@snoop182 I haven’t had heavy nosebleeds but sometimes when I blow my nose lots of what I can only describe as scabs come out and then there will be some very light bleeding. It’s really frustrating. Sometimes it feels really stuffy at the top and I’m sure I’m more sensitive to strong smells now.
On the subject of feeling emotional I haven’t been too bad but I haven’t really let myself go down that path of thinking. It’s unusual for me as I usually overthink everything but for some reason I think that part of my brain has shut off. I think like @snoop182 because I’ve had my surgery already the cancer has gone and the chemotherapy, I’m going through and the radiotherapy, hormone therapy to come is to make sure it doesn’t come back/mop up anything that might have spread through the node. I probably would feel more emotional if I had surgery still to come as I know waiting for my operations was when I was most worried.
Ive had nose bleeds on paclitaxel! I spoke to my oncologist about it and he said that it is because our platelets are low and we have no nose hair . He wasnt concerned about it but said if it continues for longer than 5 minutes, to go to A&E. But mine sounds like yours, it was just a trickle or if my nose was runny. Theyve slowed down now and seems to be okay! My nose is extremely runny though.
I think this is what it is. Im having chemotherapy and then surgery and feel like once ive finished chemotherapy (5 more to go!) Ill be stuck in limbo for a little bit waiting for my surgery. I know the tumour is still there and thats what is frustrating. Im constantly worrying about the dreaded spread!
Hi All,
Feeling very nervous, im moving onto EC on Thursday for 4 3 weekly cycles.I have finished the 4 cycles of Abraxane, carboplatin and also on immunotherapy.The reason i am on Abraxane is due to suffering anaphylaxis to Paxaital.I really dont want to have a reaction to EC, I remember how scared i was when i went to Abraxane.Im hoping against hope that im okay on the EC.I havent had the response on Abraxane oncologist hoped.My tumour only shrunk from 14mm to 12mm.I have missed 4 due to being hospitlised twice xx
Hi, sending hugs to you. I was terrified of moving from EC to docetaxel. Going on to a new drug is scary even if you’ve not had a bad reaction so it’s completely understandable why you’re nervous. If it helps, with EC there is a nurse with you the entire time so someone to talk to and distract you and most importantly keep an eye on you. Make sure you tell them you’re nervous they will do as much as they can to help. Good luck xxx
@tori123 Thank you❤️ yes very true same for everyone i imagine as its a new chemotherapy.Yes I seen a lady have it and the Nurse was with her throughout and it went well.I will let them know before hand,the Nurses are lovely so I know they will understand xx
Oh ladies, I’m just a tale of woe at the moment, I’m so so fed up of things going wrong for me and of hospital trips, losing hours and days of just waiting, waiting, waiting. Nobody has answers, nobody knows why these things are happening, although they can agree it’s unusual and that I’m “a strange case”. Now being sent for a CT scan on Sunday as they wonder if there’s something underlying that they’ve missed! Immediately, your head goes back to the initial diagnosis and you think surely not…
To pick up on some of your earlier reflections though, I just can’t let my mind go there right now, to constantly look at the what if’s and the what’s shit, would be to miss even the tiny things each day that get me through; whether it’s watching the birds wheeling in the sky, or the leaves bending in the breeze, or just being with my family. I have to put my trust in the process and the team supporting me and hope it carries me through because if I don’t I’ll tie myself up in knots of stress and anxiety, my mental health will nose dive and adding that to my list probably isn’t helpful… I also believe that by managing my mental health I’m giving my physical health the best chance as it’s all connected. All of which is to say, sometimes I need a good cry too just to let things out!!
Oh no! Im so sorry to read that you are going through it. I have everything crossed for you for Sunday!
I agree with the mental health aspect! My mental health has taken a huge nose dive but thats only because i am bored at home by myself . I love to be busy so being stuck at home is torture for me. Im really trying to take each day as it comes and look at the positives each day! Im still very lucky in terms of being able to get out and about with my dogs in the morning and able to leave the house if I want to (although the fatigue is creeping up on me now!) You are right, we have to put our trust in the experts.
@tori123 ,Had my first EC today and no reaction . The ward rang this morning sating wouldnt go ahead due to low neutrophils, but then phoned back 10 mins later saying consultant had given the go ahead, Phew.Got a headache now but nothing that isnt expected.Just wanted to say thank you for your calming words:smiling_face_with_three_hearts:xx
You’re very welcome. I’m glad it went well. My advice now would be to keep on top of the anti-sickness meds, I really suffered although lots of people don’t, better safe than sorry!
Sorry it’s so tough for you right now @kiltie I hope you’re feeling ok and the scan is ok on Sunday, the waiting all the time is really tough.
@budsbails2301 I hope you’re still feeling ok after your first EC.
I had my review with the nurse this week and after discussion with the oncologist they have decided to reduce my paclitaxel dose by 25% to see if that helps with the diarrhoea. So I’ll see what happens when I go in again for my next treatment on Monday. My bowels still aren’t back to normal but at least I can manage to leave the house with confidence now.
Thank you,yes all went well.Just got a headache at the moment.Glad all went well for you and ringers crossed the reduction will ease your symptoms of xx
@kiltie I really hope they find nothing from your scan on Sunday . As worrying as all this is for you, its good that they are doing something - and you’d rather know than not. I’m so sorry to hear of everything you’re dealing with at the moment, it really gets in top of us sometimes and try as we might to cope, mentally it chips away at us over time. I definitely feel that, I’m so close to the end of chemo (three sessions left) but my determination and strength isn’t what it was. Funnily enough I can still provide support and advice to friends about day to day life/work stuff and other people’s illnesses, but there’s no one can say the right thing to help me get through because to them I’m ‘doing so well’ (I’m selective with what I tell them, but honestly I think I’ve given the neighbours the impression that chemo is a breeze as I walk up the road with the dogs, smiling and being grateful for a good day!)
I’m having so many scans at the moment it’s scaring me! The potential lymphoedema in my hand isn’t going away, so when I went for my treatment yesterday the specialist practitioner wouldn’t authorise it until he’d sent me for an ultrasound of my arm to check for blood clots (came back clear thankfully). Then today I had my second routine heart scan because I’m on herceptin, and next week I’m having a CT scan before the start of my radiotherapy later in September.
@dragonk I’ve really struggled with diarrhoea on Paclitaxel, even on medication. It’s so draining, and like you there are times I just daren’t go out unless I am dosed up! Funnily enough I’ve not lost weight - which I thought might be the silver lining - obviously the non-stop carb binges on EC have taken hold of my metabolism now! Really hope the dose reduction helps to ease the symptoms for you. It’s good they have that as an option.
Sorry for the long post. I haven’t really shared the low points on my rollercoaster ride - but they are there. Love and light to everyone xxx
Sorry this is going to be a garbled post. I’m way behind.
@dragonk i missed a chemo session due to covid and because im on a three week cycle, they didnt have space for me for three weeks. Im getting chemo pre surgery and i was convinced id feel the boob deteriorate with the delay. Thankfully i couldnt, if only for my mental health. I was v anxious, esp as id only had two sessions at the time but i tried to think of the overall treatment duration and how this was prob small impact in grander scheme of things. Im also getting the missed session now (glad of this tbh) so i should be done as of tuesday but instead ive one more 03 sep. Ive also had my dose cut by 25% after first cycle due to diarrheoa. It was hard to hear my body wouldnt tolerate the standard dose, but the oncologist used the word “dangerous” twice when i pushed him, and i was popping 8 immodium in a day with falling potassium so …
Im now cycle 5, i take immodium BEFORE i get diarrheoa and dont stop until ive had normal BM. Mostly 2 to 3 tablets a day has been working for me but everyone is different. God knows what i would have been like on full dose . Anyway, just to say you’ll be back on track before you know it, and i totally get the anxiety too. X
@glitteryrainbow sending big hug. Have def been there. Its stupid stuff like putting myself as case of emergency for kids contact and wondering what happens if im not around. Its planning to do a college course in one breath and then seriously thinking i have to cram my bucket list into the next two years. I feel like im trying to plan and control for the best and the worst outcomes, which of course i can’t. I have no idea who i am anymore, i spend half my cycle living detatched from reality with nausea and fatigue, and the other half wildly trying to compensate myself and family for what we have lost. Boom and bust. My own experience is those landmark occassions (birthdays, a night out, holidays) are bittersweet, a reminder that life is still out there but im not fully in it yet. I suppose its a beacon of hope for better days but that its also okay to grieve whats been taken away .
@budsbails2301 glad to hear you got your chemo sorted. Hope the next few days are okay.
Just to echo what @hopefulheart said above about making it look easy, i think we spend a lot of time trying to protect those around us and its exhausting. My mother in law rang recently and i was in the horrors. I honestly couldnt pretend. So i didnt ring her for a few days I wanted to cry, not put on a brave face. It doesnt help when the only positive reinforcement people give in general is to tell you how brave you are. I know it comes from a good place but it can feel like instruction rather than a compliment. I have definitely grappled with percieved expectations. Trying to allow myself some more tlc and crash days and not always be in warrior mode but its not easy. Big love to all. Thinking of you. We are doing the do!
Hey everyone!
How is everyone doing?
Ive been okay! Had a weird infection in my toe last week that came out of no where but was able to still have chemo on Friday as my oncologist said she was confident it was a local infection. So that was a plus! Ive had my end of treatment MRI appointment come through! Which is funny because its not even at the end of my chemo:joy: but still a light at the end of the tunnel!
I fell down the stairs on Sunday morning so feeling very sorry for myself. No big damage, just a couple of bruises and pulled muscles! Not sure whether i felt dizzy at the time or whether its because i cant feel my toes atm! Safe to say i woke everyone up .
Aw glad you are okay and didnt hurt yourself❤️ hope your toe is feeling better too,gd news it didnt delay your chemo. Ive had ultrasounds I didnt realise they did Mri too is that the breast Mri?.Be honest my first EC has wiped me.I had it on Thursday and apart from walking to the kitchen and back im wiped.Had nausea,back pain.No fever though.They didn’t give me any injections to take afterwards which i found really strange so not sure if its that. So just taking it a day at a time and hoping to feel a bit better each day xx
It feels a bit like the home strait for me now - seventh of nine weekly Paclitaxels on Thursday this week and I’m currently sitting in the combined day unit waiting for my PICC line blood test, then going to radiotherapy to find out the plans/schedule. I have the initial CT scan to do the measurements tomorrow morning. It’s all go!
I’m the same as you @glitteryrainbow with no feeling in my toes - I’m hoping that all comes back as the chemo effects leave our bodies - for me it’s been getting worse over the last few weeks. I’ve actually got a F2F oncology appointment tomorrow for a change, so I might mention it then in case it’s an option to reduce the dose for this last 21 days. Also woke up with the biggest cold sore on my bottom lip this morning! I look like the Elephant Man! hopefully that goes down in the next few days and doesn’t get infected. And still waiting to hear from the lymphoedema clinic to see if they can help with this hand swelling thing. It’s not much in the grand scheme of things but it feels like a collection of random rubbish towards the end.
I’ve got a ‘keeping in touch’ call with my manager this afternoon - she has listened to me, but not necessarily ‘heard’ me when we’ve caught up - I think shes under the impression that I’m going to bounce back like Tigger because I’ll be so grateful when it’s ’all over’. I’ve been working when I can but only sporadically when I feel well. I need to find a way of telling her (nicely) that you can’t go through basically 9 months (since diagnosis) of a cancer journey without a slight change of perspective and some residual mental health challenges. Wish me luck!
. He wasnt concerned about it but said if it continues for longer than 5 minutes, to go to A&E. But mine sounds like yours, it was just a trickle or if my nose was runny. Theyve slowed down now and seems to be okay! My nose is extremely runny though.
just to let things out!!
. The ward rang this morning sating wouldnt go ahead due to low neutrophils, but then phoned back 10 mins later saying consultant had given the go ahead, Phew.Got a headache now but nothing that isnt expected.Just wanted to say thank you for your calming words:smiling_face_with_three_hearts:xx
. As worrying as all this is for you, its good that they are doing something - and you’d rather know than not. I’m so sorry to hear of everything you’re dealing with at the moment, it really gets in top of us sometimes and try as we might to cope, mentally it chips away at us over time. I definitely feel that, I’m so close to the end of chemo (three sessions left) but my determination and strength isn’t what it was. Funnily enough I can still provide support and advice to friends about day to day life/work stuff and other people’s illnesses, but there’s no one can say the right thing to help me get through because to them I’m ‘doing so well’ (I’m selective with what I tell them, but honestly I think I’ve given the neighbours the impression that chemo is a breeze 
. Anyway, just to say you’ll be back on track before you know it, and i totally get the anxiety too. X