Good evening everyone, sorry bit late to the party to add some support, hadn’t reset notifications on my new phone
So sorry to hear of everyone’s hurdles, it’s certainly not an easy ride is it? As we are all saying, so comforting we can share our moans and worries here.
@dragonfly2 and @letsdothis , its both horrible and frustrating having infection and rash worries especially causing delays. Is is sore for either of you?
I have had two infected cysts under my eye for a few days, but then felt fluey and had a temperature so the helpline sent me to the local A & E today. They were excellent about putting me in a room on my own and wearing masks, albeit the relatives room, but they were bursting at the seams with ambulances queuing outside. I was worried as I felt very shivery and sat on a chair for 2 hours before I got my bloods taken and that was only because my wife went and found somebody and explained I was potentially at risk. But what can you do when there are too many patients and not enough rooms or staff?! They were all so lovely despite clearly being very stressed.
I have high inflammatory markers so was given antibiotics and sent home and have to be in touch with my team in the morning to see if my 3rd EC cycle can go ahead on Thursday. Still feel rubbish tonight so taking paracetamol but keeping a close eye on my temperature.
Not a smooth road for us all.
Any tips for the sore mouth problem? I’m doing Difflam washes and salt ones in between and getting
Fluconazole but man the tongue ulcers aren’t great!
Thank you @Shi , found that fruit ones not great so might just go for just ice, even though it tastes like metal!! Is there anything you can apply to numb them?
Indigo, do check with your team if they can recommend or prescribe you something best to check with them so it’s safe to use alongside your chemo Shi xx
Im sorry you’ve had a rough time. How are you doing now?
Rash wise i called the helpline again and although I knew it wasn’t as bad as before i said it had worsened since I had chemo friday and so they have given me steroid cream to use, which is what i wanted. If it keeps it at bay then im happy and hopeful they wont cancel a chemo again. Doesnt bother me at all other than it being there!
I was advised to try corsodyl Mouthwash which i stsrted using twice daily before chemo started and ive been ok so far. I csn get on prescription but ive not yet as ive had no problems…yet.
Tomorrow im booked on the look good feel better workshop-anyone done that? Im hoping that will perk me up plus ive heard i might get a goodie bag!
@Shi , have checked re my mouth thank you, have to just do what I’m doing. Pharmacist says I can up Difflam to two hourly so trying that This chemo lark is just the gift the just keeps giving!
@letsdothis
So glad you got the cream you wanted. All these extras just get you down. Let’s hope it clears up quickly
I’m feeling better thanks but chemo has been cancelled for Thursday for a week. A bit relieved in a way as feel I need some recovery time. So we’re in the same boat, @dragonfly too. It’s weird getting delayed you want it but you don’t
How did the dressing changes go @dragonfly2?
@fimac1 and @daxiedragon9 hows things with you guys?
Tomorrows a new day, hope everyone has a better one
Hi @indigo2. I’m on day 4, so only meds I have now is injection. Managed to go to work today, did exercises and made tea….now exhausted. Friday was horrific, but ok since then, wondering if I am lucky or just not had any new side effects yet. Going for my wig appointment Thursday with daughter. I’m guessing there will be a mix tears and laughter….then lunch, if my appetite is back
Dressings were changed yesterday afternoon. They both look horrendous but thankfully no smell! The nurse has covered them with siver and then dressed. I’ve another appointment on Friday and by then the antibiotics should be doing their thing. So sorry for anyone whos treatment is delayed. I think a delay is quite normal amd we need to focus on counting treatment down rather than a fixed end date. Still badly fatigued and having 1-2 hrs catnap in the day and then in bed by 8.30pm.
3.5 hours sleep? What is that about? Went to bed, day 4 at 1030, didn’t switch off until 1130 (unusual) back up at 3am for toilet and still awake long day ahead at work on day 5 of 1st treatment. I did stupidly ask last night when anymore side effects kick in….probably the last dose of steroids?
It’s like it almost gives you a false sense of security in the first few days. I’m finding it helpful writing a diary of side effects, the days seems to be similar this time, well except the curveball of the eye cysts
Hope you have a lovely lunch and find a great wig!
@fimac1 that was my experience of the steroids two weeks ago. I was so tired I was convinced I’d bought steak and searched everywhere in the kitchen. - I don’t eat meat. Transpires I’d had a conversation about steak a few days before . I’m looking forward to Friday when I have the 2nd cycle and see what exciting side-effects come my way this time… suspect more if the same! Do have some sleeping tablets to mitigate the roid devoid sleep. May be worth exploring if your GP is amenable to prescribing some just for the steroid days. It’s exhausting not being able to sleep and means that our batteries are depleted before we start the day.
I spent the whole day in bed last week after waking with very unhappy insides. Took 4 Loperamide to stop it but felt shattered. Like you felt I’d wasted a day especially as it it was a lovely sunny day, could have tried to push myself but decided it was best to succumb and listen to my body, despite feeling that it’s let me down big time. The rest worked wonders and by Friday was more energised and feeling more myself. We just need to be kind to ourselves and imagine that if we were our best friends, what advice would we be giving. Likely to be allow yourself a day to rest, you’ve been through a lot. X
Mostly all good here - I’ve, dare I say it, felt a little more ‘normal’ the last couple of days. Had bloods today so, all being well with those, I’m due for my 2nd EC infusion on Friday. No new meds added in at my clinic appt today but she has suggested we slightly change the timings of my anti-sickness meds to avoid the nausea I had on the day of my first infusion.
In the weird limbo period now where I don’t know what to do with my hair…… have my wig consultation tomorrow. I’d planned to cut it short before starting chemo but didn’t get around to doing it. I’m now day 12 of my first infusion and not cold-capping so know the loss is inevitable but there always that little unrealistic ‘what if’ voice in the background to those who started earlier in January, when did you first start losing?
That’s a lovely way to put it. It’s true that’s exactly what I’d be saying to my best friend.
However, I suppose it’s natural to be thinking normally I’d be walking miles up the beach everyday with her.
I so feel I took life for granted. So many different emotions on this journey.
I have made an effort and attempted to shower, dust the bedroom and brush the dog (who is pint size) OH had to take over and I’m back on the sofa again, puggled.
Sooooo frustrating. Anyone else finding being floored hard to deal with?
Hi there
It’s so good to get normal days, even if you find later on you’re a bit tired. I seem to be exhausted just now.
I had reasonably short hair to start, I got it cut to about an inch or so to prepare. On day 16 I started to see it all over my T-shirts, then pillow, then 3 days later I had hair covered hands in the shower and hence the towel too which I hated, so I braved the shave. Now it still falls out like annoying bits on your collar after the hairdressers. It’s quite jabby lying on the pillow at night so I have found silk pillowcases and bamboo and silk bed hats have helped. Moo Goo Scalp shampoo and restore cream feels lovely too.
I get the impression from the threads that if you’re not cold capping it goes quite quickly? Anyone else?
Hope it’s not too traumatic for you, I feel it’s like another step, once it’s over and done with it’s not so bad… and we don’t have any choice!
Best wishes for you’re ongoing treatment.
I have round 2 of EC on Friday as well. Dressing change and bloods are tomorrow. I have also felt almost normal, with the odd twinges/tiredness moment the last couple of days. I was prescribed Nystatin for oral thrush at the weekend and have strange cracks in my tongue. I have a wig appointment on Thursday and friends on standby for a shave party when my hair starts falling out. Sounds like it could also be when the side effects are worst. I’m also hoping to go to a Tai Chi session on Thursday at my local cancer therapy support centre.
This chemo lark is just the gift the just keeps giving! 
long day ahead at work on day 5 of 1st treatment. I did stupidly ask last night when anymore side effects kick in….probably the last dose of steroids?
. I’m looking forward to Friday when I have the 2nd cycle and see what exciting side-effects come my way this time… suspect more if the same! Do have some sleeping tablets to mitigate the roid devoid sleep. May be worth exploring if your GP is amenable to prescribing some just for the steroid days. It’s exhausting not being able to sleep and means that our batteries are depleted before we start the day.
to those who started earlier in January, when did you first start losing?