Well I am all packed, feeling a tad better and temp has come down a bit but still higher than usual. Just rang the chemo helpline and no answer. Will try them again in 10.... they usually pick straight up when it isn't urgent. Typical
Oh Sarah, I am sorry to read this....we can't have a " man down" please let us know how it goes??? Xxxx
Not well at all here and I can't get my temp down so am waiting for my other half to get here, help me get dressed, and deliver me to a and e
I woke up with a funny mouth/ throat.
I have had herbal tea, lemon tea and coffee and it is feeling better.
Edinbird the headband looks fine, nice and bright. Did you mention taste buds and mamite yesterday?. If it was you, have you tried twiglets? Congratulations to Norwich on getting back into the Premiership. Me and my son, Chris, are Saints fans and are glad they managed to stay up this season. My hubby prefers rugby union.
Trixielady sorry to hear you're still having problems with chemo and stuff.Not sure what some of your abbreviations meant but I hope they manage to sort you out.
Deano thanks for dropping in with your update. 2 more rounds and 6 weeks doesn't sound so bad. I only had 4 rounds of FEC, and I can honestly say knowing that I haven't got chemo next Friday is brilliant. The surgery I've out put of my mind, hence our little trip to France on the 8th May. I've got my final ultra- sound scan on Monday. I know Gremlim has shrunk since my last one but don't know by how much.
MJB and Rosina your meals out sounded yummy. Your photo Rosina is lovely and I enjoy reading your calm cards.
On the car insurance just continue as normal. I don't drive during the first week after chemo, if I can't walk in a straight line then I've got no chance with driving. In fact, at the moment I'll only drive when the roads are quiet, between 10:00 and 16:00 (chemo brain). Outside those times and Paul has to drive me to hospital appointments.
Right really must get up now. Oh while I remember I've just had my 4th night of a relatively good night's sleep🛌🏾😊
Will catch up later. Have a good day Hope those of you suffering with T side effects get better soon xxxx
Morning girls. Hope you are all ok. Rosina glad you managed to get some walking in. Sonia I had everything after my last FEC really bad sore throat, coated tongue etc. I thought I was getting tonsillitis as that is my weakness but I took paracetomol and it calmed down after a couple of days but maybe you should check with your unit. I also gargled with salt water or maybe you should use that mouthwash to gargle? I also had really sore arm where I had anc and also my operated boob really hurt as well as my legs and back etc. And this is all before I have the T!
Edinbird Norwich in the Premier league! Hope Sarah and Sar and everyone ok. Marilyn, Susie B and Nettie are you ok.
Sonia my mouth/throat are sore but not too bad... it’s sore round my back teeth which is what I had first FEC so I’m using the bicarb more than I have been.
Legs are still achy this morning. My bottom is killing me!!! I haven’t been constipated since first FEC either but I just think I’ve been unlucky with a pile that’s flared up and it’s not healing due to the treatment and I’m really suffering. Not sure what I can do about it other than keep treating it with the cream I have.
Didn’t sleep much due to that rather than anything else. Got very hot in bed watching the football (temp was 37.1 and I panic a bit if it goes over 37) but it came back down when I went into the other room to sleep. Norwich prompted to the Premiership whoop whoop! Fortunately I have an old photo of me when we were last promoted four years ago that I could put up on Facebook so no one is any the wiser as to how much of a mess I look this time!
Strangely last night it took 3 goes to do my injection... first two sites chosen were so painful and one drew blood! Poor husband is trying to do it and whether it’s because I’m so achy or tired or what it just killed and I was in tears. Eventually went in third go and still not pleasant. The area I was grabbing flab didn’t seem very grabbable, it seemed firmer than normal? My body’s response to the discomfort of aching maybe? Anyone else had this? Wish I knew why I have to have 10 when no one else does but at least I’m halfway through this round now.
Hoping I feel better getting up in a moment but sitting down seems to make the aches worse so I’m not feeling in a rush to do this.
Has anyone else got a really sore throat? It feels like the start of Tonsillitis, but not sure if it’s just one of these side affects. My tongue is Disgusting, all white and o can’t taste a thing.
How is everyone?
Thankfully I had a MUCH better night’s sleep. The muscle aches have subsided too ( interesting how they moved around my body from the back of my right knee, to shoulder blades, back of neck, under my operated arm pit) as Implausible said it did make me feel for those who have to cope with chronic pain. I did go for a walk though ( and I did have to stop and sit down on a bench at half way point) but I wanted my 10,000 steps. I did feel much better for getting fresh air. That was my mantra : ‘fresh air in, stale air out’ as I took each step . Couldn’t concentrate on anything else as the muscle grip and release travelled around my body.
Anyway , here is today’s Calm message
Implausable, my insurance company said as long as dr said I was fit to drive, that’s all they needed. We asked after my operation and explained I would be having chemo and radio.
I don’t think we need to declare our treatment on car insurance I’m sure I looked through my policy when this all started...
Yes it’s my hair I haven’t tried the wig on myself once. The hairband looks more like a sleep mask tbh but it covers up the thin bits. Feeling a bit rough again was a lot better out in the garden under a blanket but then as soon as I came inside and sat down my legs have ached again and dinner just wasn’t good. Norwich are on soon and might get promoted and I just want to go to bed... think we can hook the laptop up to the TV upstairs so probably watch it up there.
Hoping to wake up better tomorrow 🤞
just to update you on my T I had yesterday - it was a lot quicker than Fec only there 1 hour 15 mins - I’ve lost my taste buds today and have a hot facial flush otherwise I’m going ok and feel much better than Fec. I got backache this morning but I stretched this out and it has gone as I do suffer with back ache anyway and go s physio exercise which always work for me
ill update in a few days but feeling flushed makes me look healthy - the little things - I started my constipation capsules day before and this has been amazing Bowles working more normal why did I wait till day after before
hope you ladies just get through your weeks - 2 more to do and 6 wks left we can do this xx
Implausible, yeah i didn't drive but didn't cross my mind to tell the insurance company but now my renewal is due I'm just wondering if the price is going to shoot up?? Xx
I called mine before surgery. When I had my hysterectomy I wasnt to drive for 6 weeks or earlier if doc signed off so I thought it would be something similar. For the lumpectomy they said as soon as doc okayed it. I think I had a couple of weeks off driving until I felt ok again.
They didn't seem to have a problem with driving during chemo.
Just a quick question what are you doing about car insurance if you are drivers ???? Mine is due for renewal and it hadn't even crossed my mind since diagnosis with all the worry & stress until my son mentioned it xx
Sorry some of you are having lots of side effects with the T it all sounds awful. I feel as if I have run away from it all and hurried my head in the sand. Oh whatever we do we barry worry. I am trying to get into mindfulness but not getting very far with it yet. Rosina I love your daily quotes. Edinbird your bandana looks lovely it that still all your own hair?? Trixielady I hope they can sort you out, being breathless must be really frightening. Is it worse if you lie down, do you need to sleep propped up or is it only on exertion? Nettienoo you see quite chirpy this time shhhhh🤫🤫.
We have been out for lunch to a Beefeater I had fish and chips (great for Slimming World) and he had gammon + two soda and lime all for £12 and it was nice too. I will never loose this stone at this rate. But then I am not big anyway, but would like to loose it so I will be good tomorrow 😃.
Plenty of sleep therapy for me today.
My brother actually enjoyed this too as he had been rushing around central London since Tuesday!
I am feeling quite wiped out.
However with a 1 hours kip before and
after my excursion to the pub ( I drove as , my brother is on a fly by business trip arrived yesterday back out via Heathrow tomorrow) and a lunch of chicken and mushrooms pie with mash and veggies it hasn’t been too bad.
Stepwise not even 800 steps so my worst day so far.
Oh Trixielady I didn't realise you were going through so much hassle still
I don't understand all the initials for that scan you mentioned, but whatever scan it is I hope it gives you some answers!
The WBC injections really do seem to cause more trouble than they are worth for some people
Hi, on the hair front I'm just going to get my hairdresser to give what's left regular trims and let the new hair catch up. I've already decided to wear wigs and/or bandanas until I can colour my hair and get back to looking like the real me. As I normally sport a short style wearing a wig won't be much of a problem. The approaching badger look will be interesting though, especially up against my tired panda eyes🐼☹.
Afternoon ladies , was going to name you all but it sounded like a song
Its Barry rotten all these side effects but at least we're kind of moving forward.
My chemo had been stopped again for this coming Monday and they are thinking about reducing it again or maybe even just the herceptin my mind is all over the place, still really breathless after walking for short distances, just received an appointment for 1st May for NM. MPS Tf rest gated scan hopefully that will show whats up with me because the thought of stopping chemo is scary xx Good luck lovely ladies with side effects, the wbc injections not the actual injection the pain on the 4th 5th was what i couldn't bare that unfortunately changed my regime from T to paclitaxel (Taxol) and that actually put me in hospital so maybe i should have said nothing about the pains but i thought they were unbearable xx
Thanks for the much needed cuddles, Nettienoo. I finished my steroids yesterday and injections are only for 2 more days so hopefully things will settle.
Pastamissus, thanks for the heads up. Always good to hear from those who have already been through this. You've given me hope 😊
Susie, thanks for the tips re injections. Will try this evening and hope for less/no pain. The nurse was so busy, she didn't really go into detail so I appreciate your advice. Sorry your Mum's email has upset you 🙁 Sounds like retail therapy was the antidote to that.
Sarah, sorry to hear you're experiencing rubbish side effects. Don't suffer, take some painkillers.
Edinbird, that headband looks gorgeous 😍
I’m with you Sarah. It doesn’t hurt I’m not in pain but it’s blooming uncomfortable. Now I’m out of bed my legs hurt less but I feel wobbly. We are going to wobble to the shops in a bit.
I ordered a random headband and it’s come and is clearly for novelty dress up! But it’s actually ok for round the house. I ordered six Hygge Bands as an offer came up on my Facebook so I’ll see what they are like. Six for £23 so not bad value if they’re ok.
Thanks for the encouragement Pastasmissus.
My logic with all this stuff is that, as long as I know it is temporary, I can put up with it.
I'm not sure what day I am on now, never sure if the actual chemo day is day zero or day 1. But I had my first T on Tuesday and today is Saturday (so this must be either day 4 or day 5) and it is the first day I have felt like pants, so not too bad I guess.
Even the soles of my feet ache. And they haven't even done anything today. All these peculiar new sensations!
I have got painkillers at the ready but haven't taken any yet. It is more uncomfortable achiness and restlessness than actual pain. Small of my back down to my toes.
At least my top end seems ok. Apart from feeling pretty spaced out....
The gift that keeps on giving
Thanks for dropping in Pastasmissus. I am due my first T on Tuesday and seriously am not looking forward to it. Want to stock up on painkillers. Can you take paracetomol and ibruprofen. Thinking of all the T girls. Hope everyone is ok xx
Aw thanks Nettie 🤗 husband came in and tried to cuddle up and I was just don’t touch me! I’ve still got 6 injections to go... this isn’t injections ache. That was in my back and pelvis last time so that’s still to come, yay
The steroids were only three days worth and so finished on Tuesday what with having to take a day ahead. So I’m no longer sweating everywhere but the aches and constant toilet trips are disturbing any sleep I can get.
Need to get up and take my heart pills... forget the sickness ones I’ve still not felt sick. I know moving about will help but I’m not looking forward to gingerly perching on the sofa with what feels like a rod up my backside, even creeping down the stairs is particularly uncomfortable. Oh, and I still can’t eat cheese!
I found the T pains were days 4-8. They were not as bad for cycle 5, and had none cycle 6, just overwhelming tiredness. Whether I'd got used to it, or whether the shiatsu I had before 5 and 6 made a difference, who can say?
Take plenty of painkillers! It's the relentless aspect of it that got me down, but it WILL stop in a few days.
So sorry to hear that some of you are encountering such painful side effects from T but I am grateful for your honesty. At least I've now got a pretty good idea of what to expect when I go onto TC.
Seaside Sar you may find the filly watsit injection more tolerable if you take the syringe out of the fridge half an hour before you inject. Also try and inject with an angle of 45 degrees and don't pinch the skin too tightly. To be honest, it wasn't until my 4th round that we managed a 100% record of pain free injections💉💉💉💉💉☹ Ouch!
Nettienoo the progress photos of hair regrowth is a great idea. Yours may show up better than mine an I do have the odd sparce hair growth within my bald patches. As for the Valtos Beach we love it and yes little Granny is brilliant. You should see her dance on Greek nights. It's funny as until around the year 2000 we could never understand why people would choose to return to the same place year after year. We found a place on Lesbos which is similar to the Valtos but on a much smaller scale. Brilliant for Chris between the ages of 8 and 16, then we discovered the Valtos when he was 18, that was the last beach holiday we've had with Chris, but he has come to Iceland with us twice since then.
I had a pretty good day yesterday until Mother sent an e-mail☹😠😠. Despite telling her several times I didn't want to think or talk about surgery dates I still got the "How are you after your 4th round of chemo and when is your operation?" Aaaaaarrrrggggghhhhhh scream! Needless to say I replied but didn't answer that question especially as at the moment the reply would be 'I don't know'. Anyway I have no intention of telling her. Her reaction one evening when she thought, wrongly, that I was having cataract surgery the following day was enough to have the operations done without telling her. Anyway back to yesterday. I had a lovely chat with my trials nurse and did a bit of retail therapy after my hospital visit. M&S had some tee shirts they were selling on behalf of a Breast Cancer charity so one dropped into my basket.along with a couple of other tee shirts I wanted.
Better get up now. Speak to you all later. Hope it's not too windy where you are.❤❤❤❤
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 !