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May 2020 Chemo Starters

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Re: May 2020 Chemo Starters

Ruby Rose I feel exactly the same. I find my temperature regulation just isn’t functioning properly. I have to keep all the curtains and blinds shut as my bedroom and back yard are west facing. At night I’m up and down opening and shutting windows. 

And in the morning I’m cold for a while. 

I am praying for a cloudy day and we badly need rain. 

XxC. 

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Re: May 2020 Chemo Starters

The mouth pain is the worst for me just now....the nystatin does help, so I hope you are soon feeling better Lisa. My throat is still really sore, but lozenges and alternating hot and cold drinks is making it manageable. 

Re heat.......wow, no bright ideas I'm afraid. The obvious to drink, drink and drink. A spritz bottle of water in the fridge to spray on your face? A bowl of ice cubes in front of the fan to make sure the air is cool and maybe a bit moist? First aid ice packs applied to pulse points? If you don't have them, we use empty plastic bottles filled with water - great for rolling your feet over. Also good for plantar fasciitis. Cold wash cloth in the fridge - apply to forehead, then rewet and recool?  Loose, natural fibres and try not to get agitated about the heat, like I do which then makes it worse! Cool showers - who cares if you have to have more than one a day?

Hope there is something there that helps!

Take care everyone. On a bit of a downer myself so just keeping a bit schtum, but thinking of you all. 

Xxx

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Re: May 2020 Chemo Starters

Hi Ladies,

 

Has anyone had issues with the heat?

I can’t take the heat. Sat indoors with a fan and it’s not even that hot! It’s that mild sunstroke feeling . Haven’t gone outside today . 


Any tips would be great . Hate to think how I will feel when temperatures reach 30! 

Take Care 

Tricia ❤️

Maisy Moo hope your mouth is feeling better today . ❤️

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Re: May 2020 Chemo Starters

Had to use the bat phone for a mouth infection. GP issued the prescription for Nystatin and sent it electronically through to my local chemist. They brought it out to the car for me. So all sorted hopefully.

Good luck everyone. Stay safe ❤

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Re: May 2020 Chemo Starters

Na na Nar na na na Nar na don’t be afraid to use the bat phone 👍🤣😂🤣😂😂keep safe everyone 💕💕Shi xx

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Re: May 2020 Chemo Starters

I’ve been lucky so far. Called the oncology line and they have spent a lot of time on the phone trying to work out the problems. First do you have a cough or temperature. My temperature has gone up a bit but not to what they would call a temperature. I’m usually 36 but on occasions it’s gone up to 37.4. 

Feeling unwell is a difficult one . Cos I do feel unwell . 🤣. But I know what they mean. We go from top to my poor bottom and talk about symptoms. I feel my G.P. Is getting use to me calling but they won’t bring you in. They have improved no end on communication skills . 

I feel guilty calling all the time .( OK twice in a week). Hospital really don’t want you in so to protect you . Under normal circumstances I think I’d be using the Batmobile 😂

I have noticed everyone is working as one big team and I don’t feel forgotten . 

So I get the message is, keep calling if you need to. I find it hard but I usually feel better afterwards ❤️

Love to you all ❤️❤️❤️

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Re: May 2020 Chemo Starters

😁 it was the bat phone fidget, I rang and checked everything out with them during chemo, always best to ask and check it out with your team, they have seen it all before and know what to do 👍 it’s not being dramatic or a pest it’s being vigilant and helping them get you through safely 👍💕💕Shi xx

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Re: May 2020 Chemo Starters

Holy sh!t although I'm LOVING you calling it the bat phone!! I might borrow that one!

Thanks hon x

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Re: May 2020 Chemo Starters

Hi fidget 👍 you can have infection and no temp too, I had burning wee and no temp and it was uti caused by the chemo and needed antibiotics not just a bit of cranberry juice and resulted in 6 day casa nhs stay on my first chemo back in 2017. So after that I was on the bat phone to team about anyo wasn’t sure of during chemo, getting through chemo safely is what matters ❤️💕💕Shi xx

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Re: May 2020 Chemo Starters

I will call them tomorrow. I do put off phoning the treatment helpline, because every time I do, the hospital say to send me over and it's never anything serious but I totally get that I shouldn't rely on that.

Girl Guides promise - I'll call them in the morning. I check my temp regularly and it's never above 36.5 and usually a lot lower than that.

I will be sensible and keep safe.

Thank you 💙

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Re: May 2020 Chemo Starters

Hi fidget, please ring your unit and check about your throat, you might need antibiotics. Main thing is to keep safe during chemo and your team won’t mind they want you safely through too, just because you had it last time doesn’t mean it’s the same thing causing it this time ❤️Just please keep safe 💕💕Shi xx

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Re: May 2020 Chemo Starters

Isn't it weird how we're all the same, but different? 

I think my hair (stubble as it is) is actually growing again! But probably not. 

Right now I have a RAGING sore throat 😢😢 had it last time and the Nystatin eventually helped, but bu**er me.......so I'll join Tricia in feeling sorry for myself just now!

It is good to offload here......thank you pink warriors! Keep fighting 🥊

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Re: May 2020 Chemo Starters

Hi Ladies

So good to read I'm not alone, I'm on day 16 and my hair started falling out yesterday after a few days of having a prickly head.  The silk pillowcase sounds like a good Idea I must have a try. 

I saw a link someone posted about cancerhaircare.co.uk and I contacted them and they were very helpful and their website has lots of links to short videos about hair/head covering options, make up and eyebrows.  The also will send you a free cap and goodie bag.

I am suffering a lot with really cold feet and having to sleep with fleecy socks on.  I was given the advice today to try using a foot spa to stimulate the ciculation so going to give that a try to see if it works.

Stay strong everyone, we can all do this!

Sending lot of hugs to all

Ragusa

 

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Re: May 2020 Chemo Starters

Bless you all, yep this is a hard journey with different mountains to climb

Love and hugs to everyone ❤

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Re: May 2020 Chemo Starters

I’ve been put on antibiotics and steroid Cream this afternoon . 

They think it could be fungal rash and secondary infection . As the tablets haven’t worked they are going all out attack . Something must work . 

Drying myself with a hairdryer will be a new experience for me . 😊

 

All these new experiences just keep on coming .😊

 

The world is gradually opening up and I will be hearing my lovely neighbours enjoying time in the garden with relatives . We will just sit and wish it was us. Feeling sorry for myself so I’ll go now and stuff my face with the only thing that tastes . CHOCOLATE 🍫 

Take Care X

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Re: May 2020 Chemo Starters

I called the chemo line at the weekend and they told me to call the doctor x doc put me on antibiotics. I’m in for bloods tomorrow so I am going to raise it with the nurses there again x 

 

thank you c

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Re: May 2020 Chemo Starters

It’s worth ringing your teams about the spots, they might be able to give you some cream? Anyway best to check all ok ❤️💕💕Shi xx

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Re: May 2020 Chemo Starters

I have had little blood blisters appear around my nose and my skin around there is very oily . Funny as that is the area I would get spots before menopause. I also ended up with a rhino nose two days ago . It’s still very oily . I also woke up with a burning hand . My palm was hot to the touch . I

get eczema on my hands and feet at stressful times. Put some cortisone cream on and it calmed down . 

As a precaution I’m taking antihistamines and anti fungal meditation for the rash on my chest . 

I also bought a pack of two silk pillowcases from amazon . 

Glad to hear everyone is coping the best way they can . 

Tricis X

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Re: May 2020 Chemo Starters

I got horrible pimples on my neck! Blooming sore they were, too!!! Not loads and loads of them, but a few. Savlon actually helped them go down? But nothing on my face. And I totally get why that is more upsetting - it's like added insult isn't it?

 

My hair started coming out on day 18.....even now it hasn't all come out.....my head looks a little like a world map with "continents" of stubble and "oceans" of bare patches 😂😂😂😂

I'm so sorry about the acne though, that truly is pants. Could your toiletries be exacerbating it? 

Sorry I can't suggest anything more helpful....

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Re: May 2020 Chemo Starters

Lovely to read through all these posts. We are bloomin’ warriors.

 

can I ask if anyone has had any drastic skin changes? I have the most dreadful acne on my face, plus a little on shoulders, chest and back. They think it could be caused by the steroids. GP has put me on antibiotics but they don’t seem to be touching it at all. I’m more upset about my skin than I am my hair (although that is not yet falling out at Day15 post cycle 1 of TCHP).

 

sarah xx

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Re: May 2020 Chemo Starters

Hi yes got my silk pillow case from ebay and I also got a memory foam pillow. They have both made a real difference xx

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Re: May 2020 Chemo Starters

Hi - I ordered mine from amazon. I just put silk pillowcase in the search function and bought a reasonably priced set. They do make a difference!

Hope that helps 😊

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Re: May 2020 Chemo Starters

Hi , have been reading on here about silk pillowcases please could anyone suggest or recommend where you got them from please xx

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Re: May 2020 Chemo Starters

Morning Everyone,

I can relate to some of what everyone is saying on here. I had my second chemo on Monday and I have touch wood been better than I was on my first cycle regarding the sickness. I only felt whoosy on the first day and have been fine since. When I was having my chemo this time the nurse said the key was to feed it in slower so she set the timer on the machine for longer and it seems to have worked. She also says to take my anti sickness for the five days at home even if I don't feel sick so I am.. The steroids have affected me more this time so sleep is interrupted but I finished those yesterday so hopefully that will improve.

Regarding hair mine fell out the end of last week and I too was hacking away at it with scissors as no clippers and the remaining comes away each time when I shower so virtually bald now anyway. At least it is cool in the hot weather 😁.

Good luck ladies and great to have you all ❤

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Re: May 2020 Chemo Starters

Hope you pick up this week Fiona. 

Best to be safe than sorry . I swear the steroids mask so many side effects but once they are stopped, you feel bad. 

Just having a shower wears me out . Talking to people is a real effort. I’ve just started to feel sick again so took anti sickness again . Not sure if it’s because I’m not eating as regular or it’s the medications I’m taking . Temperature is ok. 

I bought a pair of silk pillowcases ready for the painful head. I may start using them now. 

Take Care and hope you are out walking soon Fiona X 

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Re: May 2020 Chemo Starters

Hi everyone! Tricia that rash does sound painful....so sorry! The nurses are very good at loading us up appropriately to deal with these things, aren't they?

I was doing much better on day 1 and 2 of the cycle and then got more and more and more tired (which somehow took me by surprise!!??) Felt really quite sick on Tuesday morning and then despite feeling better for a brief period on Tuesday evening, ended up in hospital overnight! I think it was an overreaction on the part of the hospital, but better safe than sorry!

So I've been a bit distracted to say the least. However, feeling a wee bit brighter now so fingers crossed this is me starting to move past the worst of it.

The sore head thing is the worst.....did you get a silk pillowcase? Even now (with my baldy heid) I find it really comfortable. 

 

Much love to you both Trish/Tricia

and to everyone. Take good care of yourselves. 

Fiona.

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Re: May 2020 Chemo Starters

Morning Trish,

ouch about the hair . 

I am already getting sensitive hair so can image how painful it is. Hopefully you will feel better after shaving . Just remember to put the safety comb bit on. Take it gently. When my clippers came the instructions were in Chinese so I had to you tube how to clip 😊

Lots of love and big hugs 🤗❤️

Tricia X 

P.S. Ruby thinks food is more important than my smell now 😊. However she doesn’t bounce on me like she use to . Almost as if she has grown up overnight . I hope when this is over , she goes back to being a pain in the neck .🤣

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Re: May 2020 Chemo Starters

Morning all!

Sorry to hear about the rash, Tricia - I hope the home pharmacy is dealing with it well. I saw your earlier comments about your dog, too. My cat has also been uncharacteristically keeping her distance and, when she does come close, sniffing my hand a lot. If it is possible for a cat to have a confused expression, I'd say that she does. 

Yesterday, at day 14 of cycle 1, my hair started coming out so I decided the time had come to cut it off. I would have done this much earlier, but I don't have anyone to help me cut it and I'm scared of clippers. Anyway, needs must and I thought I'd cut it shorter with scissors first. I set to in a frenzy of random chopping with an enormous pair of kitchen scissors. I was amazed at the artfully choppy pixie cut that emerged and decided to stay with that for a couple of days before having to get to grips with the clipper machine.  But then I was woken in the night with, would you believe, PAINFUL HAIR!! Yes, those poor little follicles are so sensitive now that I just couldn't get comfortable on the pillow. Also when I got up, what had seemed like a stylishly untidy crop now looks exactly like, well, something self-administered by an amateur on lockdown with kitchen scissors. So after breakfast I will need to start squinting at the clipper instruction booklet.

Love to you all

Trish xx

 

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Re: May 2020 Chemo Starters

Hope you are all well ( as can be expected )

 

Its my fifth day since first chemo. Monday I started to get a burning rash on my tummy and under the breast. Very painful . Felt like bee stings. Then on my face . I was suffering pain through the injections. So bad I could not sleep. 

Spoke to my team and now have a rather large home pharmacy going on. It’s as soon as the steroids stop , the horrible side effects turn up. 

Difflam for the sore mouth and throat is a must . I can see how easy to dismiss it but you really do need to get the help before it becomes a bigger problem . 

Im very tired but hoping that I will pick up by the weekend . I’m a bit paranoid about washing fruit and veg . I think my husband is sick of hearing me shout “ Have you washed your hands?” . 

Hope you are all doing ok . 

Love Tricia 

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Re: May 2020 Chemo Starters

That’s good news Maisy . ❤️

Now steroids finished ( last night ), I feel so drained . Hopefully I’ll get some decent sleep tonight . 

Injections giving me on and off aches and pains . I guess that’s the flu like symptoms. ( never had flu )

 

My eyes ache and water. 

Hope you all are having a pleasant weekend ❤️

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Re: May 2020 Chemo Starters

Hi Tricia,

I found the sickness wore off within the first week and I haven't had it for 2 weeks now. I am due my second chemo tomorrow.

I too didn't suffer with constipation, quite the opposite, having to rush to get to the toilet and it is still like that on and off now.

Let's see what the next cycle holds,  all the best everyone ❤

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Re: May 2020 Chemo Starters

Good morning everyone,


I have finished my steroids now and just taking the anti sickness ( Ondansetron) . One of the nurses told me to only take it three days and not 5 as prescribed as it causes constipation. I haven’t had any constipation but my bowels are fighting . One minute it’s like quick get to the toilet then suddenly disappears 🤷‍♀️

I seem to be going normally but boy the smell and it burns. Blooming toxic .🤣

I have been given another anti sickness Med which the nurse suggested I moved onto after the three days. My question is ..

How long does nausea last after the treatment ? Does it go after a few days or last the whole time? I don’t want to mess around with tablets and find myself being sick . I’d rather prevent it. I’m thinking of finishing the five days on these tablets then moving onto the others. 

Tricia X 

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Re: May 2020 Chemo Starters

Oh honey!!! I'm so sorry. It's just the final straw, isn't it? Maybe she will get used to it? My dog has been ok-ish....no real changes except her other mama is the one that takes her out on all her walks now, so I'm temporarily downgraded to 2nd best ma!!

Of course she still loves you....although it's totally **bleep** that she doesn't love the steroids - but then, neither do we so that makes her a dog of exquisite sense and taste!!

Would a virtual hug from me help?

Sending so much love xxx

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Re: May 2020 Chemo Starters

Sorry I’m posting a lot . 🤦‍♀️

It’s those lovely steroids . 

The saddest thing when I arrived home was the reaction of my dog. She wouldn’t come near me and even today she gives me a “sad look” . I was told she could go two ways. Keep her distance or be very cuddly. 

It’s the smell you emit after treatment . She didn’t sniff out the cancer so I didn’t expect this sudden change 😢

 

I feel so unloved 😢

 

Tricia X 

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Re: May 2020 Chemo Starters

God luck Wallflower.

I think my husband is quite looking forward to it. 😊

Tricia X

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Re: May 2020 Chemo Starters

Welcome Mumbear3

My temp was a bit up last night after my first chemo. Back down this morning but having aches and pains. 

Daisy great advice . I neatly forgot to put my injections in the fridge 🤦‍♀️

Im planing on doing my injections at lunch as it will remind me to eat. Husband is going to do it. 

One of the nurses didn’t think the injections caused bone pain when I asked but it’s rather evident on here that they do! I was told to take your temperature before taking paracetamol and if you need more on the 4th hour then take your temperature again before taking them. If normal you should be ok . 

I have two thermometers 🌡. They vary so I know my baseline reading . I’m usually around 36 to 36.6. I take it in the morning and at night . Underarm and forehead . As I can only take paracetamol I have to be careful with temperature . 

When in doubt always call oncology. 

Take Care everyone ❤️

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Re: May 2020 Chemo Starters

If you take your temp first to check its ok then you are usually ok to take paracetamol but obviously check with your unit . 

( paracetamol will mask a temp thats why they say this  )

Hopefully you will manage fine and not get any discomfort.  

Love 

Daisy xx

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Re: May 2020 Chemo Starters

Thanks Daisy D for your tips, i was told by the oncologist that I wasn’t allowed to take paracetamol as they need a true reading of my temp in case it goes up. Will call the unit today to check though.. 

Good luck wallflower too. Xx

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Re: May 2020 Chemo Starters

Thanks for these tips Daisy, my husband has to inject me for the first time today and we’re both pretty anxious about it!

Welcome mumbear, hope you’re feeling OK and there’s lots of support here xx

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Re: May 2020 Chemo Starters

Welcome mumbear3

I couldn’t do the injections but luckily I have someone living with me who relishes the idea for sticking a needle in me. 🤣

 

I started my chemo yesterday . Didn’t sleep well. Woke up and took my Omeprazole . Feeling sick so will take the anti sickness in a minute . Let that kick in before attempting breakfast and steroids . Just hope it’s breakfast in bed. 

Decided to time my injections for lunch time . 11am out of the fridge then 12 I’ll take it. 

My temperature was up a bit last night with hot flush then cool again. I am normally around 36. It had gone up to 37.3. I feel ok this morning . I had pain in my pelvis and right hip but better now. 

I found it hard to eat much yesterday so picked at my meal. Definitely eating bland.  My daughters mother-in- law left a beautiful lemon drizzle cake on my doorstep the night before chemo. If I can’t stomach cereal I’ll have to force myself to eat cake 🤣

Our village Shielding volunteer also left me a pot of honey from her bees. I love honey 🍯 . Everybody has been so kind . 

Glad you are feeling better this time round Fiona. 

I found that my husband has ordered a swing seat ( Wooden) for me to sit in the garden and watch the birds and deer across the field . Was such a lovely thought even though we can’t afford it 🤦‍♀️. He’ll enjoy putting it together NOT 🤣

Have a lovely relaxing day today brave ladies. XXXX

Tricia 

RubyRose_0-1590213280340.png

 

 

 

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Re: May 2020 Chemo Starters

Hi Mumbear3

Sorry to find yourself on here but i hope u will find it a good support with all these lovely ladies. Im from the feb 2020 group.

I have had to have injections throughout my chemo and im a nurse so im used to giving them to others not me !! 

Take the preloaded syringe out of the fridge for half an hour before hand as this helps to stop any stinging . Grab some Tummy fat in between your hand and just take the protective cap off and insert tip of needle into skin . Slowly press the pluunger down and u will hear and also feel a click where the protective spring will activate ready for you to put it in sharps box. 

Make sure you use alternate sides each day just to stop you from becoming sore. 

These injections can sometimes cause bone aches and pains. I find epsom salt baths and some paracetamol help. I also take mine in the evening as i find im better to try to get to sleep than walking about but obviously follow any guidance on time from what your unit has said. 

If you need any further help just ask.

Love 

Daisy xxx

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Re: May 2020 Chemo Starters

Hi there! Sorry that you find yourself here, but you are very welcome 😊

I'm fortunate that I don't have to inject, I'm assuming it's a sub-cutaneous injection like insulin? Maybe one of the other ladies will have some tips.

I felt nauseated on my first cycle, but they tweaked my meds and I had no issues this time - so fingers crossed they can do the same for you.

Hope you have a better day today.

Hugs, Fiona

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Re: May 2020 Chemo Starters

Hi lovely ladies,

I find myself here with you all as I had my first session yesterday. After being booked in for a mastectomy 9th May which was then cancelled on the Tuesday  before due to restrictions of Chemo starting due to Covid. 
It went went well other than nearly fainting during the IV steroids and they had to wheel over the oxygen tank 🤦🏼‍♀️ But always good to have a story I think!

I felt very strange yesterday, tingly in my arms and legs and a mild nausea. Couldn’t eat much but attempted little bits. Couldn’t sleep at all! Hoping to have rest today if needed. 
I have to self-injection this afternoon for 5 days 😱😱😱 how on earth do I do that??
just wanted to hello to everyone and wish everyone the best of luck. 😘

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Re: May 2020 Chemo Starters

Hi Fiona

i have to take 4 tablets . The infusion of steroids was at 11 this morning . I’m only on them for 2 days I think . Then the day before the next session . See how I go 😊.  Can get more done when husband is out the way 🤣

 

on a sad note . The dog won’t go near me. They said that dogs smell you and may keep their distance . I told her it wasn’t my fault and I’ll smell better soon . 😢

 

Shi you are right . Hydrate, hydrate and do what your body wants you to do . ❤️

Take Care

Hope everyone is doing well ❤️

Tricia X 

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Re: May 2020 Chemo Starters

Bless you Tricia!! I was advised to take the steroids by early afternoon to avoid impacting on sleep? So I take two dexamethasone with breakfast, and two with lunch? Might depend on what you are taking, but if you can take them earlier might be worth a try?

 

You are a trooper! Rest well honey xx

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Re: May 2020 Chemo Starters

👍keep your fluids up 👍 Listen to your body and rest when you need to 👍 💕💕Shi xx

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Re: May 2020 Chemo Starters

Hope all went well Zinnia. Hope you had a good nights sleep . 

Im now home after my first chemo session . Not feeling too bad. I had steroids and anti sickness in an infusion . They waited half an hour then gave me my Herceptin injection which was fine . Then an hour later came the TC . First one was the one that makes you sick. It caused my nose to want to explode. It soon wore off. 

The final infusion was ok and then they flushed through . That caused a metallic taste in my mouth . Been home 2 hours and feeling tired and a bit of right hip pain . Need to take steroids and anti sickness tonight . I have a really strong one . They suggest only taking them for three days and move on to the less strong ones due to constipation. I have enough of both to keep me going a good while . Paracetamol on ration as I only got 20. I’ll have to keep putting them on my shopping list . I can’t take codeine. 

I expect to be hyperactive tonight on the steroids so I will probably go all out with my embroidery machine 😊🤣

Or run around the garden naked 😂😂😂

One down 3 to go. Thank you for all your love and support ladies . I know there are people viewing this thread for advice . Please post as we are all a lovely lot. We are here to help each other. 

Now to see what the coming days bring . 

Lot of love and hugs 🤗 

 

Tricia X 

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Re: May 2020 Chemo Starters

Thanks - am going to have some codeine tonight and hope to sleep. And am taking anti sickness tablets again. Think I’ve been a bit adverse to taking any extra meds but definitely need them! 

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Re: May 2020 Chemo Starters

Zinnia I haven’t started mine yet but it’s down on my notes for me to have the injections. 

I read up on the side effects . It’s common to have bone pain and headaches . Feeling sick too. I would contact your team and say how rubbish you are feeling. They maybe able to prescribe something to help . 

Hope all goes well at your CT Scan. 

It must be lovely to be so close to the Downs. Will lockdown been gradually lifted, there are many more people out and about to dodge .

Tricia X 

 

 

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Re: May 2020 Chemo Starters

I’m worried about going out but am really struggling missing exercise. I back on to the Downs but it can get busy out there - think I will have to do something though as I feel so rubbish. 
Has anyone else felt progressively ill after each GCSF injection? I’ve got 3 left this cycle and really worried how I’m going to be tomorrow if it’s more painful than today and makes me feel more sick. I’ve also got a CT scan tomorrow afternoon so hope I’m ok for that.....it feels a bit impossible at the moment