Sorry you are having such a rough time and please don't ever feel the need to apologise. That's what this forum is for - to support people through the bad times and celebrate the good times.
I hope you get some answers and respite soon.
Thank you shi . Ive completed x9 paclitaxel/carboplatin and 2 Ec treatments . Face still swollen and ears feel like got pressure .
Love Daisy xx
Daisy d ❤️ We’ve got you 👭👭you maybe bouncing on the chemo bungi cord just now, but this is t for you it can be a 💩 your team will do what’s best for you, do ask them questions ❤️ Sending you big 👭❤️👭💕💕✨✨Shi xx
Thank you so much Tracy . Really appreciate your reply
Sending you love and best wishes too
Hi Daisy. Please don’t apologise, we all just want you to feel better and are always ready to hear how you’re feeling whether it’s good or bad. I hope the doctors can get this sorted for you as I know when you feel so unwell how your mindset changes or mi e does anyway.
You will soon be through this and it could be a good thing if your surgery is brought forward. Sending you hugs xxxx T
Well done on finishing your chemo and the end is in sight. So pleased for you.
Glad you are feeling better and hope your ok for your next treatment on Friday.
Ive not been to well ended up 999 due to experiencing anaphylactic reaction to the chemo on wednesday . This happened about 5 hours after administration. Ended up in AE till 4am . They didnt want to keep me in due to Covid situation. Had high dose of steroids but still not feeling very well. Also my magnesium and pottasuim levels have dropped. Been back for bloods and now my White blood count has gone far to high. So fed up of it all now. It feels like im going from one problem to another. I am being discussed tomorrow at MDT meeting as i think they are looking at bringing surgery forward . They are not doing any reconstruction surgery but i just cant carry on like this for much longer. My throat is still so tight and ears tingling/ blocked. Each day i wake up hoping to feel better.
Sorry its a negative post as i dont wish it to be as everyone is doing so well.
Thanks to everyone - even the text gremlins 😂
I'm in Scotland too Tracy so no changes for me yet either - I don't think I'd be comfortable going out just yet even if we had eased the restrictions - I want to make sure my immune system (which in normal times is very good and I have no underlying health issues) is back to what it should be.
My head hair started growing as soon as I finished FEC although it is very slow - but I lost my eyelashes and most of my brows with Docetaxol - as you say, very strange! I thought I was lucky with my nails as although discoloured and brittle I haven't lost any, but I was speaking to one of my chemo buddies today who finished 6 weeks ago and she said it was after she finished chemo she lost some of her nails 😫
So glad to hear you’ve finished chemo Carisma xx It must be a great feeling which I am very much looking forward to myself. I hope I have a similar experience to you with the effects being less. I will have my second Docetaxel on Friday as I have been fine since getting home from hospital last week.
Have you found your hair has started even though chemo is not finished? I am seeing some signs of some hair growth though my eye lashes and brows are almost gone. Very strange!
How is everyone else doing? Are any going out now that the government has eased the shielding rules? I am still locked up in the house as I am in Scotland and we have not had any changes here yet. Not sure if I would be ready to go out and about even if they had.
Hi - hope everyone is doing well.
Had my last chemo session today- it feels a little weird! I can hardly believe how quickly the time has passed. I will still need to visit the unit every 6 months for Zolandronic infusions but that's nothing compared to chemo.
Have a video appointment with oncologist next Wednesday to see about radiotherapy but I finally can see the beginning of the end of my journey (fingers crossed).
My side effects from the second round of T were not as bad as first time so I'm hoping for the same this time. I've really had quite an easy time compared to some of you - and I had all my surgeries before chemo so I don't have to face that.
I will also be on hormone blockers for 5 or 10 years - I can't remember which.
I'm hoping my shielded status can be lifted soon - something else to ask my oncologist! I cannot wait to get out for a walk!
Thanks for your reply Caead. I will be doing radio too, then hormone blockers - kitchen sink 🤣 I have been told that having a positive mental attitude and visualising being healed helps a lot as well as managing stress, lots of fruit and veggies and regular exercise. Can be hard not knowing if anything is working though. I guess most of positive mental attitude is working on just holding the faith that it is all working and our bodies are healing.
Great you are feeling better Tracy 😊
best wishes to all
Hi Vornsta, I’m feeling a lot better now. I have been given a phone appointment with my oncologist I think to discuss whether I am well enough to go ahead with the 2nd docetaxel. I hope that I can go ahead and get this last hard bit over with xx
Hi daisy, back in 2017 surgery 1st, therapeutic mammo plasty, then 3 fec and should have been 3 t but had 2 t and then another fec because of reaction on 2nd t. Then 15 rads and 5 boosters. I was naughty and googled the surgery I was going to have and watched what was going to happen while I was under and for me that worked because I knew what would be happening if that makes sense? I know we are all different and that wouldn’t work for everyone but I found it helped me at the time for what I needed to do for me. Always do what’s right for you ❤️ You put yourself 1st ❤️💕💕✨✨Shi xx
Hi All, sorry to hear people have been having a tough time. Hope your teams manage to sort it for you and you start to feel much better soon. Vornsta I had surgery pre chemo. It wasn’t the planned course of action but they couldn’t confirm the her2 result so went with surgery first. I know what you mean. People ask me if chemo is working and if they are checking it. I was told surgery had removed it all. The chemo was to stop it coming back and to catch anything that might be undetectable but left untreated could form elsewhere. I still have radiotherapy to go as well. I guess they may do scans or staging test later but as far as they were concerned it hadn’t spread beyond lymph. As you say you just have to trust them. They are certainly throwing everything at me.
Best wishes to everyone.
Hi Daisy, sorry to hear that, hope your team gets a good plan going soon.
Am I the only one here who did surgery pre chemo? Seems like it right now. I envy that you can monitor chemo response when you have surgery afterwards. I have no idea if it is working or not. Just have to go by trust. I reached paclitaxel half way point today. 6 weeks to go.
hope it is going well at home Tracy, was next chemo delayed?
best wishes to all
Thank you Shi. I will ask the questions to what would be the best way forward . Did you have surgery before or after chemo ,? Xxx
Sorry to hear you’ve had a reaction to your chemo. I hope your oncologist will sort something out for you as you’re so near to finishing now. Thinking about you and wishing you all the best xx
Daisy ❤️ Sorry to hear you had reaction, I did on my 2nd t back in 2017. When I saw my oncologist after before my 6th and final chemo they said I could have abraxane or I could have another fec, I had another fec, so don’t forget to ask questions ❤️ Keep close eye on yourself and rapid response if anything not quite feeling right ❤️ Keep safe 💕💕✨✨Shi xx
Ive got scan booked in fir 15th june whether or not they are able to bring it forward im not sure.
My last scan showed it had shrunk from 4.6 cm to 2.6cm but stable under arm
Will just be glad to get it out like we all are .
How are you feeling about surgery ? Do u know if you have to have rads too ? ( sorry if asked before !)
Ah bless you Daisy that sounds really scary. Hope you’re ok.
it sounds as if you have already completed a lot of chemo so hopefully it’s done it’s job and surgery will be a good option for you.
have you had a scan to review the progress? (Sorry if you’ve already said)
Hope you are all doing well. Glad ur surgery has moved to a private hospital not long to wait now.
Hope you are feeling much better Tracy now you are back home.
I had my 2nd EC yesterday and while i was fine at the unit and on administration. I experienced an anaphylactic reaction and had to call 999. So spend till 4am in AE they didnt want to admit me due to high number of Covid Pts. I was given prednisolone and piriton . My oncologist is discussing with the Breast care team whether it would be in my best interests to being surgery forward ( i have completed 9 treatments 9 paclitaxel/,carboplatin and 2x Ec). Although i want the best treatment that is needed i would be relieved to not feel so poorly
Glad your feeling better for being at home Artycart....nothing quite like your own bed!
Daisy, I hope treatment went ok and side effects are kinder to you this time round
my op has been moved forward 2 days (2 weeks yesterday) and is now in a private hospital which is reassuring as the hospital I was planned to be in has one of the highest COVID rates around.....all stocked up on new pjs and slippers now ready for it!!
Yes it’s been lovely being home. I’m feeling better more quickly just with having a good sleep and being able to get fresh air xx
I hope the changes to your chemo help with all the side effects you’re having and that you don’t need to go to A&E. All the best for tomorrow xx
I still have two more cycles to go too. Next one next Friday though my oncologist has booked a phone appointment beforehand to see how I am as he said they might give me a delay to recover.
I have intermittent stabbing pains in my breast and today I had strange tingling crawling sensations on the side with the lump. I also sometimes feel that my underarm is a bit tender in specific spots. What type of pain are you getting?
How is everyone else doing? Thomaschix, how are you and how long do you have until your surgery?
Thank you all for your help keeping me sane while in hospital and for your support. It was so much appreciated to have people who understood and cared even though we’ve never met xx
How are you feeling now your outbof hospital ? Bet you were glad to sleep in your own bed
Hope everyone is keeping well .
I have spoke to my oncologist today and he had reduced the dose of my EC tomorrow and changed the dexamethasone to prednisolone to see if that helps me. Beem very breathless today and burping alot so not sure if its Heartburn. Told me to go up to AE if no better . So will see what tomorrow brings. Temp and Sats are fine.
Looks like got another 2 sessions left after tomorrow . Has anyone had any breast pain /,Axilla discomfort.
Im just hoping tomorrow SE are easier
Wishing you all sweet dreams
Finally my temp has sorted itself out. I’m just waiting for my husband to collect me. Still feel like I’ve had the stuffing knocked out of me but I’m looking forward to getting outside for some fresh air.
Hope everyone is well today xx
How are you feeling today with your pains and headache ,?
Sending you best wishes
Hi Artycart 😁 the threads were a lifeline especially when having casa nhs stint during chemo 👭 we’ve all got uptown funk at the ready for when you get home so we can 💃🏻💃🏻🕺🕺💃🏻💃🏻With you 👍 turn everything into celebration, keep 😁 and treat yourself to a new top or something you like when you get home too 👍 Hope your onc or one of the team see you tomorrow 🤞 that’s good your neutrophils are holding up 👍 hope you’ve good menu at your casa nhs, mine was like a mini harvester menu at mine it was great 😋 like school dinners again 😁 hope you get some rest tonight 😘💕💕✨✨Shi xx
I haven’t heard anything from my Onc. The doctors said they would contact him. I will ask about this tomorrow. Neutrophils were going in the right direction yesterday. Up to 1.5 from 1.3 and they thought that the infection would die down once that Started to happen. They gave me an extra filgrastim injections yesterday. As it’s Sunday there were no blood tests done today so will see tomorrow what’s going on.
Thank you 😊 for your support
sorry to hear you are still in hospital. Hope the onco finds the reason soon for the temperature and you can return home.
Me still suffering from my side effects . This time my left side shoulder and back is paining more than my right side . Don’t know why . And the usual headache which is irritating . Hope it improves in another 2 or 4 days.
Hope others are keeping good health
Artycart 👍 your mouth is feeling better and you are eating and drinking ok 👍 has your onc or one of his team been in to see you while you have been in? Get your questions ready for when you have next appointment before next chemo, I.e. will they reduce next dose etc 👍 try and find out what your neutrophil count is too, have they been giving you a daily blood test? 💕💕✨✨Shi xx
Dear Tracy, thinking of you, so sorry it is taking a while to get better. Hospital is no fun in normal circs, without visitors must be very dull. Hope you have access to tv etc on the new ward. Wishing you better x
Glad your mouth is feeling a lot better and your are able to eat and drink.
At least you are separated from others to keep safe but must be very strange
Hopefully tomorrow will bring a better day for you. Its hard going through all this treatment as it is. There still time before next chemo for you to be feeling much better.
Hope you get a good night sleep.
Thanks Daisy. I feel reasonably ok when I’ve had paracetamols which takes down the temp. But very sore head when they wear off. I am able to eat and drink and my mouth is a lot better now. The ward had been moved into an ophthalmology ward due to covid. This means that I am currently in an area on my own with temporary partitions as walls and eye testing boxes with letters on them on the walls. It’s all very surreal but I’m starting to get used it now. It is hard with no visitors. Things that I need have to be given to security and a lovely nurse went and collected it for me.
Next chemo is creeping up. Friday 5th June. No idea what will happen with that now.
Hooe you’ve had a good weekend xx
So sorry that you are still having temps . How are you feeling in yourself ? Hope you have been able to eat and drink .
Understand how u must want to get home and hope tomorrow will be better.
Are you in a side room or on the ward ? It must be hard with no visitors too. Hope you have been able to pass the time. When is your next chemo ?
Sending you all the very best wishes
Hi Daisy and everyone,
Still having high temperatures. Off thevIV but not looking good for getting home tomorrow. Just have to wait and see what the doctors say tomorrow. Very tired of this but just have to stay here until somehow it gets sorted.
Very sunny and hot tonight! Melting on my pyjamas!
How is everyone else doing?
Hi Daisy, The rag rug sounds great. I love reusing things to make useful things. Your daughter sounds brilliant 🌟
My temp went up again this afternoon to 38 but had been ok since I think. Just going off to try and get some sleep now and see if things are better again tomorrow. Xx
Hows your temp now Tracy? Hope you are starting to feel better.
Love Daisy xxx
Hope everyone is doing ok xxx
Im just using all odd Tshirts that we no longer wear. I brought one of the pegs that u use to push it through but found it was just as easy to use finger ! I used the rug matting as i couldnt find any sacking which they used to use orginally.
My daughter is very much the eco warrier in our house so nothing doesnt get reused in some way or another ! .She has been busy making old pallet into beautiful planters. She has also made some lovely dream catchers out of cardboard packaging and coloured string.
Pintrest is a fantastic place for all ideas. I love anything thats a bit quirky and different.
Yes home made is always best . I must admit i love homemade Apple pie and custard ! My 15 yr old son is the baker in our house he makes a fab lemon drizzle . Mine are like pancakes !
Yes we are ploughing forward now and have come a long way since January. Keep going forwards not long till we get chemo done and get to the op !
Love Daisy xxx
Thanks for your good wishes everyone xx
Daisy - Rag rugs are lovely 😊 What design are you making? I have a collection of photos of them on Pinterest as one day I’d like to make one. Are you using strips of old clothes to make it?
I know what you mean. I would love to walk the dog again. But we’re all getting there.
Bet the pies were yummy. Home made always better xx
Hope Everyone else is keeping well and managing to keep ok in this lockdown.
I never thought i would miss going to the shops so much or taking the dog for a walk !
Im currently making a rag rug for my daughter to take to university just trying to keep occupied ! ( not that im very crafy really but it passes the time ) .Also made some pies yesterday too.
Love Daisy xxx