Sounds like you have a good day planned @donkeywoman - enjoy! Hope the jab gives no side effects - goodness me you've had enough to deal with.
I'm still trying to sort my covid jabs. My GP can't give me a covid jab date that works in my chemo cycle so I tried to book via the National Coronavirus Vaccine Booking System. It's not seeing me as extremely vulnerable. They told me to go back to GP to make sure all flags ticked. I know they are as I got texts from the local council as a CEV and shielding person as soon as GP did it. Called GP and receptionist said all ticked - which they'd told me before and doh from the council info I've had. Went back to 119 who can't do anything about it. Seems should be seamless feed/update. Can't book a jab until 119 recognises me. I've registered a complaint with 119. #ComputerSaysNo 😧
I'll get it sorted later as the practice nurse is going to check out my ears because of my tinnitus being more prevalent since chemo started. She's asked my GP to triple check everything.
Always two steps forward, one back.
I slept really well last night as I did 5 hours work yesterday. Well my boss saw me around for 5 hours, doubt I really did more than 2 hours real work. I'm doing 6 hours today then full time the rest of the week before annual leave next week. My goodness, I've looked at my calendar and assuming I am well I will only be working 3 days in March what with the 1st and 3rd week off post chemo and 10 days leave. In fact, get this, from tomorrow until 8 April (the week after Easter) I am only scheduled to work 9 days. 👊🎉
Let's hope we have some warm weather so I can finish off the garden - a new patio was laid in September and we didn't get to finish off a few bits before we had a staycation and the grotty weather kicked in afterwards.
Take care everyone.
I'm ready for my trip out for the vaccine - I've put on a necklace and a squirt of perfume! I'm going with hubby as he is some other places to go for some essentials. I obviously won't go into any shops, but it's a change of scene. Ah, little things. Thanks @Mumboo tooth feels fine today, think I'm just getting (increasingly) neurotic.
Hope half term goes okay - a break from home schooling, but still need to find ways to occupy kids, not that straightforward?
How is everyone feeling today? This is my best day so far - first time for a few days I didn't wake with a headache and it was lovely getting up and going out to hens and donkeys. Much easier now that everything isn't frozen (including me).
@Belinda_F hope today feels easier and that the added steroids help.
Your dream @Mumboo ! I'm sure a dream expert would read all sorts of things into it - but I'm not one. But maybe something about feeling 'under siege' trying to deal with everything.. Did you manage to get back to sleep? Hope the folk from your past were nice ones...
@FlorrieBee hope you are doing okay?
Anyone got treatment today? Sorry, I can't keep up with all the dates.
I'm going to take paracetamol before I go for jab, just to ward off any rough feelings...
Hope all as well as possible xx
Well it's another one of those random nights where i wake about 4am! (at least it gives me an opportunity to drop into you guys!!) This time it was because i had a bad dream... About being stuck in a shed, in the middle of the town centre where i grew up, with a pack of big brown bears outside & random people from my past in the shed with me! Mind is so weird!! I don't always have bad sleep. Mostly i sleep from 9pm to 6am!
@donkeywoman so pleased you got your Bristol break booked. It's so lovely to have something to look forward to. I do hope all is well with your teeth. That's something that i also worry about - not fear of the dentist, just don't want anything to fall out!! I do try to tell myself not to worry about something until/if it does actually happen! Doesn't always work, but i try!!
@Belinda_F huge well done on your final EC last Fri, although a bit of an epic day though! What treatment have you got next? So pleased you found an online support group. I was invited onto a different one, but just didn't feel ready & i hate Zoom meetings!! I do so wish it could be face to face. I would've gone to one of those. Another downside of this blooming covid. Grrrr!
@leianajones glad to hear you've got your wig ordered! I'm getting more used to wearing mine when going out for a walk. I even wore it indoors for a Valentine meal with hubby & my girls. My eldest only remembered it was my wig after about half hour! She just thought it was the old me!
It's so lovely when your kids do something thoughtful isn't it @Pesto My girls spent the whole day making pompoms to decorate the dining room for the meal. We now have about a million red & pink pompoms in random places!! My youngest also enjoys tickling my bald spot @lewy! Kids!!
Regarding the covid jab in which arm..i had mastectomy & lymph node clearance from my left side & have a picc line in my right. Dr said picc line arm was best for me & i had no problems. Just a bit of an achy arm for day or so after.
@tennisgirl so glad to hear you're recovering from your surgery & that it hasn't spread to your lymph nodes. Such good news! Fingers crossed for good results from your genome test.
Hope #2 went ok yesterday @FlorrieBee & your amended meds are making it a bit easier??
We're on half term now. So pleased not to do Home-schooling for a week! Just got to find things to keep kids occupied that doesn't involve constantly baking cakes....arghhh!!!
@Belinda_F , miserable feeling sicky, hope continuing the steroids helps. It's so hard to know what helps what, when we have such a cocktail, isn't it. All so wearing. Fingers crossed tonight and tomorrow are better for you. Not surprised you felt guilty.
@leianajones that is great news about the shrinkage in your tumour. Love good news!
@tennisgirl glad your op is done and hope you are giving yourself gentle time to recover.
Hope everyone is doing okay this evening.
I've had a good day, been out and done more with the animals. But feel really tired this evening and got a bit anxious that one of my fillings was falling out (I'm terrified of the dentist and don't go unless something has gone wrong). Now I think it is okay, just me being paranoid. Think I'm just dreading more chemo and it's making me hyper vigilant... Need to be calmer tomorrow, or I will talk myself into an allergic reaction to the vaccine!
Right, need to go and say good night to hubby, I abandoned him to lay on the bed and do some breathing...
I'm so relieved that the weather is milder now, makes things more manageable.
Hope all treatments, recoveries, etc go well over the next few days xx
Thank you for thinking of me. Nearly 3 weeks since op and apart from bad sickness and nausea the day after, all went well.
Stage 2A, was 3.4cm and has not spread to lymph nodes or anywhere else. Still a bit nippy.
Waiting for genome test to come back to see if chemo is required and otherwise radiotherapy and tablets.
Hi guys, I'm trying this time to write on laptop, my phone really gets on my nerves not being able to tag you all properly! here's hoping this is easier...
@leianajones I seriously can't say how OVERTHEMOON I am you've had such an incredible response...to one treatment! wowowowowow! you must be so pleased, so relieved...and what a relief also to have your E lowered, it should help make the rest of the treatment so much more bearable. Congrats, just so pleased for you. Did you have a bad weekend? I'm not sure I've caught up on all you guys messages...I'll look....we're on the same day aren't we. I do hope you're feeling better today? I'm seriously impressed also you managed a bit of the old nooky last week, go you!!! I don't think the good men see the hair or the illness...the love is all....
how did your treatment go today @FlorrieBee ? How you feeling? Are you at home now resting?
and are you still feeling you have more energy @donkeywoman ? I do hope so. You are so seeing the end of treatment in sight now are you? 3 more did you say? You have that marked in BIGBOLDWOOOOO on your calendar! and a cricket trip booked, brilliant. I will book something too...the lakes, peace, mountains...ahhhhhhhhhhhhhhhhhhhhh
@Mumboo how are you? and I wonder how @tennisgirl is now? how are you feeling after your op? @Lewy2803 is your thrush sorted now? I do hope so...it's that kind of thing that can make you feel so so miserable...on top of everything we're going though. @Pesto i hope your special day was indeed lovely and very special. And @Gelbel you had a normal end to your day! wooooo! aren't they incredible...that feeling is soooo to be cherished isn't it....but lukewarm tea, lol, what's going on??? lol
@Lewy2803 that's wonderful they're bringing the job to you! that's what I call fantastic care. will be a big relief won't it.
I'm feeling a bit grumpy today...woke in night feeling icky and the struggled to sort it in the morning...puts me in such a bad mood. Spoke to drs and they said to continue with the steroids for a few more days which is fine...but not sure they're working as well as the ondensetron, which is so hard on my gut i stopped taking it...but might have to consider it again if the rest of the bag don't work...then called my GP to try to get a prescription and there were no emergency appointments left so the guy got my tears and flea in his ear...and my lovely GP just called so that's cheered me up a bit, can get the meds in time for tomorrow...
Oh, I took part in a online support group this morning...with Breast Cancer Haven. It was a bit a of palava at first as it started late due to tech probs but was really nice to see other women, and hear their stories too...recommend if anyone likes that kind of thing? only thing is, it's only once a month which isn't enough for me...at least we have here, our lovely little team of wonderful women.
Big bigs hugs all xx
Had mine the other Saturday, sadly no nice undies will be required....... They did it my left upper arm. No real consequences but I did the heed the advice of others on here and took paracetamol for 24 hours.
It ran like clockwork, nine minutes from leaving the car to being back in, but I had not driven myself. My arm did feel a little stiff for a few days and I can still feel the lump, but in the scheme of things at the moment it is chicken feed. Good luck with it The sooner we are all done the sooner we can all get out. Just going up the road to our local shops for some milk will be like going on an African safari lol, I can't wait.
As I have said previously my bins go out more thanI do
@leianajones That is amazing news. You must be feeling invincible!! 💪👊
Just had my PICC line flush, bloods and covid test done and then had a phone call from the GP saying they were coming to my home tomorrow to give me the covid jab. How cool is that!!
then a quick chat with oncologist tomorrow afternoon and all good to go for Thursday. Who’s had the jab already? Just wondering where they give it to you - do I need nice undies on?! Only asking as have PICC line on right side and had my surgery on the left tho only one nymph node taken. Anyone have a view?
Wow fabulous news regarding the reduced tumour. Well done you
Agreed it seems worth taking the s;;;t for the results.
So proud of you
Hahah @donkeywoman my summers spent at the donkey sanctuary as a kid are helpful 🤓
I clearly would be telling all you lovely women to total opposite of what my head was, and actually typing the message to you yesterday made me realise I need to be kinder to myself. The way I've felt this weekend though, never happening again lol I feel so poorly( not connected of course) .
Quite the day of cricket yesterday, and rugby... France who knew??
Hope treatment goes well today!! They reduced my E in the EC too partly to do with my reaction and partly to do with the MRI showing my tumor has reduced in size by 50% and in volume by 82%. These guys know what they are doing I guess and if it's working but you don't have to feel so **bleep**ty it's worth it.
Big love for a new week, for fourth coming treatment and recovery from last xx
My second round of FEC is tomorrow morning @Lewy2803 Had my call with the Oncologist Friday and he is altering my sickness meds and reducing the chemo dosage (I did query this and he said any impact on its effectiveness should be minimal) so says my reaction should not be so severe this time, I so hope he is right!
Happy Birthday @Pesto such a lovely post and you are absolutely right, our close family, friends and their words, help and support better than any present!
Hope everyone gets on okay this week for those having treatment, and for those who have had treatment last week, hope things are going on in the right direction. Hugs all round xx
@leianajones well done you, I'm in awe! Definitely not over sharing, isn't that what this forum is for? The anonymity means we can share what we like! But how do you know that a donkey is dry ☺?!
And wise words about us looking better than we think (not sure I really feel that but...) and that love is the real thing.
Great that folk are booking treats away, @Belinda_F , do it! You will be ready, won't you, by the time treatment is done...
Thanks @Lewy2803 , yes I have treatment Friday, all being well. All the best to you too. And @Mumboo , how are you? Hope all getting on okay. I am so glad the weather is warming a bit, it took me so long to warm up after going out to the animals at lunchtime. The donkeys didn't want hugs, just cuddles.xx
Happy Birthday @Pesto ! boys can be so sweet sometimes. I have an 18 year old who has given me so many cuddles since I started chemo (before grunting, farting and going back to his room)! Oh and then taking the pi*s out of my bald spots!
thanks @Belinda_F for asking. I got out for a very cold dog walk for 1.5 hours (go me!!) and have felt much better thanks.
@Leila you made me giggle so much. We have talked about hubby’s dooda falling off too!! Well done for trying!! But remember however we look on the outside (which in reality is nowhere near as bad as we imagine) our partners are in love with us and won’t care xxx
@Belinda_F i think I'm on the same as you, genuinely have no idea what they're pumping into me when I'm there. At home I'm on the dome whotsit antisickness and the steroids are doxywhosit. Is the filstratin the injection? I did that last night ... Definitely not my favourite part. Feeling not great this morning but now on second lot of steroids I'm coming back to life.
Had some romantic Mac and cheese made for me for my lunch today and it's done the world of good.
@Pesto happy birthday fellow Aquarian!! What lovely boys you have!
@Lewy2803 I know what you mean, I had a good few days last week and thought we'd give it a crack... Had a horribly awkward convo with my chemo nurse to check his dingdong won't go green and fall off and she said no as long as it's more than six days after chemo day. But also suggested an investment in some help down there as it's defo drier than a donkeys dingdong 😉 honestly didn't expect to want to do anything intimate but it could be the hormones or what but I found myself with the inclination... However the reality was more that I hated my body, the fear my hair would fall out on the pillow and felt self-conscious that my dressings are gross. He obviously disagrees and says I'm beautiful regardless but we're a different breed right. Sorry if that's a bit of an over share or inappropriate but I thought it might be on topic.
Happy Birthday @Pesto !!! what lovely cards, I'm so glad your boys are taking good care of you today 💞 enjoy every special moment, they're what this crazy life are about.
so sorry to hear you're feeling poorly @leianajones ~ did you have a treatment Fri too? how was the port use? all quite easy? it's good they tweaked your nausea meds but I'm sorry still sickly... how you doing now? I've stopped the ondesetron and on cycl something now... so far so good but also on the steroids and million others... will you start your filgrastin tonight too? not looking forward to mine. are you taxiIng to hospital or getting on tube? or lift of course... maybe you can walk? the tubes were marginally busier Fri, not looking forward to a lighter lockdown on the trains, very selfish of course... will likely get cabs then.
that's great you're getting your wig, but yes, that's rather a long wait, is it being made for you?
I'm still doing OK. stayed in bed til two but that's just being lazy. made it onto sofa for Columbus, my Sunday staple. you all sound like you're so enjoying the cricket, that's so great! it's never on when I try to watch it, what are the times of it?
top food tip! chips, fried rice and curry sauce! OMG!!! I can taste it and it was tasty!!!!!! so I might make a curry this week, if spices are pushing thru the taste barrier, that's where I'm going!
Happy Valentine's all. An odd one isn't it... romance and lust might be lacking today, but I do hope those of you with lovely partners enjoy some super (socially distant?) hugs instead. I got flowers from my best pal and my cat is giving me lots of love so I'm feeling it whatever today. 💞💞💞
Happy Birthday @Pesto / Gilly. Another with a tear in her eye here.
Funny how they knock it out the park when most needed.
Enjoy your champers. xx
Thank you for you lovely words too
Extra big hugs for the Donkeys..... it is Valentines day after all !!!!
Ah @Pesto that is such a lovely post, thank you for sharing. And happy birthday. How wonderful that your boys and your husband properly appreciate you. I had a little tear, just reading it. Particularly impressed that you are even considering champagne! Have a lovely day, you deserve it and so does your husband xx
And a very happy Valentines to you all, today is also my birthday and it is amazing how the mind set changes with the big C
Last October when diagnosed re the return I did not think I would see Christmas never mind today. Well I am still here.
And so far it has been amazing. I so appreciate the cards from my sons with their exceptional lovely words ( Both ) sent the identical card with a photo of me with one of them having a huge hug, incredible because one in N Wales the other in Scotland. Both wrote the card from their hearts and suddenly I felt very teary. It is wonderful to be told how important I am to them and how I shaped their lives. The big hulks are never emotional nor serious, usually the funniest guys on the planet.
So no going out for lunch great relief, no huge party again great relief, just a log burner, a dog, hubby with his beautiful flowers and yes.... a Valentine.... pick me up of the floor and looking at the flowers and my gorgeous cards. What a day so far, marred only by the constant headache. Champs in fridge for elevenses, though that seems a little too far at the moment.
basically I suppose I am saying the love of my hubby and family even from a distance have made my day and one I won't be forgetting any time soon. Words are far more important than tons of useless silly pressies.
I am so lucky.
lol @donkeywoman I'm so glad I'm not the only one ..... when I had the pre chemo chat with the very nice italian male nurse (over the phone thankfully) he asked my if I would like to talk about my sexual health .... I went all British and said no, no that's all fine thank you! But yes, hubby and I have talked too and decided to just go with the flow.
I'm wondering with the headaches whether there may be an element of being inside too much in front of the log burner? Going to take the dogs out today (once cricket finished) to hopefully blow away the cobwebs.
Re hair loss - i have several bald spots now but can just about comb over so it isn't noticeable. For those of you of a certain age... I look a bit like Max Wall!!
Have a good day everyone xx
Well I wish I had got up when my hubby was snoring at 4am. I left it til 5:20 and missed so much cricket.
@Belinda_F - glad to hear you're doing ok so far.
@donkeywoman - great news about your trip to Bristol. I can't wait for my next trip there - means I'll get to see my family. 🤗 I was brought up in the County Ground area. I've sort of got sometime in June between chemo and rads in my head.
Best cicket venue? Headingley. It's only 10 minutes from us and if the wind's in the right direction we can hear the roar of the crowd. It so tends to be a venue to bring out the drama. I did some rugby stadium stewarding in the season after the 'Stokes/Leach' test. 99% of any visitors went straight to see the cricket side and the wicket.
I had such a better day yesterday - realised I felt just about normal in the evening. I so hope that means that lying on the sofa is all I need to do for the duration! Not sure what my head hair's doing - I think it's thinning but I've so much fine hair it's difficult to tell. Body hair definitely going - I spent much of the afternoon admiring my smooth arms! I've taken to preferring my tea or coffee luke warm. 😯 What's that all about? I've never drunk it less than scalding before.
Fingers crossed for some warmer weather, I so need to get some fresh air. It's been too cold and I've felt too ropey.
Happy Sunday. Give your other halves an extra cuddle as they need a big fat thank you for all their amazing support... even if you want to kill them for snoring at 4am. 🤣
@Lewy2803 congratulations on a splendid sleep! But not the headache - what is it with the headaches?? I keep getting them too, though they tend to go once I'm up and about... H'mmm, sex, what is that again?? I have actually thought about it a bit - not in a tempted way, more in a 'ugh, why would he want to come near me, the state I'm in?' way. We did talk about it at the beginning and agreed that it is just a no until chemo over and then we will think again... I think there is a whole thread on the forum, isn't there, but I'm not looking at it until there is even a glimmer of a chance!
Anyway, who needs sex, we have sport! 😁
sorry to hear you’re all having trouble sleeping. Apart from getting up for three pees in the night I slept through 10pm - 6pm so I’m quite happy. Banging headache now though. Happy valentines everyone! OMG sex ..... has anyone actually done that since they started treatment?? Distant memory for me especially as I had surgery first. Lol
have a good day everyone!
Propped up in bed watching the cricket - oops, not quite going to plan for England...
@Belinda_F glad last EC is done, phew, that was a long day... But long may feeling okay continue and yes, we have to grab any good day, hour, few minutes when they offer themselves! Re port - I haven't been offered one and to be honest, I would rather stay as I am if possible. I was up for the PICC, but I'm not particularly troubled about being stabbed, as long as they can find a vein. If all goes okay, I 'just' have 3 blood tests and 3 treatments to go. And as I have 3 weeks in between, I'm hoping my veins will hold up. The bruise on my hand from last treatment is only just going, which isn't ideal. Obviously they can only use my left hand/arm (mastectomy was right) which makes it harder. But so far so good...
Damn, I just deleted a whole paragraph! That is the trouble with typing in the semi dark in bed...
@leianajones sorry to hear about the nausea/sickness- hope it's stayed away... Good news about the wig - what look have you gone for? six weeks seems a long time, but at least we are still in hat weather. I'm not going to the Oval in July - which match is that? I should be going in Septmber to see India, replacing my tickets from last year. I love the Oval, although my heart is in Trent Bridge...
Hope everyone's Sunday is starting well and, if you are so inclined, you fit some romance in.... xx
Oh @donkeywoman I couldn't agree more, not sleeping is a regular for me but same as you its perfectly timed for the cricket to start. Which is certainly making up for the rugby performance yesterday hey? Yes it's a win but who is on the field!?!?
CONGRATULATIONS 🎉 @Belinda_F what a mile stone!!! Sorry to hear it wasn't super smooth but it's done!!!! I'm so happy for you. I'm half way EC now and like you say two is remarkably better than day two of one. Night one of two was not however, still brutal. The new anti sickness IV managed to fend it off for a little longer but hit at about 5 and was not in a good way. Thankfully it passed by lunch time yesterday and I had a shower and a chat with a friend.
Love your thinking @donkeywoman couldn't agree more, we need to focus on good things. Are you coming to the oval in July? We'll have to arrange a catch up!
Wig is now ordered, in fear of number two taking all the hair but have to wait six weeks for delivery.
Fingers crossed everyone is having a low pain/ symptom weekend following a week of treatments! Big hugs xx
hello @donkeywoman and everyone! how are you doing? thanks so much for your posts guys and thinking of me. will catch up on messages in the morning, just wanted to say hi. I did actually post earlier but some glitch going on, and it wouldn't let me type then seemed to delete my post... reported to moderator, sure they can sort out.
but just to let you know yesterday, final EC! woo-hoo hoooooo!!!! was fine, long, but fine. was there 10.30-4.30! late starting and then my port was being a temperamental, the bloods back (?) weren't working properly, why would that be? hope it's sorts itself for next time, but so much less stressful than the canular for me, my veins struggled at hospital for bloods again, wiggling about they are. @donkeywoman I know your Picc didn't work out, but what about a port? worth an explore?
and today, don't want to speak too soon, had some queasiness but also energy and have felt the best on day 2 I've ever felt. don't speak too soon hey. we know how this chemo rolls with its slings from nowhere... but I'll take a good day, my god I needed one.
some of you guys must've had treatment yesterday? do hope you, and all of you are doing OK. will catch up properly tomorrow, just saying hi and all's well as can be.
huge hugs, thanks for thinking of, and look forward to your news manana. X
Hi @Belinda_F just hoping that yesterday's treatment went okay and you are feeling as okay as possible now. No need for news until you feel like sending it, just thinking of you xx
Separate rooms, tick. Not sleeping, tick. Fidgeting, tick can't read though, very uncomfortable wearing my specs in bed curling up and reading and without specs the page is just black. The tele is on most nights and all night. Hubby glad he is another room as having the tele on he can't sleep. It was Thunderbirds for me last night, I am so desperate to remove myself form politics, death etc. Need the Love Boat to return 24 hours a day.....
Brill re Bristol, a super goal to look forward too, have you started packing yet ? I would be so excited. Sent a friend a card via the internet for his birthday and combined it with a photo of both him and his lovely wife taken a year ago when were on holiday with them in Greece. Gosh the memories and I am still smiling.
Hugs and a special one etc the Donkeys
Hope the cricket watchers enjoyed today's fabulous play! I woke right on cue at 03:50, but couldn't face watching it - my wake up headache kicked in straight away. But I loved listening and dozing, then caught the last few hours downstairs. I'm quite calm about not sleeping (not a new issue), as long as I'm comfy. But we are currently in separate room (part of our covid prevention) and I can't imagine how I would manage if we were sharing... I'm such a fidget, up and down, reading, listening, talking to myself etc! Will be good to be reunited once this is over...
I've done it, in spite of what the government says. I've booked 3 days in Bristol, Air BnB with some friends, and seeing some cricket, in July. Yay! If it gets cancelled then so be it, but the moment of booking was wonderful. I need these lifts to keep me cheery...
Hope all your weekends are going as well as possible and roll on some milder weather xx
So hard when you can't sleep. If I'm having a long night, I read for a while and then just try and get comfortable and convince myself that my body is resting and recovering, even if I'm not asleep!
Do hope you get a better night tonight xx
Couldn't agree more @Gelbel really missing my Friday night fizz! Can't face anything like that, something else to look forward to much later on. Also, definitely the right thing to listen to your body and rest up. I've had a very 'tired' day, out of sorts so have pretty much rested up all day.
Hope the weekend is kind to you all, enjoy what ever viewing takes your fancy, I will be trying not to fall asleep (again!) in front of the rugby xx
I hope Friday is being kind to you. 🤗
I feel a tiny bit queasy today so have taken the tablets that are working a treat. I hate taking medicine for the sake of it but I've thought 🩲 to it. Slightly whoozier than yesterday but I've been active.... showed hubby how to properly dust the lounge. 🕸
I'm so impressed with the wraparound care I'm getting - one of my GP's practice nurses (the one who originally referred me) called for a little check-in. One of my team's nursing sisters did too. They decided between them that chemo will exaggerate any little nuances going on in your body hence my being more aware of the tinnitus. So on the basis of that, the GP nurse will take a look in the week. I'm sure most is down to no swimming - it did get worst in Lockdown 1.0 so Lockdown 3.0 (in England) has caused a build-up of wax. Drops haven't helped.
Another thing I've listened to is to just do nothing if my body tells me too - such a struggle when I'm a up and at 'em type.
I'll be up bright and early tomorrow to decamp to the sofa for the cricket and comfy lying (back hurts after 8 hours or so in bed, combo of bad back and lying on my back - still can't get comfy on non-operated side post op.). TBH this year is new mattress year but I want the bedroom decorating so it can wait til all this is over ‐ something else to look forward to. It's all planned - just need the right person at the right time. 💡 could get quotes now and pencil it in.
Seems strange to go another Friday without a 🍺 or 🍷- can't face it. I'm so glad your coffee and biscuit went down a treat @FlorrieBee #LittleThings
Peaceful, healing weekends and happy rugby/cricket (player 😍 if that's your thing 😉).
Hi thanks for the tip re codeine..... have tried everything the only med that works is oramorph, on top of zomorphe x2 twice daily
I get to this time of the day and often think why do I put myself through such horror and when I can't sleep even with the above and sleeping pills what is the point......
I know it is ridiculous but night times are so so long !
Still I have several episodes of Thunderbirds to watch and hopefully later some cricket
Sleep tight every one
Aha! Knew I had left a comment off my long ramble @Pesto was thinking how lovely it must be to get some reflexology, very relaxing, don't think they offer anything like that where I am.
I also have had bad headaches, thankfully better in the last two days but for me, the only thing that helps is codeine, normally with paracetomol so co-codamol, but I also have 30mg codeine if they are bad. It has helped but like you, some days felt like I was absolutely rattling with pills as I was having to take anti-sickness drugs up until day 11 of treatment. Do hope the headaches ease for you, just another thought, it doesn't make them go away but I sometimes find a cool flannel soothing xx
Evening all, how are you all doing? Do hope I remember who has said/asked what and apologies in advance for anyone I have forgotten! Also not sure who is having treatment today/tomorrow.
@donkeywoman Thank you so much, you were right about the infection, oral thrush, damn chemo and the extra joys of it. Anyhow was given Fluconazole and Gelclair yesterday, so hopefully that will sort the sore mouth.
I've had a very eventful day today, an outing to the docs for bloods and for doc to check my mouth. I actually have felt so much better yesterday and today than I have for the last two and a half weeks so a massive plus! After the docs, my hubby picked up a take out coffee and caramel shortbread, omg, I tasted and enjoyed both of them. First time I have enjoyed a cup of coffee, the joy of the little things hey! Got out for a little walk and although bitterly cold, I need it if I can do it, love the fresh air and it is such a good head clearer. So this afternoon, after shedding hair like crazy for the last three days, decided to cut it short. A bit rough and ready but think I am going to give it a max of 48 hours before the clippers get their turn. Literally had a sink full of hair this morning, it's coming out in handfuls so has to go! I have got a few beanies and in particular a lovely cashmere one, it is really nice and cosy! Have a couple of cheap wigs from Amazon but not sure how soon I will feel the need to wear one, we'll see. One of you previously gave a good tip re putting some make up on prior to going short, thank you, good tip. I really only bother with some tintied moisturiser, bit of bronzing powder as blusher for a bit of colour, bit of lip gloss and good to go. Too scared to put mascara on as I imagine my eyelashes all falling out when I come to clean it off?!?!
@Belinda_F how are you doing today? Sorry to hear you had a horrible time but fingers crossed now that treatments will be so much easier.
@leianajones thanks so much for the website tip, c-list, will definitely be keen to look that one up. Good luck for next round of chemo.
@Gelbel hope you are feeling better? Interesting that you have had tinnitus, I have also been getting that, especially at night when I'm trying to sleep.
@Lewy2803 good to hear you are feeling a littlel perkier and that your hair is doing well. I am definitely accepting the fact that mine is unfortunately going now, I've always had long hair so it is a bit of a shocker but will attempt to embrace the short look.
@Mumboo really hope you get a better night's sleep tonight.
I've got the Oncologist tomorrow, really hope my bloods are okay so I can get on with round 2 of FEC on Monday (her2 positive and as I call it, what the FEC!)
Take care and big hugs all round xx
Awww, that's much better today. Totally bearable, though still on the whoozy rollercoater. I've been busier and lazier today ‐ put fresh bedding on the bed (first time since Mx and ANC on 8 Jan 👊) without a struggle - that'll feel so much comfier tonight. I gave in to eating off and on all day - you'd think I was pregnant... parmesan and piccalilli on toast for breakfast, cold spaghetti and meatballs for lunch.
I also did the towels which is a usual Thursday chore. In between, I have practically not moved from the sofa. Well, except from trying on my freebie wig. Blimey, it's awful. Nothing like the photo and the colour - I reckon the person who picked it out must be coloured-blind. Platinum my eye - it's porridge coloured . Having said that, if I can be bothered to get it in properly, it'll look OK. I did sort of plonk it on a la toilet roll hider stylie. One of my best friends is a wig wearer as she has lost her hair due to lupus, so I feel a video call coming on. I think my hairdresser will be making a visit to trimming it.
Re telling people. I told my close gang of 6 girlfriends (Thursday lockdown video call tonight), my bestie, 2 very old school friends who I've known forever - we might only speak/meet once or twice a year but we are there for each other and they are they type you want in your corner. I also told a relatively new friend as she'll work out something is wrong because of the volunteering we do for our rugby club and the couple who are mine and hubby's 'best couple'. Obviously my family (mum and brother), I told my aunt as my mum has dementia, thinking she'd be a bit of support to mum - we live 200 miles away from my family and my husband's is over an hour away. The cow decided to tell my all my cousins (not just her children), people I have nothing to do with and neither does she. She was slagging them off not long ago. I went ape. 🤬🤬🤬 We have told 2 sensible members of my husband's family as I think he needs a support network better than his male friends network (the hubbies' of my 6 girlfriends).
My immediate team at work know the details as they are a great source of support and obviously as I'm not working at the moment, though do hope to dip in and out as I can. My boss is the gatekeeper there.
It's all easy to manage re updates TBH.
I thought I'd be shouting it from the rooftops. I've worked out I would be very rude with the fight it/battle it/platitude brigade. I'll be honest, if my best friend tells me what to do again I'm going to have to say something. She means well but she ain't my onc/BCN team... unlike one of my gang of 6 who is one of my team's chemo nurses. 😇
Sorry for the ramble and probably a load of typos.
I hope you're feeling comfy and safe. If you've had, are about to have your next treatment, lots of healing hugs. 🤗
Hi all, been a funny day.
Can't get warm, hands like blocks of ice, appetite poor, even the bribe of supermarket donuts from hubby fails, but turned away and dog was smiling licking his chops.
had visit from Macmillan again today very informative. And yes they did orangise the reflexology etc going forward.
I have been offered a mindfulness course run by the resident clinical psychologist via zoom at the local Hospice (Group sessions ) as well as been referred to a trial of drugs at the same place for fatigue. I have jumped at both. My solo attempt at mindfulness has been mixed so far, but I am so down and stressed i have to do something. Being in a group should be fun as well as very educational. And like everything else more likely to participate to the schedule as opposed to trying to get myself to take time even though that is what I have more than I need during the day.
Headaches not subsiding, but could be apart from my daily meds ( I rattle when walking ) the anti depressant recently prescribed. They take time to work..... but I ask you how can anyone not get depressed even if only briefly with what we are all going through If only our diagnosis could be treated by placeboes and considered mind over matter !!!!!!!!.
I have even made a playlist called ' World Cruise " where I travel to wonderful places living the life of luxury, having my every want handled before I know myself I want - food, or drink, or a massage, or a little swim in a blue lagoon.... Dreams they are free.....Not able to read books at the mo, eyes not focusing properly...sheep brain and have to hold it... takes effort. Not yet considered a listening book, but who knows
Big hugs.. hope everybody has had either a good day or not so bad.
Oh and thank you all for your honesty about communication, I'm using covid as a way to hide I'm sure but your advice really means a lot and has given me something to think about!!! Xx
@Belinda_F I'm so sorry to hear you had such an unpleasant experience! How awful. I understand where you're coming from. I guess I was fortunate to fall asleep before it started. It will get more comfortable, I realised when they changed the dressings it wasn't my port I could feel it was the dressings so hopefully you'll feel the same too. I'm now at the point I forget it's there, sleeping on both sides and almost on my front! 🤓
I have treament on a Friday (weekly) and Tuesday just gone had my Covid jab booked.
Was dreading it i don't do needles lol, however didn't feel a thing and was quite proud of myself after 🙂
Woke up yesterday feeling drained and generally no energy and generally feeling quite dizzy and sickly, not like me since starting chemo think i've only reacted like that to the chemo once, so think it may have been a combination of the jab and the chemo catching up. Slept alot drank smoothies and this morning woke up feeling a little better. Had to go for bloods and managed a Mc Donalds brekkie on the way home so must be better lol. Hope everything goes well with your jab but just rest and take it easy after.
@Belinda_F - glad the port is done but boo to not being listened to. I would want to be sedated as well and would also feel cross if this wasn't heard... But it's done now and hopefully will make the rest of chemo a bit easier. At least it will get checked tomorrow when you go for chemo (have you had the go ahead on your bloods?). But the fortnightly treatments seem gruelling to me. What are you going to next, sorry, I've forgotten? Give yourself a very gentle day today - these procedures are exhausting, aren't they?
@Mumboo I'm not on Facebook, but can really see the advantage of being able to do a post and that can be seen by lots of people in one go. And that's great that you've been for a walk and talk. I'm not managing them at the moment, just don't feel sociable. I have quite long chats with my neighbour on her doorstep sometimes, that's about enough for me! But I've bought some walking socks as gifts for some of my walking friends, so am sending those out, so they don't forget me! xx
Thanks for website info @leianajones. Had a quick look & seems really good. Will have a proper browse later after Home-schooling.
I've just been for another walk & talk on the beach with a friend. So good to get out & see people, if only one at a time & with no hugs! Forgot the ball for the dog, but at least i had my wig keeping me warm! Frost on the beach!!
Good luck with your antibiotics @Lewy2803. Really hope you feel better. I've not suffered with swollen ankles, not yet anyway!! I too am having another round of treatment next week (Thursday for me). That'll be the last of the 3 FEC. Onto 3 rounds of Docetaxol after that.
And that was an excellent idea about getting gatekeepers on a whatsapp group to keep people updated. My situation maybe different to others because i'm regularly seen on the school runs & know a lot of people via the kids. I'm on Facebook but don't often post anything, but i decided to make a post just before i had my surgery in Oct. It was a summary of my diagnosis & treatment plan. The aim was to do a group message to all those people that i see, but not necessarily want to constantly chat to, if you know what i mean! The response was overwhelming. I really didn't expect the love & support & amazing offers of help. I had people taking my kids out for a play, bringing meals for after surgery, dropping books round. But most importantly, i knew everyone knew & i didn't have to send a million messages or have to explain things. My kids were comfortable with everyone knowing & i believed it gave them the freedom to talk with their friends or teachers , if they wanted to. I have since done a couple more posts, but just when something substantial to tell, like chemo starting, etc.
It's a very individual choice. No right or wrong. It is very physically tiring telling people, because it's just not nice giving this kind of news. I was exhausted at the beginning! Don't underestimate the tiredness of the emotions.
Whatever you choose, it's your decision. 😘 xx
hello everyone!!! so much to catch up on...@gerbel I nearly fell off my seat with laughter with your rugby 'rules' help 😂😂😂 thank you for the giggle, I needed it like you wouldn't believe....and your tips are super helpful, 😂 I'll be a keeping a (very very) close eye for sure. 😂
we all seem to be here there and everywhere this week don't we... rallying and feeling brighter (woo-hoo!!!! @donkeywoman) and not feeling so good, poor sleep, ill, hair loss, super spaced out @Lewy2803 @Mumboo @Gerbel ~ I'm so sorry to hear this 😢😢😢 what we're going thru really is extremely testing isn't it... we'll get thru it! but crikey, it's hard... @Lewy2803 I'm so sorry you're still having bladder problems, I had the same, if it's an infection, the antibiotics should work and quickly...I'm surprised the Onco said its not the chemo tho... I was turn about, they thought mine was an infection first, then decided it was the. chemo... I do hope clears soon, it's super miserable isn't it.
@Mumboo would you consider something to help you sleep? herbal something? I take all sorts, just can't cope... but actually, they haven't been working, and I really struggle on four hours... Valerian is good, kalms, phenergen is a very drowsy inducing antihistamine...
happy happy Happy Birthday @leianajones I'm so glad you had j lovely day, no phone, bliss!!! cake, bliss!!!! hope Bf spoilt you rotten and. despite everything you had a gorgeous day.🍰🍰🍰🍰🍰🍰
and thanks everyone for.port support and thoughts. 💞💞💞 it's done, but sore now, and although they sedated me a little during, it wasn't loads so I feel quite cross. I didn't want to be aware of what was going on and was...you know you can feel so out of control during this whole bc thing... and when you ask for control and it's just negated by Drs without your permission... anyway, I digress... port done... but it's sore and I can feel it but think that's just the. soreness? ... @leianajones thanks for saying I'll get use to it... I didn't turn my neck when they did the dressing, top tip 😍 they had horrible problems taking blood yesterday, my veins have hardened. so I'm glad to have it, just hope it gets easier, I'm sure it will! and my grump at Drs diminishes too...
also welcome to our little her2 club ~ how are you feeling about it? I read a lot of science when first diagnosed, the treatments are vast, really work and prognosis is now largely the same as for more straightforward Er positive cancers... it's just long...that we know already hey...
got EC 4 tomorrow... can't believe got to do this all again, not recovered from EC 3 yet... the Onco said yesterday that the next lot is the nice chemo... I'm seriously holding her to that!!!!
I've missed out lots of your news guys, as can only see. one message when replying...will be back later with more ramblings I'm sure, and do so. so hope the days is gentle to you all... and donkeys. and. hens ❤❤❤ Xx
How lovely to see the sun - I've not been out yet, but just watching it from the house is a lift...
@Mumboo - thanks for the tip re the wig - no, I didn't have a cap underneath, will see if I can get one from somewhere. Sorry to hear your sleep is up the spout, not great when you have schooling/childcare to manage in the day. But great that you got out on the dunes, to run the energy off dog and children!
@Lewy2803 We have a badly behaved but calming, rescue staffy/labrador cross. He's been a nightmare (agressive with dogs, sometimes with people, ridiculously loving at other times) but much easier now we have some land and can keep him away from strangers (humand and canine!). And mother in law, who lives here has a 2 year old working cocker. I love collies, but because I generally stick to rescue dogs, am not keen on a rescued collie - we can't do another dog with behavioural issues! I'm thinking of trying to get a failed guide dog next time. Friends have had them and they are have been delighted - you get a one year old (can't be doing puppies) who has has been well trained, but is probably a bit too giddy, or strong or something. But not til this one has moved to the big kennel above the sky. In spite of everything, I'm very fond of him!
@leianajones thanks for the tip about the website, will definitely have a look. I don't do make up, but love a good bit of face cream. And any tips to look a bit less... odd, will help! Re friends - I definitely struggled with this. I know a lot of people because of moving a lot, having a lot of different jobs etc. But a small family (just a brother and sister, apart from all my husband's lot). I know what you mean about having to console folk, remind them that I'm not intending to die etc.. And I laughed out loud at 'insert random cure with lemons'! I'm not a fan of talking on the phone, I like face to face really. So I literally only rang my sister and brother and told other people on WhatsApp. It seemed a bit mean in some ways, especially I was clear that I didn't want people to call me. I thought of telling just a few people (my sister had breast cancer a few years ago and hardly told anyone- but she had a lumpectomy and radiotherapy, no chemo, so didn't need much time off work etc). It's just not me to stay quiet! So most of my friends know, just a few who I think I will tell about it when I see them, which is likely not to be for months. Initially I was overwhelmed with the messages, cards, gifts etc. Felt ungrateful, but really wanted them to stop! But it has settled now and I just stay in close touch with close friends, then a few updates to whatsapp groups. I do really enjoy the groups where we are chatting about other stuff and the BC just isn't mentioned. @Lewy2803 your way sounds really organised and sensible. I don't have that many friends who know each other, so can't do the tree thing very easily. I think the big thing I've learned is that I need to be selfish and do what works for me...
@Belinda_F - how are you? Bit wiped out I'm thinking - hope all okay.
@FlorrieBee - hope your day is going well?
I'm hoping to enjoy this week, before next chemo (a week tomorrow) - it will be easier once it is not so cold. I definitely agree that the cold gets to me much more than it used to. Hope everyone can find something to enjoy xx
Hi everyone 😍
I’ve done my best to catch up on all the messages – so sorry if I’ve forgotten anyone! Seem to be a bit perkier today. 🤺 I’m off to the chemist to collect a new antibiotic for the bladder. Fingers crossed it works. Have swollen ankles today … anyone else had that? Next week full of the pre treatment appointments – PICC flush, bloods, covid test and oncologist. Who else having treatment next week?
@leianajones Thanks for the headsup about the website, I’ll definitely take a look. Regarding letting people know about the diagnosis it is really hard. My husband persuaded me it was better to let everyone know for the simple reason to avoid Chinese whispers and getting side swiped by random messages. I set up a what’s app group with gatekeepers who are my closest most trusted friends and then gave them a list of people to contact on my behalf. Laying down the ground rules. Now whenever I have an update ie like after my op, myself or my husband post on the WhatsApp group and let the gate keepers do their work! You still get the odd message but its more manageable. Good luck with your treatment tomorrow.
@Mumboo I went for a 40 min walk yesterday and it knackered me for the rest of the day. Mind it was so cold, it probably took all my energy up trying to keep warm. I sleep in a bamboo silk cap to try and protect my hair and I also have a silk pillowcase.
@donkeywoman so great about the covid jab. I was offered one for today but oncologist said better to have it next week just before the treatment as I will be stronger. Tried to book and there’s nothing available!!! Arghhhh !!!! Yes I am cold capping. I have very thick wavy hair and it is only shedding in one place at the moment so perhaps where the cap didn’t quite touch the scalp properly. Anyway, the BCN is booking a wig consultation for me. Glad you got out yesterday. What dogs do you have? I have two collies, my youngster is from a farm in Durham so she’s a northerner!!
@Gelbel you poor thing you have had such a tough time, hopefully they can tweak the drugs for next time, that’s what they are doing for me.
@Pesto I love reflexology … that’s so cool that you have been offered this. I think you should take anything they offer! The whole eating thing is so weird. I feel hungry and thirsty but then cant face anything. I’ve been drinking loads of milk as its about the only thing that doesn’t taste metallic. That and rice pudding have kept me going.
@FlorrieBee – how are your mouth sores. I’ve been really lucky and not suffered with that yet.
@Belinda_F how are you feeling – still low? I’ve really felt down in the dumps but a walk in the sunshine yesterday helped a lot.
My husband keeps saying, hopefully we will get away later in the year but I’m just being cagey as I have another op after the chemo and the Herceptin for a year, who knows when we will be able to get away and then there’s the issue of travel insurance. I like the idea but just trying to be practical. TBH a cottage in the countryside that we can take the dogs to sounds good, just for a change of scenery.
Loads of love everyone xxx
@Mumboo I'm so sorry you're not sleeping well, nothing worse than broken sleep. I'm can't lie reading everything you're all saying I'm worried my sleep is on the way out. I have been sleeping really well, averaging 10 hours a night and a nap or two in the day! It's very unlike me as I've not a good sleeper before cancer so looking may it last.
@Belinda I was thinking about you all day, how you're doing well xx
Not sure if you've seen it but there is a new website just been launched called the C List, it's got a list of cancer friendly products for during chemo. They have make up, skin care all sorts. They also have done helpful videos about tying head scarfs and talking to kids about cancer. The girl that set it up is a BC survivor too so it's all first hand. She's also a producer on the Lorainne Show so very nicely done. There's no money made but what they do get from kick backs they pool and treat one breast cancer patient to something special, to keep it in the community. Such a great site, I've ordered a tinted moisturiser and a mascara for now. Then fully intend to buy Lola's lashes for when the eye lashes go. It'll feel so nice to be able to look my old self with a bit of war paint on in this battle.
I was wondering, how public have you ladies been with your diagnosis? I can't face telling people individually, I feel like I'm reliving being told over and over again - and truthfully I end up counselling them through how I'm going to be ok, then listening to a tenuous story about how someone they knew had cancer and *insert random fact about lemons*. I know it's well intentioned and I know people just aren't really sure what to say but it's exhausting emotionally so I've found that I'm not telling people unless it's going to directly impact them, out side of my inner circle obviously. Just wondered if anyone else was navigating it any better?
Hope those of you having treatment today go through it well. I'm in for my bloods, ultrasound and a chat with the surgeon today before treatment tomorrow and planning for a big shop to hunker down for what EC2 has to throw at me tomorrow. It feels like an anti Christmas, I'm counting down, preparing and planning for 9am tomorrow.
Big love xx