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
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?
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
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 ❤️
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.
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 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.
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.
@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.
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...
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 😷
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!
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...
@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 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.
@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.
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.
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
@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.