Morning Ladies, so I’m due my next EC on Thursday and still have an awful headache. The headaches seem to be lasting longer and longer. I ended up taking codeine last night. Then I worry as I think is this normal and I just tend to get on with it should I tell my BCN?! I just wondered if anyone else was the same. Last EC on Thursday can’t wait to get it done but dreading it at the same time as this round has felt a lot harder. @gromit12 running a marathon and @swk1981 on your mega journey to Scotland and wedding wow you guys rock! Hx
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@hc1973 @swk1981 thank you 
And I can still move this morning!! There’s a local Sonning Scarecrows event today where you have to hunt for about 50 scarecrows around the village so that will probably entail about 10km of walking!
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@hc1973 id definitely tell them as I go with the full disclosure approach and they can do what they will with the info. They may be able to help you too☺️ I’ve had some headaches and blurry vision after my third EC. The headaches were first then got sensitive to light (I’m talking my eyes were like I was chopping onions!) and then my vision went blurry in left eye. I phoned the helpline and got told to go to opticians to fully check it out. Turns out my eyes are super dry and my optic nerve is irritated on left eye, which the optician hopes will resolve itself after chemo. If not he’ll need to give me glasses. I’m still a bit concerned about that and will be bringing it up with oncologist/BCN when I see them as not sure how common that is? Since he gave me ointment and eye drops for the dry eyes my headaches have stopped and light sensitivity almost gone (it’s just slight now). I hadn’t even felt my eyes dry so hadn’t put two and two together! Third EC has definitely been worse and I’m also looking forward to finishing mines!!
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@belle1 I’ve had blurry vision and haven’t even mentioned it- always forget when I’m talking to anyone. Had already decided I’d get my eyes rechecked post chemo. And my eyes incredibly dry, and I still have eyelashes miraculously. I use eye drops regularly. I also seem to have a low grade headache a lot of the time but so many of the meds cause headaches but have stopped taking them all now. Oncologist says ondansetron really bad for headaches so took less of that this time. And I’m aware I struggle to drink at times as nothing takes my fancy and hate water. Laura x
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Hey @hc1973
I didn’t get headaches on Cycle 1 or 2 EC but had a headache for most of Cycle 3 EC and my vision seemed to drop off a cliff (I’m a glasses wearer who never wears them but absolutely had to!).
No headache now I’m on Docetaxel though which is nicer but the final leg of EC was so different to the start of EC.
Eyes are dry as can be or watery as can be and sore. No rhyme of reason. Just unhappy. Eyelashes only just holding on and pencil thin eyebrows so I think there’s more pollen/dust etc getting in than I realise.
I’d always tell your team. They may see links that we don’t and, quite frankly, I’ve realised that often I’m too capable at self managing and my family have become reliant on it and it sometimes freaks me out that I’ve become the one ‘watching myself’ and that if the proverbial hits the fan then my family haven’t stayed up to speed on what to look out for enough. I’ve brought it upon myself by being a control freak but, with the change of drugs, I NEED someone capable to be keeping an eye so I’ve involved my medical team more in some of the guesswork. Phoned them last night for excessive bruising on Docetaxel and feels much easier than my husband doing a confused face. Xx
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I tried and tried and just never got on with them at all. I found that any square scarf over 65cm x 65cm was easiest and have loads of rectangular ones too that I make into squares and can then be a triangle are sooooo much easier and can be on and tied in 1 minutes flat. All the pre-tied ones I just couldn’t get the shape right so no help I’m afraid!
I just do mine like this and have think sarong material ones and thicker ones with bigger knots and they stay on soooo easily (I wrap a hair and around the base of the knot for security though). X
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Sorry to hear that - glad I’m not the only one though as was starting to get more worried! My vision is usually a couple lines below 20/20 in both eyes (optician calls it superhuman😂) so was very strange when I suddenly couldn’t focus! I was wearing sunglasses indoors at times too lol so phoned the helpline as it was getting ridiculous with the light sensitivity lol. The ointment and eye drops I got are prescription and have really helped with the dry eyes/sensitivity though. The optician randomly asked if I’d had an MRI of my head which just stressed me out when I thought about it afterwards🙈 should’ve asked why as it was probably just a flippant question!
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Can I ask where you got your scarves? I’m finding it hard to find nice ones of the right size online. Was wanting to get some just in case!!
I’m the same - tell my husband and my team everything for the same reason…. If it hits the fan they know what’s been going on😂
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My best ones are really cheap sarong thin ones I found in a hippy store in Paris before chemo BUT the ones I wear most now if I want to look smarter are Accessorize ones and Oliver Bonas. Brighton Lace sent me two gorgeous ones too which are thinner and great in warm weather.
Satin ones are hideous and too thick and slippy and a bit too Joan Collins.
I got a lovely blue one from Mango last week.
Either go larger really thin sarong material or go smaller and slightly thicker but anything below 65cm square is too small to tie. Don’t be afraid to buy a large one and cut it in half to make it work. It’s worth it as it’s hard to find ones to love and you’ll use them so it’s worth it! The accessorize ones will be too thick once it’s over 22 degrees so I’ll halve them then and have two! X
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Luckily, scarves are in fashion this year! They knew we were coming! Don’t bother with Zara as too thick. X
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BUTTHOLES!!!
Docetaxel really does give you a painful bum. I was hoping to avoid it but on Day 5 today, I woke up not constipated and mostly healthy but then the floodgates have opened and it’s not fun but not the worst diarrhoea I’ve had.
Read around and loads of people seem to have ended up using Sudocrem or Preparation H. I’ve gone straight for the Anusol/Preparation H approach for the relief and it’s instantly feeling better.
It may be worth stocking up now for those behind me on this fun merry go round. X
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Hi, we are on the same treatment & treatment days. I have found my 3rd EC really hard as well. Monday to Wednesday last week I felt so ill, its the worst I’ve been so far during chemo & I’ve felt so sleepy, thankfully everything as calmed down but still feel shattered at a drop off a hat, however my lovely husband & son have loving passed on a cough that they both have 
I’ve got bloods tomorrow & hopefully if everythings ok my last EC on Thursday (I then move onto Paclitaxel) but this will be my half way mark 
Just off the phone from Ward 1 to make sure am feeling ok for Thursday & advised about cough, as long as no temperature, feeling fine & no shortness off breath its treatment as usual 
& she advised that how I’ve been feeling is normal as everything ramps up - great cant wait for the side effects this time round 
Hope everyone has a great week xx
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Day 4 Docetaxel
Feel like I’ve crashed and burned today, absolutely exhausted, sore mouth and throat, no taste, but not like EC , no sickness, done absolutely nothing all day .
Tender fingers and toes , so so tired 
Hi I’ve been of the radar this last few days, sorry if I dampened anyone sprits a few days ago this 3rd cycle has wrecked me. I never had sickness or diarrhoea as bad with other cycles, just feel like I’ve been run over by a bus and so emotional. I don’t even know myself. Fingers crossed it settles soon. As lot of you know my sister died suddenly last month and this last week or so my heads been all over the place. I think if I felt well I could cope or even try to occupy my head.
Please don’t let my rant dishearten anyone, I know I’ve one more cycle after this to go and I will do it. I have to so I can let you women whom have radiotherapy to do tell you what it’s like lol. I’m totally amazed at how well lots of you are doing, it’s never easy, so be very proud. X
Like some of you I’ve bought lots of head scarves but finally got some that aren’t too big or small.
I’ve copied the link
Pauline x
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Thank you so much for your kind words,it’s been a tough few days emotionally and physically. My dad called with me today (82)and he’s just finished treatment for bladder cancer a few months ago and we had a great chat and told me he’d never got through it without my help( crying once again) he’s such an inspiration and I know I can do this with all the great support I have. Postive pants back on lol xxx
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Good luck for your next one, sending Hugs xxx
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Ah, are you in Sonning? I’m in Henley… Are you also at RBH?
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I totally get you regarding surgery, I’m the same 15 sessions of radiotherapy which they said should be starting end of June beginning of July. I’ve a planning appointment this Thursday with radiotherapy ( different hospital) have you had any word about this xxx
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Is your mouth pain totally different to EC? I feel like someone has exfoliated my entire mouth and tongue with steel wool. So swollen and sore and no taste at all!!! It also hurts to chew and gums feel soooo sore!
I’m also bloody wiped out and toes and fingers feel all wrong. Ends of toes are really sore especially and almost a bit itchy sometimes.
Still better than EC though weirdly.
X
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Oh @pollyanna1 I’m so so sorry but I’m also pleased your Daddy told you that. You have so much on you. I’m not sure I’d even be upright in your situation. Most of us are struggling with just cancer without worrying about our Dads and dealing with such immense loss. I wish I could take some of it away from you xx
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