October 2017 Chemo Starters

[Sue_SLondon]

Well done Chaffinch & Karana, take it nice and easy.

Runnerbean & SueW - go v pillows!

Ali, really glad to hear you're feeling almost normal on Day 8.  Same for me, on Day 9. 

Big hugs xxx

[Chaffinch17]

I will be watching your posts intently Karana, because you are a few hours ahead of me. I just feel a bit spaced at the moment almost like when you have a drink on an empty stomach. Hubby is making my tea so that hopefully it will have time to settle before any nausea kicks in.
It is weird being hyper sensitive about what is going on in your body.

[karana23]

Glad you're home ok Chaffinch...I'm still feeling ok just dizzy with a headache and water tastes disgusting!! Feeling a bit panicky about wot I shld be doing if anything!!xx

[Runnerbean]

Evening ladies, hope you are all OK and any side effects are not to bad. I’ve bought myself a v pillow and blanket today ready for Friday and am actually quite excited to try the pillow in bed tonight, it’s the most excitement I’ve had for a while! Having read your posts I’ve made a note to write down any instructions for taking medications as I don’t always remember at the best of times. Also got an appointment with the wig lady tomorrow, hopefully she will find me something suitable xx

[Chaffinch17]

Back home already, they had me down for 2pm & 3pm so she had been calling for me for an hour, she was surprised that no one cheered when I went in!
Well behaved vein after hand in very hot water and everything went in very quickly. The anticipation was definitely worse than the reality for me. They are very good at putting you at ease. My chair was huge, ok I'm quite small but it really was wide, hubby just got a stool!
Feel a bit woosy but otherwise ok at the moment. I wouldn't have wanted to drive though.
Nearly didn't have time for my tea and gingernut.
Waiting for side effect bingo now...
Felt a bit sick after F went in but think that might have been a bit panic attack related because I was fine after that.

[Ali49]

Well done Karana and hope all goes well Chaffinch. Take it easy now for a day or 2 and see how you feel. Get your sweets ready, take your tekp and not down how you feel for next time. I am scared to say ot but i have almost felt normal today on day 8. I have cooked, baked and shopped. The joy is in the mundane everyday thongs that we take for granted xxx

[SueW]

No appointments today so that’s always a bonus lol x mri scan tomorrow
I have been shopping and done some Xmas shopping and got curry ready for tea
Keeping busy keeps me distracted and out of mischief ha ha ha x

[Meesh73]

Well done Karana glad things went well for you. Know what you mean by the sheet of paper telling you about the meds. I had to call the nurses today and ask them to clarify. So if you're not sure just do that. I too had a bit of a headache and its still coming and going today. Hope your recovery is ok, I've been just sitting watching TVs today but feel ok. Might try a short walk tomorrow if I still feel ok.

[WhyteFawn]

Well done Karana take it easy today. Good luck chaffinch I hope you're not delayed. Let us know how you get on.

Hi SueW yea I'm feeling good thanks. Been for a walk this morning which was nice. Getting very autumnal now. Done some more colouring in and watching films. Probably should re-enter the real world at some point.

How's you Sue?

Cassie x

[SueW]

Cassie hope you are still feeling well as day has progressed xx

[SueW]

Karana well done you x chaffinch good luck x

[Chaffinch17]

I'm just off now, expecting a delay appointment is 3pm. Already have a headache.

[karana23]

Well I'm home and it all went quite smoothly...bit of trouble getting cannula in but that's quite normal for me!!  I've put my sea band on but feel ok at the minute...just a bit of da dizzy head!!!  Just got meds out of my bag and all quite confusing....a sheet telling me what and when I need to take stuff may have been helpful but got nothing!!!  Been told to take a anti sickness (Ondansetron) later today and start on Steroids (Dexamethasone) tomorrow then have Domperidone & Dioctyl if I need them!!! I'm hoping I've got that right??!!!  Just had my first bright red wee!! 

Hows everyone else doing?? Xx

[WhyteFawn]

Hope everyone is ok today. Good luck to those starting chemo today. It's very daunting going into that first appointment but remember it's the start of getting rid of that cancer. Chemo drugs are your friends. That sort of drunk and disorderly ones that always seem to get you into trouble. But friends none the less.

I slept well last night and feeling ok this morning. Still tired but feeling a lot more alert then I have recently. Taking my 3rd injection shortly when might go out for a little walk in the fresh air.

Cassie x

[SueW]

Morning lovely ladies
Just been reading through and thanks for replies. And advice 👍
Good luck to today’s new starts and let us know how you got on later
Hope everyone had a great day x
I just got out the shower drinking coffee from my travel mug not even dressed and the first thing I do is pick up my phone and come in here
I feel like you are all one of my lifelines like on who wants to be s millionaire you are my CALL A FRIEND xxx💕

[Meesh73]

Glad you're feeling better and got your meds sorted out. It's reassuring to know that those of you who had treatment last week are coming out the other side now. Guess we're all living in 3 weeks cycles now!

[Ali49]

Meesh i have messaged you xx

[Ali49]

 What a difference a day makes!! Day 8 and i have had a great sleep and feel almost normal today!! I got mouthwash and gel for my sore mouth yesterday and cyclizine as a diferent anti sickness to don peridone. They have done the job. My mouth feels better and i havent neded a tablet since yesterday afternoon. Thank You God xxx this time last week i was getting ready to go for my first treatment!!!

[Meesh73]

Thanks Ali, they've given me a sheet with everything on and told me take the lot. It also shows Domperignon two tablets four times a day?! Did you take all your steroids & ordansetron together or space them out?

[Ali49]

Good luck everyone starting today. Meesh the donperidone where my extras and ondestron (or whatever they are called).were the ones i had to take. You can only take 3 donperidone in a day so take care with them. Ring your nurses and check how you should be taking them. Big hug xx

[Meesh73]

Good luck today Karana and mikala hope all goes well, we'll all be thinking of you! 

[Meesh73]

Morning everyone! Had a good night probably thanks to the lorazepam, although the Epsom salt bath and chamomile tea made a good start. I've woken this morning to a bit of headache, slightly dizziness and blocked nose. I've taken my steroids and also 2 of the Dom perignon. I'm also supposed to the ordansetron twice a day but not sure if I should taken now with the others, what does everyone else do? Had some porridge & stewed apple with cinnamon. Now just chilling on the sofa with a cup of tea.

Chaffinch, yes I'm on fecx6 like you. You'll be fine I think it does take a bit longer the first time as they have to through everything with you and also sort the cold cap out to as I think you said you were having that? I took 2x ibuprofen and 2x paracetamol an hour before my appointment which I think worked, but take some with you in case you get delayed. My appointment was first thing so I do have less chance of delay. Good luck hope all goes well. 

[CK]

Hi Reeboot
Yes, theres been a study and seminar by Christies about the 'F' and they are starting to leave that out now as its not really doing anything more but may give off more SE!
Too right, do nothing for the first few days after trearment and then concentrate on building body up for next treatment.xx

[CK]

Goid luck Karana
I was calm but a little anxious which is normal. You will be looked after and talked through the process.
Are you having cannula? Remember to take some nibbles and wear loose clothing and sleeves and maybe leggings in case you need the loo and also as you are sat for a while.xx

[CK]

Hi SueW
Yes, always take someone with you for company, and better if they drive you too. They also get brews and tell them to take a magazine and nibbles. Both chemos passed quite quickly with my mates being there and rhey take your mind off it with the chit chat. I was chatthng to alk the others too, whereas I met a lady yesterday and she said no one speaks where she is being treated. I can see you chatting your head off too.xx

[karana23]

So the day has arrived for my first lot of chemo....I feel relatively calm and that's not how I expected to feel?!  Anyone else starting today? Now gonna try and have a piece of toast....appointment is 10 am xx

[Reboot]

Thanks CK, when he said he was stopping the 5FU, I remember having seen someone on here only on EC so didn’t worry too much. He said the same, and that they don’t even give it in the US.
I hope it treats you well too xx

[Reboot]

Hi Meesh, I think I did do too much (physically and emotionally). I had my first cycle on the Monday and when I woke up on the Tuesday, apart from a little nausea, I didn’t feel too bad so got on with housework etc. I then crashed just after lunch and didn’t come back from that until the end of the week at least. We hadn’t properly planned our support for those first couple of days so I ended up worrying about my husband and my mum and my kids, which made me feel worse and which I now know to sort out beforehand next time! I was also worrying about why I couldn’t do more!!
Next time I’m doing absolutely nothing!!! Bring on the puzzle books 🙂🙂

[Ali49]

Good luck tomorrow Chaffinch. Remember all the good advice thats been given to us. Iwill be thinking of you and sending you a hug xc

[Chaffinch17]

Good to hear from you Meesh73. Hope that you continue to do ok. Am I right in thinking that you are on 6x FEC like me? I start tomorrow afternoon.
Timekeeping doesn't seem to be a thing at my unit so with a 3pm appointment I expect to be there for a long time!

[Meesh73]

Ha ha, I just had a soak in the bath and left them on as I was worried about taking them off. Didn't want to get them wet so kept my hands out of the water lol! Now going to have chamomile tea before Dr foster then the lorazepam and off to bed! If I last that long the bath and chamomile might finish me off.

[WhyteFawn]

They are fabric and I do take them off to shower then put them straight back on lol

[Meesh73]

SueW yes they go through everything and then they go through everything again on the day.

[Meesh73]

Cassie, I can understand that, I'd be worried to take them off too, but presumably the sickness doesn't last the whole cycle? Did you take them off when showering? Know it sounds a stupid question but mine are fabric so would take a while to dry out, but don't want to be sick (if they are working)!

[SueW]

Meesh I agree they all said they want to come as they feel helpless and like they can’t do anything to help
I shall ask them to cook stews and cottage pie lol tell them that will be a help.
I am meeting nurses Tuesday so expect to go through everything then in advance of Friday
Thank you for your help ladies big hugs everyone and good luck to you all with treatment coming up xx

[WhyteFawn]

I've been wearing them most of the time. Was too worried to take them off lol. Might wear them tomorrow and take them off in the morning. I haven't taken and anti sickness tablet since Sunday night and haven't felt sick at all so I might chance it and see what happens

Cassie x

[Meesh73]

Hi whytefawn, how long are you wearing your travel bands? 

[Mikala]

Thank you...fingers crossed it will be a case of a few hours x

[Meesh73]

I went in today at 9:00am and was home by 13:30 but I had the cold cap which makes the treatment longer. As you're not having that it'll probably be much quicker but I think it depends if you get delayed or not. Some of the others who've not cold capped would probably have more of an idea.

[WhyteFawn]

First session might be longer as they have to run through information with you. Length will depend on how long the wait for appointment is. My first appointment was 8.30 and I think we left at about 2. Though should be less next time. I would say assume you're going to be there for the day and plan accordingly. They're very good with cups of tea and biscuits lol

Cassie x

[Mikala]

Hi again, providing things fo to plan, how long does each session last...my apt letter says 3-4 hours....is this right? x

[Meesh73]

Sometimes I think it's for them too so that they know you're ok and they feel it something they can do to help. You're lucky to have lots of family wanting to go with you. I don't live near my family (although they've said they would come anyway) or close friends but I have been so surprised and really moved through this whole experience that many other people came to see me after my surgery and also said they'd go with me if OH doesn't want to go. It is truly humbling.

[WhyteFawn]

Yeah my husband came with me for my first. My mother in law is coming for the second. I think i talked to the nurse most though whilst the drugs were going in.

[SueW]

Thank you 😊 I got a queue of family wanting to come to stop me being bored they said lol
They fail to realise I am okay in my own company as long as I have a book to read and I can talk to anyone (including myself 🤣) x

[Meesh73]

Yes they can, my OH sat with me the whole time and we just about managed to do a crossword (him reading the clues out to me) which was nice especially as he hates puzzles & games. Most of the rest of the time the nurses are in and out. If you're having fec then the nurses give the f&e parts by syringe into your line, then leave the c to drip through.

[SueW]

Ladies can someone sit with you whilst you having chemo ?
Sam good luck for tomorrow
Thank you all for continuing to share xx

[Meesh73]

Patchwork, I don't have much luck with thermometers either. Hospital provided mine but the first one didn't work properly, the next one is fine, but the one at the hospital broke today when they used it on me oh and so did the first cold cap I tried! 

Sam34, good luck with treatment tomorrow and Thursday, the cold cap was really ok after the first 5-10 mins. Wear some layers and take a blanket and also a scarf (although they did give me some towels). Also make sure to go the loo before you start, 3 hours is a long time! I did but then needed them to unhook me after my chemo so I could go again. Although it's 3 hours i found it goes quite quickly, maybe because everything is new. They also came round to serve lunch about 30 mins before the end so that also took up time.

[Meesh73]

I could've done with a v pillow when I had my surgery as I found it uncomfortable laying flat. Instead I managed with 3 pillows and that was ok. Wasn't given any injections just given tablets to disolve in water in the morning (something beginning with D, demezarole? can't be bothered to go check the name) plus ordansetron (which I've just taken with some veg soup), lorazepam for the next couple of nights and then the Dom perignon one. Still feel ok at the moment just have a bit of a headache, probably from the cold cap but it's not bad enough to make me want to take anything. Last dr foster tonight wonder if I'll be able to stay up to watch it. Not been all that impressed with it but need to see it through to the end now! Thanks everyone for the great advice it's nice read experiences of those a little ahead of me. Hope you're all doing ok. 

Reboot ok did you try to do too much to start with?

[CK]

Patchworkgirl
The Tommy Tippee digital thermometer from large Tescos is good...and sometimes half price!
A barh soak wirh Epsom salts is good for rhe aches and pains. I was in such pain from aches last Saturday, I soaked that night and Sunday was gone.

Reboot
Im on 3xECs first. I asked why not FEC and it has been researched by Christies that the F doesnt really do anything more than EC but gives more SE effects so sooner or later the F will be stopped in most hospitals.
Hope it treats you better.xx

[Sam34]

Hello ladies

Not been on for a few days been getting myself prepared for starting chemo tomorrow and Thursday

Hope your all doing well x