Is The Family Upstairs the Lisa Jewell one?A lot of her newer ones are quite dark compared to her earlier books, but really good!
I’ve had the odd twinge around my lump too- fewer recently but definitely while I was on EC. And weirdly some days I feel some irritation under my armpit/ where my bra underwire sits, not sure if it’s because I’ve gained a bit of weight or if some days it’s more sensitive, as other days the same bra is absolutely fine.
I’m having a run of hot flushes lately which I assume are related to the Phesgo… when I’ve been busy/on my feet for a few minutes, and in the night too. The joy!
Hope you are feeling ok after the first EC. How often are you having it? I had a foggy few days then almost like clockwork on the Weds eve at the end of the first week, it would lift and I’d suddenly feel a boost in energy and clarity. Then rinse and repeat x 4. I knew not to work on any budgets for work until the fog lifted
Tough night last night woke up all swollen like post long plane journey, pain in joints and lymph nodes 3am. Called help line said to take loratidine which I did. Mildly help. Was able to go back to bed. Not a reaction. Could be steroids perhaps water retention… EC kills the divided cells.
Taste buds changed again trying to figure out what to eat. Don’t like apples nor bananas that were my saviour last round. Bummer. Trying oranges but i am put off by anything sweet. Salt stuff seems to be my friend. Hot flushes are present too. Nausea are massively intense and barely dissipating. Had GCSE injections and not looking for the kick in the bones, will take paracetamol and loratidine. Nothing else I can do, although this time no pressure to recover by next week. Fresh air seems to help and managed a shot walk round local park. Looking at nature and breathing fresh and people watching makes me forget slightly the chemo side effects and the solitude at home!
As for the book yes Lisa jewel. She’s upped the dark side From earlier books for sure which I found a bit wishy washy.
My eyes are really dry and sore, comes w the territory. Did you hear about Amazon prime introducing advertising? Really cross and fed up w these companies making money on our back !!! I got an email today saying I can pay extra for no ad. No thanks!
I have EC every 3 weeks good to know you get a breezer, when is your session mine is in Tuesday. When I seem to feel better post chemo, usually Friday, steroids withdrawal kick in and no e pain. Usually by Monday or Tuesday am better so looking forward to next week and trying to figure what I can eat in the meantime not put on weight yet, went the other way, but the break so will what happens on EC and back on steroids after 3 weeks break. Good luck everyone
Thanks. I’ll take a look. I’ve got ocufresh lubricating eye gel carbomer 0.2%
I normally use viscotears but they’re none in my areas… apparently there was a recall before Christmas
I use also warm eye mask and optase cleaning eye lid wipes and gel followed by hycosan eye drops.
Got an opticians appointment in 2 weeks I may get further guidance. I feel my vision changed since beginning Andi actually feel it’s improved. Could be the steroids or could am no longer on computer 8/10 h a day staring at screen
Boots did a good one from memory around £5 but not sure about a recall sorry, just sharing what helped some of us back in 2017 when we went through chemo, the 2017 early threads passed on their tips and tricks down the months so everything helped get us through Shi xx
Ohh I’m sorry you had a rough night, I hope last night was better?
My chemo is Thursdays, so currently on the train into London Bridge- I’m having treatment at Guy’s. Their cafe has the biggest croissants I’ve ever seen so that has become my Thursday treat- will almost miss it. Almost.
As you haven’t long finished Paclitaxel as I have, I’m wandering if your swelling and pain is related to that. I have struggled with swelling and pain since last infusion 14 December. I also have sore eyes, they are running so not dry but are really sore near the tear ducts.
I had Herceptin injection today and the nurse just said it can take a few weeks for the side effects to go. No suggestion of how to minimise
I slept 12 h falling asleep on the sofa but tg the bf called and I went to bed.
Missed my 8 o’clock alarm for meds but took them 11am as normal . EC seems the sleeping and nausea/ constipation chemo medicine! With a break from sleep at 3am seems to be where I talk to myself and then ask my body to go back to bed finally!!
My taste buds craves lemon, vinegar and everything tastes sweet even water I like ggs again boiled egg and had some avocado w lots of vinegar. I love the idea of a croissant but don’t think I would enjoy it now!!! Maybe next week xx
The nurse said it’s the steroids that made me swell up. I finished Abraxane on 12Dec but still was running in my body and pretty sure still is. Stay 6/8 weeks. My face is swollen drunk /puffy. Since I only took one dose of steroids 2mg I’ll do the same thing tomorrow which mean if I want to have a lie in I can
My eyes are just plain sore and I also think my vision changed. I don’t need my glasses to be on my phone or read, am short sighted with prisme in glasses in both eyes but it could be that I am not on computer as much for now and steroids mask everything…
I am not on herceptin so would know…I am on gscsf injection which create huge bone pain and I can feel it coming on so will make sure to take paracetamol and loratidine, and have a decent night sleep, not stay late catching up on the all the episodes of the traitors for example
Hi everyone
Anyone struggled with taste buds post EC chem treatment?
Everything tastes sweet. Even the water (resorted to add drops of fresh lemon juice)
Am craving vinegar and lemon juice. Literally just had a slice of lemon as a guilty pleasure treat mad . May be mouth thrush. Started taking mouthwash rinse seriously and doing it 3 times a day but literally back to square one on taste buds front.
Plain pasta w loads of salt seems to work. Am trying rice tonight which I may find too sweet I bet but pairing it with chorizo sausage which is salty so hopefully will work.
Breakfast is boiled egg w mayo. Don’t ask!
Am desperate to be eating fruits for fibre
@pinklilli3s have you managed to find something to eat? I think experimentation is the answer. I find things that helped in earlier cycles i just can’t face now. Hopefully you have found something to get you through. I got boiled sweets last time sherbet lemons were particularly good.
Hiya I started treatment on fluconazole for mouth thrush as it was really bad. It will take a couple of days. The water starts to taste metallic again so I guess it’s … Working?!
Anything sweet is out of the question and I hope chemo hasn’t ruined chocolate for me. Agree it changes all the time. Hope you’re doing ok?
Had half a steak for iron supply and few green beans at least, that’s all I could eat. Also making sure I have movicol as I find steak difficult to digest. Constipation is like a thieve lurking and waiting the first opportunity to creep up Partner got 2 really good tender pieces from Aldi for £5 which was a pretty good deal. I think over the next few days I should perk up.
Also looking at doing extra walks the weeks of being normal. Looking into borrow my doggy and have extra cuddles and walks from borrowing someone’s dog (officially and with owners permission!! ) xxx
@pinklilli3s send photos if you manage to borrow a dog. My partner and I dog sit twice per week. Best of both worlds. All the fun, none of the expense (well nearly none, the odd dog toy and treat slips through the net),
Well I have had a very mixed day. Had appointment with my oncologist. Seemingly a man with no humour and not much sympathy. Where does the nhs find these people? Maybe there is a special training course they put them on to break their humanity before releasing them on patients. He confirmed the last ultrasound couldn’t find any lump (hurrah); follow on treatments have few side effects (hurrah); but due to numbness in my leg he wants the picc line to stay in so phesgo can be intravenous rather than injection (so upsetting i cried all the way home); he doesn’t do any treatment after chemo until after surgery - apparently unlike other oncologists (WTF - why is he so special that my treatment should be different - I’d rather he had not told me that as it just worries me) and lastly the actual treatment post surgery is really variable so I still don’t have a clear idea of timeline but likely to include radiotherapy.
So tomorrow I will be putting a separate plea in with the nurses to take out the picc line and have the injection in my good leg. I cannot bear another nine months of low level pain, flushing and extra long intravenous meds. We’ll see if he’ll reconsider. So I am very up and down mentally today. Good news on the cancer, less good news on the treatment!
That’s amazing news and also strangely weird about no doing any treatment after post op.
Post chemo my breast consultant will take over for the op.
Radiotherapy I will be moved to NHS and actually probably have to ask to be referred now so there is no delay.
No dog yet a few calls and messages but will pop a picture up when I found a dog.
Now dealing w Thyroid function being below. It was slightly high and I wished they hadn’t asked me to take those pills as it’s really messed it up ans brought it down too low.I feel have strength but no energy, super sluggish and in mild pain in limb. Got new tablets to take to do now do the opposite and try to bring my thyroid back up… currently a T7 and you’re supposed to be around 12.
Anyhoo started taking them tonight… let’s see. Constipation is still there but I take movicol and dulcolax nothing else you can do.
Mouth thrush tongue still carpetty and toilet paper mache but I managed some food…it vaguely tasted of something, still w a sweet taste though. Made garlic bread with some tomatoes and feta… I think I need to make sure I take frozen grapes w me again next time to protect my tongue.
We had a few flakes of snow and a few areas badly flooded here. Luckily house and my local area fine.
Everything is more effective in IV so there must be a a reason why he wants it in IV but since you have numbness not sure why… I assume the picc line is giving you numbness?
Hope you get it sorted asap and congrats on no cancer news that’s fantastic
Sorry to hear you have so many side effects. It does often feel like the treatment for one causes another. A vicious cycle. Yes try ice and grapes on next cycle. I have done that since cycle three and taste, although affected, is not as bad as cycle two. Worth a try. Mainly find spciy things are the only things that taste okay. Bring on the sweet chilli sauce and the curries.
I was doing the grappes and need to restart again. Also I was on fluconazole for thrush down there so probably didn’t notice the mouth thrush as badly as before! Now downstairs is ok with increase probiotics (tg and let’s hope it stays that way) the mouth is taking the relay!
Need ice cube too you’re right. I can be there 4hrs the cold cap after EC post treatment is 90 min!!! I need to find a way to keep them cold and frozen that long. I may use a thermos.
Spicy things now upsets my stomach so badly and I used to love sweet chilli but now everything is already sweet like water I can’t stand it but hopefully it change again, need to work EC out and what works for me, this was my first one!
I take two thermos filled with half height icecubes. First cycle i tried this I took normal height ice cubes and couldn’t fit them in my mouth! Had to keep melting them in a cup to get them in. They are soup thermos so have a big opening to get the cubes in and out. Like this: Thermos example . They last me the three or so hours I have the chemo and am pretty much sucking an ice cube all the way through. I couldn’t find any advice online on how long/how much you need to do so have made it up as I went along.
Thank you I won’t be making the same mistake again!
I’ve got use of my hand on this chemo cycle so can feed myself ice cube and grappes
You can get long ice cube tray from b&m. I have a big thermos w large so will use that one
So pleased the ultrasound couldn’t find any cancer. That’s really good news.
So disappointed in your oncologist, I do wonder why some people work in jobs like this. I ran into a few people who just have no sympathy, somebody also mentioned a nurse who was flippant about hair loss. Why oh why would they do this? Why s this bloke so special he doesn’t do what everyone else does? It doesn’t help you with your plan.
I can totally understand your need for the PICC line to be out, I had mine for 15 weeks and was so glad when it was gone. A nice soak in the bath or shower without the plastic sleeve. Not to mention no more flushes, I hated the cold feeling in the arm and the horrible taste in my mouth! I had a pain in my arm afterwards and they said it was irritation in the vein due to length of time it was in.
I hope the nurse is understanding tomorrow and you get your point across re PICC. They have to think of the bigger picture if it’s affecting you mentally as well. Fingers crossed you get something sorted, even if they say we’ll leave it for the next one and review. At least you know it’s not months then.
@pinklilli3s sorry to hear you are having so many side effects.
Can’t be much fun! I had repeated thrush and the Nystan treatment gave me really bad upset stomach.
not put on weight yet, went the other way, but the break so will what happens on EC and back on steroids after 3 weeks break. Good luck everyone 
visceral tears helped quite a few of us with eyes during chemo, might be worth a try if you’ve not already 
I like ggs again boiled egg and had some avocado w lots of vinegar. I love the idea of a croissant 
but don’t think I would enjoy it now!!! Maybe next week 
xx
Partner got 2 really good tender pieces from Aldi for £5 which was a pretty good deal. I think over the next few days I should perk up.
and also strangely weird about no doing any treatment after post op.
tongue still carpetty and toilet paper mache but I managed some food…it vaguely tasted of something, still w a sweet taste though. Made garlic bread with some tomatoes and feta… I think I need to make sure I take frozen grapes w me again next time to protect my tongue.
