September 2017 Chemo Starters

Going through breast cancer treatment Chemotherapy monthly threads
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Hello all

Day 17 and for the first time I woke up feeling ok!  . I’m hoping round 2 will be easier, and that it’s just the pulmonary embolism that has slowed my recovery. Very impressed by those of you who have gone away- I’m way to weary for anything so ambitious!

I am moulting more than a cat today. I guess it solves the issue regarding whether to shave at end of round one or whether to wait to the bitter end.  We are going to make an event of  the shave on Sunday with friends.  Fortunately my wig arrived yesterday (from Simply Wigs online). I bought a few to try and posted the ones I didn’t want to keep back today. The Post Office lady asked what they were, and when I said wigs she nodded sympathetically and then I had tears flooding down my face (I had no tissues)! The other package I was sending was my long hair (chopped off 4 weeks ago) which I was sending to Lilttle Princess Trust.  The PO lady then asked if that was hair too.  I could only nod!

I can empathise with the kids going off to uni- my teenage daughter (I have a big gap)  has gone off to London.  It has not been a great summer for her (or any of us) so in some ways a relief but hard for her too to be away from us. Younger kids meanwhile are enjoying pulling out my hair!

  Jo x 

 

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Hey ladies

 

I’m day 2 of chemo 2 now and doing better than last time!  I was much more worried, emotional and even grumpy going into the ward this time, I think because I know more about what I’m in for.  However it wasn’t as bad 2nd time round for me so maybe this will give some of you some hope!

 

Mrs Meow - totally relate to being more worried second time round - me too - but once it was going in I felt better and have felt less groggy this time round.

 

Jow - I’ve realised that a lot of how I felt physically for my first chemo was as a result of the blood clot and the clexane seems to have done it’s trick and made things much less painful this time round - hopefully will be same for you!

 

 

Pre-surgery ladies - I had a mastectomy with no recon in July and would recommend reading the great blog on www.draindollies.co.uk on what to pack theyarenottwinstheyaresisters.wordpress.com/what-to-pack/  and would add to the list a long neckscarf in case you’re too uncomfortable to wear your bra when you leave the hospital.  I ended up with my drains for 10 days and it was just too painful to put a bra on over the drains so the neckscarf was perfect for covering up my chest and maintaining some dignity, especially when i have only one boob!  I also would swear by my drain dolly bag which was the perfect size and length for keeping the drains out of the way if you don’t get one from the hospital, cling film to cover your wound dressing so you can keep it dryer and have a proper shower and finally my Jen’s friends (on fb) heartshaped pillow (it’s a charity and you just donate the postage or anything else you want to add and they send you one.  The pillow is very useful for the first few weeks after surgery to help support your arm until you recover your mobility.  

 

Lots of love

 

Geordie x

 

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Thanks for the tips and the link. I haven’t had my surgery yet so it’s good to know these things and will prepare for it.

Cath and chasanddave, good to hear that you feel OK after the 2nd chemo, finger cross it’ll stay like that.

Jow, I found the 2nd chemo is easier as we kind of know what to expect so we are less anxious and worry… I hope yours will be easier too. Glad to know that you feel better today and just take it easy to yourself. Plenty of fruits and vegs while you are able to eat and drink lots of fluid.

Have a lovely weekend ladies, enjoy the sunshine. Lots of love xxx

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Chasanddave, Vee, mrs meow and Geordie - how are you faring today? I’m feeling very horizontal and hazy. Less nausea so far, so emend plus ondansetron seems like a good combination. Chest aches today - might be heartburn I suppose? So weary!

Jow and Ck - hope your kids have flown confidently from the nest and you don’t misss them tooooo much.

Fairy dust - my head looks like a moth eaten moleskin! So patchy! I’m sure we’ll look better once we’re smooth peachy heads!

Fingers crossed for all next weeks round twos.
Off back to sleep now!
Cath x

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Hi Cathysid - yes I’ve just reverted to horizontal too! Just weird and wobbly today but no sick which is bloody great! That combo has worked for me although I’ve finished my 3 day special:  Steroids, Emend & Ondastrto - whatever, so just on my cyclcizine now! I’m so proud too tat I did my first injection myself today - easy peasy! Another bit of independence back!  Hope you - and all the other ladies there - are managing ok. We’ve got to keep remebering that this assualt on out body is good for us!! Bonkers way to think, but true!

I’ve abandoned my youngest to the X-box today so feel a bit guilty - but no doubt, he’s loving it! 

Take care to you all, Jacqui xxx

 

 

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Hi Cathysid 

 

Glad youre doing better on the nausea this time! I’m having a lazy day today too. Think it’s for the best when our hearts are already straining to pump all those chemicals round our bodies to make us better! I find that drinking even more water helps me with the occasional chest pain but please keep an eye on those and ring your helpline if they don’t go by tonight, just in case it could be a clot (more likely if you have a PICC line or port). 

 

Geordie xx

 

 

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Hi ladies, Cathysid
I held the tears in when my daughter left for Uni this morning and they came pouring out when I went for the flu jab and saw my nurse and doctors!
I then felt rather good After and my 81 year old mother wanted fish n ships so quite happy with her seniors £5 portion of fish n chips and gravy…and there was enough for 2 of us. We are borh napping after that.zzzzzz

248

Hello ladies, nice to hear the stories how everyone’s little uns are coping…and the funny names they find for us. Mine decided I look like a man in my beanie and should be called Bob (tho I was upgraded to Jeff later in the day!?!). My scalp is so sore, can’t wait for it all to finally fall out, attacked it with the scissors to make it as short as possible to help! It seems to get everywhere.

My kids have had a few days on their tablets Jacqui. I ended up catching their cough this week, we all stayed in my bed together in the end…it does no harm once in a while and there was peace!

Good luck with your shave tomorrow Jo! X

It’s good to hear the reassuring words for round two and how the meds have been adjusted to help with the nausea (hope your chest pain has eased Cath). Mines next week so just trying to build myself up as lost weight last time.

You are right Jacqui, Geordie, I feel almost impatient because we need this treatment to get better…I so want to feel this thing shrinking if I can!! Tho I’m not looking forward to the drain after the mascetomy having reading the thread lol x but the information is so useful, thank you ladies.

Sleep tight everyone xx

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Evening ladies,
I’m new to this forum thing, so here goes!
I’m due to have my 2nd chemo on Tuesday, and feeling apprehensive about it as the nausea was pretty bad fist time round, although been prescribed better anti sickness this time, and reading through this thread it seems to have worked for some of you so feel slightly better about it.
I’ve not started shedding yet although my scalp is starting to get sore, but I took the decision to shave it short before the chemo started and donate it and raised a bit of money as well as taking some control back.
Anyone else got a picc line in? I can’t adjust to mine, and am constantly afraid of dislodging it.
Xx

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Welcome to the place no one wants to be but we are so we got to make the most of it. Sorry I can’t comment on your question I have had 2 surgeries but not started chemo yet 1st onco appointment Monday but I am sure one of the lovely ladies wil answer you soon xxx

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Good luck with shave day Jo… you are beautiful still and your family and friend surrounding you with love and care.

CK, I hope your daughter settle well in uni. It must be very hard to let her off. Big hug for you xx

Jackie, well done for your first injection, we are becoming thougher each day…

Michelle or shall I call you Jeff ? :-))
Yes, try to catch up with your food while you can, your body need the energy for your second round. I read about B12 in food is good for immune system and boost our energy level, e.g. Egg, cheese, fish…

Fairydust and Michelle, you are so brave with your scissors… you made me laugh about the chest board, I can imagine lol…

Cath, moth eaten moleskin !! lol… you girls are great at describing your patchy head.
I feel quite lucky with the chemo bingo. So far I only had slight nausea, indegestion and constipated on the first chemo. This 2nd time round I had slight nausea for first 5 days, but nothing else. I knew this time that I will have constipated when I’m on ondasetron and steroid so I had lots of plums and fibers in my diet, Brand and Weetabix for breakfast, lots of greens. And my number 2 is fine… yeehaa !!
My BC nurse suggested you wrote down how you feel each day, even if you feel great, so you can look back on your diary and prepare for your next round of chemo. It also help to prepare your activity.

I found this Picc line quite disturbing as I feel I can’t do exercise, the thought of it may moved or sweating etc… today my 9 yrs old son did his triathlon in Hever castle and I had to sprint to try to spot him in places and I totally forgot about my picc line… lol… thanks goodness it didn’t come off !
Had dominos pizza while watching Xfactor tonight.

And I have good news, my lump is definitely shrinking after the 2nd chemo, so yes ladies there is the light at the end of our tunnel, keep going and chin-up xx

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You ladies are all doing so well and making me feel better about round 2 chemo which for me is Wednesday - Hair is thinning and head feels like it has been yanked out even though it is falling of its own accord- I was interested ChasandDave that you were wobbly as I was so dizzy yesterday - but didn’t really feel ill or sick just couldn’t turn or lift my head. This coincided with our break in the country so made sure I didn’t walk on any cliffs - managed 7 km so the energy levels are great. I have had surgery already wle and node clearance in June and July and the wounds have been troublesome since - and tbh they are the main thing slowing me down still so even when I feel great from chemo am reminded that have had pain every day since June 1st - what a drag! Am getting there though. Have a good night all - am determined to keep some Hair still on my head for Wednesday as my BCN said it would be all gone and I want to prove her wrong for a laugh!

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Welcome Fordie,
Well done for donating your hair. Hope your nausea won’t be too bad after your 2nd chemo. I had domperidone, ondasetron and dexamethasone, and seems the combination of those work well for me.

I had my Picc line put in before my 2nd chemo as I have phlebitis after the 1st one. I understand how you feel as I too still very cringing thinking about it will dislodged etc etc. But the nurse reassure me and as long as we keep it dry it shouldn’t be a problem. Just keep an eye of the symptom of infection and blood clot, and call them immediately if you do spot the sign, and also if you find the bandage come loose. I prove it today, that the picc line stay in place, safe and sound, after I sprint chasing my son doing triathlon. I’m not sure if the sprint is a good idea tho, I was totally forgot about the picc line then. So I guess it’s all in our head, and it takes time to get use to it.
Good luck for Tuesday xx

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Morning ladies. I am trying to get myself a little m0re focused today - realistic goals (ie. get a shower, get out in the sunshine) to shake my weird wobblies off! So in awe ogf those of you sprinting! That wasn’t ever on my agenda  - pre chemo! Jow - hope your brave day comes off too - I’m with you on that! Come on girl! You too Mrs Meoiw - let’s hope today we feel less fragile - deep breaths!

 

Michelle/ Jeff - thanks for admitting/sharing that your kids have been abandoned to tecnology too! Makes me feel better already. My husband is good all round tbh, but he’s more in control of cooking/ his own work, so  our 2 boys are doing their own think for now. You’re right, it won’t do them any harm! They’re being fed (not washed tho!)

 

Welcome to Fordie - sorry you’re here but a very warm hello to you. I too donated my hair which gave me a huge boost, so I know how you feel. Being bald isn’t so bad I’m finding…I had a bit of a weepy yesterday, but I think it’s more to do with drug overload and general groginess than hair loss! I welcome the smooth siny head - I’m still a spiky velcro spud at the mo! (Good luck today Jo with your shave - really woudl love a gallery of us all! What a line up that would be!)

 

Fordie - Please hang in there with the PICC. I would say after 3 weeks I was feeling fine with it - not even aware of it sometimes now, as other side efects take over, so for me, it really was mainly all in my head. I think too it does sometimes depend on how tight the dressing is, so I was sometimes uncomfortable with the positioning/ tightness if the plaster rather than thah actual picc itself, if that makes sense.

 

You are all bloody wonderful btw and helping me tremendously with your shared woes and giggles.

Love to you all

Jacqui xx

 

 

 

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Hi everyone. I’m a late starter to this forum as my chemo is due to start on 28th September. From all yoy lovely people who have stsrted recently can you recommend anything to take with me for my first appointment?

Many thanks
Cassie x

256

Hi everyone,
I’ve never actually posted on a forum before so I hope I’ve got the right box ?.
I started chemo on 28th August and just had my second FEC session this week. Hair is thinning nicely lol!
For those just about to start, everyone is different and has different side effects. I’m blessed to not have as many side effects as they tell you lol! Although it’s good to be aware of them.
I had a PICC line popped in which I’m still adjusting to, they popped it in too long so was tickling the heart.

So just to say hi to those on the same journey, it’s nice to have people to bounce questions off of. Hope I haven’t rambled on too much.

Keep smiling x

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Good question Cassie. I start on Wednesday 26th so would like to know too please. I had a bad day yesterday. Feeling scared of what is to come and wanting to run away! I am better today and trying to stay level headed xc

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Hi Ali,
The main thing is not to let your mind take over, it can create circumstances and scenarios which haven’t happened. I found it easier to enjoy the day I was in and when I got to starting chemo, I found I had the strength to deal with it. Sounds easier than it is I know.
Don’t read up on the side effects just yet.
You will be fine chic x
Jo

259

Hi Cassie and Ali - not very technical but the one thing I needed when I went in for the first chemo was a snuggy blanket! I am always cold and it was lovely to snuggle up - and good for the veins too! Also I needed food as we have a long drive to hospital and had missed a meal. Sometimes it feels good to me to demedicalise things and just look after my basic needs haha. Very good luck this week I completely understand wanting to run away - I still do - take care xx

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Thanks for the very warm welcome ladies,
It’s helped just reading through your comments and knowing others are going through similar problems to me.
Jow- yea I agree about the picc being the lesser of the evils, at least I’m not coming home sore and bruised every time they want to find blood.
Chasanddave - yea half of the irritation is from the dressing and changing of it. I am starting to get used to it but still very cringy.
I think I spoke too soon last night about the lack of hair loss, I’ve definitely started shedding this morning. I’ve ordered a sleep cap (which is something I’d never thought about) after reading the earlier comments about Velcro head in bed so hopefully that will help.
Xxx