have you all been given a rapid response card? You should have been. What happened at trust I was at you called that and they got you into the oncology bit and from there onto a ward. If you did end up in a&E at all out of hours we were told to show that card as antibiotics should be administered within the hour. Worth mentioning to your teams if you don’t have a rapid response card. 
Shi xx
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Back home from last ever EC whoop whoop! 9 sessions of Abraxane next starts on the 20th June. Thanks @pollyanna1 and @swk1981 for your lovely messages. Now in bed on a steroid, high balancing my insulin and sugars wondering which weird and wonderful item of shopping I never realised that i needed will be purchased in the night!!
@pollyanna I hope the drugs are starting to help with the pain for the neuralgia.
@swk1981 fingers crossed you have a better night sleep and your neutrophils start climbing soon. I read your message several times that you sent and you are so right! I’m such a hyperactive person usually and I think sometimes a lot of us are just in denial with the whole situation and it takes your story to put things into perspective and think oh actually I can’t just say I’m fine and soldier on.
I will be taking my temp more regularly and maybe being a bit kinder to myself.
Big hugs to everyone else, I have the usual fuzzy head and wish I could remember everyone’s names! I almost need a reply all button, I hate to think I’ve missed people out!
Helen x
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Congratulations @hc1973 to finishing EC, 
what a massive moment for you. Hope the side effects are kind to you 
🩷
Happy online shopping 
x
Hello! I hope this message finds you well in our current circumstances!! I hope you don’t mind me messaging. I start my chemo next Thursday - 12 weeks of paciltaxel weekly and phesgo. I would like to try the cold cap and the hospital has said they have a paxman cap available. Aside from the paracetamol- is there anything else I can do to prepare. Don’t worry if you don’t feel well enough to message back!!! O’ new to the forum and just figuring it out! Thank you and wishing you well xx
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@emammi welcome! I’m cold capping - have done 3 sessions up to now. I take paracetamol and ibuprofen beforehand as I do find it incredibly cold for first 15 minutes. I have mittens with warm packs in which I put on my cheeks for those 15 minutes and I also sip hot ribena. I wear compression socks to protect my feet. Currently I’ve had minor shedding. Have had 3 sessions of EC xx
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@hc1973 delighted you’ve completed your EC and are home. Go easy on yourself and take it easy. the 1st week of those fuzzy headaches are a nuisance, happy shopping x
@swk1981 hope you’re feeling better and things are starting to level out.Hope you get a good nights sleep and rest xxx
I had my radiotherapy planning today. It was at our regional cancer centre and they are amazing. I think I got more information in the few hours than what I’ve had in 6 months.
Hopefully I’ll be startlingly radiotherapy around the 1st week in July as long as my last chemo goes ok. I’ll be getting a one-week course of radiotherapy in fewer but larger daily doses as they said this was found ( new research) to be as safe and effective as standard three-week dose. I’ll then get 4 days of booster to the tumour sight as I had SLE surgery and this is what they call belts and braces.
I’m back on Monday for an MRI and 3 small tattoos for markers for radiotherapy. I thought I’d share this for anyone who has to have radiotherapy , the oncologist said yes you could be extremely fatigued and maybe some discomfort around the boob but it’s nothing compared to chemotherapy.
I hope everyone is keeping well and side effects are under control or at least bare able.
Sorry if I’ve missed anyone and for the horrendous spelling mistakes, brian is a bit mush tonight 
pauline
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@hc1973 fab news EC done 
a step nearer the end. Hope you sleep a bit and have minimal side effects. Laura xx
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@pollyanna1 god you made me chuckle writing that your ‘Brian’ is mush 
Neutrophils have bounced a little bit platelets low and my liver is having a hissy fit with my Alkaline Phosphatase over 100 and my Bilirubin above normal. Probably caused by the antibiotics.
I’ve had luminous green diarrhoea all day but decided to just eat my way through it and have some energy.
They let Matt come tonight and I made him get Nando’s so I had plain rice and grilled chicken which is what we give dogs for diarrhoea so I figured I’d try it and get some protein in me. If I’m having diarrhoea then I may as well have some food as 4 days is so long without anything.
Have another recommendation for anyone with diarrhoea too. Clinell Contiplan wipes. They are antibacterial and cream based. Toileting 20 times a day gets quite painful but they gave me some and my bottom doesn’t hurt at all now. They’re £4 for 25 wipes and I just use one at the end and it puts the moisture back and disinfects and soothes me. It’s been a lifesaver for diarrhoea.
@elle16 Matt has done amazingly given I left him with my Dad visiting and a horse with a hoof abcess (he’s not horsey!). My friend has stepped in and is helping my girls with the horses and bandaging Fred’s hoof and the farrier round the corner has saved the day popping by to check on him. Bullied my son into doing Chemistry GCSE revision over the phone today and he’s doing well at self motivating for the first time in his life. All three kids walked to a golf course this evening and stole some balls from the driving range course and went into one of our fields and my son taught the girls how to hit golf balls and he proudly told me that they only used one ball each and retrieved it so that we don’t end up with golf balls in our hay! Probably the most sensible thing Ollie has ever done in his whole life. Maybe there is hope for him after all. They never hang out as a three so it sounds like they’re needing each other a bit.
Was hoping to be home to do a sweepstake for the Epsom Derby but it’s not looking likely and they’re talking about me getting home after the weekend.
Still super sore with joint pain and it’s not helped by being bedridden for 4 days now.
Oh and to add insult to injury, my hair had regrown on EC and was 1cm long. It’s falling out all over again now and doing that splinters in your head thing. They weighed me today and I’ve lost 5.5kg since chemo a week ago so my kids are going to be shocked at tiny Mummy with a shiny head by the time I get out of here.
My Oncology Lead from my hospital rang me to see how I was today and she said she wonders if this was coming anyway since my bloods didn’t bounce as hard last time. They’ll reduce my dosage for the next one which kills me as I wanted belts and braces but I can’t risk this happening again. Although I’ve lost 10% of my body weight so actually the dosage correction may not actually be that significant and, as my husband said, overdose isn’t good so let’s just look at it that the original dose was too high rather than the lower dose is too low. Smarty pants.
My husband has booked one of the contract cleaners we use at work to come and deep clean our house tomorrow. I didn’t want to point out that by the time I get home, the kids will have killed it
It was nice to be able to see Matt and he commented that it took neutropenic sepsis for us to be able to have a date night with Nando’s and for the kids to leave us be.
@hc1973 so chuffed today went well and how challenging it must be to manage insulin and all this!!!
@belle1 did your bloods come back over 1 in the end?
Here’s to a good night for everyone! Anyone with sore mouth, ask them for the GELCLAIR as it’s been the greatest gift. That and my husband bringing me 8 bottles of frozen water. The greatest gift anyone could bring as I think I’m a bit weird and won’t drink tap water (we have a bore hole at home and hospital tap water smells funny!).
Sleep well everyone x
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Congratulations on that EC milestone @hc1973 , hope you get to enjoy the time in between before starting your next block
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Sounds like things are picking up☺️ I never got a call so I’m taking no new as good news and turning up this morning. Hoping it’ll go ahead as this is my last EC too and just want the first half over with!
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Good luck today @belle1! I hope it goes well. Such a great milestone to get over and done with! X
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Fabulous message @swk1981 , glad you are starting to feel a bit better and sounds like your family have done you proud whilst your not there, congratulations on the Nando’s date hope it did the trick like it goes with the dogs 
hope you have a speedy recovery from now x
I’ve actually lost 3lb since Friday without the dreaded diarrhoea, I just can’t snack like I normally do, I felt lots better yesterday but feel crap again today, my face and head hurts like pressure and my feet, fingers and back are sore, I’m really hoping to feel better after the weekend I’m still better than I was though so I’m not overly concerned,
@belle1 good luck today and congratulations on this next mile stone x
@pollyanna1 thanks got all the information regarding radiotherapy , how long after chemo finishes does radio start? Xx
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I’m feeling like you, appetite not great and im day 10. I’m still taking anti sickness although vomiting & diarrhoea has stopped still feel nauseous, I can live with that.
I was speaking to an amazing nurse specialist yesterday at our regional cancer centre and she told me to stay on anti sickness until chemo is finished. I’ve 1 to go. She also said when 1 stops working let them know and they’ll change it. She also told me it’s common with doxorubicin to have sickness as time goes on. I know it’s not ideal but at least I know it’s normal.
Radiotherapy starts 3 weeks after chemo finishes as they like to give your body this time to repair.
Anyone needing radiotherapy will go for their planning appointment just before last chemotherapy.
When is your chemo due to finish?
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there has been lots of us over the years had a reduced dosage of chemo after getting floor and having a casa nhs stay as you are just wanted to let you know Shi xx
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Thank you! This is so useful. Such a minefield trying to prepare. Well done for completing 3 sessions with the cold cap and good luck with the rest xx
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@pollyanna1 i haven’t took any anti sickness with Docetaxel, I don’t really feel sick just generally unwell, my last chemo should be 4th July , they did say officially finished 26th so that makes sense with the three weeks you mentioned,
Welcome @emammi good luck with your first treatment snd cold capping
Firstly welcome,
I’ve just hit my half way point yesterday, Ive done 4 cycles off EC aka red devil & am also cold capping.
I was told yesterday that am the 1st person my nurse Vicki has seen in ages who was this far on in treatment & still had alot off hair. Don’t get me wrong Ive got thin hair anyway but lots off it, am shedding like mad & the top of my head is thinner, as are the sides & I have a small bald bit just above my right ear, but I know am 1 off the luckier ones.
I take 2 paracetamol whilst at hospital when am given my pre meds & am down to only washing my hair twice a week (I used to be a daily/every 2 day girl) so managing this new routine is a massive step for me.
Am moving onto Paclitaxel next every 2 weeks for 4 cycles, radiotherapy for 7 sessions & hormone tablets & injections for 10 years, however today am super pleased that am now half way through my chemo journey 
Good luck, you will be amazing & please use here as a reach out, no questions or rants are judged cause we’ve all been there or going through the same, oh & no topics are off the radar either (its actually “refreshing” to hear others are in similar situations, no matter what they are. L xx
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@emammi I’m just home from my 4th EC and like @ivegotthis01 i still have a head of hair cold capping. I’d echo the paracetamol beforehand and I also like to have a hot drink to sip for the first 10-15 mins as it takes away the shock of the coldness. I also use a heat pad that the hospital give me… I have it on my forearm during chemo but then once that’s done I put it on my legs for a bit of a heat for the last 90 mins.
I’d also say to expect a ‘big shed’ at some point so you’re prepared. I have super thick hair but have maybe lost about 30% mostly from 1 big shed which freaked me out as I don’t think I realised just how much hair would come out. It did come out fairly evenly for me so no bald patches. It can be from days 10-14 shedding can start and I started getting a little at day 22 but it was day 26 when i was washing my hair that it happened. Since then it continued to shed noticeably more than usual a few days but has slowed down again so although I’m shedding it’s not a ridiculous amount each day. Good luck!!
P.S. I’m also officially halfway there now with chemo woohoooooo!!!
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