70481members
370750posts
cancel
Showing results for 
Search instead for 
Did you mean: 

January 2021 Chemo Starters

donkeywoman
Member

Re: January 2021 Chemo Starters

@Belinda_F thanks for your kind words. I think I'm feeling a little bit brighter - managed to watch a bit of TV with hubby and just come back to bed - that's quite good for me! I'm hoping tomorrow will be easier - for all of us. And if it's not, at least there is cricket to watch for most of the day.

Oh, how annoying that you had to argue to have a week off - as if you don't know what is best for your wellbeing. Good for you for standing your ground, hope the oncologist is helpful tomorrow - on the phone or face to face? I do all my appointments on the phone which probably is fine in some ways, but sometimes I think I'd like to eyeball the person. It's tricky isn't it, when you don't agree. I wanted a dose reduction last time but was offered a week off, which I didn't want! I am absolutely sure that if I was on 2 weekly cycles like you, I would be demanding weeks off, as you are just feeling better when it starts again. Let us know how you get on, when you feel like it.

Hope everyone is doing okay this evening - it really is hard when we are in the middle of it all, isn't it. But so lovely that we have this space and it does remind me that it will get better - it really will.... xx

Belinda_F
Member

Re: January 2021 Chemo Starters

oh guys, I'm so sorry so many of you are feeling horrendous today/this week... the strength it takes to get thru this is super woman-like I feel... the endurance and horrendous impact on our well-being... it's awful isn't it, just awful. in these hardest of days, try to remember, it will pass, things will change, we will feel well again... in the next few days... head down, sleep, rest. thinking of you all. 

my trip to hospital fine, it's reduced again. it's changed shape so not so easy to compare measurements, it's flattened which is good, but moving in right direction... a relief. I'm a little grumpy as I'd asked for a week off before next treatment lot and they wanted me to not have a break, so I had to put my foot down, which I find quite stressful... it's only a week, makes no difference to outcome and the world of difference to my mental health but I really don't like having to battle... got enough to deal with. anyway, I've told them that's how it is so... talking to oncologist in morning. 

big big hugs guys, thinking of you all x

 

 

donkeywoman
Member

Re: January 2021 Chemo Starters

Hi all,

@Gelbel that sounds a great consultation all round and well done you on your super positive outlook! @Lewy2803 glad you are feeling a bit better, hope the roses helped. We are allowed to feel fed up, aren't we? I've spent the day going from the sofa to the bed (plus 10 minutes out with the dog), not being able to decide where I am better off. At least the stairs are a bit of exercise! I'm trying to just go with it, no point in fighting at this point. A couple of lovely friends sent me some Jennifer Young products (including scalp balm) which gave me a bit of a lift, at least enough to send them a thank you message..

@Belinda_F hoping your scan went okay - you probably don't get the results yet, do you... 

@FlorrieBee hope your daughter has felt a bit better as the day has gone on. It must be so hard to see them struggle and know that there is only so much you can do to help. But this will pass and she will get back to her friends... 

That's me - one of the donkeys has a scratch on his face - hubby has been describing it to me and I don't even feel any urge to go and look. That is a real sign of how I am feeling... 

Hope everyone's evenings are peaceful xx

Gelbel
Member

Re: January 2021 Chemo Starters

🤞🍀 for your scan @Belinda_F 

@Lewy2803 @donkeywoman @Mumboo so sorry to hear you're still in the dark of the forest hoping to retreat to the safety and peace of a meadow or beach or whatever your happy place is.

You ladies are wonder women supporting your children too - even without the trauma of lockdown etc.

I feel so much happier. I gave myself a kick up the bum when I woke up. Just as well it was before a hairbrush full of hair. 😉 I went to my appointment with make-up on. 11 October was the last time I wore it. My eyelashes are holding up! 

Dunno what I was expecting at my appointment. I think I had visions of someone with a clip board just bombarding me with on a scale of 1-10 for side effects. The nurse practitioner was so lovely - just happy to chat about my chemo experience, asked me a few Qs if I didn't mention a side effect and answer the few questions I had. I find they cover most stuff in their questioning and what's happening next.

My Vitamin D level is low... so's everyone's thank to not going out in the weather we've had. My GPs was meant to prescribe some for me. As they haven't, I'll get some on Friday with cycle 2. I say hurrah because, she expected my C2 side effects to be very similar to C1, which means C3 will be too and that's when the Biphosphanate should start. I hope I'm not too much of an exception. I can do feeling jet lagged to hell for a few days.

She's loving my veins! And I got my bloods done so no hanging around on Friday.

I just missed the hospital's policy of automatically doing covid jabs for new chemo starters ahead of 1st cycle. So they can't do it. However, she got a consultant to come in for a chat and reassurance me that days 8 or 15 will be OK for my jab. They are aware some GPs in the area are only doing vaccines 1 day a week... Murphy's Law says mine is Friday /chemo day. They're telling people to get it done ASAP rather than delaying for 'a better day'.

So, let me get booked in... and wash the slap off. Going to video call test the wig tomorrow - got a couple of interviewing some journalists students for a social media internship. So a safe environment to do it - especially with an uploaded background.

Nearly cricket time!

I hope you enjoy the rest of your days.

Love AnGELa x

Gelbel
Member

Re: January 2021 Chemo Starters

Hi @Lewy2803 

I dream of weeing every couple of hours. For me it's at least once an hour - not at night thank goodness. 

I am getting 2.5-3l down me every day. It tends to be chugging 400ml at a time or I just can't do it. I probably have 1.3-1.7 in (mostly) teas or coffee, which is sipped. Coffee goes straight to my bladder - chemo clinic in a bit so just had decaf today, I'll still be weeing for England. I tell you, if it was an Olympic sport I'm a shoe-in for gold.

Probably me age too. Only signs I've had of menopause is when I gotta go, I gotta go.

I'll save the rest of your prolific posting for any hanging around I have at hospital. And update you later.

Love and hugs

Angela x 

Lewy2803
Member

Re: January 2021 Chemo Starters

I'm doing ok - sorry was feeling sorry for myself this morning. Have had a shower and have written my diary, on the whole everything seems slightly better than last cycle. Like you DW i am rarely constipated so dont want to take anything,  it was Day 7 last cycle that I got the awful trots so really want to avoid that this time. just gonna grit my teeth and get through the next couple of days. @Mumboo hope your day improves, I think we are both on day 6 of cycle 2 arent we?

Thanks everyone else for your kind words, I am taking the anti sickness meds so am doing everything i should be. The metal mouth is unbearable - can only drink milk but surely that's got to be a good drink to have? Try to have good days everyone xx

donkeywoman
Member

Re: January 2021 Chemo Starters

Hello all

@Belinda_F fingers crossed for good news from the scan - and enjoy a bit of time out! @Mumboo so sorry to hear your daughter fed up and struggling, it's so tough for them... 

@Lewy2803 I think I'm feeling similar to you. I'm day 5 and just started the injections. I'm constipated too and feel horrible - light headed, queasy but empty (have managed porridge and a cup a soup). Don't know what to do with myself! I've managed to get dressed, but may need to go back and lie down shortly. Re the constipation - it's so alien to me, that I can't decide whether to take something or not. I've got senna, but did actually go yesterday, so didn't take it overnight... maybe a mistake. I'm sure part of the problem is that I get a bit obsessed! I'm much more prone to going the other way, so this just feels weird. Think I'll go back and lie down for a bit and then try to get outside. Ugh, so boring. But it will pass, for all of us. Just need to get through the next few days and then things WILL get better. 

All the best everyone - hope  your days are as good as they can be. I may make it back on later... xx

FlorrieBee
Member

Re: January 2021 Chemo Starters

Sending positive vibes for a good scan result!

Very difficult for youngsters, I sort of think the younger they are the more resilient but unfortunately for ours, my one finishes his 2 year course in May so it potentially means not returning at all and seeing it through from home. So hard for them.

Good luck today xx

Belinda_F
Member

Re: January 2021 Chemo Starters

that's so hard @FlorrieBee and @Mumboo dealing with the kids going back to school/college, or not... so hard... your girls are being incredibly brave Andrea... do they do lots of online contact with their friends? and I'm so sorry you're friend is moving...  it really is the hard edge of cancer treatment isn't it, dealing with children and impact on them... and how old is your lad @FlorrieBee ? what are your thoughts on college or not? 

I really don't know how it'll cope with lockdown lifting... I'm 2 months down out of 5 months chemo. just finished my EC part so scan today is to look at tumor, see if it's further shrunk... it had last time so I can only hope... then week after next, I think, start on taxol weekly... so weekly tube trips.. might have to think about driving....hoping I'll get worst done before lockdown eases but you know what people are like... Johnson said not governed by dates last night then reeled off myriad dates, so now people will just ease on those regardless.... ho hum... 

guys I'm so sorry many of you are in the thick of horrible... you're in my thoughts. cricket tomorrow!!!! one silver lining x

FlorrieBee
Member

Re: January 2021 Chemo Starters

Thinking of you today, good to get a little ride out in the sun but also best of luck with the scan! Does that mean you are half way through treatment and they are checking on progress? Xx

FlorrieBee
Member

Re: January 2021 Chemo Starters

I'm with you on the sleep thing, I must have got up 5 times in the night for a wee, but I did relax in between and dose back off. It seems everyone must get given different regimes. I get given 5 days of steroids and injections to start the day after chemo so by day 6 I'm all done and pleased to see the back of them! Round two has been better for me Re sickness etc but still taking anti nausea meds if I need to. I absolutely crashed yesterday, just needed to sleep on and off, rubbish, and now have the return of the sore mouth so think I will probably have to put a call in today.

@Lewy2803 have you tried senna tablets? Could help get things moving? I hadn't realised that three of the meds im on from day 1 of chemo all cause constipation, plus codeine for headaches is renowned for it! Next time I will be asking about something preventative!

Do hope I'm up for a little walk later, it is so good to get out when possible. 

Agree with you all, lifting of restrictions is scary, now wondering what to to about our youngest going back to college, or not? 🙈

Hope today brings a better day for you all. I must try and fish out a poem my mum saved for me, it was really lovely and so true, think it's about taking little steps and we'll all get there. I keep reminding myself I am one third done with chemo, next round means half way!

Oh by the way, I've not caught up properly on the hair thing, but I've had very long hair since forever. I couldn't do the cold cap because of headaches and I'm currently sporting a short mix of wisps and bald patches. But for now I just put a pretty cotton headband on and it sort of softens the look. Think I will have to clip it all in the next few days but have got a few beanies and soft cotton headscarves, all inexpensive from Amazon and eBay, so will stick with those. Will be interesting to see if I feel the need for one of my cheap wigs if i actually have to go out for an appointment. They look fine, not sure how comfortable they will be. 

We are stronger than we know and although it doesn't always feel like it, I bet we are all doing a great job of working through this the best we can. Thank goodness it seems most of us are blessed with amazing friends and family 🥰 Hugs to you all xx

Belinda_F
Member

Re: January 2021 Chemo Starters

morning all, @Lewy2803 I feel your pain... I literally needed to wee every half hour it seemed.! massive pain in the night... compounded by horrendously dry horrible tasting mouth so drinking constantly too...those injections have a lot to answer for I say, I HATE them (never say hate, but I really do).... but last day did you say?  I got confused last week and thought I'd reached my last day before I had... I seriously considered just not doing the last one as so desperate to get rid of their toxicity... but then reminded myself not to be so silly... we need them, side effects and all 😢

I'm so sorry you're having a hard time tho, are sickness pills not working? with your tummy, are you taking senna or anything? the ondesetron ~ I had to stop taking due to constipation, it was too much, rather feel sick, almost... but I prepared my bowel anyway... also took docusate. have you got anything? I think the back up can make up feel seriously additionally worse as not clearing out toxins... can hubby get you something to help? it sounds like you're getting out, go you. 

you're all on day 5/6 post treatmenters are you? just remember, it'll lift soon!!! you're nearly there guys!!! 

how are you doing @Mumboo 

@donkeywoman @Florriebee 

@Erin1947 @gelbel ?

@leianajones ~ I hope you're OK? being quiet... working and doing well I hope... not poorly and low. thinking of you x... and when is your next treatment @Pesto ?

I'm off to hospital today for scan. sunny out so that's nice. the warmth on my face will be a rare treat. 

big hugs guys x

 

Mumboo
Member

Re: January 2021 Chemo Starters

Feeling the same as you today @Lewy2803. Been awake since 5am. Can't sleep but tired. Not hungry, but need food. Just bleurghhhhhh!

I'm snacking on chopped apricots (pre-chopped! How lazy!!), or an apple or a biscuit... Not meals as such, just something to taste. The other day i had chocolate weetabix with warm milk & a sprinkling of sugar. Lush!! 

Struggled this morning with my eldest. She didn't want to do online registration. Lots of tears. The root of it was the fact that all her friends will be going back to school in 2 weeks & she won't be. Made me so unbearably sad. It will be until the end of April & that's such a long time for them. Just so sad for what they are having to cope with. On top of everything else, her best friend lives next door but they are moving house on Friday. I'm really good friends with the Mum too. She's been amazing throughout all this BC rubbish. We were always in & out of each others house, but we haven't been in since beginning of Jan & we won't be able to visit their new house for ages either. We're just a bit sad today i guess. Sorry. Bloody covid rubbish. 

On the positive side.. The sun is shining already today so Spring is definitely on it's way. Onwards & upwards. 🌞

X

Lewy2803
Member

Re: January 2021 Chemo Starters

Am a bit fed up. Can’t get comfy. Just want to throw a toddler tantrum and hope someone can come along and make me feel better. I feel sick. Don’t fancy anything to eat or drink yet am really hungry and thirsty. Sitting on the loo again hoping something will happen but knowing it probably won’t! 
BUT .... going to make myself eat and drink, then I’m going to have a shower, then I might have a wander in the garden. Mum bought me some David Austin roses for my bday last year and we dug a new rose garden in November. 3 climbers and 3 shrubs and they are all shooting so am looking forward to  seeing how they are doing. Our church is about half mile walk and am thinking I might try that today as the snowdrops and daffs are out. Looking forward to cricket starting tomorrow and also tomorrow is last day of injections so hopefully start to feel a bit better then. 
does anyone else have need to wee every couple of hours? Am sure it’s the injections - really interferes with sleep tho. For all of you my lovely friends, grit your teeth, find that resilience. You are not alone and we will get through this together xxx

Pesto
Member

Re: January 2021 Chemo Starters

To you all

 

I absolutely agree with re the  easing of lockdown.  I am terrified, have yet to go anywhere since October and the start of treatment, part from the docs for bloods, the hospital and the dentist.  Even before I detested busy places and in first lock was very very cautious.  The thought of sitting next to some one on any form of transport even a plane to get away to a hot spot for holiday, sitting in a crowded restaurant and using a hotel swimming pool YUK !

 

 

 

I enjoy being anti social at the best of times ...

 

Hugs to all

 

Gilly

XXX

Belinda_F
Member

Re: January 2021 Chemo Starters

hello guys, how are you? especially those just post treatment? you're all in my thoughts tons... especially as I come out of 'the horrid'... today, finally, I feel a little more normal, and what a feeling it is isn't it... but I know many of you are in the thick of post treatment toxicity, steroids, sickness and injections...

@donkeywoman how are you today? have you spent day in bed? sorry feeling stressed trying to help hubby...trying to do anything just post treatment is beyond hard, I do hope you're both feeling less stressed now and you've rested tons under the duvet. 

I'm so sorry, as usual with my phone, it's not tagging properly, but you know who you all are, I hope today has seen some improvements? I've asked about the tagging issue, and it was suggested using chrome... not sure that helps when using phone? I'll try... but apologies, can't tag the rest of you guys... you know who you are.... ❤

big news with potential lockdown easing... makes me nervous.. tubes will be busier... schools back too, but @Mumboo (that tag worked, oh hum, confused you will be...) kids will stay homeschooled at yours yes? best to ATM, it's too much stress isn't it... 

@Erin 35 is your little girl at nursery? and how are you doing emotionally today? it's horrendous isn't it, the emotional toll, I do hope you're rallying today...

so today has been a good day, had energy, been busy, visited my parents for first time in months, so good to jump in the car!!! but I got a date wrong and missed my ultrasound!!!! thank god they have an appointment tomorrow ... here's hoping tumor shrunk again, nerve wracking...

my lungs are improved, wondering if I had a slight infection? or it was breast pain, post chemo... it's common apparently, and the drugs doing their work... will find out more with Drs Wed. busy week of consultations here. 

sending big hugs guys, do hope those feeling better continue to with speed, and those in the depths of 'the horrid', big kisses for getting thru it and feeling much better super soon x

 

 

Mumboo
Member

Re: January 2021 Chemo Starters

Hi @Erin 35. Just a quick message to hopefully give you a bit of encouragement with your daughter about the hair. Even though i'm still using the cold cap, mine shedded massively after treatment #2 & i decided to cut it really short (didn't quite brave the shave, but i did look like a wispy haired old man!). It is a big deal to drastically change your appearance. It's emotional for yourself, but you also worry about the effect on others, especially those we are desperate to protect. My amazing girls (8+10) were obviously uncomfortable, unhappy but also intrigued. I didn't know whether to try hiding it with scarves etc, but in the end after only a few days, it has just become the new "normal". My youngest (also called Gracie 💖) likes to tickle it! 

I just spoke to my 10 year old about your situation & how we coped with it & she says that she doesn't even notice what i have on my head now, it's just me. Kids are so very resilient. Rock your amazing warrior look & let your daughter see your strength (even if we don't always feel it!! 😘).

Sending lots of hugs. 💖💖

Xx

donkeywoman
Member

Re: January 2021 Chemo Starters

Evening all, 

@Gelbel so lovely to hear you sounding so bouncy - your walk with pals sounds lovely, if exhausting. And good for you, taking charge of your make up etc. Your friends sound lovely. Hope the chicken was good once slow cooked. 

@Belinda_F glad you managed to celebrate with your friend, albeit sober on the sofa. I can't imagine opening a bottle of sparkle ever again! Though I'm sure I will... 

How has everyone's day been? I've been pretty hopeless, mouth is revolting, feel fuzzy and miserable. But did get out for about 40 minutes which helped. I cooked a pizza earlier and have munched my through that gradually througout the day. Hubby has been working today (here) and asked me for advice on a word document, but I couldn't work it out - really can't think straight at all. He is stressed and that stresses me, ugh. I've come back to bed for a bit, cosied up with the laptop.

@Belinda_F just so you know, the cricket matches last 4 or 5 days and then there's a bit of a gap. Next one starts on Wednesday morning - 9am on channel 4 if you want to catch it 😊. It's starting later in India, so not the middle of the night this time.

@Pesto - it's interesting that you have oral chemo - I had wondered if they might use it more during covid, but it wasn't an option for me. How do you generally find it? My friend's partner is on it for a year for skin cancer and it sounds harder than I maybe thought. 

All the best for a peaceful evening for all xx

Gelbel
Member

Re: January 2021 Chemo Starters

@Pesto / Gilly,

Sorry, I really meant to say thank you so much for helping. I thought of it as I was typing, then, chemo brain thing that I am, I forgot. x 🤗

Gelbel
Member

Re: January 2021 Chemo Starters

Hi everyone,  thank you all for your lovely words.

I've just been out with 2 girlfriends for an epic 4 lap walk of our local park. Ooohhhh my trotters! Do you know @Erin they said practically the same as @Shi - think of all the fun we can have with wigs and when it comes back.... they added unlike those with permanent alopecia. It's just utter pants we can't all go shopping together at the moment. Bless, they've offered to go and buy wigs for when we can go for a drink, or a bite to eat - we can all look amazing, different versions of ourselves. And one's taking me for make-up lessons at a discrete place she knows as soon as they re-open. That reminded me that my Trust's hair lady said she does virtual sessions. Think I'll book one - I need to stop me looking like a pale pink football and find some cheekbones. And, bless her, one chum reminded me what we learnt at a Clinique night we went to.

So I'm still not bouncing like Tigger about it but I'm trying to own it rather than it owning me. Will call my hairdresser to take it all off... not yet though.

I'm sorry to hear most of you are grotsville today. I wish you all comfy evenings and lovely, restful nights.

Me... I've had a roast chicken dinner in the slow cooker all day that I'm going to dive into as soon as the cauliflower cheese bubbles and browns. We've a couple of iced shortbread biscuits for pud thank to one of my friends.

I need to warm up... got a bit chilly nattering socially distanced on the drive as I handed over my unopened grapefruit juices. Just as well I read that we can't drink it, no one told me when I asked if there was anything to stop/avoid. 

Looking forward to the new James Nesbitt series tonight, even if it stops me watching some Spiral.

Love and hugs to you all.

Angela x

Erin 35
Member

Re: January 2021 Chemo Starters

@donkeywoman Thank you for your lovely, support words! I hope you managed a more productive day than me today! Slept the whole day through! I felt like superwoman yesterday with extra steroids and stronger anti sickness meds but have definitely crashed and burned today. Lovely to see some sunshine up north though - long may it continue!

Sending love and get well wishes to everyone finding it hard today! Cancer is hard enough without battling it during a pandemic! One day soon we’ll be enjoying those glasses of wine with our friends again and all this will be over! Xx

Erin 35
Member

Re: January 2021 Chemo Starters

@Belinda_F  Thanks again for your lovely, supportive messages! You lovely, brave ladies offering such comfort to others at such a difficult time personally - I think you are wonderful! I seem to have resorted to hermit style coping mechanisms! 
After an initially great day yesterday after round 2 of FEC on Friday I have crashed and burned today. Slept the day through until after 3 but managed to rally myself for an hour in the sunshine in the garden with a fluffy blanket this afternoon, which has definitely lifted my spirits! 

Starting jabs tonight though 😔 hate them! 
I’m exactly the same on the phone! I hate it! Put off answering and calling back as long as I can. Definitely more for whatsapp or messenger! Xx

Erin 35
Member

Re: January 2021 Chemo Starters

@Shi Thank you for your lovely message. Some funny wigs sounds like a good plan! She did sit behind me singing ‘Mummy has a baldy head’ while my husband shaved my head! 😂 
On the bright side - showers are quick at the moment with no hair washing or shaving to do! Xx

Erin 35
Member

Re: January 2021 Chemo Starters

@Fruitcake Thank you so much for your message! I came across this charity and Gracie’s little dolly actually arrived yesterday morning! They are a lovely charity offering all sorts of free products ladies - get on and have a look! I got some lovely hand balm and another headcap with the doll for my little girl, all for free! 
The lovely ladies at my chemo centre have given me a book to read with her too called Mummy’s Lump but it goes into a lot of detail for a three year old. 
She’s dealt amazingly well all things considered - she just doesn’t like to see my bald head, which I definitely understand! I still remember my great auntie losing her hair to cancer when I was about 8 and it was scary! Just hope she’s too young to remember any of it!
Xx

 

Fruitcake
Member

Re: January 2021 Chemo Starters

Hope no one will mind me visiting your thread.

I have lurked on these boards through my own treatments last summer but only registered now so I can respond to you @Erin 35 with your scared 3 year old. The charity  Cancerhaircare.co.uk in their section on children offer free dolls knitted by volunteers to help you explain hair loss. You can even choose skin colour and request it be wearing a dress in your daughters favourite colour which all seems a brilliant idea. (I have a granddaughter your child’s age and dreaded frightening her but consider myself very fortunate to have had success with the cold cap and kept 50% of my hair, enough that only I notice the difference. Same charity supplied a kit of hair care products at my local hospital at my first chemo treatment.)

Pesto
Member

Re: January 2021 Chemo Starters

@Belinda_F 

 

In Lancashire, Bury actually where I was born, any left over Yorkshires used to be dished out as puds.  Think large fluffy pancakes with lots of sweetie goodies

 

Re treatment I am on 21 days oral chemo, 7 days off plus letrozole every day.    This time mid session has really hit me for six, I could get a job batting for England... But if it is working and I think it is it is well worth the hassle.  I just hope they don't stop it as it will be my third round.  It really feels as the growth in boob is diminshing, can't say for the rest of me 

 

Sorry to hear not good, but don't force yourself into getting up.  The weather here is grey and miserable, with the rain you can't see but soaks.  Not a day for going anywhere apart from the sofa and the tele.  When oh when are they going to put something decent on without 10 mins of adverts every 15 mins.  That said did watch Marley and Me yesterday, a lovely humorous but sad film.  Great to snuggle into a throw with and a bag of Liquorice Allsorts 

 

Hugs

 

Gilly

 

xxxx

Shi
Community Champion
Community Champion

Re: January 2021 Chemo Starters

Erin ❤️ Try thinking of this as chrysalis stage and once chemo done you do come out and unwrap new wings (hair) and day by day as brows and lashes and nose hair comes back and you skip into rads on the home straight 😁 quick tip when your face hair comes back you can look like a fluffy chic for a bit, don’t shave or iMac it off it does settle. Could you and your little one choose some fun wigs together from amazon fir you both and play dress up together? It might help? Also beauty despite cancer do good scalp care kit, might be worth a look. 💕💕Shi xx

Belinda_F
Member

Re: January 2021 Chemo Starters

hi guys, oh @Erin 35  I did wonder if you were having an horrendous time with hair loss, I'm so so sorry... there's nothing that can prepare us is there, long or short... a huge identity part of us or less. so... I know you said you have long long dark hair... but the additional stress of your daughter is chronically hard... I wonder if there are some story books which explain it to small children, I'll look... but it's so so hard... and then @gerbel you think you'll be OK and it hits you hard too... loves, you're all in my thoughts. I'm washing mine today, very stressful... and then I'll put it back, and won't look again. it's all I can do. it will grow back, just remember.

how many of us are in bed today? a few of us I think.... my best pal came over, and we had literally ten bars of dancing queen before I collapsed on sofa in exhaustion... didn't open the fizz in the end, which I was glad about, feel so tired and toxic today, don't need anything additional... but we had fun anyway... as much as you can with someone who can barely move. Still, last jab last night, so some hopefully normal Ish feelings on the way this week. 

@donkeywoman I'm so the same with the phone! horrendous phobia... but I do like a whatsapp voice message, 😂 leave very long ones it has been known... but it's an issue for me not chatting on the phone as its the normal isn't it really...I think my friends are use to it now, and put up with me... 

going to try to get up... 

@Pesto when is your next treatment? has anyone done weekly taxol? groan...do you have Yorkshires with sweet foods???? never heard of that! 

hugs for now all x

 

Pesto
Member

Re: January 2021 Chemo Starters

Morning all

@Lewy2803 

 

Brilliant idea re all meeting up.  Count me in.

 

So sorry you are feeling cr@p. Hang on in there you are like the rest of you remarkable ladies - doing brilliantly.

 

Agree re the fan, I need a Punkawallah  ( like the one they had in  Aint it half  hot mum )

 

To all of you, have a great Sunday even though all days of the week meld into one at the moment.  It will be Easter bunnies soon and loads of chocolate.  One can dream of enjoying....

Hubby had his jab on Friday and is feeling the after effects as is Daughter who had it yesterday .  Maybe I should get my snazzy nurses outfit on with my high heels ( Those were the days ladies ) and return favour of  the looking after, but then again I have told him to take paracetamol   lol

 

@gelibel, daughter still on the hunt for information in Leeds.  She thinks she might have a contact up her sleeve and if well enough tomorrow to be in her office will try to contact her / him

 

Big hugs all and those who fancy a  home made Yorkshire Pudding shout and I will deliver, either with gravy, custard, jam or cream

 

Gilly XXXX

Lewy2803
Member

Re: January 2021 Chemo Starters

Hey everyone

well tbh I feel pants today but that’s ok. Steroids finished yesterday (I only have them for three days too DW) and started the dreaded filgrastim injections yesterday. I have 5 days of them and last cycle that was the worse 5 days as it had such a horrid effect on my bowels/waterworks. I took the injection last night with co-codamol and clarityn then had an Epsom salt bath and straight to bed. I did get some sleep but had to keep getting up to wee. But muscle aches definitely better than last cycle. This morning tho gosh, I ache. Am up, watched America’s cup this morning, felt so sorry for Ben Ainslies team losing out in the semis but well done Italy! 
thinking of going back to bed soon as more comfy. 

thanks @donkeywoman, guts holding up much better this time and have meds if needed too  

my hair really going now - but still have loads too. I think when you see it come out it looks like loads doesn’t it. I started thinning 2 weeks after first treatment and am using cold cap. The nhs wig is brilliant tho. So thankful. But don’t really need it yet ... just wearing comfy beanies

had a lovely gift from https://www.chemogiftbags.org/ - a jam packed bag full of things that are so helpful. My friend had nominated me for one. So thoughtful. Best thing in there for me is the hand held fan. Those steroids play havoc with the internal heating! I feel like that old ready brek advert!

thanks for the kind words about my sisters. My surgeon was amazing when I told her about my sister who died. She put her hand on my knee and said that isn’t going to happen, we’ve caught it early. My cancer is different to my sisters and tbh by the time she found her lump it had already spread. Plus she lived in a dif country and didn’t have access to the amazing licensed drugs we have here. My little sister is putting a brave face on but I know she will be worried. All I can do is support her as best I can. 

take care everyone ..... I think we should try and meet up in the summer after this is all over xxxx

donkeywoman
Member

Re: January 2021 Chemo Starters

@Erin 35 and @Gelbel so sorry to hear about your hair. We just can't prepare for how we will feel about the next loss, can we? Really hope the soreness reduces now that the hair is less (that's what I found). And that you can wear you wigs more if that feels better. 

Oh @Erin 35 it must be so hard to protect your little girl when you feel so vulnerable yourself... 

Never feel bad about not coming on here, it's just meant to be a supportive place, no duty... we all have enough that we have to do, people to care for etc, this is our place to use or not as we want.

I am so with you about women friends,  I'm missing just being near them and sharing. I hate talking on the phone so most of my communication is on WhatsApp. I do like doing audio messages , but it's just not the same... But we will get back to them.

I'm doing my usual swinging from one emotion to the next. Felt quite calm first thing, but now feel rubbish,  have no energy for anything. Managed a bit of breakfast but everything tastes horrid. I will try a wash and getting dressed. But if that doesn't help, I may go back to bed!

Love to all and special gentle hugs for anyone not starting the day in a good place. And high fives for any who are!xx

Erin 35
Member

Re: January 2021 Chemo Starters

@Gelbel I’m with you there lovely! 😔 the last of mine was all shaved off last weekend after a shower took masses of it and this is the first time I’ve even been able to face coming on here in a week! Not because everyone wouldn’t be amazingly supportive, I’m just devastated! I bought a lovely human hair wig which I really do like but my head is so sore I can’t wear it all the time like I’d planned. So far it’s made it to my Covid jab and round 2 chemo then I’ve just been living it comfy hats. My little girl is only 3 and is terrified to see my bald head. I don’t blame her really - I can’t look at it either! 
I know what you mean about friends - I just want a hug from them! They’ve been so lovely and sent lots of flowers and beautiful gifts, but it isn’t the same as a good old rant and a few glasses of wine! 
Hope you’re doing ok ladies! Sorry for being so distant - this is bloody hard isn’t it! 
Love to you all Xx

donkeywoman
Member

Re: sRe: January 2021 Chemo Starters

@Lewy2803 sorry, just looked back on messages and reminded me about your sisters. How difficult it must be for you both,  to have lost a sister and now be going through so much. Fingers crossed for your younger sister,  sounds as they are being appropriately cautious. And you are on a curative pathway of course. Must be hard. You sound a very strong person, but remember to offload here if it helps xx

donkeywoman
Member

Re: sRe: January 2021 Chemo Starters

Morning all, 

I know it's a bit early,  but I was in bed for 8pm last night... not too bad a night, just kept the radio on and dozed plenty. End of steroids now, I just have them for 3 days tho I think some have them for longer?

@Pesto (my phone won't tag now) sounds as though you've rested like you have to the last week. Hopefully as you get into your third you will feel a bit brighter 🤞. And @Mumboo, glad the nausea is better and your cake hamper sounds fabulous! I'm so glad you were having a ready meal and hope it was good. I keep reading posts about wholesome home cooked meals and smoothies and realising that I've had a cup a soup and a bag of hula hoops! I'm going with what I can face...

@belinda f, did you manage to celebrate your friend's 50th in some way? Hope so...

@lewy how are you getting on? Hope your guts are behaving better this time round..

Enough waffle,  back to the radio. I'm not putting any expectations on myself today, I did 2 lots of washing yesterday so that's my contribution for the weekend. 

Hope all your Sundays are as smooth as possible xx 

Pesto
Member

Re: sRe: January 2021 Chemo Starters

Hi all.

Though I had better touch base, been very slow this week at commenting, but have read all your lovely posts and it is great to hear of so many getting to the end and or feeling better.

 

This week mid cycle for my 21 day chemo and it has been very trying.  Slept most of the week getting up very late, little snack and on sofa in front of log burner, asleep again for hours.

The hamper sound delicious....  treats or what !!!!!

 

Going to the supermarket what a day out, I would dress in my Sunday best for that including heels, a big hat and posh gloves......

 

Stay safe all.  The netflix dram sounds just what I need at the moment, will try to download.  Thanks for the suggestion.

 

Hugs all round

 

Gilly

 

XXX

 

 

FlorrieBee
Member

Re: sRe: January 2021 Chemo Starters

Hi everyone, how are you all?

On my phone at the moment, not sure how to tag everyone but good catching up on a few posts.

Oooo, I keep seeing people on TV with a glass of wine in their hands, sooo jealous. I also haven't touched anything since new year, can't face it and very much looking forward to that in the summer! Picnic and hin sounds fab but mine would have to be Prosecco, love gin but it doesn't like me.

So I have kept on top of my nausea this last few days and now understand what you were all saying about getting the munchies, can't stop eating the last two days! My beautiful friend dropped off a basket of sponge, banana cake and almond cake last night so I'm spoilt for choice! Sainsburys taste the difference curry for supper, easy option but looking forward to it.

So pleased some of you have managed to get out for a little air, have really missed my walks this week but very fatigued. Must get out tomorrow!

My last day today of steroids and injections so fingers crossed some sleep may return 🤞

Very lazy day and started watching Firefly Lane on Netflix, I'm totally hooked! Bit chick flicky but love it, makes a change living in an all male household 🤣 (except for our one dog) 

Hope the rest of the weekend is kind to you all, you get some sleep and enjoy a little food even if we can't have a drink for now. Hugs all round xx

Mumboo
Member

Re: sRe: January 2021 Chemo Starters

Hi ladies, 

Well i know what you mean @donkeywoman about being steroided up!! After a bit of a rough day yesterday, i managed to get some half decent sleep last night, so with that & the steroids this morning, i prepared breakfast, slow cooker meal for tea, cleaned the bathroom, put a wash on..all before 11am! Have now been lying in bed having the occasional nap since midday!! Steroids worn off!! 

I'm with you on the alcohol front @Gelbel. Me & the husband would have a couple of cheeky brandies/wine of a weekend but i've not touched a drop since new years eve!  I don't really miss it too much, which is something i never thought i'd say!! I'm definitely going to be a cheap date after all this!!  My friend has just said that when this is all over & we can actually meet up with people, that we're going to go to the beach with a picnic blanket & gin! That's definitely something to look forward to!!  

Hope you're feeling ok @Belinda_F. Regarding your question about my picc line (my chemo brain has actually remembered something!!), they always draw blood & flush it immediately before treatment. It flushed ok, but wasn't drawing much blood & then stopped working completely. I had to turn my head, hold my breath, cough, lie down flat, twist my arm...still nothing. After half hour of trying different things, they sat me up to my original position & it worked!! Crazy body!! 

Hope you're all looking after yourselves lovely ladies. 😘

Xx

 

Gelbel
Member

Re: January 2021 Chemo Starters

Well I am glad I bought a pack of (small) custard doughnuts.... absolutely 💔💔💔💔. Had my usual big Saturday shower hair wash etc. Not washed it for a week and it's coming out. 1cm receding at front and general thinning. Got that feel like it's being pulled out all over. 😢😢😢

Gutted. Have been waiting for it to happen but it's still a shock. I'm obviously not as gung-ho about it coming out as I thought. So it's spurred me into action to stretch the blue rooted wig I bought (well, my mum did!) that's an average when I'm nearly a large.

Utterly fed up as bf said: "We knew it was going to happen." Hubby upset at me being upset - he's not the cuddle I want right now. Other girlfriends are being lovely. Blooming coronavirus- I just want a shoulder to cry on and a hug.

Doughnuts 0, Gel 4, now for the 3 Reece's peanut butter eggs I bought...

Belinda_F
Member

Re: sRe: January 2021 Chemo Starters

Hi everybody! so lovely to see your messages as usual... @Gelbel I'm sorry you couldn't face a beer, you'll know when the right time is won't you... I've never not drunk for such a long time, and have a feeling my drinking might have changed forever now... party days which were a common event can now only be couple of times a year I reckon...although that savouring a good glass of wine, oh, sounds so good... one pleasure bc won't take away... 

@donkeywoman that's great you're doing OK so far, breakfast, bed, rest, just what Dr ordered...  do you think you (cautiously) feel better on day 2 than last time? it's so variable isn't it... I'm feeling brighter today, no sickness, no steroids... had little palpitations last night but took a propranerol and got some sleep... til half five or something! anything better than nothing ATM isn't it. Has the cricket finished guys? 

and how are the rest of you doing? 

I'm more active today, pottering, going to pop in garden soon, do some planting... but I find I can do ten minutes of something and then am so shattered I have to stop... this must be what chronic fatigue is like... horrible... 

I've emailed my consultants already about the pain @donkeywoman ~ I went for a walk yesterday, and there was a slight hill, and I couldn't do it... had to stop, sit down, and go down....had wondered if I'd caught covid at hospital last week but no other symptoms... anyway, I'm on it, not overly concerned but cautious all the way now... 

I do hope you guys are doing OK today? and managing some lightness and kindness to yourselves.... big big hugs x

 

donkeywoman
Member

Re: sRe: January 2021 Chemo Starters

Morning all,

@Gelbel well done on getting out for a walk, hope your friend was strategically walking at the same time and you had a catch up? I'm not surprised about the booze - I've not been able to face it at all. Usually, even if I'd not been fancying wine, if hubby opened a beer, I would immediately go and crack open a bottle - like a Pavlovian response! Now I just sip my water and don't think about alcohol at all. Hope that goes away once chemo is over...

The weather makes a huge difference doesn't it? I used to just get wrapped up and get out whatever it was doing out there, but now I stare at it, think about it and then cosy back down again. I always get out to see the animals, but actually walking any distance is a different matter. But spring is on its way, which I really feel will improve things.

@Belinda_F how was your night? Hope the palpitations stayed away? I just had them that one night, and they were very wake inducing... I felt much better once I'd had an ecg and check over, and so far they haven't come back. I didn't think of them being linked to the injections, but it was after the 2nd day of them. But I give mine in the morning. Oh who knows, we are having such a cocktail at the moment, aren't we?!

I am definitely steroided up - have that heady mix of being tired and also wired! But i've managed a slice of toast, a glass of smoothie (ashamed to say, shop bought, I'm too lazy to make my own) and my pharmacy shop of medication. So that was enough for a bit, I'm back in bed with the laptop, may find something light to watch in a bit.

Hope everyone is as okay as possible this morning, look forward to updates when you feel like sharing them xx

Gelbel
Member

Re: sRe: January 2021 Chemo Starters

Happy Saturday ladies. I'm only going out for a walk in a little bit to get a paper And I may just be 'happen' to bump in to a pal while I'm at it.  I am ashamed to say it will be my first proper walk since chemo 2 weeks ago and that's simply down to week one being freezing cold with ice and snow, and week two full of windy, rain and not going out weather.

I might buy some low/no alcohol beer/wine -  I just could not face it last night, I felt slightly queasy at the thought. I nearly clobbered my husband when he cracked open a beer and said: "Cheers!"

I hope you are all coming out of your side effects, or, if they are hanging around, they are manageable.

Enjoy your weekends and whatever you have planned... or not.

Love and hugs.

Angela x

donkeywoman
Member

Re: sRe: January 2021 Chemo Starters

Evening all 

@Belinda_F maybe you need to call the nurses about the breast/chest pain? May need checking out? I get more indigestion than usual, but that's not the same..and I have just the one breast now! 

Glad you had a good walk with your friend and it helped your mood. But the bad sleep and palpitations sound very wearing. Hurray for last jab today, fingers crossed for a decent sleep. You are probably tucked up cosy now.

Treatment went fine, I'm glad I had it. 2/3rds of the way through seems much better than half! I'm shattered but am going to just try and go with it. Magnesium deficiency can also cause fatigue,  tho that,  anaemia and chemo doesn't bode well for an energetic time! 

@Gelbel hope you are having your beer and forgetting about vaccination debacle for a bit. And @Belinda_F hope you get your sip of sparkle with your bestest pal tomorrow 🥂🍻💕

And hope everyone is having as good a Friday night as possible in these strange times. Night night 😴 xx

Belinda_F
Member

Re: sRe: January 2021 Chemo Starters

PS, quick question guys, has anyone had any breast pain with chemo? I can't tell if it's in my lung or breast, but definitely there... x

Belinda_F
Member

Re: sRe: January 2021 Chemo Starters

hi guys, so lovely to read your posts... I'm so glad so far so OK post treatments @donkeywoman @Lewy2803 and @Mumboo ~ I hope the sickness meds are doing their jobs and staving off the worst of it? what happened with the Picc Andrea? so sorry to hear that... I had problems with my port too, but all OK... in the end and at least not painful...I hope?? 

@Lewy2803 you sound positively spritely compared to last time, what a relief! 

@donkeywoman ONLY TWO TO GOOOOOOO!!!!! I hope you're glad you decided to have treatment without delaying, and how are you feeling with your anemia? 

@gerbel I can't believe you're having all this hassle with the jab!!!!! you'll get there but my god, you don't need that ATM. what you do need probably is a beer or two,  lol! I do hope they go down well...I too am planning a quarter, yes, a whole quarter of a glass of fizz tomorrow! my best pals 50th and despite feeling unholy awful after a tiny drink in round #1, I'm going to try again... lots of Oj too... might even have a little dance.... 💃 

@Lewy2803 I'm so so sorry to hear you lost your sister to bc... that must make the anxiety many fold, and such a loss. Your poor sis too... thank god the Drs are being super cautious... when are they biopsying? any family bc is so hard isn't it. you must miss her so much. But what a blessing too that sis is so supportive... curry sounds wonderful! actually, spicy is going down really well for me ATM too, enjoy! 

so my day improved after an awful sleep. think the injections gave me palpitations and took hours to get off. last one tonight thank god. despite my usual grump this morning, a friend drove for a walk with me, first time out in a week, and a good natter was just the elixir I needed... I so enjoyed it... and am SO shattered now. fire, dinner, cocoa and bed... Ahhhhh.... 

big big hugs all x

 

Lewy2803
Member

Re: sRe: January 2021 Chemo Starters

Glad all went well Mumboo and Donkeywoman. I had a great night sleep which I wasn’t expecting due to taking my steroids at 3pm as had forgotten!! Hubby said I snored loudly all night, so great to get my own back!!

Starting to feel a bit fatigued now and have just taken an Ondansetron but not feeling nausea at all luckily. Hope you improve soon Mumboo.  

My little sister just brought round a Sri Lankan curry for my tea and some soup for tomorrow bless her. Not sure if I told you before but we lost our older sister to BC in 2016 at the age of 49 so I think little sis in particular is finding my treatment very hard. She is only 48 but was advised to get an early mammogram due to family history. She went and they found two cysts (now drained) and is going back for some biopsies of some calcification but they have made clear to her that this is precautionary and they really don’t think it’s anything to worry about. God I love our NHS so much. 

so hope you get the jabs sorted soon @Gelbel. It’s such a worry. Hope everyone else is doing ok xxx

Mumboo
Member

Re: sRe: January 2021 Chemo Starters

So glad your chemo went quicker yesterday @Lewy2803 & that yours was straightforward today too @donkeywoman.  Make sure you rest up now. 😘

Mine went ok yesterday. They did have a bit of trouble getting my picc line to work, but it did in the end. Phew! I did feel quite ropey & nauseous last night, more so than previously. Have had to take Domperidone a couple of times, but fingers crossed that will improve. I need to nap but it's just not happening today. Just cleaned the kitchen!  Bloody steroids!!! 

I'm so sorry to hear of the nightmare you're having with getting your covid jab. Why on earth is it not more straight forward!  This is the last thing you need to be chasing up at the moment. 

Hope all you other lovely ladies are ok. 😘

X

Gelbel
Member

Re: sRe: January 2021 Chemo Starters

No joy. Fuming as a colleague a few years younger than me (I'm 58) in South Devon with no underlying conditions has just booked hers. My practices co-ordinating GP called me this am to say hospital should do it and not to be put off if they say no as obviously GP-led preferred but if day doesn't suit in cycle they should step in. Going to have a word at clinic on Tuesday #ComputerStillSayingNo and Matt Hancock & pal not answering their tweets!

I really hope you all feel OK after your latest cycles. Is it me or is the passing of 21 days (in my case) between cycles taking forever? Is it because we live day to day or because we tend to count them to tick off the side effects/nadir days? 😫

I am going to have (try?) a beer or two tonight. 😟

I hope you have calm and peaceful weeks.

Love AnGELa x

donkeywoman
Member

Re: sRe: January 2021 Chemo Starters

Hi all, how is everyone feeling today? Hope @Lewy2803 and @Mumboo are as good as possible after yesterday's treatments. And that @Belinda_F you are feeling a bit of respite from all the poking and prodding? Any luck with vaccine chaos @Pesto and @Gelbel ? I love the collaboration you have going on 😊.

I'm just out from number 4, waiting for my lift home and enjoying a bit of fresh air. All went fine, now just ready for a nap...

Hugs all round xx

Pesto
Member

Re: sRe: January 2021 Chemo Starters

@Gelbel 

Good for you.  Go get 'em give them 'ell, and then perhaps a quick kick in the rear

have set daughter on the case.... ( Tracy beaker in drag ) and she is looking into if she knows through her contacts.  The good news is she is brilliant, the bad if she can't find anyone there will probably be nobody.  Fingers crossed, and she finds someone to help you.  No fee just a big hug.  The beauty of this forum is someone some where will know something.  Her tarantula feelers are out......

 

Gilly

XXXX

Gelbel
Member

Re: sRe: January 2021 Chemo Starters

That's poor about your chemo nurse. Slightly different - when I had my Mx, the other 2 ladies having surgery that day BCN came on the ward to say hi to them. She came and introduced herself to me as she's in the same team as mine. That same nurse then did my 1st post surgery call, in her words as it was easier for me to talk to someone I'd met. 

My official BCN and her now tend to alternative when they contact me.