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February 2019 chemo starters

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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❤❤❤❤🥀🥀🌹🌻🌻 

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Re: February starters 2019 - yes, we rule!

They still say they want to give me an x ray but they have been saying that for hours

 

Waiting for porter

 

Dont really know what is going on

 

Sounds like they want me in overnight but they have nowhere to put me

Not even a stock cupboard Smiley Happy

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Re: February starters 2019 - yes, we rule!

Sorry for the short often  updates. Cant do a long one.

Really am gutted that my port cant give blood any more as the first 3 chemo it worked so well, blood on tap!  After a whole lifetime of not being able to give blood without a massive struggle I thought I had found answer.

 

They are now giving me antibiotics on drip as port still works that dieection.  Still on chair in  waiting room.as no beds or even examination cubicles

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Re: February starters 2019 - yes, we rule!

Sarah, I’ve just seen this honey.  They can’t send you home without even a blood test having been done to find out about neutrophils, inflammatory markers etc and if IV antibiotics needed.  There must be someone capable of getting blood out of you somehow. Please stay where you are until you have some answers. Sending love and hugs. Xxx

 

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Re: February starters 2019 - yes, we rule!

I wouldn't want to go home either Sarah, especially since your temp hasn't settled and they can't get bloods for testing. Stick to your guns and don't get fobbed off. Keep us updated. We're all here for you. Sending you ❤❤❤❤❤❤ and 💐🌹🌹🥀🌻🌻. Hope they sort you out soon. Susie xxx   

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Re: February starters 2019 - yes, we rule!

95DA1110-BC96-4A3F-A839-04658D4B4E38.jpegQuilt details from the older quilts that the collector brought over from US.35BB7232-F5DD-4713-9720-5A525F24C183.jpegC639F3EE-9F9B-40D3-81C9-6CC96E848103.jpeg2E495F6D-A774-45CA-A6C6-E37A752BF186.jpeg9A059196-E853-4440-8ACA-78CBC17A2CA5.jpeg

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Re: February starters 2019 - yes, we rule!

52FE6FE6-A648-403A-8CB8-E052BEF522E2.jpegLight and love to all

 

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Re: February starters 2019 - yes, we rule!

Omg Implausible so if they can't get bloods how the barry do they know that your not Neutropenic Sepsis?? So worried about you xx 

Member

Re: February starters 2019 - yes, we rule!

Hello lovely ones,

 

Sorry to hear about the Taxol aches and pains. I have my first session on Tuesday morning . I see the oncologist before I have it so I shall make sure to get written up for painkillers. 

 

Sarah, hope that your temp is on its way down.

 

Trixielady keep up up to speed with your new scan/ test. All your current challenges might be something as simple as just needing to take things at a slower pace with you. Fingers and everything crossed.

 

Rosina and Susie B, yes we do have a gite. We’re going to rent out it  for the first time this summer. Wish us luckSmiley Happy Have been considering doing art or craft themed weeks. Think art weeks would be great in the river garden because there’s lots to catch your interest. 

CC3F843C-EC40-4524-A28A-35FCE07D0A09.jpegTe woman who did this quilt is well known for her embroidery.A24679C8-C0DE-4CAF-B7D2-900FAC662902.jpegOne of few quilts from US guys collection that was quite vibrant colour wise.Next two photos are details from a couple of other ‘ lighter’ ones.5AD14485-6B6D-4FA4-88FD-2A973BCDE899.jpeg4138C0A7-C2A7-4F49-B66A-D7EFE1FFE694.jpeg092F799E-ACD9-47C7-A4FE-24DA384ABB21.jpegEmbroidery lady.Should be up with first pic as it’s detail from same quilt.

Feeling a bit p*ssed off today. Feels like I have had a nice break from EC and now I have start this all over again. Shouldn’t have had cheese on toast for breakfast, don’t know what possessed me. Now  nausea has crept back so that’s got me thinking of chemo even more because of my struggles with feeling like I wanted to vomit all day every day for days after EC  treatment. Ah, well it’ll all be done soon enough. Will do do some meditation a bit later.

 

In robin related news. I’ve been trying not to disturb the manure bag too much . In the garden yesterday ,Tim peeked in and one of the eggs is missing and he said the other one was broken. I didn’t want to look in when he said that but I was so cross at what’d happened I did look in and the remaining egg was broken but it did have a whole in it. Couldn’t believe it, here’s me deliberately keeping my distance and this happens. Don’t know what could have done it. Given that we’re surrounded by fields and water it could either be mice, water rats or coypu. I was concerned about cuckoos very close by as they’re well known nest robbers but there aren’t any other eggs in the robins nest. At least yesterday there weren’t. Couldn’t bring myself to look in the bag this morning.

 

So, sadly no more robins. However, after disappearing for days I noticed the hoppoe is back in the front garden. Swings and roundabouts eh!

 

In normal life news , I went to what was supposed to be a sewing and craft show on Thursday. It’s an annual one that’s held in Nantes, a couple of hours drive from us. It’s a really big show and it was my first time going to anything like that over year so I was quite excited. I was a bit dissolved because about 70% of it was traditional patchwork and quilting and associated products.I actually love the traditional stuff but over the years I’ve seen tons of it so whilst I appreciated the craftsmanship I was underwhelmed. 

 

I was hoping that there’d be far more embroidery stands. There were a few but again all very traditional stuff. I want to try my hand at tambour embroidery and you need a special needle for that .Thought I was bound to find it at the show. Did I heck!

 

There was a guy from the US who collects quilts and he had a little exhibition of american quilts from between 1860 -1890. That was interesting in terms of seeing what textiles were available then. His quilts had a lot of black fabric in them.Dont know if he deliberately chose ones with black fabric in or that was a trend from that era. Nice stuff but a bit dark.

 

 

 

Anyway, rest up and relax  .xxx

 

Some pics

 

 

 

 

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Re: February starters 2019 - yes, we rule!

Oh eck! Surely they won't let you home with a high temp? 

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Re: February starters 2019 - yes, we rule!

1EBA56B6-0B6D-4939-BA7F-FA038498FD6D.jpegSending light and love

 

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Re: February starters 2019 - yes, we rule!

Sorry for my bad typing.  It has gone up and down highest is 38.2 lowest 37.5 lowest.  It can't settle.

 

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Re: February starters 2019 - yes, we rule!

Oh Sarah, I would be scared to go home too until I knew what I was dealing with! What was your temp? Xxx

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Re: February starters 2019 - yes, we rule!

Been ĺn waiting room for 2 hours. They can't get any blood out of me. Or get cannula in for iv antibiotics. I feel very weak and temp is high. No beds or even a separate cubicle. Had to strip.off for ecg in waiting room behind impromptu curtain. Think they might just send me home with oral antibiotics but I feel really.r3qppy bad now and am a bit scared to go home

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Re: February starters 2019 - yes, we rule!

Yeah I think you said before... I actually enjoy going and getting the bargains! Just not today... it forces me out too. I have a couple of apps on my phone and two scanners where you scan in the items at home and you get points to swap for gifts or vouchers - I hate it when I don’t personally do the shopping as I don’t know if anything was on offer or not!

 

So I’m moaning on about it but two out of three weeks I’m glad to do it. Husband has been able to hoover and cut the grass since I’ve been out the way too. Trouble is I now have to stand and scan everything... need to hurry up so nothing gets warm and therefore I’m unable to eat it!

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Re: February starters 2019 - yes, we rule!

Edinbird, I find the left hand side less painful too and alternate between sides. As for shopping, have you considered on-line shopping whilst going through treatment? When I first started a few years ago I was a bit slow, but now it's a wizz. We get the stuff delivered on a Saturday so Paul is always here to put stuff away. Sorted😊.     

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Re: February starters 2019 - yes, we rule!

Thanks Susie we always sit down and alternate sides each night, there is less flab on the right due to my appendix scar was it was just as if whatever I grabbed was tighter than normal. Might just stick to the left again tonight it’s generally better that side.

 

Just trudged round Sainsbury’s but I now need petrol so need to sit and get myself together before driving to the petrol station. Shopping on week 1 Sunday is always hardest but this has been the toughest yet. Can’t face the thought of having to sort it all out at home 😕

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Re: February starters 2019 - yes, we rule!

Hi Edinbird 

The tightness in your tummy may be just because your body is naturally tensing up against the pain, similar to when you stub your toe or something. Before your next jab try breathing slowly in through your nose and out through your mouth. It may help your body relax a bit. I don't know about you but I always sit down for my jab. There might be a bit more tummy fat to lightly pinch for the injection, there certainly is for me. Hope this helps. Take care xxx

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Re: February starters 2019 - yes, we rule!

Please keep us updated....we shall worry about you xxxx

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Re: February starters 2019 - yes, we rule!

On way to ward now

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Re: February starters 2019 - yes, we rule!

Fingers crossed implausable that your temperature goes down and you feel better.

mine is on border line at the moment but I have taken paracetamol and ibuprofen as was struggling this morning. I’m attempting to make it to a baby shower in a minute but not sure how long I will  last as feel pretty rotten but really want to catch up with friends. 

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Re: February starters 2019 - yes, we rule!

Hi Implausible 

Hope you get sorted soon. Take care xxxxx