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February 2019 chemo starters

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Re: February starters 2019 - yes, we rule!

Morning Seasidesar 

I have gone back to bed too. 

Late breakfast of hot cross buns and coffee.

Peace and quiet.

My only plan to walk later.

Hugs,

Rosina

Member

Re: February starters 2019 - yes, we rule!

Morning,

 

How are you feeling Sarah? Did they manage to get any bloods from you yet? So sorry you're having to go through this. 

 

Good luck with the blood test Daisy. Hope it's all good for tomorrow.

 

I'm feeling utterly pants so will be resting again today. Bloomin Herceptin/T/injections, who knows?

 

Hope the rest of you are able to cope with the SEs and have a reasonable day.

 

Sar xxx 

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Re: February starters 2019 - yes, we rule!

Daisydi, are you feeling ok today? It would be good if you can get another one ticked off. I hope the blood counts are good to go. Xx

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Re: February starters 2019 - yes, we rule!

Morning all just about to go get bloods done.  Chemo is tomorrow all being well.  Will catch up later.  How are you Sarah?

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Re: February starters 2019 - yes, we rule!

Hi Trixielady 

Just seen your post. I'm due lumpectomy surgery sometime after my trip to Aix. Don't know yet about lymph nodes. No doubt all will become clear when I have my appointment with the surgeon. I know I'll go onto TC after surgery as it's all part of my trial. Hopefully it'll be established if I'm HER2 positive or negative so I'll have a clearer picture of my future treatment plan.   

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Re: February starters 2019 - yes, we rule!

Hi everyone 

Daisydi hope you're feeling a bit brighter today and ok for today's chemo session. Is anyone else having chemo? If so good luck, I'll be thinking of you.

I've got the joys of getting my boobs out again this afternoon for my ultra sound scan. At least that's one thing that doesn't cause pain or side effects☺.

Will pop back later for a catch up. xxxxx   

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Re: February starters 2019 - yes, we rule!

Morning ladies good luck for this week, I'm really mixed up with who has had what ?

How many are still waiting for surgery? and who's carrying on to have rads? Xx

I will be having more surgery to uplift my good booby and to replace my implant hopefully in October. Xxx

 

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Re: February starters 2019 - yes, we rule!

You Sarah, I hope you’ve managed to get some sleep now you have a bed, fingers crossed they can get some bloods from you and then you will be able to get to the comforts of your own bed, please keep us updated, as we all

want to know how your doing. 

 

Trixielady, sorry to hear your having such a rough time.

 

Sandraindurham, I’ve been put on 7 filgrastim injections  this time after T for the first time, so not sure what aches due to that it T. 

 

Daisydi, I didn’t quite feel

like I bounced back like normal

between FEC and T, and I was given an extra week. I’ve also been struggling with blurred vision, that’s not fun. 

 

MJB, love the photo of the choir,I think

I can see the top of your head.  

 

Marilyn, we have a very dark

sense of humour in our household, but I try to be very  careful not to over step with others. 😉

 

Deano, glad to here your getting through the treatment, 2 more to go, we’ve got this !! 

 

Rosina, your an inspiration, I just about managed standing yesterday at the baby shower, let alone anything else.  

 

Nettinoo, and Edinbird and susieB hope you are all doing well. 

Sorry if I’ve forgotten anyone, thinking of you all. Xx 

 

 

 

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Re: February starters 2019 - yes, we rule!

Morning Sandraindurham 

I took Filgrastim for my first 2 cycles on Fec-T on day 3 for 7 days but the side effects by that i mean back pains were absolutely horrific so i complained from my first chemo but after my second i refused to have any more chemo so on my 3rd cycle oncologist reduce it by 20% and then changed my regime over to Paclitaxel and decided it should be weekly but I had also started on herceptin only had one cycle and have since had chemo delayed until I've had a new heart scan as they couldn't read my last echocardiogram and ended up in hospital xx big hugs to you both 

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Re: February starters 2019 - yes, we rule!

Hi Rosina 

Totally agree with you when it comes to organising things during  chemo. They tell you in the literature, I was given loads, to organise little treats along the way so you have something positive to concentrate on. Easier said than done as it's not easy trying to factor in possible delays and you fret in case you're too unwell to do whatever you've organised. Shame chemo doesn't come with a crystal ball🔮. xxxxxx 

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Re: February starters 2019 - yes, we rule!

Sandraindurham I was on 7 filgrastim injections after my FEC. I just had very mild upper back pain after the 6th injection and very mild low back pain after the 7th. I hope Veronica gets better soon. Sending her virtual hugs ❤❤❤❤❤.

Implausible no need to appologise for the me, me me, posts. We all needed to know how you were getting on. Swindon hospital isn't the only busy one. Yeovil put out a call earlier in the week asking people not to go to A and E but to dial 111 instead as they were overwhelmed.  

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Re: February starters 2019 - yes, we rule!

Morning Susie B

the Yoga retreat actually re-energised me and made me feel more positive.

The dose postponement was the tricky part as I was planning on having had over a week between receiving T and then doing this. As it turned out it was 3 days. They did say that had I not been able to attend they would have offered me alternative dates ( I didn’t even think of that!). I was also allowed to opt out of the activities at any point if I felt weak and just lie on my mat with a pillow and a blanket, but this wasn’t necessary.

The yoga stretches were gently explained and practiced, the focus being on ‘ sun salutations’ which I love.  I would definitely do something like this again in the future.

 I have slept well and my throat is feeling better too.

 I hope that you and everyone else ( I am thinking of Sarah, Trixielady and Veronica in particular) are feeling stronger.

We will get through this.

Rosina

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Re: February starters 2019 - yes, we rule!

Hi Rosina 

So glad you enjoyed your day in the yurt. I remember you mentioned it a while ago when you booked to go. Hope the day didn't tire you out too much. xxxx

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Re: February starters 2019 - yes, we rule!

OK, 2.15 and here I am, helping Veronica.

How are you all coping?

Sarah, honey, any news?

Horrific situation!

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Re: February starters 2019 - yes, we rule!

Yep 10 wonderful Filgrastim each cycle now. Not had the aches from this yet this time been too busy just aching with T! That is definitely improving (I’m just awake with general being awakeness and a touch of indigestion!)

 

Vision is ok, mouth is iffy and a tad sore but improving. I slept 4 hours before I woke which is an improvement! Can’t really sleep more before I wake these days. Need to try to relax but wary of my essential oils right now given my tastebuds are a bit off and smell and taste linked.

 

So glad you are finally getting sorted Sarah. I never got my own room! But what I did get was fine. Wonder how the ladies are getting on that I was in with

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Re: February starters 2019 - yes, we rule!

Sandra, I have Filgrastim each cycle. I had 8 daily injections 1st cycle, 6 on the 2nd and I’ve recently finished 7 daily injections on this cycle. Xx

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Re: February starters 2019 - yes, we rule!

Sarah, we needed to hear about “you, you, you” love. We were all worried sick. I’m so relieved you have a space of your own, even if it’s not a proper room. Please keep us updated as often as possible, Barry’s beauts/babes/boobies need to know you are doing ok. Lots of love and hugs. Xxx

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Re: February starters 2019 - yes, we rule!

I now have a room of my own.  Hooray.  It isnt an actual medical room as such, it looks like a staff break room.... but it will do

 

The sister just came in to set up my second antibiotic drip and she was saying that this week has been the craziest she has seen in over 10 years here.  Looks like I picked the wrong week to get poorly.

 

Sorry all my posts today have been about me me me!  I'll catch up with everyone properly when I'm home and better.....

MBJ
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Re: February starters 2019 - yes, we rule!

My first time singing with the Rock Choir since last September. I really enjoyed it so much. You can't really see me I am half way up the stairs on the left. Just by our mad conductor Dan. IMG_20190428_232559.jpg

 

MBJ
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Re: February starters 2019 - yes, we rule!

Dear Implausible

I hope they find you a room soon, it's disgraceful that you have been left in the waiting room with goodness knows what germs. This is another example of how NOT to care for someone who is neutopenic. I thought my care was bad but this is even worse, and is not acceptable. What has the NHS come to. Yes it is fantastic in some aspects of care, but incidents like this really demonstrate how it is failing to care for sick and vulnerable individuals. 

I really hope you improve soon and you get the level of care your need. Xx

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Re: February starters 2019 - yes, we rule!

At least you've got a bed Sarah, shame it doesn't come with a room😄. Hope the meds help. Night night🛌🏾🌛xxx

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Re: February starters 2019 - yes, we rule!

Implausible, Trixielady, Daisydi, I am so, so sorry.

Veronica is also with blurred vision, sweaty or cold, very tired but if she fells asleep wakes up after a few minutes, Chemo is affecting her speech so when she awakes and speaks I cannot understand a word, dryness and possible thrush.

How many of you are taking filgrastim?

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Re: February starters 2019 - yes, we rule!

Well at least you can lie down now and have some pain relief.  Hope you feel better soon xx

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Re: February starters 2019 - yes, we rule!

Oh boy, you wont forget this Sunday in a hurry! Hope you don't end up sleeping in the corridors??? Are you feeling a wee bit more human now? Xxx

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Re: February starters 2019 - yes, we rule!

Delighted to report that after 9 hours I have a bed!  And painkillers!

 

The bed is still in the waiting room, mind, but beggars can't be chooses

 

Apparently there is another iv antibiotic drip coming at 9 (which was 20 mins ago) .  Hopefully that will bring my temp down

 

They still haven't got bloods 

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Re: February starters 2019 - yes, we rule!

Hi Im ok just havent bounced back to normal like I normally do.  Feel so tired because I am not sleeping properly and just generally feel low.  Have to take my steroids at 8 in the morning so hopefully I will feel better.  Half of me wants to delay it but the other half wants to get it over with.  How are you doing Sarah?

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Re: February starters 2019 - yes, we rule!

Trixielady look after yourself. Having no energy is the pits. You feel so helpless. Get plenty of rest🛌🏾. xxxxx 

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Re: February starters 2019 - yes, we rule!

Oh daisydi hunny sorry your not feeling very well either, so pleased you mentioned above blurred vision what a day ! SO Hope Implausible is ok, Its awful the more we have the worse we seem to become, my energy levels are rubbish breathlessness is terrible  not even able  to make a Sunday lunch without support couldn't even load the dishwasher, temperature up and down luckily changed back  

Edinbird hoping your ok after shopping and spending time in your garden xx

Rosina so pleased you went today and enjoyed yourself x

Nettienoo, Ocean21, Sandraindurham, Seaside Sar  Marlyn, SusieB , Deano, MBJ , I'm so sorry but its getting extremely more difficult for me to concentrate, thinking about each and everyone of you on this journey love and best wishes for a good week xxx

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Re: February starters 2019 - yes, we rule!

Hi Daisydi

I'm on the same wavelength as Marlyn and wondered if it's worth asking if you can delay chemo. A week or so won't do any harm. xxxx

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Re: February starters 2019 - yes, we rule!

Hi implausible 

just catching up on the posts and I hope they get you sorted my darlin after you seemed to be managing - I’m ok but my eyesight is more blurred and I feel light headed and have a hot face and neck flush.

Dont let this treatment get to you or panic hopefully it’s just a blip and they will sort you out tonight - lots of love ❤️😘

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Re: February starters 2019 - yes, we rule!

Hi Ocean21 

I am loving the quilt photos.

 I made myself attend the yoga retreat today.

 I drove slowly and carefully there.

I didn’t know if I was going to be up to it or not but I thought that as the muscle aches had gone I would go ( much to my daughter’s relief) . It was just the throat that needed TLC so I packed a water bottle with lemon squeezed in.

Once got there, I relaxed.

The day ran from 11 am to 5 pm.

We had a yoga session, reflexology, meditation, visualisation and delicious food ( sweet potato chocolate brownies 🤗) all in a yurt in the country.

The images shared today were of the cards pulled out at the start of the day.

 All of you have been on my mind as I participated in this retreat.

I did share with the other women there today, telling them how we will all be meeting up once we are through with all of this.

This was my most mysterious card

0A3B7679-20B8-41AA-AF3D-12C7A616710D.jpeg

 

I definitely believe that your ideas of art and craft weeks at your farmhouse would be a delight.

Good Luck with this venture.

Implausible how are you?

Sending more 💕 

Rosina

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Re: February starters 2019 - yes, we rule!

Sorry your having a rough day too daisy....I wonder if it's worth asking to delay your chemo? Sounds like you need a breather? Xxxx

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Re: February starters 2019 - yes, we rule!

Oh Sarah what a barrying shame they cant get that port working.  Im feeling pretty rubbish too and in a way Im hoping that my bloods arent good enough tomorrow so I can have a bit of a reprieve.  I certainly havent bounced back to normal, I look like **bleep**e, have a very itchy bonce and generally feel under the weather.  Dont want that T stuff making it all worse ....  Cant they even find a trolley for you to lay down on?  Make a fuss or get your other half to.  Its not good enough x

MBJ
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Re: February starters 2019 - yes, we rule!

Oh Implausible

I am so sorry you are feeling like this it's the pits I know, and you really don't need it compounded with inadequate care. Like me you will probably find that they follow protocol just enough to cover themselves. Like the IV antibiotics and chest x-ray, but the rest of it like finding you a bed etc is also essential when you are so ill. I hope you improve soon. Xxx

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Re: February starters 2019 - yes, we rule!

Don't worry Marlyn, I have always said the same thing about being a rubbish junkie!  Can't even get a vein between my toes!

 

Still in the waiting room on a saline drip.  Would pay good money to be able to lie down.  Everything aches and hurts so muchSmiley Sad

 

They just tried and failed again to draw blood

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Re: February starters 2019 - yes, we rule!

I can be a bit dark/ warped at times, I reign myself in on here as I would hate to cause offence to anyone....it's been a good coping mechanism for me though! Xxx

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Re: February starters 2019 - yes, we rule!

Love your sense if humour Marlyn😅😅😊. 

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Re: February starters 2019 - yes, we rule!

We are all rooting for you Hun, you would have been a useless junkie....every cloud......  seriously though....really hope you get sorted xxxxx

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Re: February starters 2019 - yes, we rule!

Yup they have tried feet

 

I am genuinely unbleedable 

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Re: February starters 2019 - yes, we rule!


@Implausible wrote:

i gave them my card straight away.  The anti Bs took a lot longer than an hour though.

 

I am starting to feel slightly less passy outy  now

 

Hopefully later I will look at the embroidery.   I can share some of my own too if signal ok

 

 

@Susie B wrote:

Implausible don't apologise for frequent updates. Glad they're finally getting antibiotics into you. The protocol here is that as soon as you show them a card we have to carry with us all the time we have to be seen within 15 mins and if we're presenting with a temperature then antibiotics have to be administered within an hour just in case of sepsis, etc. Fortunately I haven't had to test that theory yet.. Keep in touch. Take care. Susie xx   


 


Sarah, what is going on, what is the explanation for this? When did you had your last chemo, are they considering a n. sepsis? Are you getting filgrastim to improve immune system? What the hell are they doing????

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Re: February starters 2019 - yes, we rule!

When I was in hospital there was a lady who needed it taken from her feet (she was getting a port put in that’s partly why she was there) it wasn’t pleasant but better than not getting anything. They will try what they need to try. Again feeling bad that my hospital experience wasn’t that bad 😬 every time I’ve needed to go it’s been to the specialist assessment ward that you guys don’t seem to have access to and then when I was admitted the people on the ward were good fun and I kinda enjoyed it! I feel worse these past few days than I did then!

 

Please everyone look after yourselves xxxx

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Re: February starters 2019 - yes, we rule!

Im not saying much but I am with you all the way Sarah.  When I used to do injections our last resort was the feet.  Have they tried them!  Keep us informed.  xx

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Re: February starters 2019 - yes, we rule!


i gave them my card straight away.  The anti Bs took a lot longer than an hour though.

 

I am starting to feel slightly less passy outy  now

 

Hopefully later I will look at the embroidery.   I can share some of my own too if signal ok

 

 

@Susie B wrote:

Implausible don't apologise for frequent updates. Glad they're finally getting antibiotics into you. The protocol here is that as soon as you show them a card we have to carry with us all the time we have to be seen within 15 mins and if we're presenting with a temperature then antibiotics have to be administered within an hour just in case of sepsis, etc. Fortunately I haven't had to test that theory yet.. Keep in touch. Take care. Susie xx   


 

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Re: February starters 2019 - yes, we rule!

Well I’m sat in the garden under a blanket with a bobble hat on like a weirdo but it’s comfortable on the sun lounger... it’s actually v warm I may need to swap the headwear! Feel better out here but my throat is a bit sore it’ll be not enough fluids and maybe snoring in the position I’m in...

 

Still don’t feel right but I can cope with this. Much better than I was when I got back from the shops. The textiles look lovely Ocean. I feel my life is very boring I’m just running around after my friend or working, wonder if I can work outside when the weather is like this? Not sure I’ll get anything done...

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Re: February starters 2019 - yes, we rule!

I’m calming down now I’ve read you are on IV antibiotics love. 👍🏼. Best to start to get them on board asap and not wait for test results and if they are sending you for a chest X-ray it sounds like they are following the normal protocols. Phew! X

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Re: February starters 2019 - yes, we rule!

Implausible don't apologise for frequent updates. Glad they're finally getting antibiotics into you. The protocol here is that as soon as you show them a card we have to carry with us all the time we have to be seen within 15 mins and if we're presenting with a temperature then antibiotics have to be administered within an hour just in case of sepsis, etc. Fortunately I haven't had to test that theory yet.. Keep in touch. Take care. Susie xx   

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Re: February starters 2019 - yes, we rule!

Sarah, ask if the hospital has a protocol in place for suspected neutropenic sepsis and is it being followed? It will let them know you are not to be fobbed off with inadequate care. X

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Re: February starters 2019 - yes, we rule!

What a crappy day your having, here's hoping and praying they get you stable....just hope there aren't too many germy people around you....xxx

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Re: February starters 2019 - yes, we rule!

They just need to keep trying with bloods.  My record is 7 people trying in a row over a 5 hour period.

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Re: February starters 2019 - yes, we rule!

Hi Ocean21 

Sorry you're feeling peeeee'd off. We all seem to get our down moments but remember we usually bounce back the next day. All part of the chemo experience I suppose☹. What is it about cheese on toast or cheese toasties? I have them occasionally but I've had toasty cravings all the way through chemo. Luckily all my anti sickness meds have worked a treat so I've been able to indulge in my cravings. Love the photos of the quilt work. All done by hand - incredible. Your idea of art or craft themed weeks sounds interesting especially around your beautiful gardens. Sorry about the robin eggs. Perhaps they'll produce a second batch. Hope you feel better soon❤❤❤❤🥀🥀🌹🌻🌻