67.7K members
1.2M posts
cancel
Showing results for 
Search instead for 
Did you mean: 

June 2018 Chemo Starters

RedRose
Member

Re: June 2018 Chemo Starters

Good afternoon ladies. Doing ok today after managing a good nights sleep. Insomnia and muscle aches have not been conducive for a restful night. Feels like I’m doing a Irish jig in my sleep with restless legs. Arm still swollen and hand swollen and bruised still be manageable. Right arm feels so weak. Goodness ladies what have you all been doing, just catching up now and seems your all in hospital or suffering badly with side effects xx
RedRose
Member

Re: June 2018 Chemo Starters

0BA28ED3-1DA9-42EE-83C4-55938B71F484.jpeg

cdc1811
Member

Re: June 2018 Chemo Starters

Hi all

Sorry to hear you were still suffering through the night Reddi. Hope you are still diarrhoea free this morning and that you’ll be out soon.

Georgie G I sincerely hope your platelets are ok and you finally get home 🤞

Hope the fluconazole works for you Kip and you can avoid the lardy mouth. Sitting by a Wood burning stove sounds so cosy. I know what you mean about the hot flushes though!

Thanks for the advice Jay68 and for sharing your experiences.

How are you doing today Lisa Marie?

LJ it’s frustrating about the cold cap not fitting exactly right but I do hope you like your Pixie cut.

I’ve had a positive day. I managed to see my ‘helpful’ oncologist. I had so many questions about my new chemo regime and also wanted to see if I could change the day I’ll be having it. He was brilliant -he explained that the Packlitaxel should be much easier on my body and he’s happy I’m going onto it as it’s his preferred regime. He said my reaction to the docetaxel was severe as it happened so soon after my first dose of T, I was warned my skin might start peeling off but thought nothing of it but I now have an area between my thumb and forefinger where it’s doing exactly that- thankfully only a centimetre round at the moment and hoping it won’t get worse. I should be starting the Packlitaxel next Friday (bloods on Thursday) now but all the computers were down at the appointments desk and the chemo scheduling department need an email from my BCN confirming the new days before they can fit me in. I will be very relieved when I get confirmation that it’s all going ahead. Also I don’t need to see the oncologist every week, just every 3 weeks as basically having the P weekly means they just divide the dose by 3 and they only need to see me once I’ve had the full 100%.

As an aside, I know some of you are TN and we learned today that my onc is a leading expert in the field and is presenting some new research into treatments at a European convention next month. I’ll see if I can find anything out next time I see him.

Feeling so much brighter and hopeful today thank goodness. The thought of 9 more cycles of chemo was really getting me down but I now know it’s for the best. I will see my GP on Tuesday to get a referral to the Royal Marsden as I’ve had two different people recommending the surgeons there. Hope they’ll be able to see me and we can plan for surgery in the New Year.

Hugs to everyone xxx

Ps will have to take a look at the moon tonight!
Kip
Community Champion
Community Champion

Re: June 2018 Chemo Starters

Reddi, Yes hasn't the moon been amazing, would love to have got a great photo of it, but my old camera just doesn't do it justice.
reddi
Member

Re: June 2018 Chemo Starters

@Kip 8 weeks! Hilarious. A woodburning stove sounds so cozy. I would love to have one if we ever flee our flat in London. But for today, enjoy the lovely, sunny day. Gorgeous here.

If you didn't catch the moon last night, I suggest trying to do so this evening. Gloriously beautiful. My east-facing room had an amazing view in early evening, and then quite a brilliant sunrise.
reddi
Member

Re: June 2018 Chemo Starters

@Jay68 I have not had surgery yet -- other than bilateral SLNB, that is. Really hoping the PH portion of TPH shrinks up the HER2+ side, though I may still be looking at mastectomy for it. Other side is HER2- and mucinous, so should be lumpectomy.

Not sure that I will be released today. Had diarrhea overnight (and the 4am bout required calling the nurse for gown change and hazmat clean-up. UGH. On the brighter side, it's been 3 hours since my last episode, so maybe things are settling down.

Feel bad for my neighbors, who would have heard it all if they were aeake overnight. I say this as there is someone nearby who was up all night vomiting. I feel lucky in comparison.
Kip
Community Champion
Community Champion

Re: June 2018 Chemo Starters

Hi

Georgie Gee - sorry to hear you haven't managed to escape you but hopefully you will soon and good news the infection has gone. 

Reddi - now you are joining the Casa NHS sleepover too.. oh dear, hope you got those 8 hours sleep in the end and are now rehydrated.  Thankfully I have not had the diarrohea throughout chemo, just get constipation for first week on the T (steroids I think) so lots of lactulose for me.  

I'm now on day 4 of last cycle of T and the mouth is starting to get lardy, so onto Fluconazole today to combat that hopefully, although my GP managed to prescribe me 8 weeks worth yesterday instead of 10 days.. its either all or nothing with them!  I've had 2 injections so far, and thats going ok, although still dislike doing it and still having the useless nights sleep, last steroids tomorrow though so probably have the downer days at the weekend too.   I've managed to track down my ONC nurse too and she can't arrange the planning for rads until after surgery, results and checkup (even though the surgeon asked me to get it sorted now) so will probably find my rads fall over Xmas too!  Grrrrr..

Another beautiful sunny day here in Suffolk, although I think it may be the last.  Although I am looking forward to some cooler evenings as suffering hot flushes too, and also treated ourselves to a lovely woodburner stove and can't wait to get it burning, though with the hot flushes I might regret it and have to have the window open too! 

Take care all

Kip\

xxx

Jay68
Community Champion

Re: June 2018 Chemo Starters

Reddi - hope you slept well.

 

Just for reassurance, the diarrhea was always a bigger problem for me during the 2nd/3rd week after treatment, it would always be OK again in time for the next treatment!  Strangely enough you get used to the timescale of symptoms!  

 

Good luck for the remainder of your treatments, have you had any operation yet?

reddi
Member

Re: June 2018 Chemo Starters

First TPH was 13 Sep (PH) and 14 Sep (T). Day 13 for me of T. I was so excited to be nearly out of my WBC trough, too, without febrile neutropenia (FEC 1) or mystery swelling, pain, and redness in my cannula arm (cellulitis? they don't know; FEC 3) while, of course, neutropenic. C'est la vie.

Now really going to sleep!
Jay68
Community Champion

Re: June 2018 Chemo Starters

Hi reddi - no worries - good to pass on experiences! When did you have your first TPH? I had 3 EC before the TPH too. Keep up with the water - I still aim to drink 2 litres (plus normal drinks) a day - I feel so much better for it too!

Glad to hear your obs are good and can get 8 hours sleep - good luck and night night x
reddi
Member

Re: June 2018 Chemo Starters

Thanks, Jay68! I'm on TPH, too, and this is my first cycle post 3 of FEC. I have been drinking at least 2 liters of water a day, plus tea, juice, etc., on top. Strangely, I have had no mouth sore or slime issues and very minimal taste issues (really taste the metal of utensils) -- and have been eating my usual diet as a result, which involves salads and soup and falafel and baked salmon and yogurt and fruit and roasted and raw veg (all scrubbed very thoroughly with anything the least bit suspect thrown out), plus the occasional biscuit or slice of rye bread. And as it happens, yesterday was my first unhealthy food day on T: well-done cheeseburger with sauteed onions and mushrooms. I'd been craving one for 3 weeks, but I didn't enjoy it at all, even though it tasted like a cheeseburger should taste. Probably shifted too far in the other direction. Oh, well.

Guess I'll know for future cycles that this is likely to happen.

Night night, all -- had good obs and hooked up to an 8-hour saline bag, so time for me to sleep.
Jay68
Community Champion

Re: June 2018 Chemo Starters

I just see you're suffering from diarrhea whilst on T - I too suffered with this on each of the 4 cycles of T - (I also had Herceptin and Pertuzumab) the H & P also caused severe wind - so with the whole concoction I did end up in A&E on my 1st cycle as I wanted to be sure it wasn't any kind of infection.  As I say, mine wasn't an infection and unfortunately it was the same for the final 3 cycles.

 

I can only suggest eating plain - unhealthy carbo foods.  Don't try anything healthy!  Drink plenty of water (awful as water tastes) - you need to keep your fluids up!  Also a little bit of flat cola is good - it's brilliant for replacing salts/sugars.  

 

Good luck and stay strong - it's horrid but it all goes back to normal once the chemo is done!  I finished chemo last August and now it's all just a horrid memory! xx

reddi
Member

Re: June 2018 Chemo Starters

Hurrah, Georgie! Those super-special antibiotics are amazing. Fingers crossed for your platelets.
Georgie Gee
Member

Re: June 2018 Chemo Starters

Hello all,

 

A mixed day here at the hospital! 

 

My antibiotics have ceased, as the infection is gone. 😍😍😍

 

Went for a chest scan today and they found a blood clot on my lungs. 😫

 

So in a nutshell, they will start blood thinning drugs later this evening, and test blood again tomorrow.  If the platelets are ok, I can go home 😃

 

All a bit of a whirlwind if I'm honest!!

 

chemo has been delayed for a week, which I am very pleased about..... I need to get my breath back!! 

 

Love to all! 

 

Georgie Gee ❤️

reddi
Member

Re: June 2018 Chemo Starters

Hospital sleepover for me! Right now to replenish fluids; still waiting on results of bloodwork. Hopefully, the bloods will show no infection, and I'll be home tomorrow.
LJ
Member

Re: June 2018 Chemo Starters

Oh Reddi, I'm so sorry to hear that!  Fingers crossed they sort you out quickly and don't invite you for a sleepover. 

 

I consider myself fortunate that despite the frequency of my bowel movements on T they in no way constitute diarrhoea otherwise I'd have barely been at home!

 

Day 14 of T2 here and mostly things are back to normal. Still can't digest plain water or hard salad veg, but otherwise ok. 

 

My big angst is my hair. It's become apparent that I've had a couple of cycles recently where the cold cap hasn't been fitted exactly and I'm getting some extreme thinning on the top of my head which is devastating me. Think old man combover.  Going to the hairdresser tomorrow and hope she can work some magic, but I'm preparing myself for a pixie cut. Ho hum. 

 

LJ

reddi
Member

Re: June 2018 Chemo Starters

Diarrhea. Now no. 7 of the day. Pretty much extreme end of Bristol Stool chart -- and as I haven't got an appetite, my lunch of arrowroot biscuits and Ryvita thins are not yet in the pipeline, so majority stomach acid right now.
cdc1811
Member

Re: June 2018 Chemo Starters

Sorry to hear that Reddi. What’s up? Xxx
reddi
Member

Re: June 2018 Chemo Starters

No. 5 is the charm. Spending the afternoon at A&E.
ktk
Member

Re: June 2018 Chemo Starters

My chemo nurse said that my diarrhoea last time was due to constipation backup, but I knew it wasn’t. She then told me off for not ringing the hotline! Hope you are ok. Kx
reddi
Member

Re: June 2018 Chemo Starters

For anyone wanting a 💕 shaped pillow, there is a lovely group called Jen's Friends that will provide them for the cost of postage. You can request a pillow or two via their Facebook page: https://www.facebook.com/jensfriendsmastectomypillow.

Mine are very pretty (no choice of color/pattern -- but they sent me a matched pair), and they have been a godsend post SLNB; I know I will use them.bunches post surgery.

Indeed, I'm using them.now to prop myself in bed, as I hydrate and await 4th bout of diarrhea this morning before calling chemo hotline. I feel like crap (pun wasn't intended, but there 'tis), but temp is 36.5 and there is a small chance it's the lactulose prescribed for my "constipation."
ktk
Member

Re: June 2018 Chemo Starters

Hi Kip I am feeling loads better. Got up , went shopping, made chicken noodle soup 😋, there! However, it is still a bit uncomfortable when I swallow and I can’t breathe deeply. And I have a bit of diarrhoea every day. ☹️

I was given a ❤️ Shaped pillow with the drain bags after surgery. It was really comfortable to put under my pit in bed. Interestingly, although I don’t think it applied pressure, the armpit scar is much neater and less visible than the breast ones.

Hope everyone is feeling ok today. Kxx
Kip
Community Champion
Community Champion

Re: June 2018 Chemo Starters

Hi Everyone, hope you are all hanging on in there.  

Shi - I love the thought of gold hot pants.. although don't think I would be rocking the look but the thought made me smile, and as for the music, thats just great!   I can't even manage to type a response without having to edit it 100 times, let alone upload anything!   You posts really do keep my going and all your little tips too.

CDC - Can't believe you are still having to chase ONCS and appointments too, how frustrating but enjoy that extra SE free week.  Hope you get it all sorted soon and can get the better hospital/ONCs etc.

KTK - how are you feeling now, any improvement with the swallowing?

Lisa Marie - hows things with you today?   Hows the arms/hands doing, my thumbs are so dry at the moment, need lots of moisturising but the arm is ok so far, no pain from the chemo as yet.

GeorgieGee - big hi to you, hope you are bearing up in the old hospital!

Embolorry - hows the tats?

Anyone else I've missed off the list... have a good day!


Day 3 of chemo and still feeling ok, tired as the steroids are playing their usual game, but now back to 4 a day for 3 days and then off them - hopefully for ever more!   I have the weirdest dreams when I do get a bit of sleep... last night dropped off then could see a large cruise ship (wishful thinking!) then it seemed like somebody called out "Jake".. which is weird because the only Jake I know is my old cat which died quite a few years ago.. freaked me out a bit and woke me up.. bloomin drugs.   Mouth still ok today, just had a call from my GP who was asking why the hospital didn't supply me with Fluconozole as their letter said they would be, I explained that had forgotten it and he didn't seem surprised but is sorting it today for me, he also recommended sucking on Vit C tabs (the fizzy ones you disolve in water) as they help cut through the lardie mouth feeling and help with the thrush/ulcers.

 

Meant to mention the other day... my surgeon told me a tip for post surgery healing and scars under armpit area.... she said roll up a clean pair of socks and keep them under your arm pit pressing down on the scar area as this helps with drainage and flattening the scar tissue too.. if you have a small Heart shape pillow you can use that and keep that pressed under the armpit area..  I have the pillows but hadn't thought about the socks, so might try that after node clearance.  I wish all the professionals gave the same advice, I get different things everytime. 

 

Love

Kip

xx

 

 

 

Shi
Community Champion
Community Champion

Re: June 2018 Chemo Starters

CDC 😘😘A’s is oct17 ladies said to each other, we’ve got hold of each other’s gold hot pants on here as we were spinning around on chemo 💃🏻💃🏻🕺🕺💃🏻💃🏻💃🏻We were a proper dancing thread and had a tune a day that do Karana used to upload 🤣😂🤣😂🤣and by the 6th one it felt like we were doing the double Dutch like in the Malcolm mcclaren video, you just gotta keep going 💪💪💪💪you are all strong and amazing, keep focused 😘😘💕💕Shi xx
Shi
Community Champion
Community Champion

Re: June 2018 Chemo Starters

Sue, I’ve answered you on July thread 💕💕Shi xx
SB1610
Member

Re: June 2018 Chemo Starters

Hello ladies

Does anyone have any tips on what I can use on my scalp - it's quite dry at the moment. Wasn't sure if to use face moisturiser or body moisturiser or if there is something out there more suitable? I've read about olive oil or almond oil - has anyone else used either of these?

Thanks in anticipation,

Sue
SB1610
Member

Re: June 2018 Chemo Starters

 
cdc1811
Member

Re: June 2018 Chemo Starters

Oh no Georgie G. You poor thing. So sorry you’re going have to stay in for a while but as others have said, thank goodness the medical team now know what they are dealing with and you are receiving the appropriate drugs. Hope you’re on the mend very, very soon xxx

Sorry you’re still having to chase things up Kip. We could all certainly do without the added hassle of having to do the leg work when things aren’t as organised as they should be. I’ve heard nothing with regards to trying to change the day of my onc appointments and chemo. I’m starting to wonder if my BCN is ignoring me! Sure she’s just busy but I just want to get on with my new chemo regimen. I have heard more good things with regards to the surgical team at the Royal Marsden so will definitely be asking my GP to send them an e-referral. Interesting to hear about the nails. Mine are currently hidden under dark navy nail polish so not sure what’s going on underneath.
I hope you manage to get some sleep tonight

Reddi thanks so much for sharing your experiences. I really appreciate your honesty. It was very moving to read. It’s also helpful to be reminded that children can be remarkably resilient. B****y BC will not break our bonds and may even make them stronger.

Em I’m full of admiration for you going through this as a single parent, such incredible strength and determination, I hope you are feeling a bit brighter today. The fatigue is something else isn’t it? Also the accompanying aches and pains. Hope the tattooing went ok. Is it just a small dot so they can line up the machine? I think my Mum mentioned something about it when she had her radiotherapy last year.

Ktk Definitely sounds as though the docetaxel isn’t agreeing with you. Not surprised you’re feeling sorry for yourself. Not being able to swallow without pain is horrible. Did you manage some soup? Did you ring the hotline? Hope you can get something to help with the SEs.

Really lovely your friend is holding a MacMillan coffee morning in your honour Lisa Marie. I’m sure it will be a lovely event. You’ll have to post some photos of you in your pink wig! I remember Stephanie from Lazy town too.

Shi you are always so positive and encouraging, love seeing your posts and you are an expert in Emojiis!!

I’m doing ok. Thoroughly fed up that I won’t finish chemo till December now but I’m looking forward to next week. I would have been having my 2nd docetaxel but I get a week free of anything before I start on the new drug so I’m hoping to feel completely SE free for a bit. My feet are so much better but my hands keep turning bright red and they are throbbing a bit at the momentt Not sure how I’m meant to‘avoid using utensils’ as is suggested. It’s pretty impossible in day to day life!

Sally how are you?

Take Care everyone. Sending hugs to all xxx
Kip
Community Champion
Community Champion

Re: June 2018 Chemo Starters

OH dear Georgie, but at least you know what it is.  Isolation room was better than ward I found though and had own bathroom.   My antibiotics were pumped in by the nurses too, every 4 hours although they couldn;t find an infection!  Did have a bad mouth/throat though.

Take care, I'm sure once the antib's get in the system you'll be home before you know it.  Get some good books brought in.  Do your visitors have to wear aprons and gloves now too?  Mine did, so funny watching them threw the door trying to pot on an apron, they always seemd to get them on unfolded.. Although my OH and kids didn;t have to wear any gloves or apron as they "had come from my home environment" which I couldn't understand as they had walked through a car park and through a bloomin' hospital to get to me!  Weird.

Take care

Kip

xx

reddi
Member

Re: June 2018 Chemo Starters

@Georgie Oh, no, the dreaded MRSA. Not a happy bunny at all. I hope the MRSA gets knocked out by your new super-special antibiotics. Thinking of you.

Kip
Community Champion
Community Champion

Re: June 2018 Chemo Starters

Wow Reddi, I have the white lines without ridges and now know the names... you are so informative about all this stuff!   It is incredible to have a visual guide as to how much chemo is going in isn't it, its my new thing to bore my family with.. after the fluffy head hair that is.  Is anyone developing fluff on their face too.. not a good look but I think I read it does go eventually, I just don't want it giving my head hair a run for its money or I could be joining the Greatest Showman!

KTK - you sound so like me, I put off ringing the hotline in the fear they'll call me in, then when I do ring I usually feel so much relief I wish I'd done it sooner.. apart from the time they took me in.. grrrr!

Lisa Marie - the Macmillan coffee evening sounds fab, my niece did one for me at the pub she works at, felt so honoured bless her!  Enjoy that little bit of Rose, why not, as you said we deserve to enjoy the little things in life!   I do think you are making the right decision to leave those big things to after treatment and then address them, too much to decide right now, need to get yourself feeling better, think of the wedding and then decide.  And bought a tear to my eye to read about your stepchildren, they are very lucky to have you by the sounds of things!  And as for giving OH and out... very brave too but I get that as well!  

T 3 is ok so far, only day 2 though so usually get the tongue going awol about Friday, have just had to ring the GP to request Fluconazole as they forgot to give it to me at the hospital, I did ask and she said I would have it but then it didn't turn up!  I like to have "just in case" and started taking it as soon as the tongue got furry last time and it didn't last half as long and no ulcers etc so daren't risk not having in the house.

Also got to chase the ONC nurse again as they want to get my planning for RADS rolling so that these happen as soon as possible after surgery to try to ensure I can get it all done without Xmas getting in the middle... was told to ask at chemo but the nurses said they couldn't do anything about it.. so more chasing around today I think.

GeorgieGee - hope you are feeling ok today and may be getting out soon?  

CDC - how are you feeling today?

And anyone else I've forgotten.. have a good day, be strong.. big hugs...

Kip

xx

Georgie Gee
Member

Re: June 2018 Chemo Starters

Morning all,

 

The doctors came to my bedside with aprons on yesterday and told me that the mystery blood causing the query, has tested positive for MRSA.

 

This is of course means that for the moment at least, I need to settle in and call my isolation room home.

I was really tearful yesterday but coming coming to terms with it today. The antibiotics for the sepsis were not covering the MRSA, hence the extra one, which is pumped in IV by the nurses once a day, like some of the chemo drugs are. They think it may be in my mouth / throat / downwards.... may have some tests.

 

Georgie Gee is not a happy bunny 😷

reddi
Member

Re: June 2018 Chemo Starters

Y'all are so lovely. But I'm not brave to share -- it's just my life. My hesitation about sharing was my uncertainty about whether sharing would give a little bit of comfort and ease -- or instead set off different emotions. Comfort and ease were my intention, but human emotions aren't entirely predictable.

@Kip I have the lines on my nails starting from FEC. A friend whose father had chemo mentioned that he'd had them, so I have been on the lookout. I believe mine are Mees lines -- white bands without apparent ridges; Beau lines have ridges, too. I find them fascinating, a little badge of what my body's going through, and one far more decorative than my pale scalp!

ktk
Member

Re: June 2018 Chemo Starters

Thanks Lisa. Feeling better today so I think I’ll have a go at the soup. Said to OH last night that I would ring chemo unit today, which is a guaranteed cure. Really should have rung on Sunday but was scared they would tell me to come in!! It sounds like your OH and stepchildren love you very much. How lucky are you to have them in your life!! Kxx
RedRose
Member

Re: June 2018 Chemo Starters

On a good note though, one of my gorgeous friends has decided to hold a Macmillan coffee evening in my honor, so will be 🤞🏻 off for a night surrounded by my friends and loved ones on Saturday if feeling ok. Coffee evening, I hear you say 🤔. Well, I doubt there will be much coffee ️ more like wine 🍷 beer 🍻 🍰 for them and tea for me (may be a small rose 🍷) we quite often have family days/nights where we all get together but they have been neglected as of late. I really looking forward to good company and some laughter. Might even wear my pink wig that I brought for October breast cancer awareness, although I think I may look like Stephanie off Lazy Town 👩🏻‍🎤. Xx
RedRose
Member

Re: June 2018 Chemo Starters

Kip, how you doing after your final T? Did you do a dace and breathe a sigh oh relief (just for that moment that that part of the journey is done) hope the s/e are manageable and you pick up soon 😘 thinking of you. KTK, I have the tablet stuck in throat feeling, and heartburn too. Feels sort of like a big burp wanting to release but doesn’t go away and the first mouthful of anything is usually sore even water. Had it on T1 too but more pronounced on T2. Warm liquid to sooth feels best for me, and saucy stuff. Gagging on anything too dry. My staple atm chicken noodle soup 🍜, can taste the flavor 🤗 and it help my throat. https://www.google.co.uk/amp/s/www.bbcgoodfood.com/recipes/1869/chicken-noodle-soup%3famp
RedRose
Member

Re: June 2018 Chemo Starters

Morning all. Insomnia is back with a vengeance over last few nights. Embolorry, I know what you mean with the fog, my head is fuzzy, feels like not really here but going through actions and so so tired even doing the slightest of things. Body aches and just listless. How did the tattoo’s go? I have none and my rads ones will be my first. Dots weren’t exactly my first choice, would prefer a rose 🌹. Keep asking the O/H and he says you will be fine. Reddi, thank you so much for sharing your story, although the children aren’t biologically mine and we only have them at weekends I still worry on their experience of all this. They love me and I know it but I feel guilty exposing them to this and bringing it into their lives. And yes I know I didn’t ask for it either and through choice would have passed on the whole experience. Sounds horrendous but I have to admit that have in my moments told the other half he has an out, that he and the kids don’t have to go through this 😢 he says they do and he has no choice as he belongs by my side. Wouldn’t want him anywhere else but have to give him the option to protect himself and the kids. Does that make sense? Thank for the comfort in the decisions front, I just feel after the rollercoaster since March I can’t rush into anything mentally, as treatment and shock still clouds my judgement. God knows we have all here had so many ups and downs that we need to cling onto and damn well enjoy the positives. The little things and the big things, the cake, the ice cream, the cuddles, the kisses, the love and feeling loved. The joys of being human. The hand is better than it was still swollen and cracked and a little tingly, chemo bruise still there. Moisturiser on tap for it massaging in throughout the day. Everything feels so dry. Georgie, I hope you are doing better my lovely, and will be let out soon to enjoy your home comforts. Unusual blood work does sound scary, fingers crossed 🤞🏻 for you xx
Kip
Community Champion
Community Champion

Re: June 2018 Chemo Starters

Oh Reddi thanks for that lovely post, uih have been through a lot haven't you, very brave to share it 

But thank you!  I have had a reduced dose of T today, the nurse said first dose of T is 100% strenght the .2nd is reduced anyway  so my 3rd may have been reduced slightlh more but still safe as they have a scale of stength to keep in-between.  I didnt get to see anyone though they did look at myfinger nails and said the white lines i  have on them represent each cycle so should end up with three!  

KTK the full dose could be why the T has hit you hard?

Feel relieved that chemo is done but strangely apprehensive that  its over and on to the next bit, i guess i felt safe being blasted now got to hope the body behaves!  

Had a sleep deprived sleep last night due to steroids so not looking forward to another one tonight.. heh ho might get up and do the ironing...

Kip

Shi
Community Champion
Community Champion

Re: June 2018 Chemo Starters

Reddi ❤️❤️❤️ You’ve written from your heart 😘😘😘just beautiful like you ❤️❤️❤️💕💕Shi xx
Embolorry
Member

Re: June 2018 Chemo Starters

Hi all,
Sorry I have been so quiet.
Had last T last week and so feel like I am coming out of the fog a bit now. Mouth feels rubbish and definite aches and pains but the biggest thing seems to be tiredness (I feel exhausted by everything at the moment).
Currently waiting for CT scan and will be tattooed later today and then rads start on October 9th. Feels like I am on a run away train that just doesn’t stop!!!
Reddi - thanks for sharing your story of your mum, you’re right about being strong and resilient (both us and our children). Mine are only 6 and 8, and being a single parent I worry about how much we are all holding in to protect each other (or maybe I am thinking too much!).
Anyway sending hugs to you all, esp Georgie, hope you get out soon,
Hugs,
Em
Xxxx
reddi
Member

Re: June 2018 Chemo Starters

@Lisa Marie I've only now caught up with your hand/fingers and big decisions posts. Have the issues with your fingers and hand cleared up? It's good that the oncologist is watching them, but do keep an eye on them, just in case; it sounds a bit (the blister/red mark, especially) like the plantar-palmar syndrome that @cdc is struggling with. 

 

And it sounds like you are making exactly the right decision about the big decisions -- there's no need to rush into decisions now, while you're still in the midst of treatment and, more importantly, planning your wedding! Take time off, take time to celebrate the wedding, then take time to think and make these decisions. The decisions will wait for you. And seems to me your head's in the right position -- it knows what you need right now! As Shi said, you're in control. 

ktk
Member

Re: June 2018 Chemo Starters

Hi Reddi, thanks for sharing your experience with us. What an amazing story. Kxxx
reddi
Member

Re: June 2018 Chemo Starters

@ktk I think the tattoos are pretty small and quick -- but what do I know? I'm still a couple months away from my rads planning meeting. Report back!

 

I'm also not loving the docetaxol. Starting to feel less fatigued (I forced myself out for a walk yesterday, which  helped), but the aches and pains are still around, and swallowing is uncomfortable for me, too. I need to up my water due to the hemorrhoids, and I found warm water is easier on the throat than cold/room temp. 

reddi
Member

Re: June 2018 Chemo Starters

@Kip Good luck today. Given that it's already midday, you may already have had a chance to talk with the folks in your unit about dose level and your thumb -- but if not, do insist on finding out how they're considering that symptom in choosing your dose today. (I usually don't learn in my meeting with my oncologist if they're lowering my dose, as my blood results typically aren't yet ready, but even this last time I only heard my T was lower than the usual dose 1 from my chemo nurse, so they might be making decisions in the background.)

 

@Georgie Thank goodness you're in the hospital. An unusual infection in the blood sounds quite special --  but also a bit scary. Take care and get some good rest. And keep trying to find whatever humor you can in the fact that  you're more an expert than the junior doc! Like Kip, one junior doc I saw -- during my isolation stay in cycle 1 --  struggled mightily doing a blood draw. Suggested on the spot that I get a PICC line, when everybody else kept telling me to wait for a PICC until it became necessary. Still don't have one, and no one else seems to struggle with my veins. Vaseline on your mouth sores! Wow.

 

To all the parents: I don't myself have children, but my mother had sudden onset of a serious muscular dystrophy when I was 18 and my sister was 13. One day (an Easter Sunday) she went into respiratory and cardiac arrest. Thankfully, she knew her body was surrendering to some sort of shock, as her severe headaches had morphed overnight into blurred vision and bodywide edema, and had my dad drive her to the A&E (American: ER) just in time to ensure she got life-saving assistance. Initially, she was in a coma-like state, but after 3 weeks, she was alert. She's been on a ventilator since then (1990), and has required a motorized wheelchair for the past 15 years or so. 

 

It was scary, but it also forged my sister and me, in ways that I think have made us stronger people. My mom has been resilient throughout -- amazing us with her strength, but also never pretending that it was easy or no big deal. I see that resilience and strength in all of you posting in the forums. Every single one of you. And your children are resilient, too. They know you didn't choose to be ill. They will be scared, and they will worry, and at times they might get angry -- at life, at the situation, at you (what kids, especially teens, don't?). Sometimes they might keep these feelings to themselves, hoping not to worry you or embarrass themselves; sometimes they will share their fears or anger with others, and you might wonder, Why aren't they sharing with me? But they will love you and learn from you. Learn a lot. And they will thank you for taking care of yourself as well as taking care of them. That's my experience, anyway. (And the experience of others who have shared having a similar medical event in their life.) 

 

Hmmm. Not sure if I should post this, but... Here goes.

ktk
Member

Re: June 2018 Chemo Starters

Hi Kip. Good luck with your last chemo whoop whoop!! I hope it goes well with limited SEs. I must say Docetaxol doesn’t suit me. I feel decidedly under the weather. I have a constant headache and I haven’t been drinking much because it hurts so much to swallow!!! At least I’ve not had constipation this round but borderline diarrhoea (not as bad as last time) and some bleeding. I’ve barely left the house and, now the children have gone, I am holed up in bed! I guess I am feeling a bit sorry for myself, which really isn’t like me! Anyway I have plans for later this week meeting friends, dinner etc., and I have my rads planning meeting on Friday. Tattoos?! Really! ☹️ Moan over!! Kxx
Kip
Community Champion
Community Champion

Re: June 2018 Chemo Starters

Hi Georgie Gee - sorry to hear you are still in hospital.  Junior Docs are a nightmare aren't they... mine couldn't get any blood out on numerous attempts and ended up using my foot with much pain!   The nurse came along and could use my hand no problem.  And as for vaseline!!!  What????  When i was in I had terrible ulcers, sore mouth which was swollen and I kept bitting the insides and sore throat.  I had fluroxin (think thats how you spell it) in tablet form to take everyday and I now get it with my chemo meds to. this helps thrush.  Last cycle I took it as soon as the mouth started to feel sore and it didn't get any wore.  I also had nystatin on perscription which you drop on your tongue and swallow, plus used Iglu for the mouth ulcers and bonjela and regularly salt mouth rinses too.   On cycle 2 i made up a bottle of salt water and rinsed after every meal and that helped too and paracetomal helped with the sore throat as well.  BUT i never used vaseline!!!   Hope you find something that helps and that you escape the hospital too, I had my own room but it still wasn't quiet and those lights.... grrrrr...

KTK - I have heard of several people having problems with swallowing and I think its a SE, might be worth a call to chemo line,  probably is indigestion? 

 

CDC, KTK, and anyone else out there with kids... that guilt over being ill is sooo hard isn't it.   Lovely that your son had a cuddle KTK, they are never too old.. I definatley find my 16yrs old son is so much more affectionate than my 13yrd old daughter... shes very feisty at the moment and keeps out of our way a lot.. but I think some of that is worry.. she is still have weekly meetings with her head of year to talk over any worries and she has asked me to explain what is happening next so that she can tell her teacher so I guess she is thinking and worrying even though she says she isn't.   CDC your little one is still a bit younger than mine but girls do seem to be different.. well in my experience anyway but my son has always loved a cuddle.. he still climbs on my lap at times.. just to annoy me mostly as he sits there and rubs my stubbly head and laughs at it.

Well now preparing for Chemo 6.. the last one.. fingers crossed.  Haven't heard a peep about my numb thumb which is so annoying so will hopefully find something out at chemo today as to whether they are lowering the dose, just hope it doesn't delay things.  CDC hope you get your next ones altered to more suitable days and with the ONC you like!

 

Take care all.

Shi
Community Champion
Community Champion

Re: June 2018 Chemo Starters

Georgie gee 👭👭👭good news your neutrophils are on the rise and here is the good blood dance 🕺🕺💃🏻💃🏻💃🏻🕺🕺💃🏻💃🏻💃🏻💃🏻That the may17 ladies did for us all when having a stint in casa nhs, it does work so double 💃🏻💃🏻🕺🕺🕺💃🏻💃🏻💃🏻🕺🕺🕺good bloods dance for you so we get you home safe and sound soon. Vaseline 😳😳😳that’s a new one on me but they are the experts so worth a try, anything worth a try to get you home, make sure you advise them you can’t open your mouth and if you are having any difficulty eating or drinking you need to keep strength up and hydrated. Google Bristol stool cakes, it’ll give you a laugh at the ideas that some come up with and you’ll never love ok at Bristol stool chart in the hospital loo the same again 😂🤣😂🤣you’ll see flakes and mars bars, chocolate raisins and all sorts 🤣😂🤣😂❤️❤️❤️❤️💪💪💪💪💪keep strong and positive darling, you’ll soon be home 😘😘😘💕💕💕Shi xx
Georgie Gee
Member

Re: June 2018 Chemo Starters

Hello from hospital, night 3 😐

 

And thank you all for kind words and wishes. 

 

I'm in a quiet ward, which is a nice little extra, but no nearer to the exit route.  

Still having IV antibiotics for sepsis, but today was hunted down by the blood labs, as I have something 'unusual' 🙄 (trust me!!) growing in my blood from Friday night.  

 

So had another load of bloods taken today, and I'm sure the junior doctor was young enough to be still wearing his school trousers..... he asked ME what I thought my swollen mouth and tongue would benefit from.  I actually cannot open my mouth wide enough to say the obligatory 'aaaah'.  I said, 'well hopefully something to soothe the swelling and pain'.   He actually suggested Vaseline 😳.   I mean 😳😳😳!!

 

My neutrophils have risen, but they have added another IV antibiotic to the mix now, and are saying this may need to be given for another 10 - 12 days, depending on the result of the wierd blood tests.  So it's mouthwash, earplugs, sleep hat drawn downward to shut out the hospital lights (good tip, that one.....😜) and hopefully some answers in the morning.  

 

Night night, and don't forget to put your Vaseline on your sore mouths...... 

 

Georgie Gee x 

 

LJ
Member

Re: June 2018 Chemo Starters

@KTK - I have had similar sensations which I put down to indigestion. I found it particularly bad when drinking plain water and salad type foods. So I've added a little squash to the water and am avoiding hard salad vegetables and that's keeping it at bay. (And stopping me burping 🙄😂)  I mentioned it when I saw the oncologist after T1 and she didn't seem unduly alarmed.  I'd give your unit a call if it's still painful and see what they have to say. 

 

LJ

ktk
Member

Re: June 2018 Chemo Starters

Just wondering if anyone else has had pain when they swallow. It is a bit like when you take a tablet and it gets stuck half way down. I’ve had this for two days now and it is extremely painful. Any thoughts? Kxx