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May 2020 Chemo Starters

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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

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Re: May 2020 Chemo Starters

Hi 

I’ll have a chat with the team tomorrow.

If I was lucky enough to have a 3M filtered mask I’d feel a lot safer going out. 
I don’t see them giving me one 😊. I’ve tried to source one but not possible yet due to high demand .( Frontline staff need them more than me) . 

We live in quite a rural area but paths are narrow . It would mean driving to a field I think . Armed with alcohol gel! 

I may be a bit paranoid 😊

Tricia X 

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Re: May 2020 Chemo Starters

It's a balance of risks, Tricia. We're pretty rural(ish) and I go out before 6am. With a mask. And avoiding people who happen to be out at that time!

Most oncology staff that I have spoken to appreciate the trade off in terms of managing fatigue and mental health. Fingers crossed you have a sympathetic one!

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Re: May 2020 Chemo Starters

I also had a pack from the cancer hair care people. They were really kind and resent it because the first one got lost in the early lockdown chaos. I’m very impressed with all the walking - shielding is sending me bananas, I only live half a mile from the Thames but haven’t seen it since before chemo started. Not sure I can keep it up for ever

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Re: May 2020 Chemo Starters

Hi Tricia

I had a long conversation with the oncology team (via oncology nurse) about walking, making exactly the mental health point and they agreed that in my circumstances it's a safe enough activity - I go early in the morning when it's almost deserted, walking in the middle of a large green space and never come within 60, let alone 6, feet of another person. I know not everyone has the luxury of a big green space on their doorstep though.  Given that we are likely to be shielding for several months with chemo, I personally think it's important to safeguard my mental health and for me walking in the fresh air is one of the best ways to do that. It's really hard with the Covid situation, because we're feeling fearful about going outside  (well, I am..). Interestingly that feeling got worse in the days when I felt too unwell to walk, and dissipated almost immediately when I did start walking again two days ago. 

Fiona, re the 8K, I've been doing 8-12K a day for the last year, and I built up to that very slowly over a period of months. This was part of a whole load of lifestyle changes - giving up alcohol, giving up a stressful job, losing weight - that have culminated in - wait for it - a breast cancer diagnosis!!  Seriously, I've been amazed at the way I've been able to pick the walking up again so easily. I don't push myself, just go at a moderate pace. I feel so much better for it! x

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Re: May 2020 Chemo Starters

Thanks Trish. That's really helpful thank you x

Hope every one is ok x

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Re: May 2020 Chemo Starters

Thank you Zinnia ❤️

I contacted the hair people and was sent a hat, towel and lashes. ( never worn lashes so will be interesting . Best not get my husband to attach them after the mess he made of my hair. They will probably end up, upside down 🤣). They were really lovely on the phone . I was recommended to use coconut oil on my dry scalp once the hair comes out. 

OMG you ladies doing all that walking !!!!

I was told I couldn’t leave my garden which is playing havoc on my lower back as I need to walk. I’ll ask the oncologist tomorrow if I can go walking . I need to for my mental health . 

Take Care Ladies ❤️

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Re: May 2020 Chemo Starters

I'm not in their part of the country either, Fiona - I think with Covid=19 all bets are off! xx

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Re: May 2020 Chemo Starters

I've looked at their website but I don't qualify!! Wrong part of the country 🤣🤣🤣

Glad you are feeling better at day 8....and 8k!! Bloody hell woman, I'm managing a slow 2-3k. Although I did do 15mins of yoga this morning which is not bad for the day after chemo!! They tweaked my sickness meds too so feeling much better for that. And giving the chemo with more fluid seems to have helped with the headache/woolly feeling. I still have it, but its low grade and manageable. 

Xx

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Re: May 2020 Chemo Starters

Hello everyone

I hope being in bed makes things better, then, Steph; I know that when I've taken to my bed and slept I've felt better for it. Great to hear that there's no nausea this time - I'd take that result!

My oncologist may tweak my anti-sickness meds next time to give me something more specific to the vertigo/car-sickness kind of feeling I was getting. Now, though, at day 8 I'm feeling pretty much normal. I did my usual 8K walk this early morning with no problems and really enjoyed being out in the fresh air. Then I made biscuits! 

I want to share some information from the Cancer Hair Care charity. I may have mentioned them before. They were lovely when I phoned up for advice about managing hair loss/cutting hair whilst I'm in lockdown alone, without help. The other day a support pack arrived including a soft towel and hair covering. They've asked me to spread the news about their services so I'm attaching a copy of their leaflet. It's well worth contacting them if you want to talk about any aspect of hair care or hair loss, and as a bonus the freebies they send you are great!

Trish x

Cancer Hair Care.JPG

 

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Re: May 2020 Chemo Starters

I’m getting the hungover feeling bigtime this time round. Second day in bed completely zonked! No nausea though which is a huge plus

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Re: May 2020 Chemo Starters

Thank you everyone. Good to hear what’s going on for you. 

Good luck tomorrow RubyRose

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Re: May 2020 Chemo Starters

Hmmm, I don't know really. My instinct would be that it probably wouldn't hurt, but maybe phone the ward and ask why it was prescribed and whether you should use it as a preventative.

Alternatively you could keep it as a back up to use at the first sign of mouth soreness should it happen.

Believe me! The shave is a better option to the moth eaten look! I'll try and post pics later but sometimes it says the file size is too large.....

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Re: May 2020 Chemo Starters

I was given Difflam this time round despite having no mouth problems at all in my first cycle. Do you think I should use it as a preventative measure? The pharmacist didn’t really seem to know why I had it

You're very brave to go for the shave Fiona! Hugs to all xx

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Re: May 2020 Chemo Starters

Oooo, tip from today re mouths! They gave me difflam again (the green mouthwash, benzasomething!) and interestingly, Nystatin to take BEFORE my mouth gets sore again (cause I had a bit of thrush last time they want to pre-empt it. But they also gave me Orabase - a protective paste for ulcers and sore spots. I hadn't heard of this before. I managed to heal up my sore bits using bonjela but I think this stuff might be better because I think it 'seals' more? Anyway, just a bit of info. Someone said somewhere (here, April thread, FB, etc) to take mouth soreness really seriously and phone the nurses for stuff as it can affect hydration and nutrition, so my one tip for mouth stuff would be a stitch in time saves nine!

Night everyone - hugs to all x

Fiona (ps I shaved the whole head this avo...bald as a......something with patchy stubble 😂😂😂😂😂)

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Re: May 2020 Chemo Starters

And to you Trisha!!

Will be thinking of you on Friday xx

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Re: May 2020 Chemo Starters

Hi  Trinnia . You are more than welcome to join the group. There is no right or wrong here. ❤️

We are all on different “ cocktails” but the side effects seem similar. 

Im starting mine this Friday but having Herceptin at the same time as TC. ( I think that’s right ) . I think from what everyone has been saying , you need to keep hydrated and flush as much out as you can . The heat won’t help . Take everything they give you . It doesn’t matter if you rattle 🤣

Lots  of Love to everyone ❤️❤️❤️❤️

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Re: May 2020 Chemo Starters

Hey Trinnia

welcome x 

I’m on TCHP too. I’m synchronous bilateral, so cancer in both breasts at the same time; IDC ER+ HER2+ Grade 2/3 and at least one lymph node on right involved. I’m having chemo first.

I had HP on Tuesday last week then TC on Weds. Future cycles will be administered together. I was dreadful from Fri-Mon inclusive. The nausea was controlled with meds so ok there but the bone pain and aches was the pits. I had a slightly better night last night and I’ve been okayish today, just tired and back ache. My nose is sore (not bleeding but bloody) and my mouth is a bit iffy. 

Take it easy if you can. 


Sarah x

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Re: May 2020 Chemo Starters

Oh bless you, Zinnia! You are very welcome and don't worry - you are doing everything 'right' re the forum.....not really a 'wrong' way.

We're on different regimens and stuff but you will find people here on the same treatment as you. In general I would say report side effects and not feeling well to your oncology team or the cancer treatment helpline. They will tweak things to make following cycles better in terms of symptoms. I had round 2 today, and I've noticed a huge difference (not that I'm counting my chickens!!)

Definitely read back through posts and threads - but don't overwhelm yourself. The breast cancer now nurses are also a good source of support/info and there is also the volunteer service where you get to talk to someone who has been through breast cancer and similar active treatment plans. I've found that to be really helpful - if you want more info drop me a message?

Do keep on posting here....rants, laughs, tears etc it's all ok here and we need a place to offload sometimes. 

Take care and sending love x

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Re: May 2020 Chemo Starters

Welcome Zinnia.

Well bless you. You certainly have been through the mill. Yes it was me who said I felt hungover. It seemed to last most of the first week but then I have felt good ever since. I go for my next chemo on Monday.

Like you said there is the side affects from the chemo and then from the injections as well. For the whole of that week I was a walking cocktail of drugs to try to alleviate symptoms. I'll be interested to see how I go through the next cycle. I haven't even had a follow up call by anyone from the hospital yet. I have my blood test on Friday. I did find drinking loads really helped to flush everything out.

Hope you start to feel better soon. Sending positive thoughts your way ❤

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Re: May 2020 Chemo Starters

Hi

I've just discovered this forum but have to confess to being a newbie at this kind of thing so hope I’m not doing this wrong. 

I had my first round of chemo on Friday and am really struggling with everything. I had a lumpectomy and full lymph node removal on my left and reduction and uplift on my right the week after lockdown started. There were 2 areas of cancer - one was grade 1 er+ pr+ HER2- and the other was grade 2 HER2+. 2 out of 19 lymph nodes removed were cancerous HER2+. 

My chemo is TCH+P, which I’ll have all together for 4 sessions. The first one lasted 7.5 hours and seemed like forever. I was the last patient left there at the end of the afternoon! Weirdly I found the cold cap really helped ground me when I was feeling hot and panicky. 

I felt okayish the first couple of days but once I started the injections I’ve had terrible leg aches and trouble sleeping. The chemo nurse (dr?) who I phoned today said I can take codeine at night to help. I’m just feeling so rubbish - I think someone else on here said it was like being hungover - really hard to think about getting through so many days of feeling bad...... I’m going to read through tips that some of you have put up - Thank you. 

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Re: May 2020 Chemo Starters

What a great idea, Tricia - you've inspired me to do something similar. x

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Re: May 2020 Chemo Starters

That's a fantastic idea. Very powerful, visual way of highlighting what you have achieved and the steps towards the final goal.

Love it ❤

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Re: May 2020 Chemo Starters

Hey lovely ladies ,

I decided to awards myself at each stage of my treatment . I’ve embroidered different coloured ribbons for each stage of my treatment . So far I have diagnoses and operation . We think I may end up with about 18! It’s a bit like getting stickers for being good at school 🤣

A9B6D70F-E983-4961-95F0-2807D91CE52F.jpeg

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Re: May 2020 Chemo Starters

Hey Sarah

Yep, had my blood done today and Wednesday for my 2nd cycle so will be thinking of you. It's so hard to plan when it is such an unknown how we will react. Hope you have a straightforward experience and get into a routine with the kids quickly. 

Fiona xx

 

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Re: May 2020 Chemo Starters

Second that! Good luck Sarah. 

We are all here to help each other . 

❤️❤️❤️❤️❤️

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Re: May 2020 Chemo Starters

Good luck Sarah, we are all in this together.

Will be thinking of you ❤

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Re: May 2020 Chemo Starters

Love the jewellery Fiona, they look great. I wouldn’t have known they were your PJs either!

 

I’m the same as you RubyRose, I commented way back at the start of the thread and I’m just going for my first cycle on Wednesday. Went to my doctors to do the bloods this morning and suddenly it all feels real. Feeling quite terrified and overwhelmed by the unknown but reading everyone’s experiences has shown me just how differently everyone reacts so I just have to wait and see what the first week or so brings. Hopefully once I get started I can get into a routine with the kids etc. 

MaisyMoo I feel exactly the same as you in that there should be more emotional support available. Like you I am still coming to terms with how I look and feel after the mastectomy and next it’s hair, eyelashes etc to go. I guess in normal circumstances there would be more support available but for now these forums are a good place to share experiences and I’m grateful for that. 

Good luck to everyone starting first or second cycles this week, I hope they are all straightforward for you x

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Re: May 2020 Chemo Starters

Thank you! I'm pretty happy with them 😁

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Re: May 2020 Chemo Starters

❤️👍great necklace and earrings fidget 👍 look fab 👍💕💕Shi xx

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Re: May 2020 Chemo Starters

Good morning everyone 😀

Love the jewellery and the colours, Fiona!

On day 6 of my first cycle now, and starting to feel a bit more normal. I haven't experienced anything terrible, but have had a continuous feeling like mild car sickness. I've been able to manage it to an extent by using the meds I was given and nibbling on bland foods, staying hydrated etc, but the worst bit is that any kind of screen time - texting, reading, interacting with this forum - is sure to bring it on. So I've had to limit those kinds of things. It feels like trying to read in the car... 

If I'm not here for a while it will just be that I'm keeping away from the screen... In the meantime, all the best to those of you about to start (Tricia) and to start their second cycles. I'm also not looking forward to starting all over again, but 'nearer to halfway' sounds like a good way to think about it..

lots of love

Trish x

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Re: May 2020 Chemo Starters

Morning Ladies,

I wouldn’t have known they were your PJ’s Fiona 😊.

Good luck to everyone having cycles coming up. My first is on Friday . They gave me all the dates for my 4 cycles which I have marked down on a calendar. Last one end of July . ( subject to change).

Lisa I Hope you get to enjoy this week of sunshine before your next cycle. 

It’s strange that I’m finally starting mine and I was one of the first to start the thread ! 🤣

I’ve popped into some of the other threads and they talk about radiotherapy. Reducing it to only a week rather than 3. My oncologist said that it was more than likely by the time I’m due to have radiotherapy it will be reduced to a week. They were just waiting on final results from the research . So apart from Herceptin injections and the tablet I’ll be finished by end of August . 

it feels a long way off and I know, I have a few mountains to climb but it’s something to look forward to. After all no ones going anywhere soon 😊

Love to you all

Tricia X

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Re: May 2020 Chemo Starters

Yes you are so right, that's how I look at it, closer to the halfway and nearer the end.

My next one is a week today.

Good luck with yours x

 

 

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Re: May 2020 Chemo Starters

Thank you Lisa. I suppose it's really quite a rational reaction, isn't it? 

The other thing I think is that it's one closer to the half way point, which is then almost the end, lol!

When is your 2nd treatment, Lisa?

Stay strong, safe and well, ladies xx

Fiona

 

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Re: May 2020 Chemo Starters

Hi Fiona,

Yes you are looking well and the jewellery is so pretty, love the colours.

Like you I don't want to go for my second chemo as I feel really well again but yes fingers crossed we will get through that one with good days as well.

Good luck to everyone with their upcoming treatment. Sending love and hugs to all you amazing ladies ❤

Lisa x

 

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Re: May 2020 Chemo Starters

Aw, thank you Tricia!! And don't you think they go well with my PJ's?? 😂😂😂😂😂

The colour combo is not my usual, but I started it ages ago to go with a green jumper I've got......only now we're in summer, I'll need to find something else!

I'm not feeling too bad actually which is making REALLY not want to go for 2nd cycle on Wednesday....ah well, at least its recoverable from....I just find the it irritating that you get feel better only to lose it again but that's probably not the right way to view it! 

And every cycle might be different so I could breeze this next one! Hope springs eternal or fortune favours the foolish? 

Hope you are ok xx

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Re: May 2020 Chemo Starters

Hi Fiona,

You are looking well.

They are beautiful ❤️

I love the colour combination. You can’t beat a bit of chunky jewellery to make you feel good.😊.

love Tricia X

 

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Re: May 2020 Chemo Starters

20200517_223546.jpg

 so here is a pic with a set that I made/finished off today! The necklace has been 18 months in the making - very on/off and has had various incarnations prior to this one (which I'm still not 100% happy with!) and I did the earrings and bracelet today after much unsuccessful faffing with wire work! Painted and varnished all the beads apart from the spacers myself (not today). I think I'm quite pleased. It's by far the chunkiest piece I've made. It was really good to focus so entirely on something today. Even if it made my eyes hurt and my head spin!!!

Hope we're all doing ok....thinking of us all.

Xx

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Re: May 2020 Chemo Starters

It changed foof to good 🙄 text gremlins out on the threads tonight 🤣😂🤣💕💕Shi xx

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Re: May 2020 Chemo Starters

❤️Don’t forget you can have as many wigs as you like, coloured bobs, tinsel wigs, long rainbow wigs ❤️ amazon were great when steroid shopping finger took over 👍 take control and don’t let it take your 😁 oh and just a quick bit of info, might be tmi, but when you loose good hair you won’t pee straight 😲 if anyone’s on fec, all head hair was gone about 2 weeks after 2nd fec. It starts growing back on t if anyone on the fec-t ❤️ fidget you will have to post photo of the earrings you make 👍💕💕Shi xx

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Re: May 2020 Chemo Starters

Hi Sarah

Not on that combo at all but yep, felt utterly wiped on day 2 - 6? To varying degrees, and then felt REALLY achey all over....muscles, joints, my skin, everything hurt! It's the only time I got even vaguely narked with the nurses. They all said "we don't expect that with EC" and I was like I don't fricking CARE if you expect it or not! I have it and it hurts! Do take whatever pain meds work for you or discuss with GP/oncology team, but do, do, DO keep an eye on your temp and if it goes up or if you feel worse, or even if it just continues...maybe check out with treatment line. Always better to be safe than sorry but yeah I ached like a wotsit! 

Hope you start to feel a bit better soon. 

Fiona x

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Re: May 2020 Chemo Starters

Welcome Ragusa 🙂 Hope you're feeling okay after your first treatment. One down!!

Sarah - I had TCHP on the Thurs 7th. Was okay til the Monday when I felt just wrong, then the week was a write-off to be honest. 12 hours in bed a night, sore mouth + throat, throbbing pain in spine + pelvis. I think most of it was more the chemo, though the pain did peak at the 7th injection and has gone since! 

Please be reassured this should settle down in a few days, just try and ride it out with lots of rest and sofa days if you can. xx

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Re: May 2020 Chemo Starters

Hi Ragusa and welcome! Thanks for posting. Yes, the stress of various factors is quite overwhelming, and I don't think we can ever be fully prepared, but I think this forum and in particular the ladies here are soooo supportive and open and that really helps.

Which reminds me to say a huge "hi" and "you are welcome too" to the readers of this thread who haven't posted....we are all on the journey together no matter how vocal or visible, so big love to all of us warriors! 

I've just got my wig which is weirding me out a bit as the parting is on the "wrong" side! and it feels odd. But I've got a good long while to get used to it, so it should begin to feel more natural.

 

You're absolutely right when you say there is no right or wrong answer....it's whatever serves you best in the moment.

Thanks for joining us and good luck on the rest of the journey.

Hugs

Fiona x