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December 2019 Chemo Starters

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Re: December 2019 Chemo Starters

@Frenchie77, I seem to be quite similar to you Her2+, but ER and PR-.  Have finished 3 rounds of EC and had my 1st Herceptin injection (of 18 rounds) last Tuesday followed by my 1st Docetaxel (of 3 rounds) last Thursday.  Have tolerated the taxel so much better than the EC.

 

good luck 🍀

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Re: December 2019 Chemo Starters

Yes, I'm very impressed! I'm starting herceptin in a couple of weeks time (was on EC which apparently you can't have at the same time as herceptin but moving onto taxol in 2 weeks time and I'll also be on herceptin which I'll have for a year). From whatI've seen it's not that common to be ER- but PR+?

 

I'm so pleased you're doing well now and your blog is a great resource- thanks! Xx

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Re: December 2019 Chemo Starters

Frenchie_77, I started my blog after finishing treatment but I accumulated the info on a spreadsheet whilst I was in treatment from all the reading I did and from chatting with others in the community!  How do you like my data hoarding tendencies?

HER2+ is quite a different disease to HER2- which is why you’re most likely on herceptin?  Some of my chemo buddies were on herceptin and are doing very well now.  Extra monitoring for heart health with herceptin so keeping your cholesterol intake down is a good idea. Xxx

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Re: December 2019 Chemo Starters

Wow Mai7! So much information there! Thanks so much. Did you put all this into practice while going through chemo? Or wait until you had finished? Also, my cancer is HER2+ and PR+ but ER-, do you know anything about this? It seems quite rare.

Thanks again xx

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Re: December 2019 Chemo Starters

Hi Lady34,  I’ve read Jane McLellands book “How To Starve Cancer” and if you take a look at my blog I’ve mapped my breast cancer type and explained a bit how it works.  
Have a look at the METABOLISM thread:  http://lifeafterlola.com/


Ive also written a thread about nutrition called “MALNUTRITION”. I have a Professional Certificate in Cancer and Nutrition.  Of course always tailor your diet to what you enjoy that is as healthy as possible and find a good balance.

 

best wishes

 

Nikki. X

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Re: December 2019 Chemo Starters

@madcatlady, just saw this on Facebook and thought it might bring a smile 😊 

https://www.facebook.com/LADbible/videos/528565784434941/

Hopefully it will work if you copy and paste link - I’m not very tech savvy!

 

Lynne x

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Re: December 2019 Chemo Starters


@Madcatlady wrote:

 

 

 

 

 

 

 

 

 


@livers wrote:

Oh Madcatlady so sorry to hear you had such a rough time of it - I was wondering where you were!  On the positive you are now home and another step nearer to the end.

I was also told by my nurse to gargle with salt water and suck frozen fresh pineapple as soon as I feel the smallest change in my mouth, apparently it works better than any over the counter remedy.  I have been gargling each morning after brushing my teeth just to be on the safe side!

 

Take care and stay strong  💪💪💕

Lynne x



Thanks livers

Yes, I'm so relieved to be at home and 🤞 for the next two.

That's really helpful to hear that, and presumably you haven't had anything too horrible happening to your mouth? Prevention is definitely better than cure.

xx


@madcatlady - so far so good re mouth, just suffering with bad reflux, so munching Rennies as I have no Gaviscon at the mo!

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Re: December 2019 Chemo Starters

Thanks Frenchie77 

xx

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Re: December 2019 Chemo Starters

 

 

 

 

 

 

 

 

 


@livers wrote:

Oh Madcatlady so sorry to hear you had such a rough time of it - I was wondering where you were!  On the positive you are now home and another step nearer to the end.

I was also told by my nurse to gargle with salt water and suck frozen fresh pineapple as soon as I feel the smallest change in my mouth, apparently it works better than any over the counter remedy.  I have been gargling each morning after brushing my teeth just to be on the safe side!

 

Take care and stay strong  💪💪💕

Lynne x



Thanks livers

Yes, I'm so relieved to be at home and 🤞 for the next two.

That's really helpful to hear that, and presumably you haven't had anything too horrible happening to your mouth? Prevention is definitely better than cure.

xx

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Re: December 2019 Chemo Starters

Hello everyone!

 

Sorry to hear you've been having such a hard time madcatlady, sounds horrible! Lots of love to you.

 

On the book front I've recently read "Taking breast cancer off your menu" (or something like that). I found it good, easy to read and understand and certainly some recommendations I'll try to put into practice after chemo (not sure if some things might interfere while having treatment). It's mostly about diet and also lifestyle (stress, sleep, etc). Nothing about drugs.

 

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Re: December 2019 Chemo Starters

 


@Lady34 wrote:

Madcatlady spot on the sights the nurses must see apart from our smooth heads must be a lot to contain. Myself I saw more then I could cope with. Had a few flashback type dreams to get them out of my head I guess. 

 

Purr purr 🙏🏽💕🙏🏽


Hi Lady34

Yes, I think they must see more than they bargained for when they signed up to the job!

Seeing my neighbour in her little black undies and t-shirt (she was too hot for pyjama bottoms) made me want to clap. My knickers may be mainly black, but they're granny pants all the way at the moment. Go girl!

Off for a lie-down in a minute. My cat is already up there and a restorative cuddle is calling.

xx

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Re: December 2019 Chemo Starters


@B4 wrote:

Madcat lady,

 

I always get a smile after reading your post... you indeed have a v good sense of humour.

 

XX

 

B4


Aw, thanks B4!

Sometimes it's through gritted teeth, but it's the only way to get through this!

xx

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Re: December 2019 Chemo Starters

Aurora yes thanks was thinking more of after chemo choices. This book sounds pharma promoting! Not for me 

 

🍏🙏🏽🛎🌲

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Re: December 2019 Chemo Starters

Thanks rizzer as with a lot of these books it’s too contradictory to find a path. Lots of free lists of fruit n veg and diet sheets are on cancer sites already nhs approval is important for our peace of mind. 

Step to far for me would be getting statins and metformin if one hadn’t got high blood pressure or heart issue and diabetes. Warning sign for moi. 

Think I’ll give this s miss even at the kindle price. 

Rather spend time on a workable strategy. 

Xxx🍏🛎🌲🍏

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Re: December 2019 Chemo Starters

Lady34, I read it in on kindle - cost £4.07, so not such an investment. There is A LOT of info to take in, so I ended up skim reading it to get to the summary of what she recommended at each stage. I’m not convinced I understood much of the science behind it as she explained it. 

It’s hard to put it all in to practice, even if you wanted to, as requires getting prescriptions for things you may or may not be suffering from in order to access drugs that also help stop cancer growing/spreading (in her opinion) e.g metformin and statins. I found this quite anxiety inducing, because I thought oh god, there all these things I can’t get hold of that might help stop the cancer coming back...Or, oh god I didn’t realise that taking this or that was actually making things worse etc etc. 

I the end, I’ve tried to do a few of her recommendations, e.g getting plenty of her list of fruit and veg (beetroot/apple/carrot/celery seem to feature) and ignored the rest. 

Her cancer story is interesting, but as with lots of these type of books I think I found it informative on one level but then really confusing in terms of what I thought was the right thing to do.

I reckon it’s worth a skim read (if you can get it cheaper!) and a look at her summary and see what’s easy to do and certainly won’t do any harm/conflict with oncologist view on what you should be doing during chemo. In my case an example of this is I started taking Berberine as a result of her book and then stopped again when I spoke to my oncologist. Basically, I wasn’t willing to take the risk that it would stop the chemo from working. But I do take beta blockers as i was on them to help at diagnosis and I know these won’t interfere with the chemo.

 

sorry long reply, hope there’s something helpful in it! X

 

 

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Re: December 2019 Chemo Starters

Hi Lady34

 

i have the book and started reading it - it is more about repurposed drugs and supplements you can take to block the various pathways to cancer (to stop/starve it). You need to work out a metro map to your specific cancer. You can’t really take supplements when on chemo. 
Aurore 

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Re: December 2019 Chemo Starters

Anyone read this book?

 

Jane McLelland
How to Starve Cancer £29.99 amazon wondered if it’s worth a read. 

 

Looking to dietry support in future health 

🛎🙏🏽🛎

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Re: December 2019 Chemo Starters

Madcatlady spot on the sights the nurses must see apart from our smooth heads must be a lot to contain. Myself I saw more then I could cope with. Had a few flashback type dreams to get them out of my head I guess. 

 

Purr purr 🙏🏽💕🙏🏽

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Re: December 2019 Chemo Starters

Madcat lady,

 

I always get a smile after reading your post... you indeed have a v good sense of humour.

 

XX

 

B4

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Re: December 2019 Chemo Starters

Thanks Shi. I did feel a bit of a failure having a reduced dose, but I know that's definitely better than none if this pesky s*d is going to be given the blasting it deserves! 

We're moving on through this and I know we'll get there 😊

xx

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Re: December 2019 Chemo Starters

Thanks B4

I'm definitely going to try gargling too. 

Yes, I agree, the nurses are just rushing all over the place having to do too much. I won't have been the only person feeling as I did but you can't rationalise that at the time and want to be their priority.

To be fair to her I don't look my best at 5am in normal circumstances, so to be faced with a bald, drooling and wild-eyed spectre probably sent her shrieking back to the nurses' station from what resembled a Hammer House of Horror monster 🤣

xx

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Re: December 2019 Chemo Starters


@MrsS1968 wrote:

Madcatlady eating something cold for docetaxel can't hurt! My chemo nurse recommended frozen pineapple chunks for sore mouths. Apparently the enzymes can help x


Thanks MrsS1968

I took in frozen pineapple for the FEC and still have some in the freezer. I'll take them next time to see if they make a difference.

xx

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Re: December 2019 Chemo Starters

Mad cat lady ❤️❤️❤️ 👭👭👭 sending you unbreakable chain of 💪💪💪💪 we all have hold of you tight ❤️❤️ You are amazing, dig deep 💪💪💪 when I got reduced dose I thought better something going in than nothing and that was the choice I made for me. Remember your reduced dose could be some else’s 100% dose it’s all tailored to you individually ❤️❤️ You do what’s right for you ask your onc the question if you stop chemo how could that impact on you. Your onc will want what’s right for you and everything is your decision ❤️❤️❤️ Keep looking at the spring bulbs flowering 🌷🌷🌸🌼🌸that’ll be you when chemos done 😘😘 sending big ❤️❤️💕💕Shi xx

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Re: December 2019 Chemo Starters

Thanks Lady34

Yes, my cat is a real purrer too. Just hearing it makes me feel calmer. I ought to record it to listen to in hospital seeing as I can't smuggle her in!

Thanks too about the gargle. 

xx

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Re: December 2019 Chemo Starters

Hi Ostrich Kat

It's so tempting to get everything done in the week you feel okay, isn't it?!

Hope you feel okay now you're off the steroids.

xx

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Re: December 2019 Chemo Starters

Morning rizzer thanks I did get 2 batches of sleep so 4 hours. On track took 4 steroid tabs another lot at lunchtime then injection at 6pm and done! Actually feeling up to doing a bit of cooking today!  

How was your night rizzer? 

Madcatlady

correction to my salt gargle add 1/4 tsp of baking soda to the salt water. I just use the cooking baking type. 

 

Love hugs to all 🌲🌲🌲🛎🛎🛎🙏🏽🙏🏽🙏🏽

 

A message to the poison???

“Docataxel you better do your work target and clear all that’s necessary!!! “

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Re: December 2019 Chemo Starters

Dear Madcatlady,

 

Sorry that you had a tough time, but glad that you are at home with your cat (cats). I can see some very useful suggestions sent by our group, please try them, I am myself going to use saline water gargles. Loss of taste is indeed bad, having that myself.

With re to nurses... sad story is that they are always overworked (I work in NHS) and believe me there are usually cuts on the front line staff rather than management ....

 

loads of hugs, best-est wishes and positive wibes!

 

B4

 

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Re: December 2019 Chemo Starters

Oh Madcatlady so sorry to hear you had such a rough time of it - I was wondering where you were!  On the positive you are now home and another step nearer to the end.

I was also told by my nurse to gargle with salt water and suck frozen fresh pineapple as soon as I feel the smallest change in my mouth, apparently it works better than any over the counter remedy.  I have been gargling each morning after brushing my teeth just to be on the safe side!

 

Take care and stay strong  💪💪💕

Lynne x

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Re: December 2019 Chemo Starters

Morning lady34, how was your night? X

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Re: December 2019 Chemo Starters

Thanks Madcatlady 

what sorted my mouth which was bad a month ago. Salt water gargles 2 twice to 4 times day just 1/2 tsp salt half mug tepid tap water. Seem to kill any bacteria better than mouth wash. Also a few ice lollies a day usually before eating. 

Now 3 weeks later I’ve mouth in control !!!

now for sleep tastebuds etc 😀 onwards 

big hugs yes the nurses are pick n mix. I had caring ones plus burnt out ones but hubby slept in a waiting room all the 5 days I was in. So did my nursing too!!! He also didn’t sleep 5 days !

 

🙏🏽💕🙏🏽💕🙏🏽💕

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Re: December 2019 Chemo Starters

Oh rizzer, you lovely lady; just seen this and got all teary! Thank you 😁

I really did feel I couldn't go on with the treatment at that point. 5am with very little sleep is not the best time to make decisions of such magnitude, but I was incredibly frightened and struggling.

What made it worse was that the nurse seemed quite frustrated as I was trying to ask for a blanket (I hadn't got one on the bed and the wind was really strong), but I wasn't able to make much sense. I know she couldn't have done much, yet once she'd understood and got me a blanket she left me crying and trying to tell her I couldn't swallow.

Just to have sat with me and calmed me down enough to try a few sips would have stopped me panicking. 

On the plus side (got to be glass half full!) I do know now what it might feel like on the other cycles, so forewarned is forearmed.

I don't know what I did to avoid these problems in round two. I just hope it comes back to me for five and six!

Big, big hug back!!

xx

 

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Re: December 2019 Chemo Starters

Thanks Shi.

I know it's a bit of a lottery how you react, but the oncologist had said she'd give me a reduced dose to try and avoid another admission but it happened anyway. So I guess it might be reduced further next time, which makes me worry if it will work.

I took a photo of the stool chart in the ward toilet and suggested to my colleague who I do work training with that we might use it as an ice breaker exercise at the start of our training courses. We ask things like 'tell us an interesting fact about yourselves' so we could incorporate the chart, surely.

Well, it would be one course they wouldn't forget!

xx

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Re: December 2019 Chemo Starters

Hi Lady34

Mmm, left over curry...yum.

Two long days sounds rough ☹

Fingers crossed you get some sleep if the steroid fairies are kind!

xx

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Re: December 2019 Chemo Starters

Hi Ostrich-kat

Sorry for your side effects of sore mouth, I have got it off and on (more on than off) through out the treatment at time unable to eat usual food.

I also have found that using biotene tooth paste has helped me prevent having sore mouth and also using the mouth wash Difflam (I am sure that your onc team has already prescribed you that.

Having cold water, cold milk, cold yougurts/ ice creams & soft food helps  (liquid food esp using straw to drinking including frequent sips of water has helped.

There is good information on this link... (which I found useful).

 

https://www.mskcc.org/cancer-care/patient-education/mouth-care-during-your-treatment

 

Thanks

B4

 

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Re: December 2019 Chemo Starters


@MrsS1968 wrote:

Madcatlady eating something cold for docetaxel can't hurt! My chemo nurse recommended frozen pineapple chunks for sore mouths. Apparently the enzymes can help x


I am def trying this after having lots of mouth issues, this time i drank ice drinks and had ice lollies so see how that helps. 
so far so good but only On day after!

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Re: December 2019 Chemo Starters


@Madcatlady wrote:

Hi Ostrich Kat

How are you feeling? I've got my second docetaxel on 2 March and wonder if I'll have the same reaction of two weeks of rubbish and one of being okay.

I was very impressed to hear you'd moved house during chemo. What a star! 

xx


So far im ok but finished my steroids today so see how i am from tomorrow!

the house move was enforced rather than choice but at the same time not being at work has helped really. 
think iv prob done a bit too much but finally finished sorting the house and wanted to get it done while i feel up to it!

 

 

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Re: December 2019 Chemo Starters


@Madcatlady wrote:

Hey ladies

How is everyone? Just catching up on messages and can see lots of treatments last week. 

I was in hospital from Sunday to Thursday as I was neutropenic again. That was in spite of being halfway through the filgrastim injections. I'd got a really sore mouth and throat and suspected I'd got oral thrush, but my temperature was okay until Sunday.

IV antibiotics and anti-fungal tablets helped but my temperature kept spiking so they gave me another IV antibiotic as well as a one-off.

I struggled to eat anything solid until yesterday when it seemed to get less painful and congested, so treated myself to Maltesers and a chocolate cereal bar, which were grand!

I'm now sitting on the bed with my book and my lovely cat 🐱 

We can do this. I felt completely overwhelmed in the early hours of Monday morning, lying in hospital unable to even swallow water (and unable to talk clearly to explain to the nurse, because my tongue seemed like a huge thing and my throat felt like it was closing up) but today, seeing blossom and plants flowering in the garden, I feel much better.

Love to all.

xx


That sounds rough, what treatment are you on? 
I suffered the same on my docetaxol altho i was borderline neutropenic so managed to talk them in to oral antibiotics at home after iv antibiotics in a&e

but i started with oral thrush which turned in to a throat infection, was rough for a week.

 

hope this time i avoid that!

 

hope you recover quickly x

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Re: December 2019 Chemo Starters


@rizzer wrote:

Hey ostrichkat!! So lovely to hear from you. What a happy coincidence to bump in to MrsS1968 in the ‘real world’...
Wishing you all good things and the very best for your next steps. Are you having radiotherapy? X 


Yeah ill be having radiotherapy, think ill have a 6 week break first after chemo and poss another op.

 

it was lovely to see someone in real life!

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Re: December 2019 Chemo Starters


@MrsS1968 wrote:

Ostrichkat

I'm in on the 12th. 9.45am with consultant and treatment at 11am. Hopefully our paths will cross. Will that be your last one?! Happy dance....


Yes last one👏👏👏👏👏

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Re: December 2019 Chemo Starters

Aw madcatlady lady sad to know you’ve been in nhs. It’s such a downer. Glad you’re home with cuddles and cat. Strokes and cat comfort  are magic. I’m getting my share of mine here. She purrs so loudly. Love it. 

Stay warm rested and strong. 

 

Sending love hugs and 🛎🙏🏽🛎🙏🏽

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Re: December 2019 Chemo Starters

Rizzer 💪💪💪you are Wonder Woman in disguise 💪💪💪 amazing you managed all that 👍👍I just used to exercise my finger ordering lots of wigs 😁💕💕Shi xx

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Re: December 2019 Chemo Starters

Hi Rizzer

I'm doing ok 🤞 just knackered. We are going to see both parts of Harry Potter and the Cursed Child tomorrow. Just hoping I last that long but at least it's all sitting down 😬. Well done on the digging! Hope it's appreciated!

Madcatlady I do feel for you with all those hospital admissions. 

Lady34 hope you're doing ok.

Big hugs to you all ❤

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Re: December 2019 Chemo Starters

Madcatlady eating something cold for docetaxel can't hurt! My chemo nurse recommended frozen pineapple chunks for sore mouths. Apparently the enzymes can help x

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Re: December 2019 Chemo Starters

Hey lady34, left over curry, yum! Fingers crossed re the SEs for you over the next couple of days... 

I decided I needed some fresh air earlier so thought it would be a good idea to dig out the floor of a field shelter that the prior owners of our house used to keep donkeys in (so we can make a play-hut for my son to have) Well, obviously felt like someone had hit me with a bat round the head after a while, so had to come in and lie down! The smell of partially rotted layers of donkey urine on many layers of straw didn’t help much with the nausea either.

Ive taken no steroids at all since I came home yesterday, so am crossing my fingers that the nausea doesn’t surface too strongly

How are you doing MrsS? X

 

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Re: December 2019 Chemo Starters

Hey madcatlady, 

my god you’ve been through the ringer. I can’t begin to imagine having to go through all those hospital visits. Made me tear up thinking about you lying there unable to swallow or communicate. I’m so so sorry this is happening to you each bloody round. I’ve been wondering where you were and was concerned you might be in hospital again, but hoped not obviously. Sending you so much love ....and thank god for pets eh? My dog knows I’m not fully well and keeps following me to the bedroom and fussing round me. It’s such a pleasure to give her a good cuddle and tell her I love her. Totally massive hug madcatlady. You might not feel it, but you’re amazing and ARE going forward and getting through this. Thinking of you X

 

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Re: December 2019 Chemo Starters

Madcatlady ❤️ It’s a bit of a lottery, they don’t know if you will end up with low neutrophils and one round can knock you for six then you could sail the next one, it really is a rollercoaster you just grab on the handrail and hold tight ❤️You know you are doing all you can to get through chemo and that’s all that matters everyone is different ❤️ I bunkered down all chemo and others were bobbying off to work during chemo 😁it’s just doing what’s right for you ❤️ I must admit after getting 6 days casa nhs after my 1st Chemo in oct17, I had a steak every day and a spoon of life Mel honey a day my chemo infusion was also reduced for remaining 5 chemos. You are 💪💪💪 I went potty and ended up looking at the Bristol stool chart cakes on google that trainee doctors and nurses make when they graduate 🤣😂🤣😂so you are doing amazing ❤️❤️💕💕Shi xx

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Re: December 2019 Chemo Starters

Hi madcatlady 

two long days 10. - 5.30 but done now home tired eaten left over curry. Ready to lay down but waiting to digest a bit. 

 

Side effects may may start tomorrow 2 lots of steroids and injection so will see how it goes. 

 

Rizzer howre you and anyone else started today. 

Sending hugs of courage to all 🙏🏽😁🙏🏽🌲🙏🏽🌲😀

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Re: December 2019 Chemo Starters

Hi Ostrich Kat

How are you feeling? I've got my second docetaxel on 2 March and wonder if I'll have the same reaction of two weeks of rubbish and one of being okay.

I was very impressed to hear you'd moved house during chemo. What a star! 

xx

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Re: December 2019 Chemo Starters


@rizzer wrote:

Hey all, 

Still awake!

Had a crappy evening but slept for a bit so hope to feel a bit better in the morning. 
Good for you adelemck - it feels good to take a bit of control of the situation. 
Good luck tomorrow Lady34, keep us posted and hope you yummed down your curry! 
Thanks mrss1968, I hope you’ve managed to get some sleep and the nausea is not too overpowering. What’s the news from ostrichkat? Where has she got to cycle-wise with this chemo malarkey? Xxx


Hey rizzer; how are you doing? 

xx

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Re: December 2019 Chemo Starters

Thanks Shi. I don't feel hugely strong at the moment but will get there! I will definitely ask for the anti-fungal tablet to keep it in reserve.

I know lots of us have been in hospital and that it's an occupational hazard of chemo. I knew it was a possibility, and maybe it's me not understanding how strong a possibility that it could happen several times, but I wonder if there could be more said about this in the units.

Does anyone else feel they were a bit unprepared for potentially multiple admissions to hospital? 

xx