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February 2019 chemo starters

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Re: February starters 2019 - yes, we rule!

Thats good news Susie.  Surgery will be a breeze compared to this pile of poo. x

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Re: February starters 2019 - yes, we rule!

Yes Sarah the bloodcount gods won but the unit is so hectic esp on a Monday that it wouldnt surprise me if they have forgotten.  My day got changed this week due to staff shortage.  Will see tomorrow.  How are you feeling?

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Re: February starters 2019 - yes, we rule!

Sonia I thought with thrush you get white spots.  Try the mouthwash and/or salt water but prob best to ring the team.  I do remember having it before but I cant remember how I got rid of it.  I have had a slimy tongue for weeks with little ulcers but Im not sure that it was thrush. Sorry not much help.  Ring your gp surgery. They would know

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Re: February starters 2019 - yes, we rule!

Before I read all this afternoon's and evening threads just a quick update after my scan earlier. Gremlin has definitely shrunk even more🐉😊 since my last scan and the lymph nodes aren't as swollen☺. Now have to wait for appointment to come through to see the surgeon☹.   

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Re: February starters 2019 - yes, we rule!

Thanks ladies, 

I’ll give them a call in the morning. I think if I’m honest I know it’s thrush but wasn’t sure if everyone else tongue had gone white. I’ve been using the mouth wash and cleaning my teeth with the bicarbonate toothpaste, lots as I have no taste buds at all. 

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Re: February starters 2019 - yes, we rule!

Sonia, that does sound thrushy.....have you tried swilling bicarbonate around your mouth? 

Member

Re: February starters 2019 - yes, we rule!

Sonia sorry I don't know much about thrush of the tongue but I would imagine it would be quite sore?  Does it hurt?

 

Probably worth a call to your onco nurse....


@sonia28 wrote:

Okay ladies, need advice. I know our tongues get affected with chemo but I’m not sure if I have thrush. 

It is pretty much white all over even after cleaning it with my tooth brush xx


 

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Re: February starters 2019 - yes, we rule!

Best of luck for tomorrow Daisydi , looks like the bloodcount gods made their decision.  Hopefully it will all go super smoothly and then you will be glad you didn't end up with an unnecessary delay x

 

 

 

 

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Re: February starters 2019 - yes, we rule!

Okay ladies, need advice. I know our tongues get affected with chemo but I’m not sure if I have thrush. 

It is pretty much white all over even after cleaning it with my tooth brush xx

Member

Re: February starters 2019 - yes, we rule!

Good luck daisy!!! We got this, we're in it together Hun xxxx

Member

Re: February starters 2019 - yes, we rule!

Good luck Daisy!

 

My aches have definitely subsided significantly today. I walked round to Morrisons and my legs had no strength but no aches either. I had little motivation for work so I only did about 2.5 hours but that’s ok for the first day and I can probably claim a decent amount when I meet my boss Wednesday plus I’ve taken Friday off. So I don’t feel so bad.

 

Hoping with less aches I sleep better but I just find I wake in the night and then can’t get back off. I never used to be like this used to sleep soundly any time any place. Only in the last year maybe have I been like this? Doesn’t seem to matter whether I’m sleeping on my own or not either. I know I need to try the yoga nidra but then I’m thinking but why didn’t I need that before? I guess things change when you get older. Or cancer.

 

Anyway I’m away to make dinner, hoping it tastes ok! Need to get the barrying injection out of the fridge too yippee 

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Re: February starters 2019 - yes, we rule!

Yeh I know I want it over with but I dont want it either.  Must admist these steroids are doing nothing for me other than making me go to the loo every 5 mins and turning my face greyer and my eyebags blacker.  I look like a walking farting corpse!

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Re: February starters 2019 - yes, we rule!

Good luck Daisydi,

best to get it over with!

 I am fed up with myself as the aches are all in the upper body so I keep thinking I should walk ( as a distraction) .

Hot chocolate has helped with my throat.

Everybody is telling me to rest.

Getting up now. I have had enough bed rest.

Actually I am between my bedroom and the living room. I suppose going up and down the stairs counts.

Not aching enough for painkillers ( so I  haven’t taken anything) .

I am fed up with myself 🤪

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Re: February starters 2019 - yes, we rule!

Daisydi, Good luck tomorrow, you’ve got this, then it will be another one closer to the end 🎉🎉

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Re: February starters 2019 - yes, we rule!

Hi all Ive had no phone call so looks like its all systems go for my first T tomorrow.  EEEEEEEEEEEEEEEK!!!!

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

Hi Implausible

Your fabric work is really beautiful. I hope you will be going home soon. I think you have been very tolerant about the issues of finding you a bed. I think I must have been a real pain in the you know where when I was in hospital. 

Sorry those of you that started on T feel so crappy, I hope you feel better soon.

I went to the last of the Moving Forward sessions today it was fine. Will miss all the ladies from the group now. But my mission like all of you is to move forward. I am going through past Slimming World mags looking for recipe inspiration before I go shopping tomorrow. Hope I will have lost a bit of weight this week but I can't say my trousers feel any bigger. 

 

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Re: February starters 2019 - yes, we rule!

I am keeping my fingers crossed 🤞 for you Sarah.

 I am also making a mental note of what your nurse said:

“that first T, is the worst one.  She says it knocks the body for 6.  Apparently cycles 5 and 6 are slightly less horrid.  Let's hold her to that!”

As I think that this is the hardest one for me.

 I have just had a bit to eat ( fried plantain) on which I dolloped mango and passion fruit sauce ( don’t ask , I was hungry but couldn’t think of anything I wanted- this was H1’s idea) and I am back in bed.

 I have had a short walk, my mouth continues to be sore and my shoulder blades are in some kind of pincer grip.

Marlyn, the only stretch I have done today is to stretch in my bed.

Bed stretch

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Re: February starters 2019 - yes, we rule!

As promised/threatened, here are some of my attempts at fabric work....  I tend to combine painting with (not particularly good) embroidery or quilting....

28ad0d33b9b2605482a46fddf9a63443_original.jpgThis one (original on the right) was used as an indie book cover. I was chuffed with that.

 

myicarus1 (2).jpgA bit of painting, a bit of applique, a bit of embroidery on muslin

 

bestitchedcj_tattoos (1).jpgTrying to do proper embroidery

 

fabriccjquiltfront.jpgComplete with rusty metal stars, wouldn't be the most comfy quilt!

 

fabriccj_bejewelled.jpgFor this one I made a little quilt and then splodged paint through a hand cut paisley stencil. Not sure if it worked.

 

 

 

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Re: February starters 2019 - yes, we rule!

So.... where do I start replying to everyone? Smiley Happy

 

We were halfway through a conversation about car insurance I think....  but yes Trixielady I wouldn't worry about them bumping up your premium on renewal date.  I know that when I informed them about my hysterectomy all they were interested in was me not driving for those 6 weeks.  They didn't put my prices up next time around.  If anything they should have given me a discount for the month and a half they didn't cover me!

But with the lumpetomy/chemo they didn't even ask me not to drive.  Just said if my doc is happy they are.

 

Edinbird I really like that hairband!  You have kept so much hair!  I'm jealous Smiley Happy  it's great that you can cover up the thinner bits with something that just looks normal and not "cancery".  None of us want the pity stares...

Congrats on Norwich and their promotion! Smiley Happy

 

Rosina honestly, you are amazing!  I can't believe you did all that walking and a whole yoga day even after the T aches and pains kicked in!!! They day they hit me I think I managed just under 2000 steps, and that was enough!  You are a wonder womanSmiley Happy Smiley Happy Smiley Happy

 

Sonia yes I had a sore throat kick in with the start of the T pains.  I wasn't too worried about it as it seems a common symptom, but then I ended up in the hospital so maybe it was more of a worry than I thought???  It is still there but not too bad.  Ignorable.

Hope you enjoyed the baby shower

 

Ocean, those embroidery and quilting photos are gorgeous!  I have some far, far, far less good examples of my own which I'll share in a later post. 

Your potential art and craft retreats sound great!

 

Sorry to hear you are feeling down.  I've read that midway through chemo is often a real struggle point, it certainly has been for me.  You've been through a lot but there is still as much still to come which feels like loads.  Plus if you are changing regimes there is all new uncertainty about new side effects.

So sad about the robins Smiley Sad  nature is cruel!

 

Deano I have problems in week 1 with blurry eyesight too, on both FEC and T.  Had to wear my driving glasses to see the telly which I don't usually have to do.  Seems to improve as you move through the cycle though.

 

Sandra I have one immune boosting injection every cycle.  I presume it is similar to filstagram but a different brand name.  I was 7 hours late doing it this cycle as I totally forgot!  Was supposed to do it at 1pm the day after my first T, but I did it at about 8pm instead.  I wonder if that is what landed me up in hospital?? Smiley Sad

I won't be late next time that's for sure!

 

MBJ rock choir looks like so much fun!  Like I said the other day when seaside signed up for something similar, I would love to do something like that but I am so tone deaf that I don't think they would have me Smiley Happy  unless it was just to stand at the back and occasionally bing the triangle.

 

Trixie you asked about ongoing treatment.  I have 2 more T to go, then a month of radio.  And then after that, I also have more surgery, to remove the port a cath and even up my left booby

 

Susie B I hope your ultrasound went well.  That cold gel makes me jump every time Smiley Happy

 

Daisydi how did your bloods go?  I can understand you half hoping for a reprieve week.  But on the other hand we just all want it over with ASAP.  It's a tricky call.  Leave the decision it in the hands of the blood count gods I guess!

 

Seaside, sorry you are having a rotten time Smiley Sad  I just had a chat with one of the oncology nurses here and she said that the 4th cycle of FEC-T, that first T, is the worst one.  She says it knocks the body for 6.  Apparently cycles 5 and 6 are slightly less horrid.  Let's hold her to that!

 

In other news, just after I posted about how nice and comfortable I was in my little side room, they kicked me back out into the waiting room.  So now I'm back sitting up in a chair with my back killing Smiley Sad  they are at least now allowing me paracetamol which helps a bit.

 

Also they apparently managed to get a neutrophils score from the tiny bit of blood they squeezed out of me yesterday with a pin prick test.  I got 2.2 which means I'm just above neutropenic.  Good news but also bad news as apparently if I had scored lower they would find me a proper room.    Sods law.

 

On the plus side, after a doc telling me earlier that I definitely had another night in here to look forward to, an oncology nurse has just visited and said that she is happy for me to go home this evening after a 4th antibiotics drip , if I still seem well and not overheated by that point.

Keep your fingers crossed for me!

Sarah x
PS Marlyn, thanks for making me smile with your vivid stretching descriptionSmiley Happy

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Re: February starters 2019 - yes, we rule!

It certainly wasn't a pretty sight I can tell you! Throw in the bald head too.....eek!! Also, I really can't believe how bloody difficult it is to get up off the floor....that was a cardio work out! 

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Re: February starters 2019 - yes, we rule!

Oh dear Marlyn what a lovely scene you've just described. It did make me laugh😂🤣😃.  

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Re: February starters 2019 - yes, we rule!

Yes, the forum sent me back a week too, odd...

 

edinbird, I've just had to force myself to go on a very short walk ( 5 mins) iv been sat on the couch watching homes under the hammer....a bit of Kyle and generally flicking through my iPad, then I had a light bulb moment and went to YouTube to look up " stretches for beginners " ( well...how hard can it be) after huffing puffing and farting ( hubby calling out....you ok in there)? I couldn't do a bloody single stretch without feeling like I was going to pass out! Hence the walk....oh well.....there's always tomorrow.....x

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Re: February starters 2019 - yes, we rule!

That’s odd I don’t have that...?!

 

Well hello to any new people!

 

Still losing the same amount of hair through washing a week after my first T... it’s not loads but I do start to wonder where it’s coming from! 🤷🏻‍♀️

 

Just sat on the bed bed thinking I ought to do something but can’t be bothered 😂

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Re: February starters 2019 - yes, we rule!

C1D105C3-9982-4B6B-A19E-D0895D32DBC9.png

Think we have been merged with another Feb starters forum!! 

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Re: February starters 2019 - yes, we rule!

Has something odd happened to the feed in the last few minutes. It keeps sending me back to last week’s posts and there were lots of new names popping up! 🤔 x

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Re: February starters 2019 - yes, we rule!

Marlyn, you sound in good spirits today (even with a sore bottom).  🙌🏻. Seaside and Edinbird not so good for you I think. (((Hugs)))). 

Implausible, keep getting the IV antibiotics in you. They seem to work quickly so I’m not surprised you are feeling better already. It will take a bit to recover from the trauma of yesterday though so don’t let anyone try and discharge you until you are ready. 

MBJ your choir pic inspired me to see if there was something similar locally. There is, so may think about joining in the future when my energy levels allow. 

Wishing all my lovelies well this week. 

Xxxx

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Re: February starters 2019 - yes, we rule!

So pleased to read you're on the mend implausible, you gave us quite a fright! Fingers crossed you will be back home at some point today..I expect they need their staff room back now...

 

To everyone who is suffering I really feel for you, I'm relieved I don't have to go on T...at least I know what's coming with fec, there is a definite pattern to it....so far I am mostly getting blurry vision, sore bottom, dry mouth and vertigo.....so god only knows what delights T would have had for me????

 

To everyone going to chemo cocktail this week....good luck....not too long now before we're all gearing up to the final one....I think I may post my finale on that there face book, I haven't mentioned anything on Facebook but I do feel an urge to mark the occasion, my unit doesn't have a bell ( I would be ringing the hell out of it) sooooooo I might post something......

 

I hope all my beautiful sisters can have as good a day as possible......I love you all to Battersea and back!!! Xxxx

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Re: February starters 2019 - yes, we rule!

Positive T update... I’m sat on the sofa with no leg aches! Slight aching in my hips/pelvis which I put down to the injections.

 

Need to go have a shower and wash my hair and that’ll probably make me feel better still.

 

So hopefully that means the bad days last from end of steroids to a week past treatment day for us all. Still got a sore bottom but I don’t think that’s a concern for anyone else!

 

Logged on and sorted out emails and admin, that’s about half my working day done already as a short day when I come back each time.

 

Weather is more grey here at the moment unfortunately but I hope I can get out once my hair is dry. I don’t doubt I’ll still be more tired as I don’t feel quite myself. Mustn’t overdo it and no need to.

 

Hope everyone else is feeling ok today and good luck for those having stuff done, scheduled or otherwise! 😬🤗

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Re: February starters 2019 - yes, we rule!

Morning all

 

I am feeling much much better thank you and quite happy in my little side room that they shoved me in in the middle of the night.  Very peaceful in here!

20190429_091955-picsay.jpg

 

I have books and my other half is en route with snacks, so all is good.

 

I was so out of it at points yesterday with the high temp and pain that I felt almost hallucinatory.  It was rather scary!!!  Today I feel totally normal.  Touch wood.

 

No idea when i get to go home.  They have given up even trying to get blood out of me....  but to be honest I am fine holed up in here for  a while, I am sure they will get fed up eventually of me taking up space and let me go ...

 

Now to catch up on everyone else's posts!!!

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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

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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

Member

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