I am sorry I did not see your earlier post. Gosh I hope you will be better soon. Do they think it's a reaction to the Herceptin?
Seaside Sar, I cold capped using a blue theatre cap for my 3rd and 4th chemo sessions as my hair is extremely thin on top - standard practice - and recommended by cold cap company. Best the nurse brushes up on her knowledge.
Seaside get the nurse to ring the cold cap company for advice. She is wrong! This is what happened to my friend and she got on to Paxman but it was then too late as all her hair had fallen out.
Oh Marlyn, souns like you're having a right Barry day!
Mine isn't great either. Been here since 10am only to find my drugs weren't ready. Just got the Herceptin started and cold cap on at 1pm. I'm in for a long day. Also, the nurse reckons my hair is getting too thin on top so I may not be able to cold cap next time. I mentioned wearing a theatre cap but she hadn't heard of that before. Hopefully I'll have a different nurse next time.
Sending big hugs to all you lovely ladies.
Still here.....not only is my blood pressure not coming down my temp is now reading 37.9 !!! Wtf??? Iv been ok throughout chemo.....give me 4 weeks and look what happens.....hope to god I'm not staying in!!! Boo hoo xx
My sister used to be in the Rock Choir MBJ. She absolutely loved it until they changed their choir leader and the times and she just couldnt settle. Well my hair has survived another wash. It is still shedding but it is still there albeit a bit thinner. A memory just came up on Facebook and it was 6 years ago when I bought my campervan. I absolutely loved it but had to sell it when my mum developed dementia and we really couldnt go away and leave her and now I have car phobic dogs so wouldnt be able to do that again but at least I did it!
I am sorry you feel rubbish Trixi and Edinbird, I hope you both have a better day today. Living in Wales we all get free prescriptions and I don't think we realize how lucky we are sometimes. Although I do think that the majority of you have had better care during chemo than me, so maybe the prescription monies could be spent better in Wales who knows?
Off to Rock Choir tonight, don't know if I shared some really exciting news girls. But on Monday we are recording a video for the group MADNESS for their tour. They are playing in Wales in May exciting stuff hey.
Trixlelady, sending you bug hugs, but like you say it helps when the weather is better.
Marliyn, fingers cross your day gets better xx
Susie, I feel like a webble now
Daisydi, I feel your pin with the scabs, I have a lovely few around my neck, im hoping i fair better this time, although I am sporting very rosey cheeks again today.
Pastasmissus, you have made me feel a bit better with the weight gain, It goes on so quickly then take so long to come off, but hey ho with everthing else were going through.
Implausible, you made me smile when you mentionedt he smiley receptionist., they are so joyful.
Well im helping my weight loss NOT today as my daughter is taking em out to lunch
Getting worried about the weight gain caused by steroids whilst on T. I'm only 5ft and currently around 8st 10, well 9st since holiday! I could end up looking like one of those weebles, I think that's what the kids toy was called, that don't fall down😭😭
Well, what a palaver today is turning into. Rads didn't go ahead due to my elbow sticking out?! This is despite being measured and tattooed last week....so got it all to do again at some point....
sat here in chemo unit , had herceptin injection.....blood pressure high and temp high....they are checking me every 15 mins.....gonna be a loooooong day!
To all all my beautiful sisters.....thinking of you....those who have had chemo and those who have it coming up....I love you all xxxx
Morning all yes a friend of mine told me about the exemption certificate otherwise I wouldnt have known. We just got the form from the pharmacy at the GPs filled it in and sent it off and I got a little card in the post. It has saved me an absolute fortune over the last few months with all the lotions and potions I have had to get, even mouthwashes. I am feeling almost human today better make the most of the next few days. I am about to wash my hair. I had a major panic yesterday as my head was really hurting and I was expecting to wake up with no hair this morning as T has thrown everything else at me but it is still there,for now. I got a windscreen chip the other day coming home from the hospital and I may have the energy to sort it out today. My spots and scabs have stopped itching and seem to be calming down. Hope everyone has a decent day x
Trixielady, sending you a cuddle. We are all here with you however long it takes. Lots of love. Xxx
Thank you Pastasmissus. I'll do that today.
I was on track to put on 3 stone too. Exactly half a stone up over each of my first three cycles. Very disapproving looks from the onco nurses at each weigh in!
But I tried harder on this latest cycle and managed to stay the same. Hoping to do the same over this one and #6. Fingers crossed.
The remaining one and a half stone I should be able to shift once treatment is over and I can get back to the gym and the pool. I hope!
I put on 3 stone with chemo :-(
Re exemption from prescriptions - you don't need a doctors appointment, go to the reception and ask for a form. Fill in your bit, then they will get the doctor to fill in their bit and send it off
Good to hear from you Trixielady but sorry you are struggling
It's a case of gritting your teeth, and waiting it out, I guess.
I wonder how many oncologists have actually gone through chemo themselves.... they read all the side effects from a list but I bet they can't really visualise just how rotten it actually feels....
But like I said before, here's hoping we all come out stronger the other side.... I really believe we will x
I'm much the same as you all putting on weight, having more bad days than good ones trying not to fixate but when the weather is so beautiful and finding it difficult to make use of it, concentration not good. Still another 6 chemos to go xx
Thinking about you xxx
Oh that's not so bad. I will pop in and see if I can get a form from the oh so helpful and smiley receptionist
You just need to pick up a form I think or maybe you can apply online. Then a doc or nurse signs and sends it off for you. Well that’s how it works at mine. I’m pretty sure you won’t need an appointment. They will have info about diagnosis that’s all they need. Xx
PS same here too with reading. My books and comics are piling up as the chemo makes my eyes fuzzy
Am listening to podcasts more and also reading on the kindle app on my iPad as I can enlarge that to proper old lady giant type
I applied and have the free prescription charge, it’s saved me a fortune, as I’ve had to get bits from the gp, that have been all all caused by cancer but you get all your prescription free. I’m now getting Eczema shower gel bath stuff and cream to keep my skin from drying out before radiotherapy.
🍀good luck seaside and Marilyn,
sorry Edinbird that your feeling so cra*py today, your a few days ahead of me, so have it all to come. I’m more for warned this time on what to expect so have arranged lifts for the kids all weekend and other half is away.
Trixielady lady hope your okay, haven’t heard much from you.
Nettinoo and MJB. I love audiobooks, they’ve been a god send as haven’t had the concentration level either.
Well I think I’m the winner or rather unluckiest in the weight gain. I’ve put on just over 2 stone, was speaking to nurse yesterday and she said there’s not a lot you can do about it, just don’t worry at this stage( easier said than done) hoping some of it is the swelling in my legs too. I can pray.
Its been lovely to hear all the good news and lovely pictures over the last few days, this Barry won’t knock us ladies down. It will be so lovely to see you all when we get to meet up.
It really does feel like light at the end of the tunnel I know there’s radiotherapy, then hormone and I’ll have my
2 surgeries after that but feel like it will all be a breeze after chemo 💕💕
Hole you all have a lovely day ladies
So I get it from my GP? This exemption thing?
I'd better start the ordeal of attempting to get a non urgent appointment then. 4 to 5 weeks wait at least..... sigh..... I hate trying to get in there!
Glad to know I'm not alone in the inability to concentrate on reading books, I even have problems reading all the posts sometimes☹. Like you, my books are just sat neglected on our book shelf. I only hope my son and husband don't take it personally and think I don't like them.
Sarah, flipping hec girl get yourself sorted with an nhs exemption card. Docs will sort. I had one from 5 years ago when I had my first bc op (felt a bit of a fraud as I only had a lumpectomy and no further treatment the breast care team were adamant though). It was just about to run out when bc returned so the bc nurses sorted out a renewal and it just turned up in the post. I’ve been very glad of it as am now on 2 regular meds from docs and sometimes other things during chemo as sometimes I can’t get to the hospital for a prescription. Who knows what prescriptions we might need in the future? We’ve all earned it and been taxed for it so don’t feel guilty. X
Edinbird, I hope you managed to get car in, rest well now sweetie. Xx
It's great that so many of us now are either finished chemo or approaching the last hurdle. Lots of us with only 1 left to go already or will have after this week. Go us!!!
Feels nice to be on the homeward stretch, of this stage anyway. And this has to be the worst bit, right??? My cousin assures me that rads are a total doddle after chemo, and I'm not worried about the last bit of surgery.
Hormone treatment for 10 years is a little off putting just because 10 years sounds like a lot! But still not as **bleep** as chemo
(Oops I got bleeped )
This ordeal will make us all stronger simply because we can spend the rest of our lives saying "I can get through anything. Because it's not as **bleep** as chemo"
A completely (ish) unrelated question. Have any of you been given or applied for a prescription charge exemption certificate?
I very vaguely recollect someone mentioning them before, but I didn't bother pursuing it because I thought it only related to cancer specific medicines (the steroids, anti sickness meds etc.), and my hospital just hands me a goody bag with all those in at each chemo session, so I don't have to pick them up from the pharmacy or pay for them....
But the lady in the next bed to me said this week that she thinks it covers ALL prescriptions, and lasts for 5 years with the option to extend it to 10.... I currently pay £9 (or however much it is now after the latest price hike) every 28 days prescription charge for my regular high blood pressure pills. So over 5 /10 years that could save me a pretty penny! These are nowt to do with the cancer though.
Does anyone know if these would be covered and how I go about getting one of the exemption certificates if so?
(NB I would feel much more guilty about depriving the NHS of that £9 a month if they hadn't messed me about so much 3 weeks ago!!! I still haven't recovered from those 9.5 hours sitting in pain in the world's most uncomfortable waiting room chair attached to a drip I didn't even need! )
Good luck today Seaside and Marlyn!
Morning guys xx
Again so much has gone on... so glad that Veronica is done with chemo finally and I hope that the job doors swing open now Sandra
So many lovely photos and it seems like plenty of treatment going on to kick Barry squarely up the behind!
I had a busy day yesterday which culminated in a nice relax on besties roof in the sun but kinda went downhill from there...
Last night I barely slept with a really sore toe and nail, big old bruise from climbing in the window funny, a sore throat that has developed into a snot fest and a whole new load of night sweats! Let’s just say I feel rough but I need to get up right now and take the car to the garage for MOT 😕 thankfully it’s at the end of the road but I just want to stay in bed. I even took paracetamol in the night and I never touched it once through T ache last cycle. That’s how much I wanted to sleep and ladies, it hardly worked at all.
So might not hear much from me today if I can snooze on the sofa, and hopefully my old banger passes it’s test... not sure which is more clapped out tbh 😬
Ps. Weightwise during early chemo days my weight dropped to 8 st 11. My normal healthy weight is about 9st 4/9st 5 and I looked awful. I’m now 9st 12 so have a half stone to drop but I’m not bothering too much at the moment as fighting a losing battle with the steroids. I’m just trying to stop snacking on rubbish. Never used to before chemo 🙄 x
Marie, Audible is my new best friend. I find it difficult to concentrate on written books for any length of time at the moment. I’m normally such a book worm and have a backlog of books I was given at Christmas that are still sat there waiting to be read....flipping chemo has had so many unexpected effects. Listening to audio books is great, I still get my fix but with less effort. My husband bought me some super duper, noise cancelling, very lightweight Bose headphones for my 60th. Perfect present at this time. Bless him. I listen to meditation, Yoga Nidra type recordings on them too. I’m so glad to hear you are out and about living life again and having fun and have a holiday to look forward to. Lots of love and hugs. Xxx
Well it's good news everywhere it seems. I am so pleased that Veronica can stop her chemo now Sandra you must be so relieved. I hope you find what you both need in Edinburgh.
You are all moving forward at a great pace now with the end of chemo in sight for lots of you. I am so proud of how strong and determine you all are and just wish I could have remained on the same journey as you all.
I have been out and about a lot this week, lunch three times, then tonight a play in our local Am Dram theater. Oh and Slimming World is not going so good girls well what can I expect if I keep on eating out. But I am determined to loose at least 5,lbs before my cruise in June. I will have to as nothing fits.
Barry BC ruins everything, hair, waistline my brain (full of worry crap). Hope to see more lovely garden photos soon. I will spare you mine as it's like a building site. Off to listen to my audio book now. Isn't Amazon great.
Sonia, how could I have forgotten you? Big hugs my darling for no. 5. Well done. You’ve not had things easy at all have you but the end is in sight now? Xxx
Sonia, how could I have forgotten you? Big hugs my darling for no. 5. Well done. You’ve not had things easy at all have you but the end is in sight now. Xxx
Hope all goes good for you girls tomorrow, Marlyn and Seaside. I’ll be thinking of you. Susie, I have serious Wisteria envy, well whole garden envy. I can’t wait to see your cosy place too. It all sounds so wonderful.
Sandra and Veronica, so happy and relieved for you both. I can’t wait to hear how things pan out for you both. You have survived such a traumatic, awful time with each other’s support and love and a new start is just what you both need. Although, like most of us, there is further, treatment/drug regimes planned for the future, I have no doubt that you both will be able to cope well with whatever comes next. Edinburgh is beautiful and inspiring. Happy times coming my loves. Xx
Sandra, that's fantastic news! So relieved for you both I'm doing a little jig induced by steroids so not pretty but well meant nonetheless. Seriously though, things are looking up and I couldn't be happier for you 😊
Sonia, one more to go. Yippee!! Light at the end of the tunnel.
Lovely garden, Susie. Thank you for sharing. I need some inspiration for mine so keep the photos coming.
Good luck for rads tomorrow, Marlyn. I'll be thinking of you.
Rosina, I loved my bike ride. I went along the trimtrail nearby which runs beside a river with ducks. Very peaceful. Had to make the most of it as I will be far too wobbly after my treatment so will be back to short walks instead.
Sleep well if you can, everyone. Or join the early morning wakers and we can have a chat!
sonia28, you must be feeling over the moon that you've only got 1 more chemo session left.
Thanks for the compliments about our garden. Sheer hard work for many years by my hubby have completely transformed the garden from what it was like when we first moved in. We've created several seating areas around the garden so we can follow the shade or sun and have a little rest and quiet contemplation. The area behind the arch with the wisteria is part of our side garden leading to a door to our garage which we have turned into a cosy 'room ' where we sit on summer evenings and have a wood burner going on chillier evenings. I'll post a few more pictures at a later date when more flowers are out and see if I can give you a better idea of the layout..
That's fab news Sandra. What a relief for you and Veronica. Now you can concentrate on a new life and new beginnings. So pleased for you.
Sonia glad that you got number 5 out of the way. Only one more for you. Yippee! Susie your garden and pond look fab. My neighbour cut my grass today and I managed a tiny bit of weeding. Hope all you other girlies are ok. Good luck tomorrow Marilyn. xx
sonia28, you must be feeling over the moon that you've only got 1 more chemo session left.
Thanks for the compliments about our garden. Sheer hard work for many years by my hubby have completely transformed the garden from what it was like when we first moved in. We've created several seating areas around the garden so we can follow the shade or sun and have a little rest and quiet contemplation. I'll post a few more pictures at a later date when more flowers are out and see if I can give you a better idea of the layout.
Hi Sandraindurham and Veronica
Sandra great news! I could almost hear the joy and relief in your voice even though it was put down in writing😊. At least her onc has looked seriously at her case and has obviously weighed up the pros and cons of continuing with chemo. I've seen for myself what 4 rounds can do sucessfully so to go onto 2 other drugs after rads seems to be the sensible decision. So, it's off to Edinburgh and a new life for you both. As for staying with the forum I think we'd all be pretty miffed if you decided to love us and leave us. We're here together through thick and thin, one step at a time, and we're all going to finish together. Plus we need to know how things go with the rads, move and everything else and it would be lovely to hear from Veronica. More importantly you need to stay so you'll know what the arrangements are for when we all finally meet. Now have yourselves a little celebration🍸🍹🍰🍨☺xx
« ΟΥΔΕΝ ΚΑΚΟΝ ΑΜΙΓΕΣ ΚΑΛΟΥ»
My Dad knew Ancient Greek (I don’t) just a few classic phrases and this is a very wise one.
Or ‘Yin- Yang’ as my Mum likes to say.
I am very pleased with your news.
I feel like a weight has lifted.
This and Implausible’s description of
Taxoterre as ‘horse tranquiliser’ 😂 has made my day.
Major Hike planned for tomorrow with H1. He has been checking the mileage 🤓.
Hugs to all,
Susie your garden looks very peaceful.
Seasidesar how was your bike ride?
Sonia28 hope all is well with you too.
Marlyn, she did 3 and her onco said that its toxicity had been too much for her, normally, but extra for someone with her health issues, she was due to have her 4th tomorrow, but I has asked her onco to go through V's case and check what could be done.
We had a great and honest conversation and she said that this was a preventative treatment and in V's case, 3 cycles was more than enough!
So, moving forward, and yes, 'here' is my home and you all are my great, great friends!
Sarah and Sonia, thank you so much I am quite relieved and yes, Veronica and Rosina talking will be a blast, Veronica is totally passionate about Classics.
Sarah, from your lips to God's ears, Edinbird has been talking to everyone she knows to see if she can find something there, I am going through the ads constantly and trying to see houses there as-well, but when I see her face whilst speaking about moving, I just know that something has to happen!
Sandra that’s great news 🔔🛎
Susie your garden looks lush.
Well I’m back from session 5, and realised when they gave me my next set of steriods that I didn’t take enough yesterday, chemo brain 🧠, but was still in the wide awake club at 4:30 am then crashed out to be back up at 6:50am. Have taken the correct dose this afternoon so maybe I won’t sleep at all or will crash due to lack of sleep. I went in this morning with bright red roses cheeks, but they have died down now. Also my hands turned purple during the session due to being cold, but I didn’t feel cold, but no one was concerned so all good.
only 1 more to go 🎉🎉🎉
That is wonderful news Sandra!!!!
And of course you must stick around. Like I said to the other ladies who have finished their chemo already, this group is for everyone who STARTED chemo in Feb, it doesn't stipulate when you stop
Hopefully as V starts to recover she might be able to join in herself too. It would be nice to speak to her first hand and I'm sure she and Rosina could talk about the classics till the cows come home
So happy for you both. Next stop Edinburgh!
Oh Sandra.....I couldn't be happier for you right now.....being told you can stop chemo is like winning the lottery! ( well, almost) what a huge weight off your shoulders....did v do the 4 cycles? Oh wow, the next few weeks will do her the world of good....I'm going for my first rad session tomorrow and got tattooed last Thursday, I can tell you it's a doddle....I think after chemo we can do anything! And your not going anywhere missus! We all need each other here.....give v a great bit gentle hug from me? And a cwtch for you too....xxxxxxxx
And a big HELLO to everyone.
I have news
As you know, Veronica has been very ill, she has so many health issues that chemotherapy went deep here!
Since she started, she could not move, up to the point that I could not let her for a moment, day and night.
She suffered hell, she lost all her hair on the very first week of her first cycle and she reached a very dangerous level, both physical and psychological, so her onco reviewed her case quite seriously and today we learned that Veronica does not need any more cycles, she will wait a few weeks and have radio, along with Zoladex for the next 5 years, along with Letrozole.
Veronica's cancer was lobular and according to research Letrozole is better for this type of cancer.
I am over the moon, and now I have to find what she is hoping for: a new life and a new opportunity in Edinburgh!
She has been so depressed and lost, this cancer made her see that she cannot go on with negative things like her PhD in this university and department.
Her passion was always Classics, and I am going to fight really hard to make this happen, to find a way to move to Edinburgh!
Now, if you don't mind, I would like to remain with this forum and share the next steps.
We all started here, it was the crossing of the desert, we have been together, and in many nights I was crying and reading your posts.
I could not be doing this alone without you all, because I can not speak about it with anyone or anywhere.
This is 'my place'!
I hope you don't mind!
Your garden looks lovely Susie!
At least you have come back from holiday to a pretty garden and sunny weather. Could definitely be worse