 or something once it does start to reappear. But then I will lose my little tiny fringe. Maybe just keep that .
I guess I will cross that hairy bridge when I get to it
I spoke too soon too. Seems that T doesn't kick in as quick as FEC with the unpleasantries, but it gets there in the end.
I started with the achey , restless legs as I hit the sack last night and have accordingly had a pretty rotten night. When they talked about sore legs and joints I thought it would be like my usual slightly arthritisy knees etc, which are fine when I am sat or laid still, but hurt when I get up. But no, this is unpleasant when you are just lying on your bed, isn't it. Not much fun!
Bad sore throat too.
Also many visits to the loo overnight but just wees for me. Think I drank too much water yesterday. Hard to get it just right!
Anyway. Today is another day. Hopefully just a few more days of this and then we will all start to perk up a bit again .
Does make me appreciate what life must be like for people with chronic pain and aches all the time. At least for us all it should only be temporary until the poison has flushed through....
Last night also cost me £160 as I ended up ordering a new mattress topper at 4am in the hope it will make me more comfortable! Oops. PayPal is too easy!
I think I spoke to soon yesterday, I feel like I’ve been run over by a bus and it reversed back again, night of aches and pains. The joys of Barry that just keeps giving. I’m not sure if it’s the injections or T or probably the combo.
Hope the rest of you ladies are holding up well, think my day may be slower than Planned.
Morning xx rubbish sleep again I didn’t get anywhere near painkillers as I drifted off but my stomach keeps waking me up! I might have slept through if I didn’t need to keep going to the toilet every couple of hours (but it’s all solid I don’t know how I’m producing so much!!)
So I’m pretty much uncomfortable from the waist downwards. Sore bottom and aching legs. And when I get tired and uncomfortable and a bit dehydrated I’m less inclined to take tablets as swallowing them isn’t pleasant.
Not looking forward to another day sitting around huffing and puffing. T could be worse I’m sure but so far it’s tending towards my expectations 😕
Morning lovelies, on the hair regrowth front, I’m 60 very soon and currently bald and haven’t cold capped so when my hair starts to regrow, I’ll take progress photos. I think it will be a useful reference point for you all.
Susie, just think we could have been in Valtos Beach Hotel at the same time!! The taxi boat was great although I do remember we did the walk in a few times too. We do intend to return there as it is so lovely. Paxos and Anti Paxos are beautiful as well aren’t they? When we were there the little Granny of the owners’ family used to sit by the pool in the mornings. She was such a cutie. Xx
Cant go back to sleep. Night sweats woke me up. Getting some inspiration in the wee hours 🌿
Happy Birthday Daisydi, Hope you've had a lovely day. i know its early days i am prefering T to FEC, I'm out of bed for a start, no sickness this time around. I managed shopping in town yesterday with my daughter and that girl can shop, and have just got back from watching the new advenger film. I'm a bit achy, so have taken some tablets. Injection for me and bed now.
Happy birthday Daisy!
I’m currently doing you a birthday jig as I can’t sit still for 5 mins with my achy legs! 💃🏻💃🏻💃🏻
Going to give in and celebrate with a couple painkillers as I’ll get so hot in bed if I have to put the electric blanket on for too long again.
Sar that sounds like my steroids sleep so hopefully will pass soon. I’ve reported back fit for work as I could work if needed (with frequent leg stretches!) and my boss might come round on Weds he says... great more tidying up to do! 😂
Evening lovely ladies,
Well last night's sleep was weird. I flagged early evening so managed to notch up a couple of hours. Then spent all night alternating between shivering and being far too hot. My mum has even bought me a cooling pillow as I was fed up of turning mine over several times every night but sadly it didn't really help. I was wide awake at 5am but managed to get back to sleep until 8am after reading for a while.
I've had a busy day following a busy week of hospital visits (3 in total).
I braved the shopping centre this morning which was fine other than the fact that I felt like I was in a daze. Then had quick lunch and off to my first choir session. It was fun and I don't claim to be a good singer by any means but it didn't seem to matter. They did have me slightly worried when they started talking about upcoming gigs though 😂🤣
After singing and a fair few laughs, I went home and made choc chip muffins thinking I could offer one to my friend who was coming to visit me, but no, she was being good. Guess I'll have to eat hers then.
Then I had to brave my first tummy injection...it hurt! Not sure what went wrong.
Ready for bed now so I'll have to catch up with you all over the weekend.
Love to all.
Happy Birthday to you 🎶🎶🎶🎶
Happy Birthday to you🎶🎶🎶
Happy Birthday dear Daisy🎶🎶🎶
Happy Birthday to you🎶🎶🎶
Daisy, you kept that quiet!. Happy Birthday💖🎂🍰💐💐🌹🍾🍾🥂 🎈🎈🎉🎉🎁🎁. Champagne sounds good. Cheers🥂.
Enjoy the rest of the day. Lots of love and best wishes. Susie B xxxxx
Thanks for birthday messages. Feels like a strange one!
mine was the same last week - at least we both had the luck of our birthdays falling on our "good" weekend, but it's not quite the same as previous years, is it!
Try not to worry too much about the "T", sounds like your nurse has been pretty negative, hopefully it won't be too bad. It is still early days for me but it hasn't yet bashed me about as much as FEC usually had by this stage in week 1, so here's hoping.....
enjoy the rest of your big day
Happy birthday to you...happy birthday to you...happy birthday dear daisyd!!! Happy birthday to you!!!!!!!!!! ❤️😜🎉🎀🎁🛍🎈🎊🤹🏻♂️🍫🍪🍷🍷🍷🍹🍹🍾🍾🍾🎂🎂🎂🍰🍰🍰
It IS Daisy's birthday!!! I just scrolled back and she did say a while back that it was April 26th.
Feel bad that I didn't remember.
Happy birthday Daisydi!!! 🎂
Enjoy that champagne 🍸
If it is here is a birthday image.
On behalf of all of us ,February starters !
Daisydi are you a birthday girl today? If so a very Happy birthday darling. Champagne sounds a wonderful idea. Xxx
Jeff is a Canadian English High School Teacher and story teller.
His Odyssey is also just out and I started listening today.
His Trojan War is excellent as he weaves in all the backstories .
I listened to it last year.
I think Veronica will enjoy listening to him. He has done his research but he also has a very engaging manner .
Ps I also follow Emily Wilson on Twitter- first female translation of the Odyssey- got her version but it will be a summer read I think.
Also Margaret Atwood ‘s ‘Pelenopiad’ - a good read.
Has Veronica read
Madeline Millers ‘Circe’ and her award winning ‘Song of Achilles ‘ ?
Get Veronica on the forum ASAP . I love all this stuff too 🤗
Evening all. Had quite a busy day today. Had to go over to oncology unit and get my tons of steroids to take on Monday. The nurse said to expect the same side effects as FEC so Im not looking forward to it. She said the T is really tough and my legs will prob turn into treacle. She has given someone a good telling off for not giving me new regime. Couldnt get blood done as it is too early. Went out today for a little birthday lunch and saw my mum who managed to speak some words to me so that was nice. Now going to have some birthday champagne. Love to all xxx
Evening all xx
Well I am definitely faring worse on T. Husband is making dinner which I’m cautiously optimistic about... minted lamb chops with mash and broccoli. Hope the mint isn’t too sweet but I bought these pre tastebud meltdown. I’ve strict instructions no cheese in my mash! I still have cheese fear! 😬
My leg ache has moved from thighs to my lower legs and knees so I ended up moving from the sofa to bed where I can put the electric blanket on. Nearly dropped off but I’m just sat watching my quiz shows quite happy. I do like my afternoons of quizzes!
Maybe I should take some paracetamol. I just don’t want to drug up if not needed and I want to save painkillers for any nights that get bad. Debating a bath but I normally get totally sweaty if I have it too warm.
Guess I’ll just lay here until dinner...
Sorry Sandra, I had got everyone's regimes mixed up, it is hard to remember who is having what. For some reason I thought V was 3xFEC and 3xT. The plus side of all FEC is that she will kind of know what to expect each time without moving onto something new. Half way through now. Horrid as it all is at least it is half in the past x
As for you beach ladies, I had to Google Parga. I've never been to Greece, never really done a beach holiday apart from when I was a kid with my mum and dad. It does look super pretty though. Lovely to have something positive to look forward to after all this.
MBJ that is reassuring info about the travel insurance. Thank you. I also have a free policy through my bank. I expect it will be a similar thing then next time I want to book something, I would call them first and pay an extra premium... I guess that is fair as long as it isn't crazy expensive.
Nettie, I am cautiously super happy for you that things are going better so far this cycle! Avoid lurgies!!
Susie, I shall be watching faithfully for your hair updates it really was frustrating me that there are a ton of blogs from younger ladies chronicalling their regrowth every month for years but none that I can find for older heads I do like seeing the pictures.....
Here is one set I found online. Love that by the end of the 10 months she is rocking a little pigtail
As for me.... side effect wise I still prefer T to FEC so far. Feeling a bit woozy and tired but touch wood no sore joints etc yet. I was expecting more of a "withdrawal" after coming off the big steroid dose but so far so good. Food and drink still tastes a little off but as I am trying to watch what I am eating, that's maybe for the best
Plumber came round and fixed the shower. Teens have tested it since and are happy. Good because now hopefully they won't keep using my en suite and leaving it in a boy mess
And my other main achievement today involved hours of back and forth with payroll at my work. They had totally miscalculated my new pay levels after dropping down to 3 days a week and have underpaid me this month by around £500. I spotted 3 different errors in the pay slip but they weren't having it. Eventually got it checked by the head of payroll who confirmed I was right. Nice feeling. And a relief as I have budgeted close to the higher level, I couldn't lose £500 more a month! Would have had to go back up to a 4 day week which would make me sad as I am really looking forward to my 3 day on 4 day off permanent schedule. Workaholic me is no more!!
Am now out for my (late) daily walk but I dont think 10k steps is on the cards. Not quite up to that this afternoon. 6 or 7k will do me today.
Take care all x
Hi Susie B
We always went when the children were young we used to take our caravan. But then it got so expensive. We hope to get good tickets for the whole weekend and access to the podium arena.
My son will have Grand Prix envy, MJB, if I tell him you're hoping to go to the one in Abu Dhabi. He's been into the Grand Prix season since I can't remember when. That's boys for you.
I'm 62 and have acquired several rather large bald patches so I'll try and remember to let you know if I have any renewed hair growth between now and when next chemo starts. It's two weeks ago today that I had my last chemo and hair is still falling out but at a much reduced rate. xxx
Also does Veronica know the meaning of her lovely name ?
In Ancient Greek it means ‘ to bring Victory ‘.
That is such a strong and powerful meaning.
Rosina, she certainly brought victory into my life, she is a blessing since I discovered that I was expecting and she filled my life with love, light, joy, up to the point that I have always felt that all the time I will ever have will not be enough.
Just scrolling through the posts to get to the last one I read and there in front of my eyes is the view I know extremely well😊. We've stayed at the Valtos Beach at least 6 or seven times over the past 9 or 10 years, although maybe this year may have been our 7th until we had to cancel😭. We love the idea of getting the water taxi to Sarikenico (phonenic spelling), or going on one of the boats that go across to Paxos and Anti Paxos, or walking through the town to the little beach. Oh and I can't forget Valtos beach right on the door step🏖. Oh and the food and cocktails. The hotel gets booked up very quickly so there was no time to think about, a case of 'Just do it!' My husband knew I'd be booking it so he was ok about it . Thank you for posting the photo😊. Happy memories xxx
Hi Rosina, V has been quite a champion, since her diagnosis that she has cried only once. She went through the mastectomy, more than three months of a wound that did not stop leaking, she lost all her hair with her first chemo. And still she is comforting Granny, she is a very sweet person and show no signs of depression or grieve.
And, on top of everything, I lost my job, she lost her scholarship, we have no money, no savings and we are risking becoming homeless.
How many people would not ask this?
Rosina, V went through so much in her life that she is one of the strongest people I have ever met, but even Jesus had his moment, and that happened under the beating of that chemo-devil yesterday.
Oh, by the way, I told her about your Berenice/Veronica and she started immediately speaking about this.... she has a BA in Classics and she is crazy about the stuff
Shhhh I am whispering to you keep well and stay home. Don't mix with any randoms (anyone you think looks as if they have germs 👾 probably everyone).
I rang Nationwide Building Society yesterday as we get world wide insurance with our flex plus account. She asked me some questions about diagnosis, whether I was still having hospital treatment- which I am not. She said she was sorry for having to ask if I had received a terminal diagnosis. Well I suppose they have to ask. I had to pay £236 for the cover for a year. I think this also covers my husband's increased age of 70😃 and his high blood pressure. SheSsaid h could choose not paid it and not to cover the BC but thought I would feel safer to pay the money. We are hoping to go to visit our daughter and family in Abu Dhabi in November and go to the Grand Prix while we are there. I have now booked a cruise for June and have found another nice one for September ( but will keep that one up my sleeve for a bit or hubby's BP might go up).
Only good thing is presumably that was V's last FEC? If she is moving on to T next, that's only one drip bag of drugs with some saline either side and you're done, much less faffing than with all the different FEC syringes and drips.
Hi Implausible, no, she has another 3 to go, no T, just FEC, followed by radiotherapy and an inhibitor like Letrozole (her ### was lobular). She is also enduring the Zolodex injections once a month.
She was advised to remove her ovaries entirely in a nearby future.
Hi beautiful girls, I’m reading all your posts but keeping very quiet here as don’t want to tempt fate and say anything yet but things are looking more hopeful this cycle!
Susie, I adore Parga. Have you been before? We stayed at Valtos Beach and this was the view from our room. Xx
I really would like to find some examples of older ladies (50s/60s) to see if we can expect the same kind of rates.....
Although to be honest I really should just stop obsessing about hair altogether
So this article would seem to imply that some travel insurance companies take the mickey more than others:
Some seem to hold a cancer diagnosis over you for ages, some are ok as long as it was more than 2 years ago and you aren't still on a ton of meds....
I guess it will be a case of shopping around....
Oh good on you for booking a holiday. It is always so good to have something to look forward to!
I don't have the guts to book anything too far ahead just yet that includes flights, as I think if I had to cancel due to anything remotely BC related they will pull the old "pre existing condition" excuse. So I think I will stick with last minute bookings for the next while.
Am considering a city break to Krakow or Prague in October....maybe....
It does make me wonder, how long does that "pre existing condition" thing last? Say it is 10 years time and we are all better and the dreaded gremlins have stayed away, does it still hang over us? Or is there a time limit on the insurance books? I'll have to look into that....
Quick confession. Not sure if I've done the right thing but after writing my last post I checked the TUI website and discovered they're now taking bookings for next year. Soooooo I've booked to go to Parga at the beginning of July. I don't intend taking Gremlim or any of his family with me this time. I think he may have been with me when we went to Dubrovnik in September not sure about Parga as that was in July. There we go positive thinking😊
Have a good day everyone. I'm off soon for bloods for the trial and PICC care. Followed by a bit of retail therapy👖👕👠 unless it rains🌦🌧☔, then I'll come sraight home. xxx
A proper good morning to everyone.
Wow Sonia I think we all need to move to Australia. That's an amazing lot of hair for just a couple of months. Must be something in the air out there it is so encouraging.
I did look up some examples of hair regrowth blogs and YouTubes the other day to see roughly how much to expect month 1, month 2 etc. etc. But they are all mainly by much younger women and I expect it goes a little slower as you get older. How old is your pal?
Rosina right there with the very apt words of wisdom again. That "why me?" is a destructive question I agree. I've found myself falling into that hole once or twice since this journey began, but I don't allow myself to dwell on it. It is pointless. As you say you have to look at "how can I grow from this experience?" instead. Or if that's too difficult in the moment, it is "what do I need to get through today?". I already know that this whole thing is going to change my life for the better in some ways. I have enjoyed spending more quality time with my youngest son while I have been at home more (I was a bit of a workaholic before so he barely saw me in the week, and I was usually away at the weekends), so I am going to keep my 3 days a week as permanent hours at work, not just during recovery. Work life balance. It means I will have less money but I wasted a lot of it anyway.
Maybe I needed something like this to wake me up a bit.
Glad you got some sleep too despite the steroid hit and hope T is still treating you well.
Talking of which, Edinbird, hooray for the return of the tastebuds!!! Mine seem ok today too. Still not 100 percent but getting there.
In fact in general I feel remarkably ok for Friday of week 1. Usually by now I am rocking to and fro in the corner like a recovering junkie!! Long may it continue!
Annoyingly I can't go to that life drawing class at lunchtime though despite feeling well as it turns out that the plumber has installed our new shower wrong (it seems to be able to deliver scalding hot or freezing cold water, but nothing in between! Something up with the mixer....) and lunchtime today is the only time he can come to check it out. Never mind. Maybe next time.
As for support groups and stuff. I've always got on well with forums and things like this but I also am nervous of real life groups with real life people in them I very nearly bottled out of going to that look good feel better thing, I only went in the end because I really wanted the freebies!!! but it was actually fine. Same with when I used to go to slimming world. I think the thought of having to interact with other humans is scarier than the actuality.....
I'm sure I've missed someone as I haven't jotted notes down like usual.... I'll be back later if so
Have a good day all
Good morning lovely ladies
Rosina thank you so much for the quote today it's what I really need to live by. I also love your questions and I am going to answer them later today. Have you thought about a career in counselling or becoming a life coach I think you would be wonderful.
Susie B I can understand your reluctance to join a group. As a lecturer I was always aware that some students were more comfortable in group settings for example doing group work, or participating in group discussions. Indeed groups are not for everyone, but I feel you have been able to be an active member of this online group so maybe you could do the Moving Forward course. You could always try it and if it's not working for you just don't go again.
Edinbird sorry your sleep pattern is still rubbish but at least you are eating and healthy eating too.
Sonia 28 well I can't believe I might have that much hair in a few months, there is hope. I did have very thick hair so I hope it's determined to come back strong even if it is white!.
Everyone else who has not woken up yet 😃 I hope you are feeling ok. If you need a lift of spirits this morning read Rosina's posts.
The quote from your book and advice on what to ask is deffinitely appropriate in our situation. Strangely, for me I never asked 'Why me?' when I received news of my diagnosis, which would have been my normal reaction. My Mother-in-law's reactions to bad things happening sprung straight to my mind. Typically she would say something like "There we are. It's happened. Let's get on with it." So if it was a car accident, get on and sort the insurance, if was diagnosis of an illness then give me what I need to fix it, if I need an operation then do it. Sadly she passed away just over 6 years ago and she was the one person I wanted to talk to when I got my diagnosis. Although the B in my user name happens to be the first letter if my surname it also refers to her. She was known to everyone as Bea so that's my little tribute to her. xxx
Also does Veronica know the meaning of her lovely name ?
In Ancient Greek it means ‘ to bring Victory ‘.
That is such a strong and powerful meaning.
Thank you for the information regarding the Moving On course, I will certainly think about giving it a go. Until this bc hit I was never interested in meeting people in similar situations as me. When I was made redundant from the Civil Service I'd put on loads if weight, we hadn't been treated too well so there was always cakes, sausage rolls and other fattening goodies🍞🧀🥞🍩🥙 in the office to keep up morale. I decided to join Weight Watchers, but joined on-line and didn't participate in any of the forum chat.. xx
You always have the answers or at least a way to understanding Rosina 🌈
After a very disturbed night I thought I’d better get up and try and drink some yucky water... and the water almost tasted normal...! So I excitedly tried my orange juice and that was nearly normal too! 😁
Tea still not quite there. Had scrambled eggs on a bagel knowing I could do eggs yesterday and that was fine, a touch of ketchup even worked!
Dont want to get too carried away but after feeling so down about food and drink yesterday I’m hoping it’s just been a blip. My neck is less sore but my legs still ache. I just feel like I need to keep moving about or get a massage or something not sitting still. Just concerned about any dizziness so slowly and steady again this morning I think. But feeling much more perked up now.
Hope everyone is feeling good too and remember this will pass. Maybe not everything as quickly as my tastebuds but we will get there girls 💪🏻