May chemo starters 2018

[Michelle21]

I hope Thursday goes well for you Tracey. I have had 3 T so far and it has been ok. X

[mustardandgrey]

@Tanya...hope you feel better soon.
It does pass quite quickly, although that's no comfort at the time.
For me it passed on day 7, yesterday.
But by far the worse days for me were days 5 and 6.
I cried with the sheer pain and lack of sleep on Saturday night, was an emotional wreck all day Sunday, but then Monday rolled around and I woke up feeling quite human again, except for the mouth ulcers. Those have been excruciating this time around, and my tongue turned yellow and furty overnight.
But the flucozole steroids are doing their job on those.

Sarah xx

[tanya]

@tracey look forward to meeting u there hope T goes ok x Im now day 4 of T and woke up as if I had been thrown against a wall . No energy what so ever and have spent most of the day on and off sleeping, paracetamol keeping pain away in my joints. No ulcers as of yet just a general run down feeling hope it passes soon . But on a positive only two to go and this is making me better ❤️

[Tracey Mac]

I attend Velindre too Michelle21, Stan was my first nurse and he made me feel relaxed and pit me at ease. I have my first T this Thursdsy.
Tanya in an booked for LGFB the same day and time as you so I am jist hoping I will feel well enough to attend after the first T .
Look forward to seeing

[Michelle21]

Oh is this the Welsh thread?!😂 I’m also at Velindre! I’m having my last Chemo (T) on Friday 20th. I’m on the April thread. I’ve had Rhys, Ruth and Stan and they have all been great. I haven’t done the LGFB course I keep telling myself to book on but haven’t got around to it. Have you all had surgery? I’m having it after chemo at the Royal Glam.
I hope your chemo continues well and is uneventful x

[Hets67]

@jacob well done for getting home. It’s so tough being in hospital on top of everything else. Sounds like T is tough, feels like I dodged the bullet not needing it, thinking of you all going through it and sending strength and love. Been decided I will go ahead with chemo on Thursday but without the G-CSF injection because they think now that could be giving me the fever. I will just have to be extra diligent on staying away from bugs. In meantime making the most of the week off chemo. @shi my pelvis does still ache when I’m lying/sitting down but it’s not so bad that I’m too worried atm 🙏🏻🙏🏻🙏🏻

[Shi]

Jacob, glad you are home 😘now please keep 💪💪💪💪and there will be no wing walkers by for number 4 for you as captain costas needs you to hand round the ferro Roche please on the plane this time, think he’s trying to boost duty free sales as he knows planes nearing Greece and club Tropicana ever day 💃🏻💃🏻🕺🕺💃🏻💃🏻💃🏻You are all doing 👍👍👍and the duty free trolly with makeup is on its way looking at all the Lgfb sessions you’ve coming up 💄💋💄💋💅🏻💅🏻💅🏻💕💕✨✨Shi xx

[tanya]

@mustardandgrey thanks for the advice I'll be waiting in anticipation lol x I have just given myself the injection and it was so easy it's for an extra boost did u have this too if not will keep you informed. @ Tracy Mac I have lgfb on the 24th of this month @ 10.30 maybe see you there if it's the same day x I'm still feeling ok and have been out for a walk around caerphilly and picnic in the park with my mam hope everyone is ok @jacqb glad your home safe rest up and take care x

[JacqB]

Glad to be home after another admission for neutropenia. The antibiotics add new side effects on top of the chemo and injections. It really is miserable. Dreading chemo number four 😞

[Tracey Mac]

Hi Ladies,

Just reading the side effects of the dreaded T as I will be having my first next week. Linda, Sarah and JemPD, hope the mouth issues can be resolved easily with medication. Tanya, I also attend Velindre and Rhys was my nurse for the last FEC and he was great. Tanya when is your LGFB session booked? Mine is 5 days after first T so I hope i will feel up to going as I am looking forward to it.
Hope the diarrhoea has settled and you are feeling better Joandbasilthedog,
Hets - has the pelvic pain resolved?
Everyone is doing so well despite the nasty side effects we have to endure and sharing how we cope with it all is so reassuring so thank you ladies and please keep posting, we will reach our exotic destination in the sun 😊🌞✈

[mustardandgrey]

Hi Tanya!
Hope you're still feeling okay.
I'm a few days ahead of you on the dreaded T, docetaxol.
Just be prepared for the crash on day 3, after the steroids stop.
So different to FEC, after having next to no symptoms for the first two days after, except steroid induced lack of sleep, I woke up on day three with bone pain, mouth ulcers, a burning throat and have now, on day 5, developed a particularly grimy looking furry yellow tongue!
I've resorted to paracetemol every 6 hours or so, worse at night, and hoping it passes after a week or so.
I also have a bruised feeling in my thumbs, which makes peeling celotape difficult.

Sarah xx

[tanya]

Hi all well first T yesterday and despite being up at stupid o clock again I'm so far doing ok, but guess that's due to the 8 steroids a day for 3 days. This time I had to start the day before T, Im also having to inject today. Tropic all x I suffer with indigestion and been prescribed lansoprazol which I take daily it has stopped it completely and I also have gelcare oral rince gel for ulcers and sore mouth which they say is very good it coats you mouth and stops infection. As well as mouthwash x must say a big thank you to all the nurses at Velindre they are fantastic and so friendly and reasuring, and a big shout out to Rhys today for finding my vein first time my hero for the day ❤️ hope everyone is doing ok andooking after yourselves and keeping 💪💪 xxxx

[Shi]

Linda, they have a duty of care that they should adhere too, phone the Bccf helpline to get some guidance on this darling, you should not be putting yourself at risk of any infections during Chemo. 😘😘💕💕✨✨shi xx

[Linda Corinne]

I have got difflam from the docs. I forgot to ask and thought i would last til monday as going in then anyway. I have asked to work from home and HR referred it to my manager nearly 6 weeks ago.

[Shi]

Linda Corrine, ask your onc for 2 x difflam in your meds goody bag, I used to go in with list of stuff, 2 x difflam, box fluconzole, antisickness meds, wok, cuddly toy and a partridge in a pear tree, ask for things otherwise they assume all ok and you don’t want it. Failing that speak to pharmacist in boots and they’ll be able to help. I went on full lockdown during Chemo, to be fair it was winter and the news was banging in about worst flu season 😷😷😷😲😲😲😳😳😳😳 could you work from home? Your company should be supportive with minimising any risks. Joan and the bulldog, have you tried the fever tree range of drinks, I know a few ladies have found those pleasant tasting 😘 get that black fingernail polish on nails for the t ladies, helps preserve your nails by protecting them from uv light. I sound nuts, but I did keep my fingernails and so did mai7 who was proper trooper who did 8 chemos💕💕✨✨hi xx

[Linda Corinne]

Came home from work today as went to the loo 3 times today and so went to bed when got home. Had bad lower back pain Tuesday night but that was fine last night. Took paracetomol all day just in case. Got a very dry mouth. Someone at work is going to the doctors tomorrow as thinks hes got sinusitus. It can be an infection and he sits near me now but the oncologist said the only way to avoid infections is to stay at home and isolate yourself which isnt practical. Any thoughts anyone? Still got a rash on my hands which the nurse who flushes my picc said just to keep it moisturised. Will know the day before cycle 6 if having a 7th. Getting fed up now and cant wait til last one. Felt sorry for myself Sunday and Tuesday. Still not sleeping for long. Running out of Diflam mouthwash but i think you can get it from the chemist. Will check online. Soz to hear you are in hospital Jacqb again. xx

[Tropic_al]

Hi all, 

Just been catching up with your exploits...sorry some of our mad group aren't doing so well. Hope you're feeling better today. I'm going through the down days of fatigue and a sore throat today..and indigestion, a new one for me. Where's the gaviscon?

A couple of days ago I was happy to be through FEC..now I feel quite low and dreading T even more..and it's still two weeks away. Think it's time to focus on the present and try to enjoy the better days coming up this cycle.

Enjoying the cooler days but still not sleeping...how irritating is that!

Thanks for the humour everyone..you're keeping me going xx

[Hets67]

Hello ladies. Lots of posts and lots of dreadful things we’re coping with. I have dreadful aches in my pelvis when I’m lying down (seems fine when I’m up and about although I’m not exactly running a marathon!).

@jemPD ulcers sound awful! I haven’t had them but my friend did and swore by sucking lollies I will try to find out more details.

@jacqB are you still in hospital? I hope they have managed to find out what has made your temperature spike. In my experience they like to put you on 48 hours IV AB and then monitor you for another 24 hours when they switch you to oral. Sending you lots of positive thoughts!!!

@joandvasilthedog are you still in hospital? Chemo is tough. Not sure if it helps but I spent time in hospital when I felt well enough talking to other patients (cancer and Jon cancer), it helped my mood because often there were others who were struggling more than me.

Seeing Onc tonight, will see if he wants to change my plan 😱

[Joandbasilthedog]

Hi Ladies .. its been a while but I have been feeling so miserable I haven’t wanted to post! The effects of docetaxel have caused such diarrhoea that I have spent day in hospital last time. After the third round they have reduced the dose which has helped but the nausea has gone on much longer. I guess like all be glad when the heat has gone. I am trying to drink but can’t find anything that I want to drink as it all tastes like chalk 😐...Finding each cycle ( mine stay the same for all six hecp/perjeta/docetaxal/carboplatin) takes a day longer to get over but I guess that is the compound effect . My op is after the chemo so want to get finished asap so on to next bit . Anyway just wanted to say all your words and stories have kept me going . Its very easy to feel very alone out here xx

[RiaKK]

Hi Jem.  Don’t know about food but I had mouth / tongue sores for 3-4 days.  My nurse recommended Difflam which I got over the counter (Uk) in the pharmacy.  All gone in about 36 hours if not sooner.    When I read about foods it said avoid hard foods, acidic drinks, alcohol and eat bland, soft stuff.....

[Shocked]

Hi JemPD I’m from the January thread and finished chemo on 8th May but had really bad mouth ulcers throughout - don’t know what you are using for relief but I found the best thing in the end was Gelclair so soothing compared to mouthwashes like corsodyl. 

[tanya]

Thanks Paloma for the encouragement it's good to know it all starts comming back. All of my treatment including rads finishes in October hoping to look and feel more normal by Christmas x and hopefully lose these few more pounds Ive gained (thank you steroids)

[JacqB]

Hi fellow May starters
Have hit the neutropenia wall today. Felt dreadful all day and temp up to 37.7 with a very fast heart rate. Phoned the helpline and was told to come in for checks. Overnight stay for me and fingers crossed that neutrophils improve tomorrow. It’s really frustrating as I’ve been injecting since Saturday and had hoped to avoid another admission Bloody docetaxel!
Jacq x

[Shi]

Jen, please keep eye on your mouth and temp, just give unit a ring to see what they advise. I know I’m a mother hen in the cockpit with captain costas, but it’s about you all getting safely through Chemo ❤️❤️💕💕✨✨shi xx

[Paloma]

Hi May ladies, I meant to put a message for you on here but it's gone up as a separate message called After treatment. X

[JemPD]

Tanya - sorry about your eyelashes and eyebrows 😖my eyebrows thinning.
So today my mouth is covered in ulcers , I’ve been having Manuka honey, mouthwash etc, really painful. Does anyone have any suggestions on food please? Managed a few pieces of pasta today. Tried a piece of chocolate but it made me cry. Drinking sparkling water but anything else isn’t good.
Thanks

[tanya]

Hets xx excellent news glad all ok ❤️ woke up this morning and now my sparse eyelashes are non existent. Eyebrows very thin now, can't believe how much eyelashes and eyebrows define your face until their gone. LGFB booked for end of month hopefully will get some tips on this x

[JemPD]

Fab news Herts - welcome back on board- a lovely window seat for you with extra leg room😊😊. We’re all over half way now and can still smile😊

[Shi]

Hets✨❤️Excellent news brain scan is clear my lovely and great news you jumped on the magic carpet we sent to get you outta casa nhs 👍👍Leanne have a beautiful holiday 🌞🌞Tanya, t is a lot kinder to your veins and please don’t be too 😳😳it’s like fec becomes a security blanket and you want to stick with that, we were all the same on the Oct thread. Just do what your unit tells you and be vigilant yourself as you have been and look at the bell in your unit and think I’m ringing you soon 👍get your bell ring outfit planned, it’s a celebration for you to look forward to, we had ladies in pink wigs, ladies in wonder woman pants, tinsel wigs whatever you fancy really and what will make you smile is the most important thing, keep 💪💪💪💪beautiful amazing ladies and if you break it down into weeks as you start your 4th Chemo, that’s only 3 weeks now of any se’s, then it’s wing 💃🏻💃🏻🕺🕺💃🏻💃🏻💃🏻On the wings of captain costas plane to Zorba the Greek tune as we land in Greece 😁😁😁💕💕✨✨✨shi xx

[tanya]

Hi all
Went for bloods and clinic today ready for the dreaded T on Friday. As they struggled with veins on last cycle have to up my water intake I'm already on five pints a day I was also advised to keep my hand warm so I'm wearing a wolly glove next time, gonna look really stupid if it's still hot but I'll try anything. SE sound a bit more intense though. I have to have an injection in my stomach 24 hours after chemo to boost me right up which I am gonna do myself will be shown on Friday how to do it. Any one else done this. All in all still doing well so roll on Friday and then only 2 left. Hope your all ok pink sisters ❤️💓💓💓

[Hets67]

I’m out!!! Free!! All it took in the end was a ymca scoot to the shower (I got the inmates signing), and 3 goes of Wizard of Oz heel clicks, and some mild bribery of the nice young doctor and I was gone! I even couldn’t wait for the meds from pharmacy so he agreed to give me tonight’s dose from the trolley and my husband isn’t going to pick up the rest on the way home. REEEEESULT! My other inmates managed to get out except for a young girl with tummy pains which the docs can’t diagnose - but since she felt well enough to go outside several times a day I don’t think the medical teams had much sympathy! Oh and my lovely new friend Maggie who was going through chemo for the 2nd time for non Hodgkin lymphoma and had to be moved to a side room because her white blood cell count went too low - so we sent packages to each other of biscuits and cake through the nurses. I will be willing her out tomorrow. @mustardandgrey welcome back! I hope you don’t crash but if you do we’ll be ready with the refuelling support plane. Somehow I find that at least if I expect to crash it somehow feels more tolerable?

Happy Tuesday - the only way is up:). Oh did I tell you guys my brain scan was clear (probably of brain cells as well as tumours!) 🤣🤣🤣

[mustardandgrey]

@leanne17 I can't remember the vein whisperer's name but he's really good and all the nurses turn to him when they come across iffy veins. He's the only male nurse I've seen at the unit and he's always worn green when I've seen him. Definitely worth asking for him. The scorching is pretty awful, it's felt bruised to the touch aswell as when stretchjng my arm all cycle. I was advised to use an ipuprofen gel, which is soothing, and to keep an eye out for swelling in my hand incase of a blood clot, but my hand is fine.
Hope you're enjoying your holiday!
Sarah x

[Leanne17]

Hello ladies. Hope your all feeling better!! @Hets praying you get out today 🙌 as for packing I’m a last minute girl. Plus I have family over from California so been busy last few days.

@ Tanya my eyes are awful. Loosing eyelashes and brows now and eyes are constantly streaming making my nose run too. Woke this morning and eyes we’re VERY puffy but settles a bit now.

@ Sarah. Who was the vein whisperer so I can ask for them when I’m back of hols. I’ve got the same issue with my veins. Very scorched and hard to straighten arm but hoping the holiday break befor next cycle will give them chance to recover a little.

I should be having bloods today and 4th cycle Thursday but will be 27th now. So glad I was determined to go on this holiday really think it’s kept me going and kept the side effects at bay!! I’ll prob be terrible for last 3 cycles but hey ho we’ve all come this far!!!

Hugs to everyone xx

[mustardandgrey]

Hello!
I haven't been on for a while, distracted by the sun 🙂
Yesterday was my fourth session, where I swapped over to docitaxol after three FECS.
To say I was apprehensive is an understatement, as it's the step into the unknown sude effect wise.
Plus, I haven't really heard anything positive about docitaxol.

Veins were an issue this time around.
I have plebitus in one vein, rendering it unuseable and tight when I stretch my arm sideways.
The doctor said it was probably scorched from the FEC.
However, luckily there was a vein whisperer on site who managed to get a vein to play ball after the nurse had one failed attempt!

So, one day later and buzzing from the steroids I have yet to feel any side effects at all, as opposed to FEC, which sent me crashing into wooziness and fatigue after just a couple of hours.
Although I am fully expecting a crash tomorrow when I stop the steroids tonight.

Sending a big hug to all you lovely ladies and hoping side effects are minimal.

Sarah xx

[Kip]

Hello Ladies, I am on the June chemo page but I often pop on to yours to see whats "waiting in the wings" for me and just wanted to say, your thread has me rolling around laughing... I know its not funny being in hospital and being pumped full of chemo but just reading your posts makes it so much more bearable... Shi you have helped on our thread too... I can't wait for a cocktail!!!  Hets just the updates on the "inmates" in your ward have me in stitches and as for picturing the YMCA walk to the loo... well so funny.

Thanks again for getting me through another day....you ladies ROCK!!

[JemPD]

Good day here after a few horrid ones. My body shouted loudly to me on Sunday- ‘I'm not doesn’t like all this’ -chemo then steroids and then nothing - I think every cell in my body ached- took me 5 mins just to stand up 😖 however woke up today feeling positive and much like me 😊
Tropic-al - know what you mean about swallowing, I’ve now gone off coffee (decaf) as couldn’t taste or swallow, again today feels a little easier (day 8 post cycle 3). Try cold sparkling water- i’m finding easier and enjoyable.
Herts - 😖 sorry you’re still in casa NHS. How did ymca trip to the toilet go? Thinking moon walk could be tried - who notices?? Waiting to hear the good news that you’re home v soon xx

[Hets67]

Still here! I’ve switched from One Flew Over the Cuckoo’s nest to Girl Interrupted. I’ll be running this ward before too long. But I’m back on oral antibiotics so fingers crossed i’ll be home later today. Well done ladies on surviving (or not!) the heat. That’s been a plus side to being locked up:) 👍🏻👍🏻👍🏻.
@topic_al well done for avoiding a&e and finding your heart (as if there was ever any doubt!).

@linda Corinne - never heard of it I’m afraid, sounds slightly scary.

@shi I only just saw your challenge. I have to get to the bathroom in the next hour so will take it on board and see how I go. I’m def the veteran of this ward now.

@jem pd - thanks for your thoughts. Like you I am now losing what’s left of my eyebrows and lashes. Let’s hope they grow back!! 😱😱

@Leanne, you must be all packed for your holiday now aren’t you? Soooo lucky!!!

Xx

[Tropic_al]

Hi all,

just catching up on the many wonderful and sometimes mad conversations on here..you're all amazing. 

Hets hope you're feeling better and have escaped the asylum now? 

Friday went ok..that's 3 FECs done and dusted. I seem to have a strange problem and can't swallow so well in the evening..even water sometimes but didn't panic do much this time so no A&E! Have felt a bit tired the first few days but not too bad and even managed to go and visit a friend for lunch today😊. The heat is a bit much for me though do not sleeping well. Back to the ginger, pineapple and Manuka honey and hoping for the best in the next few low days.

TraceyMac- well done on the cold cap..I'm persevering too even though it was definitely more painful this time with less hair on top. It does give me confidence though..we'll see how much drops out then may chop more off the back. I've probably lost 50% too but hard to judge..I had so much. Going to start to take Biotin and use some Biotion and collagen shampoo to see if it helps. 

Hoping I don't lose more on T but we'll see.

Had a heart echo on Friday ahead of Herceptin next time too..it seems I have a heart and it's OK for now 😁.

Keep well everyone, will be back soon.

Tropic_al xx

[Linda Corinne]

What does reduced signal mean re response to FEC?

[Shi]

Hets😁or aka Jackie Nicholson, frustrating my darling but better to be safe and all ok before escape from casa nhs, me zing you up a special I’m a may girl get me outta here cocktail in the galley 🍹🍹👍👍have you managed to do a quick ymca dance to the loo yet, that’s today’s mission, report back how many strange looks you get and if you need a good laugh look up bristol stool chart cakes images on google 🤣😂🤣😂🤣 some people imaginations are 😂🤣😂🤣😂🤣😂keep 💪💪💪💪and get a bit of internet shopping done so you’ve lots of nice bits to open when you get home 💕💕✨✨✨shi xx

[Tracey Mac]

Feel well soon Hets, sorry you didn't get to go home when you were almost there. I loved one flew over the cuckoo's nest, you are certainly getting entertained during your stay.

[JemPD]

Hers- so sorry you haven’t checked out of Casa NHS yet😖- however they responded quickly and I’m hoping you’ll be back on the plane with us all soon. Sounds like the other patients are keeping you on your toes!!!!
Sending hugs to you today. Take care xx

[Hets67]

@shi haha now that a cocktail worth trying!!!!! @tanya my eyes are starting to water a bit and lashes v thin now, barely with trying with mascara. Although it must be much harder with CL. Poor you. I’m still in Casa NHS 😡. I so nearly made it, keys in my hand, then doc yesterday said he wanted to get new bloods checked before I go, I started feeling sick, feelings rotten, sleeping, and before I knew it my temp spiked back up to 39, and I’m back on IV AB, so the whole wretched cycle starts again! Needless to say my temp is back to normal after a few hours on IV. But now there’s no chance i’ll be out before tomorrow. My fellow inmates are losing it - one of them work me up at 2am standing over my bed asking if I was’in on it’. Anyone ever seen One Flew over the Cuckoo Nest? I’m feeling like jack Nicholson!

[Shi]

Tracey mac, so glad you got yourself checked out and all ok 😘😘😘you are all 💪💪💪💪and hard and can do this, just do it safely, it’s ok to have the red flashing batman hotline through to units, they’d rather you check things out and keep safe, I know quite a few of us on last oct’s thread were platinum phone members during Chemo 😁😁hets, great news you are leaving Casa nhs for home 👍👍👍💃🏻💃🏻💃🏻🕺🕺🕺💃🏻💃🏻💃🏻You’ve done your holiday stop over at casa nhs, let’s keep you on the plane now, the may girls need you to swoosh their cocktails up the aisle of the plane please 🍹🍹🍹🍸🍸🍹🍹i’ll Have a large raspberry, pineapple and kiwi crush over ice please and plane captain costas will have a Shirley valentine wall banger please 😁😁😁💕💕💕✨✨✨shi xx

[tanya]

Hi hets xx hope your feeling ok and fingers crossed home tomorrow. Has anyone experienced watery eyes. For the past 2 days my eyes keep running and yawning is worse. I seem to be loosing eyelashes slowly the bottom row is vary sparse now and noticing gaps on my eyelids too. I've been wearing my contacts up to now but back to the specs from now on, this is going to be fun as I'm blind as a bat and need contacts in to put my make up on lol x hope everyone is ok and managing se ok ❤️

[Tracey Mac]

Hets, so glad you are seeing some humour in your situation, being a nurse I can relate to the 'other patients' you are experiencing to amuse you during your stay. Hope you.get home tomorrow as planned.

For all us cold cappers, i have finished 3 x FEC and I have lost about 50% of my hair, no bald patches just thinned out alot. I got it cut shorter today and I was dreading it but it looks and feels so much better. Glad I took the next step. Will continue cold capping as long as I can.

[Hets67]

The heat is getting to the inmates. One lady walking around with a paper mache pee pot on her head, another one shouting at all the doctors because they won’t operate on her piles as a priority because ‘she lived through the war and is entitled to it’. I just turn up the volume on my iPad and keep reminding myself I’m actually in the middle of the Aegean Sea (although at times I do wonder who is more mad!🤣🤣🤣). All ok, home tomorrow, head scan done (no results but i’ll assume all fine unless someone comes to tell me otherwise!). I’ll then take it easy and try not to overthink things before Thursday. Thank you all for your support, I really was imploding yesterday and knowing you were there made all the difference. I don’t envy you all in this heat because everyone who comes in to visit says it a lot hotter today!!! I have a friend who has finished her chemo and her hair started growing back whilst she was having her T. We’ll all get there - and if I do bail early I will practice the cocktails so they’re up to scratch by the time you get there 👍🏻👍🏻😘😘😘

[JemPD]

Great news Tracey Mac x

[Tracey Mac]

Thanks everyone, glad to report temp returned to normal, didn't need hospital visit and feeling much better.

[JemPD]

Linda Corrine - should read ‘well done for being at work. Woke this morning expecting achy muscles’!! Xx