71652members
375873posts
cancel
Showing results for 
Search instead for 
Did you mean: 

January 2021 Chemo Starters

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.

Gelbel
Member

Re: sRe: January 2021 Chemo Starters

Hi @Pesto 

I've looked everywhere and not found an NHS page with are you happy with this info at all. I'm in Leeds.

I've just tweeted them and asked if they'd have the decency to reply this time...

Pesto
Member

Re: sRe: January 2021 Chemo Starters

Have a look at all the NHS sites...  

 

One should ask if you are happy with the info...  I selected no and BANG straight into the booking site re the back door.  Flook probably, Where in the country are you

 

Gilly

 

XXX

Lewy2803
Member

Re: sRe: January 2021 Chemo Starters

I have a chunky tummy too!! Mind you I’ve lost 5kg since this month - all that diarrhoea was worth it lol. But yes I totally get that about intramuscular- just wondering why in the tummy last time?? Just makes me think they really didn’t know what they were doing!!! Hey ho. Apparently no harm done. 

donkeywoman
Member

Re: sRe: January 2021 Chemo Starters

Hi @Lewy2803 glad you are home without your mammoth day like last time.

Re Herceptin jab, I've always had it in thigh. It's an intra muscular injection and has to go in quite slowly. I would have thought it would be quite sore in a tummy, even in one with as much chub as mine!xx

Lewy2803
Member

Re: sRe: January 2021 Chemo Starters

Hey everyone

Just a quick note to say I’m home. Still 4 hours but much better than the 11.5 last time!! Slight headache and have the steroid glow but other than fine so far. They reduced my Doxi and Carbo slightly from last time and I have some diarrhoea meds just in case I have the same reaction again. Let’s hope not. I saw my husband eat 2 week old chilli from the fridge at lunchtime .... I really don’t want us both competing for the loo!! Cold cap was a lot colder this week due to thinning hair - had to really grit my teeth and persevere.

Those of you having Herceptin ... a quick question. Last week they put it in my tummy. This week, am told no it has to go in alternate thighs never in the tummy! Has anyone else had it in their tum?

I asked about my chemo nurse ... she is named in my chemo book.  Apparently she was on the ward today ... never introduced herself!! So will make a point of introducing myself next time. Right off to milk some sympathy from the boys  have to say hubby done well and is roasting a chicken for tea - I had earmarked that for Sunday but as I will be in chemo coma by then, he can source an alternative!

hope your ok @Mumboo and big hugs to those having treatment tomorrow and those feeling bleughhh!

 

Gelbel
Member

Re: sRe: January 2021 Chemo Starters

Thanks Gill, Swiftqueue's not available in my areas. Well Google and playing with the urban not showing anything. 

Pesto
Member

Re: sRe: January 2021 Chemo Starters

@Gelbel 

I have just posted a link re the covid jab, if you still can't get an appointment take a look, if you can't see it come back I will PM you

 

hugs

 

Gilly

 

XXX

Pesto
Member

Re: sRe: January 2021 Chemo Starters

@donkeywoman 

 

yes thank you Humphrey managed, but like his  human daddy is still very grumpy...

 

I am pretty sure there is a Maggies in Newark, I much prefer Newark to Nottingham, parking is always so much easier and very often free, the hospital there is also lovely as it is much smaller.

 

Well done you re the phone call, though I do find them much easier than face to face, much less daunting, no masks so the conversation is easier to hear.  And yes regarding the being in control bit, even though I am quivering inside normally I manage to sound very pragmatic, positive and calm

 

 @Belinda_F ...Where are the big panties.... , gosh I can remember my lovely late Grans bloomers billowing in the wind on the line.  Underwear or parachute.....  was never very sure, but I can't remember lace adorning a parachute and it was round both legs at the bottom, just above the knee.

 

Fresh flowers are a wonderful bonus at the moment.  Lilies have always been my favourites but the last bunch, John had to remove to the hall because of the smell.  Bless him he has been putting up with the bouquet from the trumpets for years as they have always made him sneeze

 

John has managed to book his covid test as has daughter without a letter. He goes tomorrow, she on Saturday.  Daughter saw something on FB, sent him the link and both were lucky

 

 

Link is

 

https://nottsccg.nhs.uk/covid-19/covid-19-vaccination-programme-what-you-can-do-to-help/?fbclid=IwAR...

 

I realise it is Nottinghamshire but could there  be others local to you all.  There were two sections, one for over 65's and one for cat 6....  carers vulnerable etc, both did the cat 6 as they help to care for me and no problems at all.  Both will be much happier when jabbed even only once at the moment as both have to out to the shops etc, daughter working from home but not all the time, both very worried about bringing it  into the house due to the covid idiots and deniers out there

 

Hugs all round

 

Gilly xxxx

Gelbel
Member

Re: sRe: January 2021 Chemo Starters

Forgot to add - I'd like a cock! With all the fluids we (are meant to be) drinking it'd be so handy. I swear the loo is my 2nd home - see back to toilet convos again!

Have a good evening. x

Gelbel
Member

Re: sRe: January 2021 Chemo Starters

What a lovely poem @Lewy2803 - sat at my desk with tears pouring down my face. You watch the boss call me...

I'm still good today thanks @Belinda_F though lightly knackered as I was awake half the night - 1 snotty email for Matt Hancock and the vaccine minister was concocted that I am still debating about sending. It's like fix your database before you add 1.7m others and you have a week to do it before I go to the press. BTW next week also happens to be my next chemo - a wonderful photoshoot opportunity as I am injected with bright pink poison! Although I might have to go with Friday appointments with my GP - going to try to get a cancellation tomorrow. Least it's good to know they are doing Fridays for the foreseeable - problem is the day they could give me the vaccine is only day 15 as chemo day is Friday (at the moment). I'll also speak to my team at clinic on Tuesday.

Thanks for the cake. I can't stop eating at the moment. Problem is, last week I wasn't putting any on, this week. Boom! 🐖 I've a real urge for a paneer curry so that's my tea tonight, hubby's been talked into left overs. You'd giggle at this... I've mentioned he has Crohn's. So the loo and going or not (more not in his case) is always a topic of conversation. He has quarterly appointment with the dietitians because he really struggles to eat - he can make a bag of crisps last several days and don't talk to me about how long a bar of chocolate/packet of sweets late. 🙄 He had to take today's call on the loo. Oh the irony. 🤣

I hope those of you having treatment today have had smooth hospital appointments and that you don't feel too poorly. Really I hope you don't feel poorly at all. 🤞 For those of you going through the mill - I so hope it's only for a short time and you start to feel better soon. 🤗

Love and hugs and peaceful, sleepy vibes.

AnGELA
x

 

donkeywoman
Member

Re: sRe: January 2021 Chemo Starters

Hello everyone,

@Mumboo and @Lewy2803 - hope today is going smoothly and you will soon be home and resting. @Lewy2803 me too re a few tears at that lovely poem. I don't feel much like a warrior, but I am certainly fighting a battle with myself about keeping going. I am amazed that I find this forum so helpful - I've never been a social media, joining groups kind of person. But there is something special about being around (virtually) people in the same position. Thanks all!

I had my chat with the oncology pharmacist today. My HB has dropped - 92, but he said it is fine to have chemo tomorrow. I told him I'd have a rough few weeks and asked about a dose reduction (of the Docetaxel). He said that isn't recommended, but that I could have another week off. I'm not keen, so agreed to have it tomorrow and then review next time... He was very kind and knowledgeable and I feel okay about tomorrow, now. I had a  wee moment of 'can't do this',but it soon passed. My husband heard the phone conversation and praised me on how calm and knowledgeable I sounded.. I think that is a bit of a problem for me - I just go into nurse mode and I don't think anyone could tell that I'm struggling. Even when I say I am, I think I sound fine and very controlled. I told hubby that I even do it with him, though I don't mean to. I don't know if it's a problem or not. Any views? 

Anyway, I've enjoyed images about big girl pants on this forum, so I will get them on tomorrow.

How is everyone feeling? @Belinda_F how are you doing today? Really hope the ickiness etc is calming down and you can have a bit of  a life. @Pesto hope your dog got his wee, in between showers? It's been nice here at moments - I don't think we are far away as I live near Matlock. 

@Lewy2803 - great gift from your friends. I was a bit overwhelmed with flowers and presents at the start of all this, but it's all calmed down now, obviously. But today, on a day when I'm having a right wobble, an old nursing friend sent me flowers, great timing, and he wouldn't have known where I was in the cycle. I have mixed feelings about flowers that are flown in from other countried, but sometimes there is something wonderful about fresh flowers.. 

Pouring with rain now, glad I got my hour outside before it started. 

Will check out those websites, @Belinda_F - there is a Maggies in Nottingham, but that's too far for me. I had a friend who did stuff there, she found it a lovely sanctuary.

Hugs all round xx

Pesto
Member

Re: sRe: January 2021 Chemo Starters

@Lewy2803 

And everyone else of course.  Good morning 

So sorry to hear your sleep tribulations, I have in the past listened to Sarah Raymond ( Sleep meditation ) on my phone, she has such a soothing and hypnotic voice, I rarely get further than a few words in before well away even for a short time .  I can try and send the links if you like but very easy to find on u tube, just type her name and sleep meditation.  Several appear, I personally go for the beach and the waves.....

 

The poem brought tears here too, a fabulous post. Thank you

 

Try to have a good day all, weather is awful again windy and very wet.  Dog not a happy bunny, he needs to go for a wee outside but just looks at  me with his thirteen year old puppy eyes and tells me " Mummy your are being even more stupid today than normal "

 

Any one considering something nice for lunch, feeling hungry, too tired to think about food and cooking, still got my headache so will have to get hubby on the job again  so tasty easy  suggestions very welcome. In fact forget easy...  so long as it is scrummy, I can supervise lol 

 

Gilly

XXX

 

 

Belinda_F
Member

Re: sRe: January 2021 Chemo Starters

PS, poem brought a tear @Lewy2803 ~ the strength of those words much needed ATM. thanks so much lovely x

just on support, I called Maggie's and they're open! they offer all sorts apparently and have centres all over.

https://www.maggies.org/

and this looks lovely, offer gifts and freebies, which would be really lovely ATM wouldn't it... 

https://www.elliesfriends.org/

Belinda_F
Member

Re: sRe: January 2021 Chemo Starters

morning guys! just a quick BRILLIANT LUCK to you both @Mumboo and @Lewy2803 today! be thinking of you both! and you tomorrow isn't it @donkeywoman ...then just 2 to go if I remember rightly? 

just on coldcap, I use an additional scarf to keep it tight on the bits it's not...and use a medium size inner but pull the straps on outer very tightly, too much so really as uncomfortable under chin. keep going guys, I'm convinced it's helping x

@Lewy2803 I'm so sorry sleep so disturbed ~what time do you take your steroids? I do first thing morning then before 1.30 and is OK for my, very sensitive, sleep....lol on the growing appendages...bet your son really cheers you up with giggles 😂 

back later guys, just wanted to say thinking of you having treatment today Xx 

Lewy2803
Member

Re: sRe: January 2021 Chemo Starters

Oh and one more thing (clearly I am not going to get back to sleep!) ......

when I took my steroids yesterday my son pricked up his ears. He studying a level sports studies. He asked if I was going to grow a cock and balls!!! They are studying use is anabolic steroids for performance enhancement and apparently there are cases where female athletes have started to develop male genitalia ! Well it hasn’t happened yet but I will keep you posted. Not bothered about the balls but a cock would be very handy for peeing when out on dog walks!!

good luck today @Mumboo!

Lewy2803
Member

Re: sRe: January 2021 Chemo Starters

Oh and btw Mumboo, we had a long chat with my sons school. He’s doing A levels this year, or whatever they decide. When schools were open before Christmas we kept him home and didn’t send him in. He felt safer and knowing he wasn’t going to bring anything home to potentially kill me was the best option decided by everyone. Lots of kids were having to isolate or also had shielding family members so all lessons were also online. So although he does miss out on the contact, he’s still attending class. Not ideal but better than going in. Much easier to explain to an 18 year old of course than younger but it might help!

Lewy2803
Member

Re: sRe: January 2021 Chemo Starters

Thanks Mumboo and DW

my treatment is at 1pm better be bloody quicker than last time! Is it #2 for you too mumboo? Great too re cold cap. The wig fitter said it was because the outer cap hadn’t been tight enough but because I couldn’t move my jaw, I don’t think that is the case. Will mention to the nurse!

steroids kept me awake all night ... no joke saw in every hour to 6am. 7am husband comes in, wakes me up to go walk the dogs!! I didn’t go .... ! Will write this and then try to grab another hour or so before shower and arghhh a hair wash!

Will wish you good luck for tomorrow now DW as I feel I may forget tomorrow!

lastly, I just saw this on FB. Seems rather apt. We are all warriors fighting an individual battle at a horrendous time for humanity. Take the little wins, be kind to yourself and post the hell out of your worries on here so we can all help! I don’t bake so these words are my ginger/banana bread!  Take care all. 

Lewy2803_0-1613634061212.jpeg

 

Mumboo
Member

Re: sRe: January 2021 Chemo Starters

Good luck with your treatment today @Lewy2803.  I'm right with you!  Mine's at 10:30. You made me laugh with your Friar Tuck comment because that's exactly how i've been describing myself!!  Not the best of looks!!  Ask your Nurse to grab you a disposable surgeons theatre cap to protect your scalp. I've been trawling through the paxman website & got loads of tips. I'm thinking that i don't think my cap was tightened properly with the toggle that pulls the crown of the outer cap closer to your skull...Also it advised that if you are in between sizes, ie small & medium, to have a medium silicone inner cap, but with a small outer cap. You don't want to go too small on the inner cap in case it rides up throughout the treatment. All worth a try?? Good luck. Be thinking of you.Xx

Am totally agreeing with what you're all saying about lockdown. It has it's positive, but also obviously a great deal of negative & such a shame that every Hospital Trust area is different for what it can provide. 

Although i have days where i feel really trapped & frustrated,  i'm also worried about lockdown ending & my kids going back to school. Me & the hubby have spoken a lot about what to do & there's no right answer, but we're pretty sure we're going to keep them off & continue the Home-schooling until my chemo is finished. Last one due 22nd April so that's a very long time!! So sad that my kids will miss out on seeing their friends & running around, but with 30 kids in each class, that's 60 kids & their families that mine will be in contact with. Just too high a risk while i'm on chemo.

What a tough time we're all having, which is why it's so lovely to hear from you guys as you really do make me smile. 😘 Chin up chickens!  We'll get through this!!!  Xx

donkeywoman
Member

Re: sRe: January 2021 Chemo Starters

Evening all, just a quick one, have really enjoyed your messages. 

@Belinda_F you are going through it  aren't you...quite right you need an extra week to recover after coping with so much this week. Yum to gingerbread. 

@Lewy2803 @my arm is fine after the jab, think I've been lucky. Hope the steroids let you sleep, I start mine in the morning 

@FlorrieBee glad your day has been a bit better 🤞it continues 

@Pesto that research sounds really interesting,  and it's great that you are up for taking part. And I'm really glad you are being offered a bit of extra support, you deserve it. I don't have a breast care nurse at the moment. They explained to me yesterday (when I rang them) that I will be referred back to them after chemo. The nurse was lovely, said it was a daft system and they are trying to change it. She also said I can call them any time. Our Macmillan info centre looks very unwelcoming,  there is someone there, but a rope across the entrance!

Oh well, I just want to get this bit over and done with...

Night all, let's hope tomorrow is a good day. All the best for chemo day @Lewy2803 xx

Pesto
Member

Re: sRe: January 2021 Chemo Starters

It seems so unfair.  From one area to another there is so much difference and support.  Start the questions, make them give proper answers as opposed to fob off re covid..  I do wonder whether some hide behind the mask and covid is the excuse...,

 

Everything so far apart from the reflexology which was hands on at my local Hospice has been done mainly over the phone...

Pesto
Member

Re: January 2021 Chemo Starters

Thanks Belinda.

 

I seem to be in the right place at the right time if one could say that.  I doubt it will me in the short term, but who knows If any one else can benefit, I said from the word go I would consider anything.  John has picked up today the covid jab could be the beginning of a vaccine for cancer....Apparently on Sky internet news.  We are all going through the mill, lockdown in a very selfish way has helped tremendously.  No one can go anywhere at the moment so bad as things are, I dread the unlock when others can continue and I will still have to remain in doors, but that is in the future......... The tick box re side effects has just got a lot longer.

 

Night night all

hope every one gets a good rest at the very least

 

Gilly

XXX

 

Lewy2803
Member

Re: sRe: January 2021 Chemo Starters

Like you @FlorrieBee @I haven’t been offered anything additional. In fact I don’t even know who my cancer nurse is so I am so jealous at the fact that some of you have been offered this. I am going to ask tomorrow!

FlorrieBee
Member

Re: sRe: January 2021 Chemo Starters

Ooh, @Belinda_F gingerbread sounds so good! I've actually had a much better day today  hooray! Got up late morning, helped my one lad with a tiny bit of housework then back to bed lol. Still taking nausea and headache pills but the side affects seem more manageable than round one with the new addition (I've had it for three days, so last one today, fingers crossed for tomorrow but have others to use as well).

You are so right about the additional support,  massage etc, can't help feeling we could all do with a little pampering right now, don't think there is anything on offer locally, or maybe I haven't done enough research. For those where it's on offer, take all the help you can 😊

Big hugs all round for a good restful night xx

 

Belinda_F
Member

Re: January 2021 Chemo Starters

That's really good news @Pesto if something could really help the fatigue it would make a world of difference. What's the drug? An ADHD one? I do hope it you get it and it does.

Your MacMillan support sound very good...all the hands on therapy here has stopped and I would have used it all...think reflexology and all these can make a big difference to how we're feeling and coping. Lockdown is sooooo hard. I'm so glad that support is there for you x

Belinda_F
Member

sRe: January 2021 Chemo Starters

Hi guys from grumpy (I did feel a tiny bit guilty DW but got over it quickly lol) central...how's everyone's days gone? I'm so sorry you're feeling poorly @FlorrieBee and are in bed. I'm not far behind you, I did manage to get up today but was good for nothing yesterday. Did you manage to eat anything at all? I take the med (Aprepsomething) you mention but only at the hospital and for one day after...it's a good one I think. Has it helped?

And great news re: wig @Lewy2803 - that's such a relief it's a good match! and the service was good. and brill you and @donkeywoman and @Pesto have had your jabs, woooooo! one thing less to worry about isn't it but I'm so sorry you've had a palava with yours @Gelbel all you need...not.

and @ jojo1947 how are you doing? send news when you can. Hope you're managing and resting x

@donkeywoman I'm so pleased to hear also you're feeling more yourself and have been out with the animals...I hope you're enjoying the 'now' and normality...those moments are precious and to saviour aren't they. You too still I hope @Gelbel ?

I'm marginally better than yesterday, just feeling quite low and tired of it all now, I guess mini surgery and chemo in one week is a lot and tiredness to be expected. The hospital wanted to me to start my next lot of treatment next week but I've begged a week off or I'd be in the hospital 4 days next week and my MH really needs a break....and I'd be travelling on the tube in my nadir, not a good move. But I clarified and I'll be on pertuzumab/trastuzumab (3 weekly) and Paclitaxel (weekly)...for 12 weeks, omg groan....I literally can't wait until the end of chemo....

How's half term going for the rest of you mum's? @Mumboo  your dream! omg...that's one for the diary isn't it...I hope you've had more rest last couple of nights? BC anxiety hits us from all angles doesn't it...no respite even in sleep sometimes.

so happy @tennisgirl you're doing really well post op. Fingers crossed they opt for the most simple treatment, it sounds hopeful I'd say.

After that big moan, I did actually manage to make my bed today which is the best feel good thing I can do atm, as spend so mush time in it...and! made Nigella's sticky vegan gingerbread and am sending you all the biggest pieces with a huge dollop of your fave ice cream. Hugs all x

Pesto
Member

Re: January 2021 Chemo Starters

Hi all

 

The wig sounds amazing, I hope you will be able to get out soon and show it off.

 

Re heavy arm paracetamol helps immensely, it seems most if us have been done for the moment.  Well done NHS, it a fabulous achievement.  The hamper of goodies has made my mouth water, quiet a feat as at the moment I have no appetite again, lucky if I can keep awake to eat anything so enjoying my banana thick shakes.  They are very addictive.

 

Now some interesting news

My macmillan nurse came last week and due to my fatigue I have been told of a research group countrywide, from UCL London but locally it is being run by my local Hospice, The Sir John Eastwood.  Kat asked if I would be interested and have jumped at the chance.  The paperwork came through yesterday followed by t call today to confirm my interest.  Most of the info is regarding possible side effects, but as I have most of them in every box I can't see a problem ( headaches, nausea, constipation or the opposite, lack of appetite etc ).  The trial is for ten weeks and no-one will know whether I am the placebo or an old favourite drug used in AHD children.  I have to have bloods taken specifically for the trial and blood pressure carefully monitored.  If both those are OK it will a green for go.  Very excited.  I will be closely and  carefully monitored weekly sadly though no group sessions but we all know why.

 

if at the end and I can stop whenever I want to and I really feel the benefit there is a big chance I will be allowed to continue.  Who knows the placebo might work mentally, or the real deal will be brilliant.

 

Only two downsides, my name will not be mentioned in the Lancet ( so no immediate fame nor appearance on the beeb ) although the results will be published possibly in the next four years.  I have take the positive given my horrendous diagnosis and prognosis they at lest expect me to live for another ten weeks.  I will take any positive at the moment

Anything has to be better than spending so much sofa time asleep currently.

 

Apologies for not bing in touch this week but the chemo really seems to taking it out of me this time.

 

Hugs to all

 

Gilly

 

XXX

 

 

Lewy2803
Member

Re: January 2021 Chemo Starters

Hi everyone. Just had my virtual wig appointment and they were amazing!! They had asked for a couple of photos and they matched the colour brilliantly. All wigs are in stock and will be sent out ASAP. I was so impressed. It’s a company based in London and she only showed me wigs that were covered by the NHS. Obv they try and up sell you on products to look after it but I just bought the leave in conditioner as yours can wash it with your normal shampoo. I’m rocking a Friar Tuck look at the moment!! But the consultant thought I’d probably not lose all of it, it just a question now of whether I can bare the cold cap on the bald spot tomorrow!

Had the covid jab last night in my PICC line arm. It’s feeling quite heavy this morning so have taken so paracetamol. How’s yours @donkeywoman ? Also just taken my pre chemo steroids.

My hockey friends  sent a care package today full of soups, smoothies, peppermint tea and other lovely bits and pieces. So sweet. I am so blessed with friends and family. speak to you all soon xx

FlorrieBee
Member

Re: January 2021 Chemo Starters

Many thanks @donkeywoman  My wonderful husband keeps popping in to see if I need anything, haven't felt like eating much, have had a bit, but I am trying to drink plenty.  I was only a little bit sick yesterday and have only had nausea today and heady, so much improved from last time round thank goodness.  But definitely staying put until I'm feeling better.

I actually made pancakes on Sunday as I had a good day and fully expected to be feeling rubbish today, so pleased I did, always enjoyed by the teenagers and even I enjoyed mine, lemon and sugar every time for me! They definitely would not have tasted good today.

First day of steroids, so sleep will be interesting tonight.  Hope you all get a good night xx

Pesto
Member

Re: January 2021 Chemo Starters

No pancakes....  tick.. daughter in law to be nicked the pan...  hubby is delighted not his head id dinner.

 

At least the chickens are happy, ell done you !

 

Oh

forgot on last post big hugs to all

 

Gilly

 

xxx

Pesto
Member

Re: January 2021 Chemo Starters

@Lewy2803   tick 

donkeywoman
Member

Re: January 2021 Chemo Starters

Evening all,

@Belinda_F  - sorry, I wrote guilty yesterday, when I meant grumpy! I hope you don't feel guilty... no need I am sure! Really hope you are feeling a bit better today?

@FlorrieBee sorry to hear you feel so rough, that sounds really hard. But staying in bed sounds sensible - do you have someone to bring you drinks and food? Hope you can get some fluids down at least... Poor love.. Fingers crossed things start to improve very soon.You are right, wait til you feel a bit better before chasing the vaccine. 

@Gelbel  - ugh, how frustrating for you. It's annoying, you should clearly be on the CEV list, but if you've not had the letter I guess the computer will continue to say no?? As if we don't have enough to contend with... And such a shame, because once you can get a jab booked, the process seems really efficient and smooth. I went to a hotel in Chesterfield, everyone very friendly and calm, was jabbed by a pharmacist. Really hope you can sort it out soon. @Pesto you got yours sorted by persevering, didn't you? 

@Lewy2803 you sound very organised - I love to tick off a list! And no cricket in the morning, so hope you can sleep! All the best for Thursday, I'm a day behind you. 

Think it's an early night for me. I had good intentions to make pancakes this evening, but once I'd tidied the kitchen, I had run out of oomph.. But did manage to clean the chicken house a bit this morning - shows where my priorities lie!

All the best for this evening xx

FlorrieBee
Member

Re: January 2021 Chemo Starters

Only a quick update, will hopefully update myself on all posts over the next few days.  Got home from round 2 yesterday, was in bed within an hour, headache and nausea, still in bed now, can't believe how debillitating it all is, just going to the bathroom seems a huge effort.  Have to say though, not as extreme as round 1, they have added Aprepitant to my meds (and reduced chemo dose) and it has certainly made things easier this time, so that is definitely a positive!

Pleased for those of you that have had your covid jabs.  It struck me on the news in the last couple of days they are saying all top 4 priority groups have now been offered a jab, I have not heard a thing from my GP, or anything in writing to say I am in the ecv group, although the hospital did tell me that from day 1.  Think I need to contact the GP surgery but I need a little energy for that conversation so will do it over the next few days.

Best of luck to those about to have treatment this week and hope everyone else is doing okay following treatment, big hugs xx

Lewy2803
Member

Re: January 2021 Chemo Starters

Covid jab done
Bloods all ok
Covid test negative
So all set for Thursday afternoon
Yes wee infection all sorted now thank you. I too had a big issue getting onto the ECV list. GP said I was on it, 119 said I wasn’t. Anyway, I kicked up a fuss and a lovely doc came to my home and did the jab today. 
back on the steroids tomorrow so bang goes the sleep 🛌 

love to everyone 

Pesto
Member

Re: January 2021 Chemo Starters

Hi all

@Gelbel 

same problem with booking my jab.  An absolute nightmare.  I ended up going on a NHS web site and reading the " helpful notes "  At the end I was asked did I find the info useful....  I ticked no along the vast majority of others.  Immediately I got a different screen, a big box asked for my NHS number....  continued and five minutes later was booked in at a centre I wasn't aware of locally.  That was on the Wednesday and I chose the Saturday as it worked with my week off.  Got to chooses either am or pm too.  Booked and it was brilliant.  9 minutes from start to being back in the car though I wasn't driving.  Sorry can't remember the exact site as I had looked at so many.  Everything else I had tried to book blocked me because I am under 70 yet three letters had invited me for the jab.  It was ludicrous.  The place I went too was very busy yet I know of no one else who has been.  The last letter had specifically mentioned I must book because I am classed as super vulnerable...  I had even phoned our council covid hot line and like you got nowhere.  have a play around with some NHS sites........

 

I wish you luck and hopefully can be seen as soon as...

 

Gilly

 

xxx