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June 2020 chemo starters

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Re: June 2020 chemo starters

Thank you all for your lovely responses and guidance. 

Tara the wig looks amazing. I have an appointment next Tuesday to go and find one. I'm hoping my hair holds out until then !! 

About spots !! I've never suffered from spots but I have now got loads . Around my hairline , on my face , shoulders and this morning on my back. Should I ring the team ?  It sèems such a minor thing to call for . I keep putting sudocreme on them but some of them are quite sore . 

Still feeling ok and legs seem to be getting better . Hoping it lasts !! 

Claire xx

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Re: June 2020 chemo starters

Hi lam, 

I brought the wig from Trendco online. The lady Julie did a video call on WhatsApp to help with the fitting. It was £408 as it is real hair but well worth it.  When I got It, it was really long so my hairdresser cut it without it on my head the best she could during lockdown, but it annoyed me today when I wore it to my blood test. I thought it was too heavy and I could not get it to fall right so I went to my hairdressers house. She is my best friend and I got her to cut it whilst on my head. She put the plait in the front to hold the hair off my face. It is so much better and feels better on my head. I made sure I used sanitiser and got changed as soon as I got home.

 I have a free wig coming from the hospital, but this is not real hair although I have to say the ladies on the unit that have had wigs from the same place look great and you can’t tell it’s not real hair. I just panic brought the one I have because I can’t collect the one from the hospital until the 22nd July. When I was first diagnosed everywhere was shut and I did not think I would cope without one, although I quite like being bald and just wearing my cap. This is a nice style too.

 Tara xxx

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Re: June 2020 chemo starters

Tara the wig looks amazing you can’t tell it’s a wig.  Where did you get it from? As I said mine were awful the kids and husband nearly wet themselves laughing at me 😂 xx

 

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Re: June 2020 chemo starters

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Re: June 2020 chemo starters

Hi Claire,

I’m Tara, welcome to the train.

Like the other ladies have said drink plenty and contact your team with any issues even the tiniest as they will often be able to sort them.
 I am on FEC-T 6 rounds, due my 2nd round in Thursday. Had my bloods done today so fingers crossed all will be okay.

 

 It is brilliant you weren’t sick. I felt sick but luckily was not sick.

 We are all here to support one another and get each other through. Together we will do this 💪

 oh ladies I had my wig on for half an hour today and it was so heavy and I could not see in front me. I took it to my hairdresser tonight and got it cut differently. Feels so much better and more like me.

 Hope everyone sleeps well!

 Tara x

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Re: June 2020 chemo starters

I’ve not had any injections either and I’m on EC. Perhaps it depends on your pre chemo blood results? I’m not sure what the injections are soo don’t really know. 

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Re: June 2020 chemo starters

Hi Claire, 

I'm sure you'd have been given the syringes to self injected if you were meant to. Maybe you'll get them when you move on to EC. That's brilliant about your lack of nausea even without the medication, it sounds like you're doing really well. Check with your consultant when you move on to EC as it may be that nausea is more likely with EC, I think hair loss is more common with epirubicin too.

Stay well! Tabs 

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Re: June 2020 chemo starters

Hi Claire,

Welcome to our little gang. Sorry that you find yourself here too. 

I had my first cycle of EC on 23rd June and am having 6 cycles of EC. I had surgery, lumpectomy, breast reduction and axillary node clearance at the beginning of May. I’m having radiotherapy after the chemo and a reduction on the other side after that. 
I too have been ok so far. I had a little nausea but the tablets have helped I’ve also had some heartburn but not badly so. I’ve been tired and tried to have a half hour nap on an afternoon and trying to walk and get as much fresh air as possible too. 
I have noticed that I seem to have come out in spots over the last couple of days too, so I look a bit like a teenager! I’ve not lost my hair yet but it won’t be long I don’t think.

The hydration is really important, I’m trying to drink 2+litres of fluid a day and keep checking by doing the skin pinch test on my hand. I’ve also started taking a teaspoon of manuka honey everyday. 
I was also told not to take paracetamol if I think my temperature is going up.  
I can’t think of anything else except we’re all on similar journeys and are all here to help and support each other and it is nice to have others who get what we are going through. 

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Re: June 2020 chemo starters

Hi claire

welcome to the group, I’m having 6 rounds of FEC so different to what you are having.  I had my first round on 18th and due my next one on 9th July.  
All I can say is make sure you drink plenty and rest when you need to.  I was really sicky after the first round and the ladies in this forum were all amazing and told me to speak to my oncology team and they have agreed to alter my anti sickness meds so fingers crossed for next time.

I wasn’t given injections and asked and not everyone is given them so don’t worry 😉 

i hope it all goes well for you 

Leanne xx 

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Re: June 2020 chemo starters

Hi Tabs 

Thank you for the info . 

I've been drinking loads of water ( I usually do anyway as I was a runner ) and I'm sure it's helping . 

I haven't been given injections to give myself . Is this normal procedure ? I was given anti sickness tablets and told to take them if needed but as of yet I haven't felt sick at all . I'm really surprised how well I've felt . 

I've been having baths with Epsom salts to ease pains in my legs , my nurse said this was ok . Again I used these before anyway due to running . 

I decided in the beginning not to have reconstruction. It wasn't an option at first because of Covid but then they offered me partial before my op but I declined . I wanted to be in and out of hospital in a day , which I was . 

Thanks for your response 

Claire 

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Re: June 2020 chemo starters

Hi Claire, 

I had my second cycle of EC yesterday, I move on to 3 months of paclitacel at the beginning of September and then like you radio and tamoxifen or some equivalent and hopefully some surgery to adjust my wonkiness. I've gone full circle from wanting both breasts off on diagnosis to reconstruction on the right side which was changed to implant because of covid and then full mastectomy and being distraught about losing my nipple and skin and desperate for reconstruction (and tummy tuck) to now just wanting my left breast off to match. I'll probably change mind again though. With regards to your chemo you may be better talking to the other girls on paclitaxel but I think the one thing we all agree on is drinking lots of water and taking the full course of anti sickness medication. I've also recommended regular gargling with salt water as that was the solution for the sore throat that I developed on day 4. Soaking my bottom in salt water in Bath, bidet or clean washing up bowl also worked for me from day 5. I think it's really important to get outside in the morning, even for just 20 minutes in a mask with a friend in case you unexpectedly need help. Your body will tell you when it wants to lie down. One final tips that I got from my consultant last week is to take a paracetamol (if you're not allergic) an hour before you self inject yourself with the thing beginning with f that helps the white blood counts not dip too low. Apparently it's common for it to cause a temperature. Nb. When I called the hospital on day 6 because I had a sore throat and 6 hours of a slight temperature (37.6°C) they said not to take paracetamol as it would mask the symptoms if I did have an infection as I wouldn't know if my temperature would have carried on increasing otherwise if that makes sense). Feel free to set me straight on anything I've said or add anything, especially if you've got Nb-paclitaxel experience. Good luck, it's much better once you've got a cycle under your belt. I was pretty much OK from days 8-21 if that gives you something to look forward to. Tabs

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Re: June 2020 chemo starters

Hi everyone .

I'm Claire and I had my first chemo on 26th June so unsure if I should join this thread or the July one ??

I was diagnosed late April with invasive ductal and lymph node spread. I had a single mastectomy in late May and full node clearance. The results came back as 35mm invasive ductal along with 30mm DCIS ( non travelling ) , 18 lymph nodes removed and 2 cancerous , Grade 3 .

I'm having 6 rounds of chemo . 3 Nab-paclitaxel (Abraxane) , 3 EC. Then radio and Tamoxifen . 

I had my first one last Friday and so far feel ok , just quite a bit of tenderness/pain in my legs which my nurse told me to manage with paracetamol/ibuprofen . I'm not getting too confident as I'm expecting it to hit me anytime. Any advice greatly received . 

Thanks

Claire 

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Re: June 2020 chemo starters

Morning Tabs,

 The hair is a pain but your right it does show the chemo is working.

 I do hope everything goes well for you today I am with you all the way. Please do take everything the give I do. It seemed to work well for me last time.

 Sending lots of strength and love 💓  
 

 Tara xxx

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Re: June 2020 chemo starters

Hi Tara, 

I definitely bloated with the steroids in cycle one but I think I lost the weight by some time in week 2 (or maybe I just got used to it). I'm just about to have take 2 of trying to fit a port followed by cycle 2, hopefully using the port. My hair started falling out on Saturday, nearly 3 weeks in. I was a bit low as I'd just begun to think that maybe it won't happen to me. At least it means the chemo is working. Am nil by mouth now until the port procedure. Hopefully I won't be too nauseous this time, I'm definitely going to have all the drugs they give me, bloatedness or not. I hope you all have a nice time today. 

Tabs

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Re: June 2020 chemo starters

Hi Lam, my head is not too sore just a little sweaty lol 😝  

 Don’t worry about looking like an alien I am also there! Strangely enough I still have to shave my legs and under arms.

 Had anyone else swollen from the steroids?

 

 Hope everyone starts to feel well soon.

 

 Sleep well.

 Tara xx

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Re: June 2020 chemo starters

Hi lam, 

So sorry you’ve been feeling so rubbish. You really should contact your team as they will be able to help you with things. They can give you different drugs to make things easier for you. You shouldn’t need to suffer so badly. So sorry the wigs were no good. 

I felt really grotty this morning but my sister in law who has been on chemo for a long time, not breast cancer, tells me it is my body reacting to coming off the steroids last week. I do feel much better this evening and I managed a bit of a walk with the dogs and I think that helped. 

I think I’m going to go for cutting my hair off tomorrow as it’s going to start coming out soon. Im sure I’m going to look like one of those aliens with a big bulbous head! 

Take care everyone. xx

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Re: June 2020 chemo starters

thank you Ann I will let them know as don’t want to feel like that every time xx 

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Re: June 2020 chemo starters

Hi Iam477 please tell them ebfore your next treatment, they can stop all the sickness, they did for me and it allows me to sleep and start eating better.  Thinking of you aNN

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Re: June 2020 chemo starters

oh Tara I hope it’s not too sore for you.  
I didn’t call the oncology team and just pushed through it all.  I’m with you on the tiredness through nice never felt this tired before.  
Work have been amazing and have told me that I don’t need to go back until January (on full pay) but I’ve had 5 weeks off and I’m getting bored.  They have thankfully agreed that I can go in as and when I feel like but on light duties.  I will just have to see how it goes.

ive been having a lot of light headed ness lately but apparently my calcium levels are really low at 2.1 so I’ve been put on adcal to try and get the levels back up.

hope everyone is ok x 

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Re: June 2020 chemo starters

Hi lam,

 I am sorry that you have not been feeling well. Have you contacted your team to tell them this? They may be able to sort you out next time around with better sickness meds etc. I have my second round in Thursday and are dreading it. I have not felt too ill but the last couple of days have felt really tired. My oncologist did say that sometimes the first chemo is the worst and it gets better as you go on. Hope this is how it is got you.

 I have not worn my wig out yet. Put my cap on to go for a little walk around the block yesterday and today, although this afternoon I had a lie on the bed to watch Peaky Blinders and when I got up I felt bald patches. My husband won’t shave it any shorter as he says it will be stubbly and may become painful. I will upload a pic to show you.

 Sending love to everyone  

 Tara xxx

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Re: June 2020 chemo starters

Sorry not been on for a while.

happy belated birthday horseylass.  Tara your wig looks fab.  My hair is starting to come out but not enough to shave it yet thankfully.  My wigs arrived and they have gone straight into the bin.  I thought I’d have a couple of different ones but omg 😮 I look like I’m in drag so I think I’m going to embrace the boldness and just wear the beanie hats instead.  When did people start to really notice their hair was coming out? 
I hope everyone is coping with their sessions of chemo.  I was so poorly after my first one on 18th and so I’m dreading the next one on 9th July I’ve never felt so tired, drained and sick but thankfully since about Wednesday this week I’ve been feeling better.

i promise I will try to come on more as you are all so supportive. 

i would post pictures of the wigs but I’m worried you will all get a stitch laughing lol 😂 

everyone enjoy your weekend xx

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Re: June 2020 chemo starters

Morning ladies,

 Thank you Ann for your advice, I hope I too am the same as you.

 Hope everyone is feeling okay today. The weather here is better. Warmer but windy too if you know what I mean?

 My shirt hair has started falling out now. I feel

like I have been to the hairdresser as I woke up with tiny pieces stool to my face. I am like my dog shedding now 😝  

 Have a nice day all

 Love 💕 Tara xxx

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Re: June 2020 chemo starters

Tara I haven't found the 2nd or 3rd any harder, possibly a bit easier, perhaps because it's jus more familiar.  Hope that helps.  Love aNN

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Re: June 2020 chemo starters

Thanks ladies for the lovely comments about my wig. Although I have to admit in the house I prefer my shaven head. It is so much cooler. Watched my boys play on their scooters in the culdesac today and just looked my cap on.

 

 Sorry to hear you were sick yesterday but glad you feel better today. I have felt so tired even had a little nap earlier. Beginning to feel worried about my next cycle on Thursday now. Scared it may be worse than last time. I also get really anxious about the cannula. I hate the way it feels in my hand. Think I need to grow up a little. Just want his to hurry up and all be over with. 

 Glad I have the support if such lovely ladies. Thank you 😊  

 Tara x

 

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Re: June 2020 chemo starters

Tara that wig is fab - you look amazing! 

Was sick three times yesterday but slept better than expected and feeling ok today cross fingers! Been enjoying the cooler weather and chilling, hope everyone else is having a relaxing weekend too.

xxx

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Re: June 2020 chemo starters

That wig looks amazing, you would never know.

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Re: June 2020 chemo starters

Morning ladies,

Thank you Horsrylass!

 Hope everyone is doing okay today. The weather here is a lot cooler which for me is lovely.

 Hope you are feeling okay after your chemo yesterday Cubot and are not too sick this time. That goes for all you other beautiful ladies that may of had chemo recently and I have left out. Please know I am always with you, even though I don’t always remember x

 Have a good Saturday!

 Lots of love 💕  Tara xx

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Re: June 2020 chemo starters

How fab do you look Tara? Beautiful. 👍🏻👍🏻👍🏻🥰

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Re: June 2020 chemo starters

Thanks Shi,

Mind you I prefer my short hair around the house in this heat. Will wear the wig when I go out.

Night night x

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Re: June 2020 chemo starters

Tara ❤️ Stunning 👍💕💕Shi xx

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Re: June 2020 chemo starters

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 me with my wig on x

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Re: June 2020 chemo starters

Hi all

Tara, thanks so much for the photos the one with your kids too made me smile so much!!

Cecilia, so sorry to hear about your hand, get well soon! I'm keeping a photo diary (lazy person's scrapbook!) and find it helps.

There were lots of posts to catch up on with everyone's news so just to say I'm thinking of you all but feeling a bit sick from chemo today so going to stop looking at the screen now.

xxx

 

 

 

 

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Re: June 2020 chemo starters

Hi All, 

My port insertion was aborted today as they weren't 100% sure it was going where it was meant to so it's been rescheduled for first thing Monday in the main building where they'll have full support if there are any complications. On the plus side, whilst under observation afterwards I spent half the day in an air conditioned room to myself with nice cotton sheets. I later discovered the roof garden whilst I was killing 30 minutes waited for a chest xray which was nice (and meant I could take my mask off). I also found out by the by that I'll almost certainly be having radiotherapy on the whole chest cavity and that my bloods are back up to normal which means that my chemo on Monday should be able to go ahead as planned which is good (assuming my blisters don't get infected). I wish I'd thought about a scrap book, that's a really nice idea. I hope that you're all on track for a good weekend, Tabs xx

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Re: June 2020 chemo starters

Hi Cecilia,

 If you look above the text box there is a photo icon if you press that then you can either take a photo or upload one from your phone.

 I started to write a diary of how I felt but to be honest with home schooling and not feeling too unwell I have not written in it since the first few days after chemo. I did however take pics of the children cutting my hair yesterday and also kept a lock of my old hair so will add these to my diary as a kind of scrap book. Fab idea

 glad to hear your hand is better and you have a good network of support around you. It makes all the difference. In fact not sure if anyone else has found the same but the people you thought were your closest friends before diagnosis seem to dwindle and those who I never really had much time for have been the best support I could ask for? You should never read a book by its cover I say!

 Thank you for the nice comments ladies. They make me feel better about myself. 

 Hope you are all enjoying the beautiful weather I am currently sat in the conservatory with all windows open and fan blasting at me. Lovely!

Lots of love 💕  

Tara

 

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Re: June 2020 chemo starters

Thank you everyone 

you are really rocking that short hair cut Tara 

I was Exactly the same hair was all knotted 

and difficulty to comb looks much better now that it’s off 

hand is still in bandage definitely not as painful as it was before 

my husband is here doing everything and friends and Neighbours have great 

Tabs I’m getting picc put in on the 15th of July

hope they give you appointment soon  

I feel lucky that am able to eat

in fact I feel quite well and I hope it’s the same for everyone else 

I m very glad that we are all getting the best out there 

keep well everyone and stay safe xx

How do you post pictures on this forum 

mum trying to keep a scrap book 📖 is anyone else doing the same?

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Re: June 2020 chemo starters

Hi Ann,

Thanks for the advice. I am trying to drink plenty as my whole body has swollen from the steroids I think. Hope I will be okay to have my second round next Thursday.

 How are you feeling Ann after your chemo? Hope your nausea is under control.

 Thank you to all of you that have said they like my hair. I’m not sure I like it but is so much cooler. My husband thinks it looks great but he always says that lol 😝  

 I will take a pic with my wig in when it cools down a little later and post on here.

 My oncologist was suppose to be phoning at 11 to talk to me about my chemo but as of yet has not called. Think everyone is so busy at the moment with chemo only just starting back up again in my local hospital. I’m not Poorly anyway so are not too fussed.

 

 Have a nice afternoon ladies!

 Tara xx

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Re: June 2020 chemo starters

It really suits you, well done.  I have my 3rd chemo today and my blood pressure was a bit low because I had not been drinking enough water so keep the fluids up girls.  I check by pressing a finger into my cheek and seeing how long it my skin takes to come back to shape.

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Re: June 2020 chemo starters

Oh Cecilia I hope you heal ok, it’s so hard to not hurt yourself.

Tara, you really suit that cut. My hair is so long due to lockdown I’m hoping to cut it short before it all goes. 

I had a lovely birthday, thank you all for your kind wishes. 

Take care everyone. xx

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 my kids got involved too! X

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Re: June 2020 chemo starters

Morning everyone,

Little cooler here today after the heatwave yesterday.

 Well I finally took control yesterday and got my husband to shave my hair to grade 3. I have really thick hair and although it was coming out in clumps I had no bald patches but could not stand it falling out anymore. I was told by bc nurse not to mess with it too much but how can you sit there with knitted hair? I washed it and brushed it and my kids were picking it off me and the floor. Even the Dyson struggled to get it up 😝 I feel really relieved today like a weight has been lifted off my head! I will send a pic and then one of me in my wig later. I am happy to just be bald at home at the moment. Have got some grey hairs though! My husband was shocked as he has never seen my natural colour.

 I am sorry to hear about your accident Cecilia hope you are okay. We can damage ourselves more easily on chemo. 

 Tabs I brought some converse ready for treatment as well fitted shoes were recommended. Have to say I was worried about blisters as always get them when wear converse, but touch wood been okay so far.

 Hope everyone has a nice day and feel as well as you can.

 Tara xxx

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Re: June 2020 chemo starters

Hi Cecilia, 

You poor thing, I hope you heel quickly. I always feel so stupid when I hurt myself like that but there's nothing you could have done to prevent it. Have you got anyone to help you at home? I hope you get better soon. I got a pair of blisters on my heals yesterday wearing my new trainers which was really stupid, I should have known to wear them in with plasters. I'm just waiting to be called in to have my port fitted which is quite exciting, it should be ready for cycle 2 on Monday (assuming my blisters don't get infected in the meantime). I hope everyone stays accident free for a while.

Tabs

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Re: June 2020 chemo starters

Morning you lovely ladies 

happy birthday horseylass 

thanks the wig advice I think I'll just keep my bald head I'm a bit shut of wigs 

the transformation will be too great from natural Afro to flowing European shoulder length 

i trip over yesterday while trying to stop my dog from killing a squirrel 

the skin on my palm came off got in touch with my care nurse and was advised to go to 

the hospital 

i was seen by medical staff very quickly who cleaned the wound and dressed it 

im back to square one as it my dominant hand almost impossible to wash myself and I'm worried about the chemo infection 

in regaurds to side effects apart from hair loss diarrhoea on the day of infection I've been quite fine 

im eating more than normal 

be careful out there 

sending hugs to everyone 

 

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Re: June 2020 chemo starters

Happy Birthday Horseylass! 🎉 Sounds like proper animal magic over there 😊 We have a pond so I've learnt a LOT about dragonfly and damselfly mating and hatching habits (!) over the past couple of months, who needs Netflix eh?!

Anna - welcome and sorry to hear you've been having a tough time. I've got my second chemo tomorrow (if my neutrophil levels are up - cross fingers they are as it's been delayed a week because they were under 1 last week 😕) and hoping I'll be less sick than last time. Regular metaclopramide was definitely helpful for me. 

My jazzy 80s vintage scarves arrived and I enjoyed wearing a very rainbow coloured one yesterday when I went out in the car! Debating whether to wear one to chemo tomorrow or just rock the almost bald head...depends on how hot it is I think.

Saw this news yesterday: https://www.bbc.co.uk/news/uk-england-kent-53170058 hopefully will encourage people to go to their doctor with any concerns and not be put off by COVID.

Keep cool everyone xxx

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Re: June 2020 chemo starters

Hoerseylass,

we have chickens as well as a dog. The farm bring eggs into School each year just before Easter so that the children can watch them hatch them the staff take them home. This is our first time of having some in fact I got them the day I was diagnosed. My little boy is in year 2 and he watches them hatch and now looks after them at home. It’s been lovely to watch them grow from babies to hens.

 I’m sure my two would love a horse too.

i had one as a child but with football swimming and everything else we just would not have time.

 Tara xx

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Re: June 2020 chemo starters

Thank you all for your kind wishes.

Ann my animals are 2 dogs, 2 house cats, 9 feral cats, 3 horses, 100 sheep and lambs, ducks and chickens. We have a farm so lots of animals. It’s madness but lovely. 

 

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Re: June 2020 chemo starters

Happy birthday Horseylass, love the idea of a wild day with your animals, assume horses.

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Re: June 2020 chemo starters

Hi Butler10,

thanks for your reply. The whole thing does mess with your head a bit, doesn’t it? I hope after completing one cycle I’ll have a better idea how to get through the next time. Take care, and here’s hoping Saturday comes soon for you. 

Anna

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Re: June 2020 chemo starters

Happy Birthday, Horseylass. Hope you feel good for the day and can enjoy something nice (to do or eat). 😛

Anna

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Re: June 2020 chemo starters

Hi anna45anna   Hope your day improves.  I had my 2nd chemo last Thursday.  As soon  as I got home  I had some think light to eat then took a sickness  tablet and that seemed to help. My down side is the steroids and the injections. They hv made me feel more down this time. But hopefully by sat is when I start feeling my self.  We all seem to suffer differently  but the lovley ladies on here all give out  good advise. They hv helped me on my off days x