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September 2019 Chemo Starters

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Re: September 2019 Chemo Starters

Hi Naomi, 

I’m Day 13 so pretty similar time line. Second week has been a lot better food wise. Eating ok, still enjoying odd treats like cake/ chocolate but the crisps have disappeared😭😭Jeez they wreck my mouth! 

Hospital food is ok and portions small so eating them and snacking in between x

Member

Re: September 2019 Chemo Starters

Evenin’ All!

 

Ive been so rubbish at keeping in contact with you lovely lot but I do read regularly and now I’ve had to make notes to keep up with what’s  going on so forgive me if I miss you. Things change so bloody quickly on hear! It’s only because I’m writing from the luxury of a hospital bed that I can catch up, I’m normally bushed at home once I've got the kids to bed 😴They drain me on a good day! 

Beril Peril

i hope your 2nd round was a breeze on Thursday. Did you decide about a wig? I’ve gone for one , yet to collect, and after the amount I’ve paid I’m going to bloody wear it. 

Pink Flamingo

How are you doing? Temperature down? I would get clarity from your oncology nurse as to what you are to do. You’re an oncology pt going through active treatment for goodness sake! 

 

Sharon

hope you’re doing ok xxx check in with us if you’re up to it.

Mimbles

Hope you’ve had a good week  and are feeling ok with minimal s/e🤞

Sam

hope you’re doing ok after 2 EC , I think we might be the only EC ladies?

what op, are you having ? Have I totally missed something in my crazy note taking? 

 

Maybe its EC but similar to you I am now enjoying the delights of the nhs . I have my own room and en-suite too. I’ve brought all my pamper toiletries, room sprays and ear plugs(absolute necessity)!

 

I rang up Thursday with pelvic pain ( from which I’ve had a previous admission so I New exactly what was brewing) and they reluctantly booked me in for assessment even though I presented with obvious painful cramping but no temp! Gynae weren’t interested as I was now oncology and as I had no temp after 6 hours of waiting to see the consultant they were going to send me home. Although they didn’t retake my temp to chec in those 6 hours. I, yes me, asked them to as they were about to send me home. 38! Things changed within minutes, that was Thursday and I’ll be here until at least Monday 🙁

Im now classed as neutropenic and still got this pelvic pain which I think has started the whole bloody thing . Got U/S on Monday. Jeez, I’ve only just started on this chemo crazy joy ride, just hoping this is a blip 🤞🙏🤞🙏

 Sleep well tonight ladies.... I had an old dear wandering into my room at 3 am, she was very confused bless her. 3 nurses then followed with phone torches trying to be quiet , but failing miserably , looking for spillages?? 

 

Top tip.... ear plugs if admitted to hospital xxxxx

 

Katy xxxxxx

 

 

Member

Re: September 2019 Chemo Starters

Good morning everyone or probably afternoon really 🙂 How is everyone today?

 

I’m day 11 into my 1st chemotherapy treatment and I find myself eating more than what I normally would. I eat the normal breakfast lunch dinner etc but find myself occasionally needing a sweet or savoury snack in between my meals. It’s like feeling a bit lightheaded and then a little snack helps, does anyone else find they experience this?

Member

Re: September 2019 Chemo Starters


Had 2nd EC last week so on many, many pills now..organisation of my daily timetable takes so long(will put it down to chemo brain rather just being generally disorganised of course).

 

Went for PORT fitting pre assessment also last week, veins are generally quite rubbish resulting in multiple attempts to remove blood and give IV, chemo etc. PORT seems like a much better option than PICC having spoken to many people so in one way looking forward to it. The downside is that as am an MSSA carrier need to wash hair and shower in some delightful red gunk and shove stuff up my nose three times a day...joy!
Oh and the op next Tuesday is a little disconcerting, having never had an operation before this will another one for the cancer adventure bank...


Had a northern pal staying last week so managed a couple of v enjoyable nights out as well as a chemo pal, funnily enough she refused my offer of her trying some, you know, just for fun, most disappointing indeed.

 

Actually feeling much better than post no 1 EC, am putting that mainly down to the fact that chose not to have a takeaway pizza following this EC...showing I can be sensible after all!

Out for lunch tomorrow hopefully with another couple, back up plan if am feeling pants is the boyfriend provides a picnic in front room ( rubbish weather forecast tomorrow) so fingers crossed still feeling good.


Based on no 1 EC next week will however be a different kettle of fish re SEs so will make the most of this weekend.

 

Hope many of you also having a good weekend

 

Sam X

Member

Re: September 2019 Chemo Starters

Firstly replies to those posting last week, been vv busy, it's a real time consumer this cancer shinanegan isn't it??

 

Beryl
Again cosmic twin have been losing hair at similar stage, not coming out in clumps but severe moulting for past few days with one bald patch that am able to disguise so far...so don't think am far behind you...
Funny didn't have any scalp tenderness/tingling like many here..will put it down to my 'pain free superhuman powers' that could be my downfall at this rate!

 

Mermaid
Am joining you on the GCSF injections, another step on the cancer adventure, but probably better than ending up in hospital again I guess (despite it being quite fun). God luck!

 

Hazel
Am on different treatment than you but also had a very much up & down 2nd week, take it easy!

 

Hope everyone else is doing well

 

Sam X

Member

Re: September 2019 Chemo Starters

Hi I’m Hazel and I started chemo in 4th September after an oncotype test came back suggesting chemo would be beneficial. I had grade 3 invasive ductal, lumpectomy in July no nodes affected. First chemo was daunting and took 5 1:2 hours due to staff shortages. No sickness yet as have been taking tablets regularly. Very tired into second week which even though I read about it didn’t expect to be so bad. Worse thing is my hair it’s shedding quite a lot after just two weeks and although I’ve cut it shorter now I think I need to get it shorter as I can’t  cope with the constant falling out. Due next chemo next week as having 6 rounds of fec-t. No other major side affects as yet do fingers crossed but am prepared. Hazel 

Member

Re: September 2019 Chemo Starters

Hi

Stepping out for 2nd round chemo today.  Feeling really well at the moment which while giving me confidence to go and do battle again, there is also is ughh in that I am going to have all the sick and grotty symptoms back. But I have said to myself, it's a positive thing to getting treatment, get cycle 2 in the bag and you are a third of the way through. 

 

On the scalp conversation, I reached scalp tenderness peak at day 14 and this was the start of the big fall out. Day 15 was a cry in the shower as the handfuls of hair are distressing, and even though you know this is  coming it's still a hard kick. I honestly felt better when I had it gently taken off, it relieved the scalp tenderness significantly and yes I too felt that I had taken some control. Its  these small moments  that feel  pretty powerful. I have also started taking a bit of time to select and do different things with scarves and with some some success and nice compliments. I even dared to put my girl guide knots to the test with a ride out to the coast in my mx5 with the roof down, hurrah!  I might relook at the wig option having not bonded with first effort, but I will see how I feel at the back end of this 2nd cycle. The weird thing about this wig vs. scarf is the one thing that has engendered the most opinion in my friends with polar views on what I should and shouldn't wear!  Funny old business this sometimes! 

Over and out. 

 

Member

Re: September 2019 Chemo Starters

Hi Pink flamingo

 

My hair has just started falling out and I have an area of my scalp that is a bit sore, at hospital tomorrow for pre chemo tests so am going to ask about that. Have decided tomorrow is the day that my hair gets shaved off, think it’s going to hit hard but it’s not nice getting a handful of hair when you run your fingers through it! Get the feeling my husband and son aren’t really in agreement with me as my hair still looks ok but I’m taking control 💪💪. This is 16 days after first FEC

Member

Re: September 2019 Chemo Starters

Evening everyone,

 

currently day 12 since first cycle of FEC: interesting weekend - woke up on Saturday feeling ready to take on the world almost to the point of mania/ hyperactivity 🥳🥳 Sunday back down to earth with a bump feeling dreadful and pretty certain I had urine infection brewing but no temp - all fitted parameters to make an urgent call to my unit only to be told “probably a touch of cystitis- ring 111”. Surprised I did as instructed only to have the lovely 111 lady check twice that this was what unit had told me to do. Anyway saw out of hours doc later that afternoon who confirmed I had rip-roaring infection; prescribed antibiotics and packed me off. 

Yesterday evening, my unit rang to see how I was (good) I reported that my temp was 37.4, still had burning sensation and now also throbbing ear. She told me to ring my GP if it didn’t improve in 24hrs. Fortunately it has improved but the whole episode has left me wondering why they bother giving the initial written advice about when to make an urgent call. 

Anyhow - today, my scalp feels as though I’ve left bleach on too long!! I haven’t bleached it at all but that’s what it feels like 🔥🔥 - should I expect to wake up to a hairy pillow? Is this how it starts? 

Hope you are all getting along ok- keep on keeping on xxx

Member

Re: September 2019 Chemo Starters

Sending you hugs, Sharon. Which bits in particular are confusing you? Is there anything we can help with?

 

With love

Mimbles

Member

Re: September 2019 Chemo Starters

Hi I am just about to have my 3rd lot of Chemo I am feeling very anxious overwhelmed and confessed by it all there is so much to take in 

Member

Re: September 2019 Chemo Starters

Hi all,

 

Just adding myself to this thread. I started the EC chemo last wednesday.

 

Still feeling pretty rubbish and today not managing to get out of bed much.

 

I'm sending you all love, and hope this time passes as quickly as possible for us all. 

 

Mimbles xx

Member

Re: September 2019 Chemo Starters

Hi

Naomi, tingly scalp is something I have been having too. I was warned about peripheral neuropathy (some loss of sensation in your fingers and extremities). Might be worth tomorrow giving your named chemo nurse a quick call to talk about your symptoms  just for reassurance.

 

Sam, so glad to see your post, I was starting to feel a bit worried!  The tablet sorted my herpes (thrush) too! What a grim business this is! Loving the hospital  as a spa comment, you do make me smile.

 

Well adjusting to my new Sinead O'Connor look quite well. You tube has offered lots of scarf tying options. Going to become quite the scarf aficionado!

 

 

Member

Re: September 2019 Chemo Starters

I’m trying not to let this worry me as it’s possibly normal but I already suffer with anxiety so I don’t know if I’m genuinely panicking for no reason. I had my 1st fec chemotherapy on the 10th and my head feels all tingly quite a lot and occasionally my lips and fingers tips feel tingly. Is this just normal and is any one else experiencing this. I don’t want to worry for no reason. I’m just feeling slightly overwhelmed and not sure when to worry and when not to worry 

Member

Re: September 2019 Chemo Starters

Thankyou lovely. Day 3 and still very dizzy. Quick trip to hospital this morning due to chest pain but back home now. All bloods came back normal, white count very high but that was due to the wonderful injections every evening!. Its comforting to know there are other folks that understand how I'm feeling. Thankyou for replying. Much love xx

Member

Re: September 2019 Chemo Starters

Naomi

To back up beryl's excellent reply my partner of 16 yrs is also being 'odd' (to be fair he's not normal at the best of times) but am getting that feeling of aloofness, texts that used to be littered with 'I love you's' are now hum drum practical cancer stuff. So in short you're not alone.

I think it's just our other half's way of coping, being the stronger one and ignoring the potential seriousness of our diagnosis. I certainly wouldn't take any 'action' at this emotional time, gonna give mine a good shake down this weekend..that should do it.

 

Beryl, cosmic twin

Apart from Monday not rough at all, have annoyingly been super-fine all week in hospital, despite numbers indicating otherwise. It's like a spa here, just that no-one has called me for my massage yet, I've mentioned this several times now to the lovely nursing staff...

So as it was neutro sepsis thingy and as was in protective isolation (get me!) am on a lovely private ward with en suite private room..its been like a holiday, just one where they steal your blood and pump you full of antibiotics....

Developed even more bl00dy thrush while here and was told that rather than cover myself top to toe in hydrocortizone cream better to have a tablet so 'herpes' now clearing nicely.

Sorry to read about your hair, mine is still ok but looks yuck as only washing it once pw.

 

Mermaid

Sorry to hear of your challenges, hope things have settled somewhat by now.

 

Home today, looking forward to seeing 2 stupid fat cats and sleeping in my own bed.

Best wishes to all

Sam x

Member

Re: September 2019 Chemo Starters

Dear Naomi,

Read your post and sending you a hug. This is a bl00dy hard time. 

These are my thoughts and feelings. 

Being told I have cancer has brought along a full gamit of emotions.  Fear, guilt, worry about money, being replaced at work, whose going to do the school runs  and perhaps the most irrational that I have let the side down.

 

Despite the fact that I have been married for 18 years my vulnerability and guilt has come out in statements like 'do you still love me'. These aren't questions I would have asked 6 weeks ago. My husband also hasnt really told me how he is feeling, but he has been there at every appointment and he is trying to show me in the things he is doing to help me and keep family life ticking along.  Maybe he  doesn't want to upset me by saying how worried he is. Maybe he feels like he has to be the 'strong one '. I think we are just trying to 'get through' as best we can at the minute.

 

This is a struggle on so many levels. I crave normal life, on one evening I got upset and  even shouted that I wanted my normal life back.  I also got angry with my sister on the phone,  cancer is not her fault and it's not mine either. This is a grief  in many ways.  I am just devastated and frightened.

 

I  probably  can't stop the worry or the guilt.  I also have little control on the effects of chemo, steroids, pain and  sleep deprivation on my emotions.

 

I don't think I  will ever stop feeling vulnerable or fearful.  I am doing the best I can.  I am still processing what's happened.  

 

I don't know how to sign off on this post. Its probably come across as a miserable and raw read. I didn't see this  cancer disgnosis coming, likely none of us did, and its probably fair to say it has blindsided us all.

 

Member

Re: September 2019 Chemo Starters

Hi All,

 

I have my PICC line insertion on Monday, ordered some nice PICC line fabric covers as well as the waterproof for shower one. My chemo preassessment is on the 17th for 2 hours followed by my actual chemo on the 18th which apparently is for 6 hours. I'm placitaxel weekly then plac+carboplatin every 3rd week of the month. Any advise and tips will be great. I am bricking it! 

P.S. Apart from antihistamine what do you take or apply when your nipples are really itchy? It comes and goes but its annoying

 

Thanks

Anna

Member

Re: September 2019 Chemo Starters

Berylperil 

 

Thank you for that post it really helped. I’m day 3 into my 1st treatment and I think I just let things get on top of me today. I then panicked thinking my partner would walk away from me if this was too much. We haven’t even been together 2 years and even though she reassures me she will never leave I just feel she is distancing herself and when we talk on the phone she says telephone conversations are difficult because I don’t do anything and I really wanted to shout at her well what do you expect me to do every day but I didn’t shout and just cried but denied crying. I feel so afraid and I don’t know what to do 

Member

Re: September 2019 Chemo Starters

Hi ladies, 

 

I am day 15 post round 1. Please feel encouraged  those that have just had a treatment that the horrible early days of the cycle  have thankfully  turned into feeling better days, and I have been out and about eating tea and cake with friends at every opportunity. Its these good moments and days that will see us through the dark ones and the days we will each of us want to write off.

 

My day started today with tears in the shower as handfuls of hair went down the plughole. Even though I knew this was coming, it's still bl00dy horrible and a cruel side effect. Decided to take control and my husband very gently clipped it all off this afternoon. My scalp feels less 'pulled' now for doing this too and I haven't got loads of hair all over me. Pretty scarves will be my new look.

 

Chemo 2 is next week. Hope everyone has a better weekend and big hugs to all. 

Member

Re: September 2019 Chemo Starters

Hi Mermaid. Sorry to hear that you are not feeling so good after your first fec-t treatment. I had mine on Tuesday and felt that I needed to use the just Incase anti sickness medication that they gave me a few times and that helped. I found a plain biscuit and slow sips of lemonade helped me. And I started to feel better this morning apart from the dreadful constipation so I’m off out to get some senna. It will get better but if your sickness doesn’t ease give them a call and see if there’s something else they might be able to give you. Take it easy and I hope you start to feel less sick soon. Sending hugs 🤗 

Member

Re: September 2019 Chemo Starters

Hi everyone. I started my first treatment of FEC-T yesterday. Treatment and cold cap went well, but started feeling nauseous on return home and proceeded to be poorly through the night both ends!. Currently laid up on bed like a sloth and wondering if you lovely ladies have any tips/tricks for me. Am drinking water but cant get over the sea sticky feeling at present . Much love to you all xxx

Member

Re: September 2019 Chemo Starters

Hi everyone, hope everyone is doing as well as they can.

 

For me I’m on day 2 of my steroid medication and I’m glad it’s the last day until my next treatment. 

 

Besides the headache and joint pain I feel irritable and snappy and after hearing a neighbor outside constantly coughing for a good 20 minutes I was so tempted to take a bottle of water out there because it was irritating the hell out of me. I feel so irritable and I feel I’m going to be alienating my family and my partner at this rate if I keep feeling snappy. Has anyone else been dealing with feeling irritable and how do you manage. 

 

And on the other hand I just cry at the drop of a hat for no reason at all 

Member

Re: September 2019 Chemo Starters

Hi Sam, 

 

Just seen your post.  So sorry to hear you've been rough. Sending you a big hug my chemo twin, and hope you start to feel better really soon.  Ps you did make me smile with the thrush tale! X

 

Shi Community Champion
Community Champion

Re: September 2019 Chemo Starters

Yorkshire defector sorry to hear you are having casa nhs stint, same happened to me after 1st chemo, days 7-14 are nadir days if on 21 day cycle. Well done keeping vigilant ❤️ Hope you are home soon ❤️ Hope the boyfriend takes care of cats for you 😘 now if you’ve still got your own room get some music on phone and have a little dance round room or walk round room just a little one otherwise it’s easy to go from bed to chair and back again, if you’ve got your own bathroom in the room too it’ll feel like an adventure too, keep 😁 and if you need to go 🤪🤪do it on here 👍💕💕✨✨Shi xx

Member

Re: September 2019 Chemo Starters

Hi everyone 

 

After having fec chemotherapy yesterday I noticed the occasional tingling feeling in my head, forehead, ears and the side of my face and the top of my neck . Has anyone noticed this feeling and does it last for long. Should I be worried?

Member

Re: September 2019 Chemo Starters

For me, I’d rather have an injection than swallow a tablet but I’ve never needed to do it myself. 

It honestly wasn’t as bad or as difficult as I imagined. I’d read on another thread about pinching and then injecting the ‘pinch’ - I barely felt it. I won’t pretend I liked it or that I won’t be happy to finish them for this cycle but I managed it and I’m sure you will too. Xx

Member

Re: September 2019 Chemo Starters

Naomi

I've been having these over the past days and decided must be brave and do one myself, not overly fond of needles per se never mind DIY injections.

Rest assured it did not hurt at all, it was the least painful prick I've ever had! and was vvv easy to do so have faith..

Member

Re: September 2019 Chemo Starters

Hi all

Am feeling fine after a particularly cr4ppy Monday (which followed a good weekend).

Managed to drag my carcass out of bed at 3 on Monday, mainly as the cats were starting to nibble on my legs. Temperature was 38.1 by 5,in A&E shortly after and writing from hospital. Worth noting that felt better having got up and though a bit 'pooey' certainly wouldn't have classed myself as ill.

Anyway turns out white blood count way too low, inflammatory markers v high so am in protective isolation...the novelty of hospital wore off very quickly..

Anyway my point is if I hadn't have been diligent taking temperature regularly I may be in a worse condition as didn't really have any of the side effects that would lead you to take your temperature so beware.

Hopefully will be able to leave Alcatraz soon and see what my boyfriend calls 'giving the house a quick tidy' gulp.

Sam x

Member

Re: September 2019 Chemo Starters

Pink flamingo hope you are feeling okay.

 I start my injections tonight for 10 days and all I can think is how on earth do I do this I’m not exactly keen on needles and I feel like I’m on an emotional rollercoaster after just starting fec chemotherapy yesterday 

Member

Re: September 2019 Chemo Starters

Morning! 

Not feeling as cheery as the exclamation mark suggests 🤣 Started FEC on Friday and Sat, Sun and Monday felt mildly fluey - not great but certainly not as bad as others. Yesterday, actually not too bad and even ventured in to work in the afternoon having done emails in the morning. Have to say that very little effort left me feeling pretty wiped out. 

Last night was the first of the injections for me - we all seem to be on very different regimes regarding those - laughed (hysterically) at the bit in the leaflet where it said I only be doing this having been given some training!! Either way, I managed it. Was told to take mine before bed so that I was resting whilst my body was working hardest. Woke at 4 am feeling nauseous and generally the grottiest I’ve felt so far. Hasn’t improved yet so currently harnessing my inner sloth and doing very little- looking forward to pinching, stabbing and plunging tonight- oh, the joys!! 

Member

Re: September 2019 Chemo Starters

Hello ladies

 

Just popping in from the July Chemo starters, I've had my 3 EC's and start my T's today (feeling a bit nervous)

 

I have had to do the tummy injections for 7 days post each EC, they stimulate the bone marrow to produce white bloods cells which help to boost your immune system, I found the first 7 really challenging to do as I hate needles, but I can do them no problem now, never thought that would happen.

 

I have tolerated EC well, only vomiting once after EC 1 and EC 2, no sickness after the 3rd one even tho the post chemo drugs were not changed but have not had nausea at all. Main sides effects from EC for me have been:

  • Hair loss: started shedding at day 14 and hubby shaved it on day 17 when we got sick of finding it my dinner and was shedding more than the dogs, felt a great relief to get rid of it and one less thing to do every morning.
  • Weight gain: put on about 5-6 lbs and gone up a size in clothes and bras but I'm being more slobby and having nibbles in the evenings - as much to boost hubby's morale as my own - plan to deal with that after all treatment is completed.
  • Fuzzy head on days 6-10 after EC 1, didn't feel safe to drive so didn't.
  • Taste changes: Only lasted for about 5 days, didn't put me off food but had to spice everything up and really needed to add texture - crisps and chocolate still went down well.
  • Marks on nails: I have some nice black lines on my finger nails but have been using dark nail polish as advised and will continue post treatment in an attempt to reduce the risk of them falling off.
  • Fatigue, chemo brain and emotions are unpredicatable so I just go with the flow, I'm not working through treatment as my job requires attention to detail - I would be useless! But on my good days have felt up to gardening, decorating and lots of crochet. I get fed up with putting on a brave face with everyone, but don't like to think they are worrying either!
  • Vein aches: are in my forearms and a bit annying but tolerable, I've not taken anything for this, hoping it will ease off now EC's are all done.
  • Consitpation: happens for first week after EC so I counter this with a few prunes every moring and trying to drink more water

I have not had any mouth problems at all, changed toothpaste to Corsodyl and the bleeding gums I had before any of this have cleared up so despite the yukky taste I will carry this on.

 

This side effects, for a short period of time are tolerable as long as you are kind to yourself, I have found that at the beginning of treatment I was fine but as time goes by I feel more angry and upset about having to go through this and put this pressure on my family and friends, felt more anxious and stressed, not depressed, and sometimes have fear that even after all treatment it might come back, but it is still worth it and I would chose this treatment option again if I had/have to. And I think this is just part of the effects of the cancer, the drugs, the change in routine and coming to terms with the whole package but hoping things will settle down.

 

Good luck ladies - you all have the strength to get through - keep supporting each other

 

Love to you all

Helly xx

 

Member

Re: September 2019 Chemo Starters

Quick post before i'm off to bed.

murphsmum,

i walked my dog all the way through my weekly Paclitaxel for 12 weeks so dont know why you were told not too.

my chemo nurses said it was good exercise and was good for me being out in the fresh air.

grab that lead if ur upto it and walk ur dogs....  good luck...mini mad xx 💖💖

Member

Re: September 2019 Chemo Starters

Today I had my first fec chemotherapy treatment. So glad the anti sickness medication worked, I have also been prescribed 3 other anti sickness medications as well as mouth wash and 10 days worth of injections. At this precise moment besides a headache and the odd ache I’m not feeling too bad. I’m just going with the flow of what each day brings 

Member

Re: September 2019 Chemo Starters

Hi Kattz 

me too re Amazon basket! 😂 I’m awaiting my chemo start date having just had first oncology appointment. Wishing you lots of luck and hugs 

Tam x

Member

Re: September 2019 Chemo Starters

Hello 👋 

 

Wishing you loads of luck for the start of treatment! I’ve just had my first oncology appointment and am awaiting a start date for weekly chemo. I’m undecided about the cold cap - part of me thinks it might be better just to resign myself to the hair loss - it’s s temporary thing after all. If you go for it, please share how you get on

hugs

Tam x

Member

Re: September 2019 Chemo Starters

Hi Emzlew

 

It sounds as if we are in very similar situations - today being the 10th I’ve just had my oncology appointment, and am now waiting on a start date - could be up to three weeks apparently! I think the waiting is probably the worst bit! Be great to stay in touch and hear how you get on.

hugs

Tam x

Member

Re: September 2019 Chemo Starters

Hi Murphsmum,

Good to hear your feeling ok apart from thrush and cramps. Hope they clear ASAP.

I had my first EC yesterday. Feeling ok so far and was just sent home with Dexamethasone and metaclopromide. No injections yet, thankfully.

x

Member

Re: September 2019 Chemo Starters

Hi, I’m 7 days after first round of FEC, feeling ok, have got thrush in my mouth, been given something by the GP, which I think has given me a nasty taste in my mouth as it was fine before. My last tummy injection tonight which my husband or son have been doing as I can’t face doing it to myself, they’re both pro’s now 😊

All my hair is still here which is a bonus, my main problem is boredom, can’t take my dogs out as I was advised that picking up dog 💩 wasn’t a good idea.

I’ve had a few stomach cramps but spoke to the chemo nurse about this and I told her I was taking an anti sickness pill after my tummy injection as I felt sick the morning after my first one, she told me the anti sickness pills can give you stomach cramps and diahorrea, so have stopped taking those.

Other than that felt generally crap for a few days but I think I’m coming out of it now and hopefully will be ok for the next couple of weeks before it all starts again 🙁

Member

Re: September 2019 Chemo Starters

Hi All,

 

I'm from the March19 group, and wanted to put in a few tips from my experience because I was one of the unlucky ones who had an awful time through chemo. (Most of the rest of my group didn't, so please don't let this scare you.)

 

I was originally due to have 3 FEC and 3 Docetaxol, it ended up being 2 FEC and 3 Abraxane, which is a different type of taxol.

 

1. Especially on FEC,  clean your teeth after eating anything at all, with a very soft toothbrush. Even if your mouth is feeling sore and awful, this will help.

2. If you find yourself feeling extremely and severely down the day after your steroids finish, talk to your chemo team or your oncologist. If you are sitting there debating if you should ring them or not, you should.

3. Steroids can reduce your impulse control - consider cutting off your access to easy online shopping for a while unless you are rich enough to not care!

4. Bone pain from the taxol - mine was severe and after a couple of days I was prescribed a week's worth of slow release Tramadol, which helped immensely. Although it's an opioid it is a synthetic one and gives you far less constipation than the others.

 

One other tip - through chemo, do not try to eat your favourite meal, whatever it may be. Having it associated with how you feel through chemo can put you off it for life. Also whatever you can eat during FEC will likely be completely different during the T phase. During FEC all I could eat was mashed potato, baked beans and veg soup with cheese. During T I couldn't eat any of that and couldn't cope with dairy at all, not even milk in my tea.I lived on marmite toast for 9 weeks!

Member

Re: September 2019 Chemo Starters

Berylperil
Sorry to hear of your back pain and the fact that I can't suggest anything that would help. Hope this doesn't exacerbate but thought this might at least amuse.
In addition to the existing fungal infection I now also have a lovely dose of thrush, far better however than the genital herpes (and subsequent frog marching to the nearest STI clinic) that the "operatives" on NHS 111 were suggesting pre doc appointment yesterday! Quite a journey but not as exciting as would have been to explain to the boyfriend that particular bombshell.

Sam X

Member

Re: September 2019 Chemo Starters

Thank you pink flamingo I hope all went well. I sometimes have to occasionally take pain relief for migraines. Is there any painkillers I can’t take whilst having chemotherapy.

Member

Re: September 2019 Chemo Starters

Hi Naomi40, 

I had my first cycle of FEC yesterday. I was pleased to have taken some socks with me as my feet got quite cold - not sure if as a result of the treatment or just chilly!! Also some sweets especially for the C part which can give you a funny taste in the mouth. 

After 24 hours, I’m feeling a bit thick-headed and my OH says ‘a bit vague but very deliberate when you try to do something’ !! Nothing new there then - lol!!

good luck with yours xx

 

Member

Re: September 2019 Chemo Starters

I have my 1st fec chemotherapy on Tuesday. I think I’m prepared for it. Is there anything in particular I should take with me on that day?

Member

Re: September 2019 Chemo Starters

Hi ladies, 

 

just catching up on how everyone is doing. I didn’t get much further than introducing myself a few weeks ago and many of you have started your treatments. So good to hear you’re all doing ok so far and managing your side effects. 

 

I start EC on Monday so I’m spending today bloody cleaning!!! Although I have been to park run with my son this morning, I’m hoping to keep these up if and when I can.

 

kind of feeling prepared... well I’ve bought a wig and thermometer. Not going with the cold cap as my hair is fairly fine so I thought I’d give it a miss to stop me stressing about saving my hair. Wig shopping was a rather fun day, I went with a friend and we had fits of giggles throughout. 🤣😂 I definitely don’t suit being a blonde or having waist length hair. Although I think my husband would’ve liked me in that wig 😉

 

Enjoy your weekend ladies 😘

 

 

 

Member

Re: September 2019 Chemo Starters

Hello all, I hope everyone is ok!!!

 

Had carboplatin yesterday morning. PICC line fitted at 9.30am, was interesting seeing it fitted on the big screen and was painless, it made treatment so much easier this time.

I slept around 5 hours - I think its the steroids but feel reasonably chipper this morning just a bit tired. 

 

My thoughts are with all of you going through treatment, keep taking the tablets !!

 

Hugs xx

Member

Re: September 2019 Chemo Starters

Hi all, 

 

Pink flamingo, I too had the same sort of feelings pre first chemo, I.e feeling well and that it being difficult to reconcile that treatment was going to make me sick.

 

Struggling tonight with low back pain. No change of position seems to relieve, it has taken me a while to work out that this is likely the famous bone pain that has been mentioned. I had my 5th injection tonight. Tomorrow I am going out to get some Epsom salts as recommended by Shi. 

 

If there are any other good hacks for managing this discomfort please share.

 

Pb
Member

Re: September 2019 Chemo Starters

Pinkflamingo.

 

Thinking of you today...hope all goes well.

 

X


@pinkflamingo wrote:

Hi All,

Start cycle one tomorrow 😱 Finding it all so difficult to reconcile what I am about to do to myself with the way I feel ie actually very well. Leaving work tonight was tricky- my colleagues are all so lovely - showered with wonderful thoughtful gifts. 

Reflexology tonight though so hoping to feel a bit more chilled and less anxious xx


 

Pb
Member

Re: September 2019 Chemo Starters

Sam..

 

Thank you for your encouraging words.. 

 

First paclitaxel done yesterday and I feel.ok just tired and achy..

 

I persisted with the cold cap and it was not as bad as I thought it would be. Took lots of layers and a blanket..

 

It was a long day as I also wa given herceptin and perjeta so was glad to be home last night for a rest.

 

Hope you are getting on ok

Pardeep..x

Shi Community Champion
Community Champion

Re: September 2019 Chemo Starters

Thrush infection alert- any thrush infection will need proper meds from your units not a treat it yourself solution like you usually do. If oral thrush you usually get fluconzole tablets. Please keep safe and phone your units ❤️💕💕✨✨Shi xx