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January 2021 Chemo Starters

Lewy2803
Member

Re: January 2021 Chemo Starters

Hi, how’s everyone doing?

I had an exciting day out today as when I went for my PICC line flush they realised it was blocked. 6 flushes later, still no movement so off to a dif hospital to have some drugs injected which thankfully worked. It’s only got to last another 5 weeks.... fingers crossed. 
I know Tennisgirl is having treatment this week and Belinda on Friday - anyone else?

Gelbel
Member

Re: January 2021 Chemo Starters

Thanks for asking @Belinda_F. I'm ok... with an ish.  Seem fine post (should be by now) steroids. I slept OK last night. No need for anti-nausea pills after a couple of 'just in case ones' on Friday night and yesterday morning. I am a little bit windy - or as hubby says the field of sheep (from EC indigestion) have gone to be replaced by a tiny frog following me around. 😲🤣

Had a little walk to the local shop yesterday but was a bit breathless. I know some of it is down to struggling with the never ending dripping nose when out in the very cold. Some has to be low red blood cells - the insides of my eyes are very pale, I look like I have white eye liner on and my lips are a bit pale.

Last week I had a blotchy face - we have recently changed fabric conditioner and the washing stuff I like to use for bedding. I'm not usually allergic to stuff but who knows what changes chemo decides to make on you? It could've been that or I had quite a few days with make up on. It was less noticeable on Friday yet was back yesterday and I was quite flushed in my face and chest late yesterday afternoon and evening. It's wasn't itchy at all. All gone except the blotches this am.

Duly noted for my telephone check up on Tuesday. If it returns and/or itches I will call the team before that. I've been using very mild face/body stuff since yesterday's 3S's. Well 2S's as no shaving needed! We have tons of Benadryl if needed - hubby has to take for prickly heat caused by the sun. And of course, sometimes it's a bit mind over matter!

I need to remember I had a Biphosphanate infusion too.

Thanks to my calcium and vit D tablets,  my nails are very long so I need to trim them before I can check my dexterity doing up and undoing shirt buttons. A good side effect of those tablets is my hair is growing - not all over but the ones that are there are about 1" long. I've the tiniest fringe - could nearly do a 70s skinhead style.

And chemo brain rambling obviously!

Thanks for the heads up on the first dose load - I'll ask about that if it's not mentioned on Tuesday's call. Overall, loving waking up feeling 'normal' (think EC week 3) on Pax... long may that continue. 🤞

My thoughts are to do reduced hours this week as I do feel up to working. See how it goes and do 5-6 hours max. I've only got 3 1/2 days as I'm seeing the BC physio on Tuesday am due to some cording my ANC arm that won't shift with the post op exercises. I'm also thinking of getting my bloods done Thursday as I am not a hang around for an hour type before chemo (plus the pharmacy wait) on Friday.

I'm hoping for a little walk around the park with a pal later, though the weather looks to get wet/snowy from 1pm. Bit like yesterday - 3 hours of sleet and snow that settled for a while.

I'll take a look at that book too @Mumboo - sounds really interesting. It's so difficult to explain chemo and it's effects to others. This is why this forum has been a godsend to me.

Massive 👏 to those of you with just a few or two cycles left. I'm happy to say 8 which is really 2.66 full doses. 😜

Happy Sunday everyone - may you have a comfortable, warm day.

Love AnGELa x

 

FlorrieBee
Member

Re: January 2021 Chemo Starters

Yes @Belinda_F two left, yippee! No5 one week tomorrow, I think that will be an amazing point to reach knowing just one left to go. That said, I will be a little anxious about the horrible side affects, but hopefully will be slightly better prepared so they may be more manageable, fingers crossed. 🤞 Good luck with your scan tomorrow. 

Lovely seeing the garden springing to life, we have a couple of small magnolia trees that have looked so pretty but now going over. One of them is in a large tub so we moved it to outside the lounge doors so I could see it even when stuck indoors, lovely. Another little goal I have set for myself, we have some woods nearby that have stunning bluebells each year, bit of a trek to get to them but hoping I will feel like it once they are out. Love being outdoors, has a real feel good factor for me!

I'm already thinking about the gap between May and June, between chemo and surgery, may be possible to at least fit in a couple of day trips to the coast (couple of hours away), would love a bit of sea air and fish and chips by the sea! Don't really want to be there though with hundreds of others. How's everyone else feeling about making plans? Great to have things to look forward to but we obviously need to be comfortable doing it.

Thanks @Mumboo for the book recommendation, I've ordered it from Amazon, love that the proceeds go to charities including this wonderful site, so will look forward to reading it this week.

Hope it is a gentle Sunday for you all xx

Belinda_F
Member

Re: January 2021 Chemo Starters

Hi guys, how's you all doing? I hope you've managed gentle weekends feeling as OK as possible. 

@Gelbel how you doing post first pax? think you're possibly on a loading dose first one, it might be lower next week? I do hope you've been feeling OK? it took a few treatments my end to iron out my side effects, although as said, they weren't a patch on those from EC.

@

@Mumboo thank you for the book recommendation! I'll look it up, and blog too. I've read a few blogs, I'll post them later, which I've found very helpful, isn't it comforting to read yourself almost on the pages. what in particular resonated for you? 

@donkeywoman oh no re not knowing where you were in hospital!!! chemo brain had kicked it there hadn't it... although I wonder too, you're very near end of treatment... maybe your brain is computing this and is already putting the hospital behind it? blocking it out? that must've been quite odd though... but you're not alone... I literally don't know where I am in my own home sometimes! my brain is mash sometimes... 

@Lewy2803 two more to go, wow!!!!! you're on countdown now...? I've got 6 weeklys left and thought I'd start countdown at 4...

@FlorrieBee does that mean you too have 2 left? how are you doing today? I hope you managed to get in the garden? any energy I have I'm out there... love gardening and pottering out there. it's seen me thru some very difficult times and is hugely therapeutic for me. is it starting to bloom now yours? but all sympathy being very active usually and not being able to keep up the pace. you will again... but it's hard isn't it. I was getting so puffed doing the smallest walks, made me cry... 

I'm doing well this weekend, nausea only slight, belly bad but not unmanageable... had echo last week and whilst my heart has improved, it's not got worse. seeing Dr Wed this week, and got ultrasound tomorrow which is always a bit nerve racking. 

just wondering how Erin and pesto are? got the usual irritations trying to tag I'm afraid. 

sending hugs for a restful Sunday guys. sun's out, woo-hoo! x

Mumboo
Member

Re: January 2021 Chemo Starters

Morning ladies, 

Hope you're all doing ok & managing to cope with all these side effects. 😘

Just a quick message to recommend a book that i have just finished. 

It's called "Tea & Chemo"  by Jackie Buxton. 

I bought it as i started chemo but just didn't feel i wanted to read anything about side effects while i was living them, so i left it sat on my shelf. For some reason i picked it up the other day & i read it in 24 hours! Could not put it down!  It's as though it was all my thoughts written down in black & white!

The author was diagnosed primary breast cancer & would write blogs all the way through her treatment. This book is pretty much a combination of her blogs. 

I didn't find it depressing in the slightest. It also had lots of links & websites for help & guidance, should you need anything. Very inspiring read. 

Anyway,  book nerd finished! 😂

Hope you all manage to enjoy a bit of sunshine & fresh air today. 🌻☀️ 😘Xx 

 

FlorrieBee
Member

Re: January 2021 Chemo Starters

Good that they are checking @Lewy2803 as always better to play it safe, does seem to take ages for the results.  Fingers crossed for you! xx

Lewy2803
Member

Re: January 2021 Chemo Starters

hi @FlorrieBee i have a family history of BC and prostate cancer through my fathers line so they wanted to test. they still think it is unlikely especially as I am HER2+ but worth knowing if anything for my children's sake. it takes ages for them to contact you in the first place and then once the test is done - 12 weeks for result!

FlorrieBee
Member

Re: January 2021 Chemo Starters

Hi @Lewy2803 yes we are pretty much same stage in our treatment. It took until day 11 to feel better with the Docetaxel and Herceptin but thankfully I also got out for a walk yesterday, made me feel so much better! I absolutely hate been inactive, I was relatively fit and healthy prior to all of this, cycling is one of my main hobbies and I am really missing my bike. Have certainly not had the energy for that so my walks will have to do for now. I did a 100km ride for Prostate Cancer at the end of last summer, so will have to think about doing something in the future for this wonderful Breast care now site, it will be something to aim for and work towards once through all of this. Good to have goals and all that! 😊🤞 Do you mind me asking Lewy, what made them decide to test for the BRCa, or do they do that automatically in your area? My Oncologist gave me a form for gene testing and I haven't heard yet if they think it's necessary to do. 

Hope all goes well for yours and you are able to use that info to help decide on surgery.

Windsor must be a beautiful area to live. I imagine everyone being very saddened, but what a remarkable life and legacy he leaves.

How's everyone else doing today? Hope it will be a kind weekend for you all xx

Lewy2803
Member

Re: January 2021 Chemo Starters

Hi everyone  - just catching up with all your messages  I’m doing well after #4 last week and managed a nice walk yesterday . Great to think only two more to go ... but then Herceptin for a year. I think we are at the same stage @Guest user? 
one piece of news is that I’m waiting for the results of the BRCa test which will effect the surgery I have post chemo. For some reason it takes 3 months to get the result?!!! Weird  

@Gelbel I have to present in my job too and I know there is no way I could do that at the moment so wigs off to you! I love doing it though and can’t wait for more normal times (for me and the world) when those presentations can start again.

I live in Windsor ..... it’s very somber at the moment. I think his death has effected people much more than they ever thought possible. I met him a few times and he was inspirational. But what a legacy he has left with all his charity work. 

love to everyone  hope yesterday went ok @@Belinda_

 

Gelbel
Member

Re: January 2021 Chemo Starters

Hello everyone,

I hope you are all nice and warm. It's been so cold up here. Not at all comfortable hanging around for training  to end and then, filming some of the rugby guys on Wednesday evening. I think lockdown's made me a wimp - I even had to put a bobble on over my wig. And we know how hot they are! I suppose chemo made me a bit susceptible to the cold.

@donkeywoman I had my first Pax today. @Belinda_F the dose was 167 mg in about 550 ml.

My appointment was 15:45. I was called at 11:30 to ask where I was- no one had told me/no letter to say it'd changed to 11:00. Thank gawd it was my pal who called as I was a bit rude about the admin. 🙊 I got there at 12:30.

I had the same 8mg steroids but.... #DrumRoll none to take home. 👊 The lovely nurse put it in so slowly too. So hopefully much less reaction all round. 🤞 I had IV Piriton that I wasn't expecting. I didn't have a sickness brick nor anything via IV. I also had Biphosphanate.

I left at 16:20.

Apart from weeing for England - all the above fluids plus 2 flushes. I felt OK - good enough to drive home. Another 👍

I did feel slightly queasy an hour ago so dropped a Metoclopramide. Having said that I've not eaten much. I don't have anything to eat until 12pm on normal working days so quaffed a quick sarnie before I left for the appointment. My team at work were having a virtual leaving do for our head of department. I did join the chat for a while. Lucky people were all quaffing cocktails - even the girls in the USA. 😲 I shared a photo of my NHS cuppa and biscuits. 🤭

I did a food order in a rush last night as I saw Waitrose had delivery slots and I couldn't be bothered to go to Aldi... so I've a biryani. #ReachesForTheIndigestionTablets

Thank you everyone for your lovely comments about my presenting. 😳 Honestly it wasn't much, I'm used to them albeit until now with my own hair and right boob. 🤣 I don't mind them. When I was on EC my 3rd week was always BAU so, apart from the fact I had to do it with a wig on and falsie, it was almost a bit of reality for me. It helped that some of the guys recently saw me wigged up on calls. 

I hope everyone else who had chemo this week is as warm and comfortable and safe as possible.🤗 I'm sorry I can't remember who has what when - my brain just can't compute it. 🤯 ☁️ 

I wish you all the weekend you wish yourselves. I want to give the Queen a hug, poor love. 😥 

Love AnGELa x 

 

 

donkeywoman
Member

Re: January 2021 Chemo Starters

Hi all

@FlorrieBee  and @Mumboo  I'm with you on the admiration that anyone ( @Gelbel for example) could stand up and speak to people - today I went to the hospital for a blood test and forgot where to go! I go there all the time, but just stood in the corridor feeling lost until someone helped me out. Oh dear... Hope you managed to get your walk in @FlorrieBee ? I've been trying to up my steps (from a low start) daily, but today I'm too tired so will get back to that tomorrow. Excellent activities for the girls @Mumboo ! Just another week of holidays...?

@tennisgirl glad you are able to move on and chemo will get going. I also have a lot of weight to lose and was doing okay before BC struck. But I have actually lost a bit over chemo, not deliberately, presumably just because my appetite has been so rubbish.. I'm sure a dietician will be helpful and there are various threads on here too. I decided to not think about losing or gaining weight during chemo and just get through it. 

@Belinda_F hope today's chemo is going/has gone smoothly? And @Gelbel sorry, I have forgotten when you start your new regime - fingers crossed it goes okay 

Hope everyone else is doing as okay as possible and can soon enjoy the spring. Love the sound of local orchards. xx

FlorrieBee
Member

Re: January 2021 Chemo Starters

Thanks @Mumboo I have been better this last couple of days. Still achey, tired, heady but all manageable. It's really strange as I thought I was sort of doing ok, then day 5 it hit me like a ton of bricks. 😱 I actually thought I had put my back out it was so painful, but pain in lots of places. I take cocodamol but like you have to balance those with other meds and was conscious of not taking too many. I guess next time I know what to expect and will be better prepared.

I don't know about everyone else, but I am so relieved when I hear that some of you on here are reaching the end of this chemo phase, you see, we can do it ladies and we are all getting there week by week! 💛🎉 @donkeywoman has finished this bit, hope you are feeling better now and all set for bloods? @Belinda_F good luck for today, hope all goes well @Mumboo last one in two weeks, it has to feel good that the chequered flag is in sight?!? 🏁 Realise we are all at different phases with further treatment but I am sincerely hoping that following surgery in June, the 13 months of Herceptin are totally doable compared to this chemo. As rubbish as this last round was, I only have two more to get through, so I think I've got this! 💪

What I have been missing for the last week is my walks. Just have not felt well enough, or had the energy but determined to get out today. It makes me feel so much better on every level of I can. The area we live in has lots of orchards, they are going to look absolutely gorgeous when they blossom and that is definitely a good incentive to get out, really uplifting! 🌼🌸🌼

Everyone has their own little wins, some days I think getting out of bed and making it downstairs as a win, today I want it to be a 30 minute walk so well see how that goes 😂 Full of admiration for those of you with young children, what a balancing act that must be and @gelbel, standing up to present, not sure i could even present to my husband and teenagers what's for supper tonight let alone stand in a room full of people, just wow!

Anyhow, I've rambled long enough! How is everyone doing, pesto, erin, lewy? It's been quiet on here, I hope some of you have had a little normality and been doing other things, but for those not feeling great, take it easy.  I don't seem to be able to tag now and there are lots of you I've not mentioned but good luck to anyone having treatment in the coming days and hope the weekend is a kind one 😊 xx

Mumboo
Member

Re: January 2021 Chemo Starters

Hi ladies, 

@tennisgirl firstly..well done on losing 12lb prior to diagnosis!  That's fab! I can totally understand why you're concerned about any possible weight gain during treatment. It's another one of the fears we all have, i think.  Definitely speak to a dietician. This is the time to take all the help that's on offer! 

I'm super impressed @Gelbel with your being able to stand in front of a load of people & give a talk! Absolutely brilliant! My chemo brain means I struggle to have a conversation using all the right words sometimes! I often end up just pointing or doing some weird charades! 😂 Best of luck with your first pax treatment today. Hope all goes well. 😘

@FlorrieBee how's your aches & pains now following your Docetaxol?  I'm a week into my 2nd Docetaxol & have coped so much better this time! I took cocodamol as soon as i felt first twinges & made sure i had it 3-4 times through out the day. Did that for a few days. So much more manageable. Apparently epsom salts is also really helpful, but i'm not a bath girl so i didn't try it.

Juggling the treatment for side effects is quite tricky. I found that both the chemo & the pain relief made me constipated, so had to factor in meds for that too! Combination of Senekot & dulcosate & lots of fluids meant it was so much better this time. It's a constant juggle though isn't it!! I have just one more left, in 2 weeks time. 🎉 

Hope all you other ladies are ok & anyone juggling kids & chemo.. I feel your pain! Got another week of the Easter hols & we've already resorted to making robots out of cardboard boxes (which my 8 year old sits in every night to watch tv.. 🤦‍♀️) & roman centurian helmets from Easter egg boxes!  😂 

Sending you all lots of love 😘

Xx

 

Belinda_F
Member

Re: January 2021 Chemo Starters

hi @tennisgirl I haven't but I think that's a good idea and one I'm sure the hospital will support it....I've put on some weight and the steroids do make you eat for Britain... I totally understand you not wanting to put the weight back on... although on the other hand, it's not the time to deny yourself comfort food... (she says, shoveling sweets and cakes into my mouth... )

ask anyway, I reckon they'll support you with that. 

what's your start date? do stay here won't you, for support... but there will be an April starters group too if you want more current support as it were, from women on the exact same page as you... x

tennisgirl
Member

Re: January 2021 Chemo Starters

Hi all

something that has been on my mind but keep forgetting to ask - Has anyone asked to be referred to a dietician? I lost 12 lbs before diagnosis and have a lot more to lose and I want to try and keep losing in a healthy way during chemo but obviously realise it depends on how it goes. I really cannot afford to put more on and dread it as I hate the way I look anyway.

I was told I may gain a bit because of steroids etc!! So just wondered if anyone else has worked with an NHS dietician through this.

Thanks! 

Lewy2803
Member

Re: January 2021 Chemo Starters

Oh that’s excellent news. I feel your frustration- I felt like I was waiting for ages. I’m doing ok. Chemo isn’t nice but totally do-able. You’ve so go this! How’s the weather in Scotland? Cold I bet!!

tennisgirl
Member

Re: January 2021 Chemo Starters

Hi Lewy

Off the Pico now and Consultant is happy it is only superficial so chemo is still scheduled for next Wed - only iodine and a small dressing on now.

How are you getting on? x

Lewy2803
Member

Re: January 2021 Chemo Starters

Hi everyone - so sorry for radio silence. I’ve been trying to quietly just get on with things since #4 TC last week. But through the worst now I think - queasy with joint aches but not too bad. so pleased 2/3 way through now. 
@tennisgirl how is your wound? Any update on when you can start chemo?

Belinda_F
Member

Re: January 2021 Chemo Starters

hi guys, lovely to see your messages as ever... 

so sorry you've been feeling rubbish @FlorrieBee. Others also report a lot of aching and pain with doca... how many more have you got? was it severe? do speak to Onco about it... did you take pain meds? I know when I was having the filgrastin, pain meds really helped... I do hope last couple of days have been easier for you?

@Gelbel way to go on the pax planning! and getting the steroids reduced... result indeed! and if I'm anything to go by, low dose pax is seriously not a patch on the horrid EC... I've now managed to get my sickness and really bad belly under control, and so last treatment was so much more straightforward...I have energy and can do things from day 2 no problem. I do hope you're the same. I do have a face full of spots though...not sure why. will ask at hospital tomorrow... look appalling but who cares I say. 

things with me are OK. looking. forward to half way thru this second chemo lot next week... my god I can't wait to finish!!! @donkeywoman not long now for you!!!! woo-hoo!!!!! I remember you said that you look at older threads sometimes, and I too did, it was so amazing to read November starters talking about finishing their chemo...god, what a feeling that will be DW... just get thru your transfusion, and come out feeling a million dollars!!!! 

how's everyone else? it's a bit quiet here, hope everyone is doing as OK as you can. As always, thinking of you all, sending hugs, strength and flowers Xx 

Gelbel
Member

Re: January 2021 Chemo Starters

Hi @donkeywoman - it was not so much a talk as a "this is what we've got planned for our social media campaign, this is what we want you to do and this is when we'll do it". Awkward going first as it was their first meeting so I had no idea of how the guys are presented to - I think I waffled for 5 minutes and a question I asked was met with blank faces. Hey ho!

Tomorrow will be fun - I am back to do some filming.

Sorry to hear you and @FlorrieBee haven't been feeling good. I hope you are both on the mend.

I hope everyone else are all feeling OK (or as well as you can be) and had a lovely, if cold, Easter weekend.

I had my pre-Pax check-up earlier. Dr listened about my steroid reactions and said they were not acceptable. #Result However, as Pax is new to me he will prescribe the full dose for my first session on Friday and then look to reduce depending on how I am with the chemo. He assured me it will be much less than for the EC and the amount I take at home will be too. Again no injections nor Priton (thank god) or other stuff to administer myself nor be given on the day other than the huge anti-nausea tablet 30-60 minutes before the chemo's administered. Seems we have it easy in Leeds compared to some (most?) of you.

He was lovely in that he said that I was doing very well and he was looking at my hair to work out if it was mine or a wig. Bless him - I saved his embarrassment and said it was a wig.

We did talk about a Picc - we'll see how my veins cope. And the good news is, I will have telephone check-ups most weeks rather than having to go hospital. I will have face to face appointments after the 3rd and 6th weekly cycles. It does mean my bloods will have to be done before each of the other cycles so some hanging around before sitting in the chair.

I am going to have my 2nd biphosphonate this cycle too. I did question it and he understood my reasoning but as I'd had no side effects, I'll have it.

There was a hell of a queue for bloods this afternoon - catching up on the Bank Holiday I hope. My pal said that it was madness today.

So Friday. I so hope I'm OK on Pax - dreading feeling pants until June. I won't - be positive!

Love and hugs.🤗
AnGELA x

 

donkeywoman
Member

Re: January 2021 Chemo Starters

Hello all, I've been a bit absent last few days, but coming back to life now 🤞.

@FlorrieBee sorry you had a miserable weekend,  aches do seem common with Docetaxel,  though I've been lucky and mainly avoided them...hope you soon start recovering and can rest up til you do.

@Gelbel well done you for the thing you went to, were you giving a talk?that is very impressive,  you felt the fear and did it anyway 💪. Hope it has given you even more confidence? 

Hope everyone is doing as well as possible and maybe managed some chocolate? I've had gut issues so my eggs are waiting for me...xx

aqua76
Member

Re: January 2021 Chemo Starters

Jumping in from November starters here 

those are docetaxal side effects. I’ve just finished my chemo, and generally 2/3 days after I get all sorts of bone/muscle/joint pains. Tend to jump into bed and switch electric blanket on and take some painkillers. Sometimes paracetamol or ibuprofen helps, sometimes I take a codeine

def chemo related. 
they only last couple of days and normally worse at night. 

FlorrieBee
Member

Re: January 2021 Chemo Starters

Pleased you are doing ok @Belinda_F I'm sure the weather helps, yesterday was a beautiful day here.

Really hope everyone has had a better weekend than mine! Thought I was doing ok after first round of Docetaxol and Herceptin on Monday. I spent 1/2 your in the garden on Friday putting a few plants in pots, Friday night started getting really uncomfortable, really bad lower back pain, achey legs. Not sure if I tweaked something while in the garden but have had a miserable weekend in pain, started to ease a little yesterday and I did have some sleep last night, so that's a positive! Just very tired now, still achey and blurrgh..., another low key day ahead for me!

How is everyone else doing? Hope today is a decent one for you all 😊 xx

Belinda_F
Member

Re: January 2021 Chemo Starters

hi everyone, how you all doing? I'm day 4 after taxol, all OK... ironed out tummy problems this time which is a relief! and more energy...been busy in the garden. how you all? Xx 

Gelbel
Member

Re: January 2021 Chemo Starters

Thanks @Belinda_F 

Not sure of dose yet - just told I was going on it when Dr called to move too early appointment. Good to know about how it happened for you... gives me some ammo to chat with. x

Belinda_F
Member

Re: January 2021 Chemo Starters

oh wow @Gelbel well done for doing the presentation!!! I bet you were brilliant... and it's another big tick off list, getting out, doing public work, way to go you!!!

re Pax, what dose will you be on? I think they do a larger loading dose first one, and steroids for the first 3 and then if no reaction, they might remove the steroids, mine have been... I'm on 135 dose wise...

I've had a busy day in the garden... good to get out, even if chilly until the sun came out... hope everyone else's days have been as gentle as possible Xx 

Gelbel
Member

Re: January 2021 Chemo Starters

@donkeywoman congratulations on finishing your chemo. A massively wonderful milestone. I know there's more stuff to come butthat's the biggest fattest tick in a box ever. ✔🎉🍾

@Belinda_F I start Pax. next Friday 9 April through to 4 June. It actually doesn't feel too long. I'm lucky in that we're not that far away from the hospital. I just hope I'm side effect free to take myself for check-ups/bloods, even treatment if I get less steroids. After my 1/2 dose reaction, I'm now nervous how about 1/3 dose will be - not much difference in amounts. I hope the amount they whack in ahead of treatment is much less. 

I hope everyone who had treatment this week is feeling comfortable and as side effect free as possible. 🤞

I went out, out yesterday evening. Even put low heels on. 😲 Me and 47 (extremely fit young) men in a room. 😛 And I had to present 1st. Nice... I'd been last on the agenda. It was only for a few minutes though.
 
I was dead nervous as it was the 1st time going out and being in one place since my Mx or wigged up for any amount of time without a wing (wo)man to back me up or to a safe place like hospital. At one stage I was convinced my wig was falling off... it wasn't obvs. Bit like dreaming you are naked in front of a crowd. 😰
 
It did get me thinking - my prosthetic is so heavy, I'm going to have a think about a recon. I'll end up with a bad back at this rate. Not going to waste any brain energy on it until the autumn though and if I do might aim for next summer. We'll see.
 
I hope you all have relaxing weekends. 🤗 Stay warm! It's absolutely Baltic here.
 
Love AnGELa x
Belinda_F
Member

Re: January 2021 Chemo Starters

hello everyone! how's everyone doing today? sorry I've been a bit quiet for me, had such an up and down week, mostly down... I'm with you all on the easing of lockdown being hard for us ~ the world is getting back to the new normal slowly but it's not like that for us... we can't, for now...it's hard isn't it. 

@Gelbel great news re weekly D! (or is it P?) I think compared to 2 or 3 weekly, the side effects are significantly less... the only ones I get are bad belly, and I do mean bad... and nausea, but that's been sorted with aprepitant. when's your first one? I've done 5/12 now so half way next week. going to hospital twice a week not much fun but none of this is is it... 

@FlorrieBee so so lovely to read your posts...I think it's the ondansetron causing the constipation, I had to stop taking it due to that... 

many of us had treatment this week, yesterday hey... I hope everyone is doing as OK as can today? it feels like we're old hats at this now doesn't it... and it's so brill @donkeywoman you've now had your last treatment!!!! ding ding ding ding ding!!!!! (did you ding the dong)? but it's tempered I know with the transfusion next week, oh hoe, it's never easy is it... how long will that take? 

so lazy day today, will make a cake and garden probably. chilly in London... hope warmer where you all are.  hugs all Xx 

FlorrieBee
Member

Re: January 2021 Chemo Starters

Hope you managed even a little sleep @donkeywoman and everyone else? I did get some last night, even if just a little, best night I've had since Monday. Chemo done is such a milestone, hooray, so pleased for you! Understand you not feeling like celebrating yet but get the next couple of weeks out the way and I'm sure you can start to feel you are on the home straight. Hopefully the Herceptin will mean kinder times ahead once it is just that 😊💛 

That's certainly what I'm hoping for having just had my first Herceptin. Two more rounds of Dox, surgery June, 12 months of Herceptin so fingers crossed it gets easier.

Hope everyone has an easy Easter weekend as possible and feels up to eating an Easter egg or two, think we deserve a few treats! I definitely plan to, for some reason chocolate still tastes good! Damn Murphy's Law, why can't it affect our taste so we go off all the naughty stuff!?! Think I'm going to have to try a couple of walks this weekend to at least use up a few calories! 😂

Look after yourselves and hope you all have a decent day, take it easy. 😊 xx 

 

donkeywoman
Member

Re: January 2021 Chemo Starters

December not development! 

donkeywoman
Member

Re: January 2021 Chemo Starters

Evening all, hope those who have had chemo today are feeling as okay as possible this evening. 

I had my last chemo today, phew. Doesn't really feel over as I have a blood transfusion week after next, then the Herceptin jabs until Development... but I'm sure in a few days I will feel more positive. 

Off to bed now, not expecting much sleep, but will be good to get cosy.

Night night 🥱

Lewy2803
Member

Re: January 2021 Chemo Starters

No sleep ... bloody steroids. Good luck all having treatment today!

FlorrieBee
Member

Re: January 2021 Chemo Starters

That's great thanks @Mumboo, it's just another little bit of reassurance in addition to the mask isn't it. I also hadn't thought of my one lad using it for College, that's a great idea! 😊 xx

Mumboo
Member

Re: January 2021 Chemo Starters

I've just messaged my friend to ask for those jelly beans!  Thanks @Gelbel

The nasal spray that we're using is Boots Dual Defence nasal spray. My kids use it before they go to school & i use if going out, even though i have my mask!  Glad to hear you're doing ok with your Docetaxol @FlorrieBee

@tennisgirl sorry to hear about your chemo being delayed. Must be so frustrating. If it's any help, my chemo started almost 2.5 months after my surgery. Delays & Christmas got in the way!  Dr said that as long as it's done within 3 months of surgery, that's what they'd prefer. Doesn't help when you just want to get on with it though!  

Hope you all manage to enjoy a bit of sunshine today. 

Xx

 

FlorrieBee
Member

Re: January 2021 Chemo Starters

Good luck for treatment today @Lewy2803 and anyone else in for this week? It will be a good feeling thinking you are down to 2 left after this one! 👍

I'm almost too afraid to say i had a decent day yesterday after #4 on Monday, better than I expected anyhow. But then I seem to recall someone saying the full effect of the Docetaxel kicks in after the steroids have finished and I have 5 days of those, but I may have imagined that, not sure? Not much sleep so tired, but another beautiful day is forecast and I have heard the birds chattering since around 5.00am, so little things to make us feel better and think of brighter times ahead. 🌻🌞

@Gelbel Thanks for the sweet tip, may have to try those. Exciting having a new car and always good to have something to look forward to.

@tennisgirl I am the other way around having chemo ahead of surgery, so not best placed for advice, but imagine it is important to heal prior to the chemo, best of luck for everything healing nicely and now going to plan for you.

Quick question, I remember someone in the group saying they used nose drops, or spray, for added protection against infection when going out, I can't remember who but wonder if you can advise what you use?

Hugs all round for everyone, hope today is a kind one xx

tennisgirl
Member

Re: January 2021 Chemo Starters

Hi

so chemo was due to start yesterday but was delayed by two weeks. The non - cancer boob was also lifted and reduced on 26th Jan but the wound underneath keeps leaking. I have had about 4 Picco’s so far and antibiotics this week just in case.

This afternoon the consultant said she thinks we are on track for the rescheduled chemo date and it looked good. It was feeling good too. Now however tonight it is feeling stingy again and I noticed some more weeping on the dressing.

I am terrified chemo is going to be delayed again. It’s been 9 weeks since my surgery 😢

Gelbel
Member

Re: January 2021 Chemo Starters

I'm joining the weekly Pax brigade, starting 9 April for 9 weeks.

I didn't have my onc appointment today. One of the Dr team called a few hours before my appointment time (just as I'd left to collect the car) and said that unless I had in-the-moment side effects I needed help with, it would be a waste of my time as I'd need to go next week for bloods ahead of the chemo. So we rescheduled to next week but he did confirm the Pax and noted my major steroid reaction/concerns. He assured me that even 1/3 dose will be so much easier. I explained 1/2 dose wasn't! Anyway he agreed a big discussion is needed. I'll see him rather than my actual consultant as she has another clinic on Tuesday - seemed very switched on. I need to ask my chum if he's as dishy as he sounds!

@Lewy2803 I was very self-concious about my wigs. Can you do a few video calls with trusted people? That's what I did to help ease me in. Then meet those people for a walk. With lockdown easing could one/they meet at yours for a walk round the block so you don't have to set out on your own? 

Lots of love to everyone. 🤗 May your bowel problems sort themselves out! 🤭

Oh, oh, oh. I forgot. Aldi Jelly Beans Sours. #JustSaying. OK so I've made my tongue a bit sore from them but they work better than frozen pineapple for a chemo mouth - IMHO.

Love AnGELa x

PS. I'm in love with my car! 😍

Lewy2803
Member

Re: January 2021 Chemo Starters

@Erin 35 @Your post rang true with me too. Lockdown easing means more exposure to people and like DW I like to blend in and not be noticed. I’ve gained weight over lockdown but have lost a few kilos during chemo but still badly overweight and also have now lost a lot of hair so am not allowed to cold cap anymore. I have a couple of wigs which I’m told look fantastic but I am too self conscious to wear them. 

so I’ve been feeling a bit blue ahead of #4 treatment on Thursday. But like you say @FlorrieBee  I will then be 2/3 way through! Starting to feel the dread of treatment day coming and steroid say tomorrow!!

FlorrieBee
Member

Re: January 2021 Chemo Starters

Thank you @Mumboo for the tip on Jen's friends, will definitely look that up. Also, I started on the senna and the sachets yesterday as the aprepitant and ondansetron, maybe the chemo too all cause constipation, on top of that I have to take co-codamol for my headaches and they give you constipation just from looking at them! 🤣🙈

I am with you @donkeywoman on the headgear dilemma. I have always had very long hair but decided to be very grown up about losing it as it will grow back! That said I have not got on with any wigs I have tried, kept a couple of cheapies but I can't see myself wearing them. I too thought I would be happy sticking to beanies and hats but I was hot yesterday coming back from the hospital. Today, I have got a really lightweight scarf and just tied it at the back and it's pretty comfortable so will give it a go. Like you I'm not sure about going out in public with no hair as I would prefer not to get the odd looks. Thinking about it, if it is hot we are probably going to need a sunhat or something to protect our scalps. 🤔

Wishing you all a good few days for upcoming appointments and treatment and hope those who have had treatment recently are doing ok. Beautiful day so I'm going to potter in the garden for a short while. 🌞🌻🌞 xx

Mumboo
Member

Re: January 2021 Chemo Starters

Completely agree about mixed feelings regarding coming out of lockdown & how i feel about myself. 

I wore my lovely wig yesterday, but the weather was quite mild & i did wonder how i'm going to cope when it gets really hot. 

I bought a couple of bright coloured tops from ebay that were about £8 each. They're really loose, batwing styles that i bought for after my mastectomy. So comfy, chuck on over a vest top & no clinging to my chemo curves! I've gone from a size 10/12 to a definite 14, with the potential for higher!  It's temporary i know,  but there are days when i hate it. But if i'm being honest, there were days when i was grumpy about my clothes even when i was slimmer! Just don't look at the sizes. Get what fits & is comfy. 😘

Glad to hear you're doing well after Docetaxol @FlorrieBee.  Keep your fluids up & keep an eye on your bowels... If that's not too personal!! I wish i'd started Senekot sooner!  Got my 2nd Docetaxol on Thursday. 

And for anyone due to have a mastectomy, do go onto "Jen's Friends" on facebook. They are a group of volunteers who make & post out beautiful mastectomy pillows free of charge. They do take donations if able to give, but do not expect it. Mine was gorgeous & arrived with a lovely note. 

Xx

 

donkeywoman
Member

Re: January 2021 Chemo Starters

ps @Gelbel happy new car day and hope the meeting with onco goes well and you are happy with decisions

donkeywoman
Member

Re: January 2021 Chemo Starters

Morning all, 

@Gelbel @FlorrieBee @Erin 35 - your posts were really good, if quite sad, to read. It does feel as though aa few of us are having our emotional struggles just now, and for good reasons obviously. I think your point @Erin 35 about being out and about more as lockdown eases has been on my mind too. I have not gone down the wig road (I have a couple that a friend lent me, but I look too strange in them to think of going out in one!) and been quite happy during the winter with beanies and woolly hats (usually both). I realised yesterday, as I felt a bit of sun, that soon my hats will be too warm and my hair won't have grown back in time for going out and going back to work. I don't mind people knowing that I have/have had cancer, but know I won't like the looks of sympathy (or horror!). I've enjoyed being an invisible, middle aged woman and rarely think about what I look like. Potentially I will constantly being reminded about what I'm going through, in situations where I would like a break from it. My response to this today is to go on the Seasalt website and buy a new top in the sale!

Hope today feels a better day and if not, that we feel okay to be sad, p'd off, teary or cross. I'm hoping to enjoy the day as blood test and the start of pre-meds tomorrow, before chemo on Thursday. xx

Gelbel
Member

Re: January 2021 Chemo Starters

Just a quickie, I was having a little moan/cry with my best friend on Sunday and I was apologising for it. While at times she can be a bit too blunt she did tell me to stop being so hard on myself as: "You're ill and going through hell of a lot physically and mentally."

Funny that, I don't class myself as ill.

Anyway, it gave me the kick up the bum I needed to allow me to feel sad/upset at times and not feel mad/apologise for it.

New car day and find out what's next (Dox or Pax) day. No prizes for guess which I am excited about and which I am a tad nervous about. Hoping I see my actual consultant - though she does have a clinic for new onc patients on a Tuesday. The fact my appointment is late pm and not next week as planned is giving me that hope. She really is lovely and we 'clicked'.

FlorrieBee
Member

Re: January 2021 Chemo Starters

Hello everyone, I'm well overdue posting on here, I have been off the radar for a few reasons this last couple of weeks.  I really need to catch up on all the posts but see there are a mixed bag with some of you feeling awful, anxious, frustrated, but of course the usual excellent advice and support with some laughs too, and we all need those for sure!

Following round 3 my head seems to have been all over the place. Week one i felt pretty rough, was still taking nausea mess until day 11, week two not so bad, but was due an appointment with the consultant and I think that sort of blew my mind!  Mostly discussed surgery options and it really made me realise there is a long road ahead yet. If chemo schedule runs to plan surgery is pencilled in for June, obviously there will be recovery time needed for that, won't know until after the surgery if radiotherapy needed, still need Herceptin in for 12 months and that is not without its side affects and further surgery at a later date.  I know the surgery is a very personal choice for each of us and I assumed I would be having a mastectomy from my original diagnosis, but there are so many choices 're immediate reconstruction types, no recon, delayed recon, skin/nipple sparing etc., etc.!  Pretty sure I have decided normal mastectomy and leaving my options open for delayed reconstruction (diep with own tissue) which I know is a massive wait, could be a couple of years, so who knows i may have changed my mind by then!

Anyhow, I am normally a very pragmatic, positive and upbeat person so everyone assumes you are going to be super strong and get on with it, and is that I have been doing up until a couple of weeks ago, but just had a bit of a blip. I am very blessed with family and close friends who are really supportive, but I do find it hard sometimes to explain how I'm really feeling, feel i need to be strong for all of them!

So, yesterday was #4 and on to the first round of Docetaxel and my first Herceptin.  For some reason I was really anxious about it all and dreaded going yesterday. I had a bit of a headache before I went which is never a good start to the day, I was there before 10.00 and left at 4.00 so a long day. But... none of it was as bad as I had convinced myself it was going to be! Tired, heady, bit nauseous, but so far all manageable with multiple drugs to take for the side affects! 😂  It also means i am two thirds of the way through treatment, yippee 👍💛

I had some pretty good days last week and we have a little project on the go at home that saw me raking stone for a patio area (little bit at a time). We have a tiny redundant space down the side of the house that we are turning in to a small coffee spot.  It will be in the shade so if we get a beautiful, hot summer i can hide away round the corner of the house. It's been great planning it and having something else to think about. I've also been out with hub and the dogs so all positives. I generally look for the positive in everything so have given myself a good shake and a good talking to and feel I'm back on track. 

Think the moral of the story is we are not super human (but we are really just getting through this 😊) and it is completely normal to have different spells of feeling great, lousy, can't do it, can do it, melancholy, elated when we have reached another milestone. I think tiny pieces of normality can do us the world of good, whether it's getting out for a little walk, pick up the phone to a good friend, a take away coffee or just finding a good movie to watch. Step by step we will get back to normal! ☺

I need to catch up on all posts so haven't linked anyone, I need to stop rambling now, I have gone on long enough. But, Erin, it is normal to have low times, you will have better days ahead. Meanwhile, have you thought about Amazon for some cheap but decent looking wigs? I'm not sure when the shops reopen but how about a trip to somewhere cheap like Primark, they will have lots of choice of practical and up to date clothes, some of their things can be slightly on the small size so just go a few sizes up and don't worry about what the number say! It will make you feel good to have something that looks nice and is comfortable. I ordered some magnetic eyelashes from Lola, look them up, they have brilliant reviews and I also ordered some Benefit eyebrow pencil. It has 3 little prongs that replicate the look of eyebrows. Just little things that may help you feel better.

Right, time for food, drink, steroids, anti-sickness, will save the injection for later 🙈 Hope today is a kind one to you all, big hugs xx

Erin 35
Member

Re: January 2021 Chemo Starters

Looks like a few of us are struggling this week! I’m really down to be honest. Very tearful and just thoroughly fed up - worst I’ve felt since my diagnosis in October. I ordered some new clothes as I’m sick of feeling uncomfortable in everything. They arrived today and even the next size up doesn’t fit. No hair, no eyelashes, no clothes that fit. I feel like I’ve lost myself. I know getting over bc is the most important thing but I think with restrictions easing, the thought of going out in the world again and being seen by people is getting to me. 
Sending a big hug to everyone who needs one this week! Xx

Mumboo
Member

Re: January 2021 Chemo Starters

Hi ladies, 

Just a quick catch up... @Gelbel i am using Nailberry black nail varnish & their strengthener. It's quite pricey (about £14 each) but someone recommended to me & so far, so good! There's plenty of other brands, just make sure it's a water based varnish so that you don't need acetone remover, as that can be quite harsh. 

Xx 

Pesto
Member

Re: January 2021 Chemo Starters

@Gelbel 

 

Pm suits with me.   See you virtually.  Excellent idea, looking forward to it.

 

Big hugs 

 

Gilly

XXX

 

 

Gelbel
Member

Re: January 2021 Chemo Starters

@Pesto / Gilly I can hear a collective sign of me too!

So with you... except for feeding the family over Christmas, kids and dogs. Note to self: be grateful it's only 2 of us.

Shall we make little effigies and have a mass sticking pins in them session? What time slot do you want for yours? I'll some time in the pm as he might've moved his bum and done something productive by then. 😉

Might as well nag/shout/scream when asking/reminding doesn't work. 

Ranting is good for the soul.

Love AnGELa x 

 

Pesto
Member

Re: January 2021 Chemo Starters

Hi all.  Not been around, not a happy bunny.

 

Any way major rant.....

 

Hubby been home since I have been diagnosed. ( October )...  more at a later date.  That is not for now..

I have been told week in week out don't do that...  I will.

 

I look around the house kept calm, no idea how.  The place is a complete disgrace.  Hoover still upstairs where it has been for two weeks, have asked for it to be brought downstairs....  no I will hoover your arm won't take it.

 

I ,managed somehow to hold down full time job, do the school runs, only finished two years ago when youngest got wheels ( thirty years plus ), laundry, cordon bleu cooking, housework to the point of rubbing paint of the skirting boards, cleaning x no of loos....the ironing, sorting the dog with all his needs, and that is before we get to docs apps for the kids and vets.  All with a smile on my face, forgetting writing all the darned Christmas cards required for business, remembering every fracking member of his family's birthday, Christmas shopping on behalf of of everyone with love from who ever I decided in his family had  "bought " said gift, cooking for twenty....  all his flaming family from pre christmas eve to the day after new years eve, suppling wine, aperitives etc plus breakfast lunch dinner and snacks in between.

 

And breathe....

 

 He might do the dishwasher and some of HIS own laundry these days.  The cooking ....mostly edible but I very little appetite.

 

It must be me !!!!!  I am apparently asking -  ney .....nagging.  The spiders are getting very well fed in our house at the moment.

 

Any way off to bed, drugged up

 

Take care you lovely ladies 

 

I hope next week is a good one

 

Biggest hugs

 

Gilly

 

XXX

Belinda_F
Member

Re: January 2021 Chemo Starters

morning all, how you doing? how were sleeps? I'd forgot about clock changes, thanks @donkeywoman for remind! and thank god for phones updating automatically! I'm so glad you had a better day yesterday DW... many of us have had some hard days this week haven't we...the horrid things bc throws at us. I'm going to look at the lockdown posts @Gelbel I think some of my poor mood is lockdown related, it's so hard not having visitors or people coming by to cheer you up... having bc is isolating anyway, being ill is isolating... but it's made so much harder by covid isn't it. I see 3 people regularly, which I know must be more than many but still... it's hard! 

@Gelbel I had a similar idea that my poor mood could, at least also, in part, be down to diet... I do eat very healthy meals but they're supplemented with a ton of sugar which makes me feel horrendously toxic so whilst my refusal to deny myself anything is laudable in part, I really don't think I'm doing myself much good with endless sweets and cakes, and putting on weight too of course... so I'm trying to stop, or cut down massively. it's an addiction sugar tho isn't it, and. extremely difficult to give up! 

so, not much on today, will do some seed planting and Potter in garden. day 3 of taxol etc #4 and all's well. no nausea, flushed face, but that's it. it's so so so much easier than EC, if anyone has choice of weekly, for side effect avoidance, it's a winner for me... just a pain having to go to hospital 2 times every week... ho hum hey. 

big hugs for a gentle Sunday loves Xx