Thanks for the update on T side effects. Good to know they just last a few days. Until now I've been able to feel the effects of chemo doing it's job by shrinking Gremlim. I won't have that point of reference after surgery. Take care xx xx Susie
On the plus side, I am now one week post my first T and like you, Rosina, the aches and pains seem to have gone away. They were ok yesterday too. So yes it was days 4 and 5 that were bad for that. Or 3 and 4. Depending on where you start counting
In other words I had T tuesday and the pains kicked in Friday evening and throughout to Sunday morning.
Sunday I didn't have leg pains so much as really bad back pains but I put that that down to 9 hours sat on the world's most uncomfortable chair in the hospital waiting room more than T
I honestly think if I had just stayed at home Sunday and waited another hour for my temp to go down , i could have avoided this whole hospital fiasco and would be absolutely fine by now. Given that my only symptom is the one caused by the antibiotics....
But I guess you have to err on the safe side.....
It reminds me of all those stories where people get locked up in mental institutions by mistake but end up there for their whole lives because the docs keep finding some tiny reason to keep them there. But maybe that's just me being a drama queen
Oh Implausible that really is the Barrying pits. Having the runs is a common side effect of antibiotics. You'd have thought if your temp is normal that would indicate that you are no longer fighting an infection. I'd want to get home too. Sending you hugs❤❤❤❤❤❤.xxx
Oh I'm fine for entertainment. I listened to a podcast last night and have my iPad and a good book. Don't worry.
I am just a bit fed up as have essentially felt completely fine healthwise since yesterday morning, my temp is fine, my neutrophils are fine, but they just don't seem to like letting you go once they have hold of you....
Feeling for you Sarah,
I do hope they let you go.
PS can you listen to podcasts to take your mind off things?
I'm beginning to think I am never getting out of this place.
Woke up, felt fine, they did my obs, temp still down, all good.
Then I got caught short on the way to the loo and had a (minor, but enough to need me to change my jama bottoms! Sorry, TMI) accident, because antibiotics ALWAYS give me the runs and I told them that from the get go.
And apparently that sets me back to the start of my "24 hours symptom free" clock . Sigh.
Going to try to talk sense to the doc as this isnt a symptom of infection.... it's a symptom of the medicine they have been dripping into me non stop!
I just want to be at home where I have easy access to my en suite loo, my shower and changes of clothing!
Morning Susie B
I have woken up and all the aches have gone away. Yeah ! This is Day 5 after receiving my T dose. Day 4 was my worst but maybe I overdid things ( What with the yoga day on Day 3 ?) .
Its as if I had to wear full body armour to walk around for 24 hours and today the armour has come off.
A friend ( ex nurse) said think of all the ‘bad stuff ‘ the drug was killing. I also kept hydrated.
I don't like the sound of T at all😝. After surgery I'll have 4 rounds of the stuff together with C. Please tell me it gets better after each round. I live in hope. Good night all🌕🌖🌗🌗🛌🏾🛌🏾xx
Sarah, let us know asap what did they see in the bloods.
Rest a bit, a nap sounds good.
So sorry for all this mess honey
Sonia28, you poor thing. It does sound like oral thrush. As you have an itchy rash on your neck as well, do you think it would be a good idea to ring your helpline number and see what they say? Xxx
Super quick update as I am so so tired and am going to have a nap
In short, still here, temp was ok, neutrophils back up to 2.7, but something else in the bloods (CRP) worried them so they want to keep me till tomorrow
At least I have a proper bed this time
Catch you tomorrow
Talk about brain fuzz, I send families all the time to nhs choices didn’t even think to look there today, I’m now sporting a lovely rash around my neck that’s driving me crazy itching. I’m with you Deano, not liking T now ,but hey only 2 more to go 🎉🎉🎉
When I had a sore throat first FEC the dr said I’d have had spots on my throat with thrush as well as a white tongue. I’d been using the bicarb a lot so mine didn’t look too bad. Must remember to use some of my heavy duty mouthwash later to try and give my tastebuds a boost!
Aches have gone away at the moment. Don’t feel too tired either. Watching Game of Thrones with husband (well he’s watching I’m not so fussed). Made a tomato bean and leek casserole with eggs and totally over cooked it as I didn’t want to risk runny eggs and the toast took forever. Tasted odd at the start odd at the end and ok in between!
Apple crumble courtesy of the neighbours shortly. Should feel better but just a bit fed up really. Just hope I sleep later
Hi Sonia 28
If you have oral thrush they will probably prescribe Nystan liquid. It's very effective and does help the whole gut as it goes through. X
Thanks for the encouragement daisydi. I've just got to remember that, like with chemo, my body needed the extra help to shrink Gremlim and it will now need help from a surgeon to get rid of Gremlim and his relatives in my lymph nodes. xxxx
Just looked on the NHS choices website and it certainly seems as though you've got oral thrush☹. They've got some lovely photos if you want to check it out. Hope you can get it sorted soon. This chemo just keeps on giving. xxx
I am in the fed up club too lots of aches and pains but I agree not enough to take pain killers - my tongue and throat is sore no tastebuds either. I managed a walk this morning and nothing eases the aches but determined not to take owt until I need to. Anyone got blurry vision it comes and goes I am hopeful for a better day tomorrow with the lovely T - used to like T not anymore
Another day over ladies gets to tomorrow ❤️❤️
Yes Sarah the bloodcount gods won but the unit is so hectic esp on a Monday that it wouldnt surprise me if they have forgotten. My day got changed this week due to staff shortage. Will see tomorrow. How are you feeling?
Sonia I thought with thrush you get white spots. Try the mouthwash and/or salt water but prob best to ring the team. I do remember having it before but I cant remember how I got rid of it. I have had a slimy tongue for weeks with little ulcers but Im not sure that it was thrush. Sorry not much help. Ring your gp surgery. They would know
Before I read all this afternoon's and evening threads just a quick update after my scan earlier. Gremlin has definitely shrunk even more🐉😊 since my last scan and the lymph nodes aren't as swollen☺. Now have to wait for appointment to come through to see the surgeon☹.
I’ll give them a call in the morning. I think if I’m honest I know it’s thrush but wasn’t sure if everyone else tongue had gone white. I’ve been using the mouth wash and cleaning my teeth with the bicarbonate toothpaste, lots as I have no taste buds at all.
Sonia sorry I don't know much about thrush of the tongue but I would imagine it would be quite sore? Does it hurt?
Probably worth a call to your onco nurse....
Okay ladies, need advice. I know our tongues get affected with chemo but I’m not sure if I have thrush.
It is pretty much white all over even after cleaning it with my tooth brush xx
Best of luck for tomorrow Daisydi , looks like the bloodcount gods made their decision. Hopefully it will all go super smoothly and then you will be glad you didn't end up with an unnecessary delay x
Okay ladies, need advice. I know our tongues get affected with chemo but I’m not sure if I have thrush.
It is pretty much white all over even after cleaning it with my tooth brush xx
Good luck Daisy!
My aches have definitely subsided significantly today. I walked round to Morrisons and my legs had no strength but no aches either. I had little motivation for work so I only did about 2.5 hours but that’s ok for the first day and I can probably claim a decent amount when I meet my boss Wednesday plus I’ve taken Friday off. So I don’t feel so bad.
Hoping with less aches I sleep better but I just find I wake in the night and then can’t get back off. I never used to be like this used to sleep soundly any time any place. Only in the last year maybe have I been like this? Doesn’t seem to matter whether I’m sleeping on my own or not either. I know I need to try the yoga nidra but then I’m thinking but why didn’t I need that before? I guess things change when you get older. Or cancer.
Anyway I’m away to make dinner, hoping it tastes ok! Need to get the barrying injection out of the fridge too yippee
Yeh I know I want it over with but I dont want it either. Must admist these steroids are doing nothing for me other than making me go to the loo every 5 mins and turning my face greyer and my eyebags blacker. I look like a walking farting corpse!
Good luck Daisydi,
best to get it over with!
I am fed up with myself as the aches are all in the upper body so I keep thinking I should walk ( as a distraction) .
Hot chocolate has helped with my throat.
Everybody is telling me to rest.
Getting up now. I have had enough bed rest.
Actually I am between my bedroom and the living room. I suppose going up and down the stairs counts.
Not aching enough for painkillers ( so I haven’t taken anything) .
I am fed up with myself 🤪
Daisydi, Good luck tomorrow, you’ve got this, then it will be another one closer to the end 🎉🎉
Hi all Ive had no phone call so looks like its all systems go for my first T tomorrow. EEEEEEEEEEEEEEEK!!!!
Your fabric work is really beautiful. I hope you will be going home soon. I think you have been very tolerant about the issues of finding you a bed. I think I must have been a real pain in the you know where when I was in hospital.
Sorry those of you that started on T feel so crappy, I hope you feel better soon.
I went to the last of the Moving Forward sessions today it was fine. Will miss all the ladies from the group now. But my mission like all of you is to move forward. I am going through past Slimming World mags looking for recipe inspiration before I go shopping tomorrow. Hope I will have lost a bit of weight this week but I can't say my trousers feel any bigger.
I am keeping my fingers crossed 🤞 for you Sarah.
I am also making a mental note of what your nurse said:
“that first T, is the worst one. She says it knocks the body for 6. Apparently cycles 5 and 6 are slightly less horrid. Let's hold her to that!”
As I think that this is the hardest one for me.
I have just had a bit to eat ( fried plantain) on which I dolloped mango and passion fruit sauce ( don’t ask , I was hungry but couldn’t think of anything I wanted- this was H1’s idea) and I am back in bed.
I have had a short walk, my mouth continues to be sore and my shoulder blades are in some kind of pincer grip.
Marlyn, the only stretch I have done today is to stretch in my bed.
As promised/threatened, here are some of my attempts at fabric work.... I tend to combine painting with (not particularly good) embroidery or quilting....
So.... where do I start replying to everyone?
We were halfway through a conversation about car insurance I think.... but yes Trixielady I wouldn't worry about them bumping up your premium on renewal date. I know that when I informed them about my hysterectomy all they were interested in was me not driving for those 6 weeks. They didn't put my prices up next time around. If anything they should have given me a discount for the month and a half they didn't cover me!
But with the lumpetomy/chemo they didn't even ask me not to drive. Just said if my doc is happy they are.
Edinbird I really like that hairband! You have kept so much hair! I'm jealous it's great that you can cover up the thinner bits with something that just looks normal and not "cancery". None of us want the pity stares...
Congrats on Norwich and their promotion!
Rosina honestly, you are amazing! I can't believe you did all that walking and a whole yoga day even after the T aches and pains kicked in!!! They day they hit me I think I managed just under 2000 steps, and that was enough! You are a wonder woman
Sonia yes I had a sore throat kick in with the start of the T pains. I wasn't too worried about it as it seems a common symptom, but then I ended up in the hospital so maybe it was more of a worry than I thought??? It is still there but not too bad. Ignorable.
Hope you enjoyed the baby shower
Ocean, those embroidery and quilting photos are gorgeous! I have some far, far, far less good examples of my own which I'll share in a later post.
Your potential art and craft retreats sound great!
Sorry to hear you are feeling down. I've read that midway through chemo is often a real struggle point, it certainly has been for me. You've been through a lot but there is still as much still to come which feels like loads. Plus if you are changing regimes there is all new uncertainty about new side effects.
So sad about the robins nature is cruel!
Deano I have problems in week 1 with blurry eyesight too, on both FEC and T. Had to wear my driving glasses to see the telly which I don't usually have to do. Seems to improve as you move through the cycle though.
Sandra I have one immune boosting injection every cycle. I presume it is similar to filstagram but a different brand name. I was 7 hours late doing it this cycle as I totally forgot! Was supposed to do it at 1pm the day after my first T, but I did it at about 8pm instead. I wonder if that is what landed me up in hospital??
I won't be late next time that's for sure!
MBJ rock choir looks like so much fun! Like I said the other day when seaside signed up for something similar, I would love to do something like that but I am so tone deaf that I don't think they would have me unless it was just to stand at the back and occasionally bing the triangle.
Trixie you asked about ongoing treatment. I have 2 more T to go, then a month of radio. And then after that, I also have more surgery, to remove the port a cath and even up my left booby
Susie B I hope your ultrasound went well. That cold gel makes me jump every time
Daisydi how did your bloods go? I can understand you half hoping for a reprieve week. But on the other hand we just all want it over with ASAP. It's a tricky call. Leave the decision it in the hands of the blood count gods I guess!
Seaside, sorry you are having a rotten time I just had a chat with one of the oncology nurses here and she said that the 4th cycle of FEC-T, that first T, is the worst one. She says it knocks the body for 6. Apparently cycles 5 and 6 are slightly less horrid. Let's hold her to that!
In other news, just after I posted about how nice and comfortable I was in my little side room, they kicked me back out into the waiting room. So now I'm back sitting up in a chair with my back killing they are at least now allowing me paracetamol which helps a bit.
Also they apparently managed to get a neutrophils score from the tiny bit of blood they squeezed out of me yesterday with a pin prick test. I got 2.2 which means I'm just above neutropenic. Good news but also bad news as apparently if I had scored lower they would find me a proper room. Sods law.
On the plus side, after a doc telling me earlier that I definitely had another night in here to look forward to, an oncology nurse has just visited and said that she is happy for me to go home this evening after a 4th antibiotics drip , if I still seem well and not overheated by that point.
Keep your fingers crossed for me!
PS Marlyn, thanks for making me smile with your vivid stretching description
It certainly wasn't a pretty sight I can tell you! Throw in the bald head too.....eek!! Also, I really can't believe how bloody difficult it is to get up off the floor....that was a cardio work out!
Yes, the forum sent me back a week too, odd...
edinbird, I've just had to force myself to go on a very short walk ( 5 mins) iv been sat on the couch watching homes under the hammer....a bit of Kyle and generally flicking through my iPad, then I had a light bulb moment and went to YouTube to look up " stretches for beginners " ( well...how hard can it be) after huffing puffing and farting ( hubby calling out....you ok in there)? I couldn't do a bloody single stretch without feeling like I was going to pass out! Hence the walk....oh well.....there's always tomorrow.....x
That’s odd I don’t have that...?!
Well hello to any new people!
Still losing the same amount of hair through washing a week after my first T... it’s not loads but I do start to wonder where it’s coming from! 🤷🏻♀️
Just sat on the bed bed thinking I ought to do something but can’t be bothered 😂
Has something odd happened to the feed in the last few minutes. It keeps sending me back to last week’s posts and there were lots of new names popping up! 🤔 x
Marlyn, you sound in good spirits today (even with a sore bottom). 🙌🏻. Seaside and Edinbird not so good for you I think. (((Hugs)))).
Implausible, keep getting the IV antibiotics in you. They seem to work quickly so I’m not surprised you are feeling better already. It will take a bit to recover from the trauma of yesterday though so don’t let anyone try and discharge you until you are ready.
MBJ your choir pic inspired me to see if there was something similar locally. There is, so may think about joining in the future when my energy levels allow.
Wishing all my lovelies well this week.
So pleased to read you're on the mend implausible, you gave us quite a fright! Fingers crossed you will be back home at some point today..I expect they need their staff room back now...
To everyone who is suffering I really feel for you, I'm relieved I don't have to go on T...at least I know what's coming with fec, there is a definite pattern to it....so far I am mostly getting blurry vision, sore bottom, dry mouth and vertigo.....so god only knows what delights T would have had for me????
To everyone going to chemo cocktail this week....good luck....not too long now before we're all gearing up to the final one....I think I may post my finale on that there face book, I haven't mentioned anything on Facebook but I do feel an urge to mark the occasion, my unit doesn't have a bell ( I would be ringing the hell out of it) sooooooo I might post something......
I hope all my beautiful sisters can have as good a day as possible......I love you all to Battersea and back!!! Xxxx
Positive T update... I’m sat on the sofa with no leg aches! Slight aching in my hips/pelvis which I put down to the injections.
Need to go have a shower and wash my hair and that’ll probably make me feel better still.
So hopefully that means the bad days last from end of steroids to a week past treatment day for us all. Still got a sore bottom but I don’t think that’s a concern for anyone else!
Logged on and sorted out emails and admin, that’s about half my working day done already as a short day when I come back each time.
Weather is more grey here at the moment unfortunately but I hope I can get out once my hair is dry. I don’t doubt I’ll still be more tired as I don’t feel quite myself. Mustn’t overdo it and no need to.
Hope everyone else is feeling ok today and good luck for those having stuff done, scheduled or otherwise! 😬🤗
I am feeling much much better thank you and quite happy in my little side room that they shoved me in in the middle of the night. Very peaceful in here!
I have books and my other half is en route with snacks, so all is good.
I was so out of it at points yesterday with the high temp and pain that I felt almost hallucinatory. It was rather scary!!! Today I feel totally normal. Touch wood.
No idea when i get to go home. They have given up even trying to get blood out of me.... but to be honest I am fine holed up in here for a while, I am sure they will get fed up eventually of me taking up space and let me go ...
Now to catch up on everyone else's posts!!!
I have gone back to bed too.
Late breakfast of hot cross buns and coffee.
Peace and quiet.
My only plan to walk later.