February 2017 Starters

[zena75]

Good luck today jo we will be thinking by of you hunny ...💗
And Ann too Huns I hope you get all info you need and the fasting helps ..,let us know ❤️ .
And all onc types get in fast ( how annoying that must be , more Waiting and worrying ) ..
I had bad night again . Not much sleep .. i called the bat line number they give you and nurse said next meeting discuss it all .. but it's just a general feeling bad all round so no idea what they could change ..
I'm so sorry I hate to moan ., I am a complete wussy so please don't worry Ann sue and Maria and others that are coming up to the start ..
I'm sure it will get better for me .🤞🤥
Jojo il try a antihistamine today as that cramp feeling has kicked in in my body ( oh the joys of chemo )
Need to get out of my bed and wash it soon as it will get up and walk away from me soon .. last wash was last Monday and I can't bare longer than a week and my sense of smell is heightened due to nausea so I feel minging ☹️..
Gosh could I moan anymore.. forgive me ladies xx
Big hugs to all
Z x

[Jo C]

Thanks ladies. It always makes me feel better coming on here.

I'm ready!! Preparing for duvet days and potentially feeling like crap 💩 but it has to be done.

Mrs C...a plan with make all the difference to you. The waiting makes everything feel worse but at least your onc will have as much information as possible so your plan is the best for you. xxx

[mrsorangecat]

Hope it goes well at your pre chemo session Ann and Zena and Jules, really hope you're feeling better? How are you doing Maria, Jojo, Sallyann, Taylor, Sparky and anyone else iv missed off?

Sallyann, have u had any news on your oncotype results yet? I'm pacing and climbing the walls waiting for mine. If anything else, I wonder if this ordeal will teach me to be more patient over silly things in the future... I can only hope. Maybe a letter will come today with an Oncology appointment...I need a plan, im better with a plan.

Gentle hugs everyone xxx

[AnnCann]

Good luck Jo😀.... hope all goes well today. Look forward to hearing from you later. Zena, hope you had a good night and feeling better.... xx

[mrsorangecat]

Best wishes for today Jo. I've heard good things about fasting and drinking ginger too, big hugs xxx

[Jo C]

Glad you've arrived Ann. I fasted yesterday for my chemo today. I hadn't planned to but I realised that it was lunchtime and I hadn't eaten since the previous evening so thought I'd give it a go. I have been drinking lots of fruit and ginger infused water. Will let you know how I'm doing later. It's worth a go and I've heard good things about it. Will be taking snacks and choccy biscuits with me today...just in case!!

Zena, hope your feeling better hun xxx

[AnnCann]

Just checking in ladies... read your posts.. I am now in Cardiff with my family ready for my fight... I don't have broadband so my posts for a couple of weeks may be limited. ZENA, sorry you are going through it at the moment... be strong we are with you. I am dreading the nausea too.... I am planning a light/fasting diet day before and day of chemo hopefully that will help... we will see if it works.. hugs and lots of love xx

[atomicjojo]

Oh Zena what a horrible day for you.
This is exactly why I'm dreading the FEC. But you will get better my love. I suggest keeping the diary of symptoms/SE's so that you'll know what days are good days for the next cycles.
The antihistamine can help with any aches that you have if you have them.
Can you stomach a smoothie? Or even a piece of fruit? Or maybe you have some ginger tea?
Chemotherapy is a horrid thing to go through but go through it we must. My GP said to me that following orders of the onc is like flying. Of the pilot says put seat belts on, you do. If the pilot says we're coming in to land you trust that you'll come in to land!
This too shall pass!!!!

Jojo xxx

[zena75]

Ok il ask thanks jo x

[Jo C]

Sorry you're feeling so rubbish Zena. Hopefully your team will tweak the mess for next time. I've also heard that Lorazepam is good for both anxiety and nausea so it might be worth chatting with your GP. You could perhaps use it in place of diazepam. Big hugs xxx

[mrsorangecat]

Zena, im so sorry you're feeling so rough, sending u a really big hug. Rest loads and I really hope you feel better soon. The Onc team may be able to change meds etc for next cycle to make things easier for you xxx

[zena75]

Thanks Maria
I don't want to worry you guys about this either.. I am really hyper sensitive to nausea so don't worry too much everyone.. I knew I'd be like this really..
yes hope it changes tomorrow xx

[Maria12]

Zena sorry your feeling so rough , im so not looking forward to all this as im hopeless at just lying around .sounds like a day in bed with everyone spoiling you is called for . Hope your little better tomorrow xx

[Maria12]

Jules that sounds like a very good idea regarding the spread sheet im hopeless at remembering everything normally .blame my age for that lol .i hope you enjoy your few days away x

[zena75]

Hi all
I really struggling today . Feel dreadful. Very nauseous and aches and wobbling. Can't get out of bed ..
Jojo shall I take an antihistamine like you said ?
Hard to tell what SE is coming from what really ..,
This FeC is vile - does it get better?
Last emend this morning and the smell of the oven downstairs is already making me feel sick ..
God I hate to moan sorry I'm just feeling so awful xxx

[Jules1]

Hi everyone

I'm finding this forum really helpful. It's good to read your tips etc.

I made myself a spreadsheet for my temperature, water intake, each drug and injection, excercise and bowel 'activity'. I keep it in a small basket with all the tabs and theromometer and I feel in control.

I've also done a spreadsheet of all the appointments and colour coded low immunity days etc. So I'm planning a few days at my Mum's on my 'green' week - she lives by the coast in West Wales so maybe some nice sea air will do me good.

Hope you all have a reasonable Sunday and are ready for appointments this week.

Onwards and upwards!!!

Julie xxxx

[atomicjojo]

Morning Taylor!
I can't advise about cold capping either (I wanted the chemo to find every nook & cranny!)
I started to lose my hair 3 weeks into my first chemo. And it hurt! Physically! So my OH shaved it off. Some stubble that remained & continued to grow throughout treatment. That stubble is now 1inch long. The new hair is growing but slowly so I have a man's hair 😁
Today I'm going to brave not wearing anything on my head when I pop to Sainsburys. The main problem is its blimmin cold! Got my slap on & some bright lippy so I'm not mistaken for a man...
Sad thing is I'll probably lose it all again when the FEC kicks in. But it does show you that everything will be ok eventually. I just need to be patient (a new skill for me)
Keep well ladies, keep us informed!

Jojo xx

[Jo C]

Ann, hope you have a good journey to Cardif. It'll be good for you to be with your family. I'm lucky to have mine close by and a houseful of children. Well my eldest is away at uni but is coming home next weekend to visit. So looking forward to that.

Have a safe trip.

Jo xx

[Jo C]

Hello ladies, I'm having trouble already keeping up so will have no chance with chemo brain!!

Welcome Taylor...I always feel strange saying that in this forum because I'm sure we would all rather not be here! I can't help with cold capping either I'm afraid because I've decided against it. I thought long and hard but decided I would rather be in and out of the ward as quickly as possible and thought that my hair would be a mess during treatment so I would be better starting afresh with new growth. I've got a wig that looks good and I like it and got my hair cut short a few weeks ago. I'll probably shave it next week. I would rather take control than wait until it falls out. I've also been wearing my wig so that I (and others) are used to it before I need it. It makes it feel more my choice if that makes sense.

I have friends who have cold capped. One of them lost her hair but the other two just had thinning. My friend who lost her hair felt it was worth doing because her hair grew back quickly. I guess I just wanted an easy life and am happy with going short and making do with headwear for a few months. It's definitely worth a go if you're desperate to keep your hair. Do let us know how it goes. You might inspire other ladies to try.

Hope you all have a good day. Zena and Jules, hope you guys are feeling well today.

Jo xx

[Maria12]

Hi ann , assuming everything goes to plan surgery should work out around july time ( so hoping for a not so hot summer this year ) .im having chemo 0nce every 2wks , 8 sessions which takes me to around may then they said so longs its done what it should , i have a month off then surgery x

[AnnCann]

Morning, my apologies Taylor I didn't welcome you yesterday.... I can't help with the cold capping and not sure I will do it yet.

Well I need to get myself into gear and to Cardiff... zena and Julie hope you have a good day. JoC good luck for tomorrow if I don't get a chance to catch up later.... have I missed anyone? Have a great day? Xx

[zena75]

Just taken diazepam so excuse - pre and allowed guys .. and any other stupid prediction texts ( I'm blaming that anyway 😬😉) x

[zena75]

What a lovely message Ann , I'm so sorry for all this in your life it's so awful, we all know and are here when you need us ..
Yes you can take and do someone to Per chemo I went alone and it was ok but did wish I'd had someone just to squeeze a hand ... also we were aloud someone in first chemo session too but not after as it is a busy little room and very guess people including me will want privacy from now on , hair etc ....
Don't offer cold cap in Cheltenham yet ( not like posh Cheltenham to be behind) but I hate cold so wouldn't like it I think.

As you can see I'm up again now .. feeling sick a bit and weird strange body feeling. Not horrific just uncomfortable and achy and strange ..
I guess it's my body trying to deal with this stuff inside me and not quite knowing how to make me feel ... it's like it's working something out and try's my to decide whether to tell me it's ill or not .. very odd , but doable and good kicking cancer feeling as my lovely friend LL keeps telling me ..

Welcome Taylor and
Sorry can't help with cold cap but anything else just ask us / me xxx
Good luck for Monday Ann and then tues if you don't come back on in between Huns ..let us know when you can xxx
And sorry it's ages Maria - is that op recovering or just slow hospital ? Xxxxx

[AnnCann]

Hello lovely brave ladies,  

Maria 12, Thank you and good luck to you too on the 8th.  Do you have a date for your surgery yet?

Julie, thank you for your lovely message.  A fellow country woman, how lovely and looking forward to getting to know you. I am from Cardiff originally and after 40 years I am going home.  I know St Fagans and I am planning on buying a house in Rhoose Point just by the sea with lovely country walks close by.  I am moving in with my parents for the time being as they live in Whitchurch Cardiff, just a mile away from Velindre Hospital where I will have my Chemo and Radio Therapy treatment. To say I was scared would be an understatement but its got to be done I suppose. It's encouraging that you did not find the first Chemo session too bad.  Did you cold cap?  I am not sure whether I will do it or not.  I will see.  I am not very good at these forums but I will do my best to keep intouch.

Mrsorangecat, thanks for your lovely welcome I have been "watching" in the background for a few weeks.  This site is amazing for the support it provides. Hope your mum's tea party goes well and you enjoy the cakes!

Jo C,Thanks for your kind words.... In my 60 years I can honestly say I have not suffered with anxiety.  The past 3 years I have been so anxious for one reason and another and now this!!  I will try to keep coming back on the site but I do find it hard to keep up.

Zena75, what a brave lady you are. I have read some of your posts on other threads and was pleased to see we are Chemo buddies.... I hope to be as brave as you over the course of the next few months.  My first Chemo session will be next Thursday 2nd Feb .  I dont know anything yet but I will on Monday when I have my Pre Chemo session.  Can you take someone with you to these Pre Chemo meetings?

Apologies if I have missed anyone I will catch up soon I will be travelling to Cardiff tomorrow to start this journey none of us really want to be on...... but we can do it together... :-)).  

Jules and Zena hope you both have a good day tomorrow.

Hugs for you all 

Ann xx

[Taylor85]

Hello everyone- I'm starting chemo inn wednesday and having Fec-T. Planning on cold capping and just wondering if people who are cold capping or are going to paint their hair or tie it back at all? Or is that a no no? Would obviously be loosely tied back

[zena75]

Ok il take temp daily then ? It's gone from 36.5 to 36.9 before chemo so I have a base reading ..
don't want to go in .. so good tip thank you .
So much isn't there .. 😩

[atomicjojo]

Zena I remember that hungry feeling. Such a strange one but it developed in to indigestion later on for me so was prescribed omeprazole...more drugs!
The filgrastim injection isn't steroidal. It's the rocket fuel for your white cells (also known as g-csf) If your white count dips too low you could get an infection & be hospitalised (like I did!) so it's important to take your temperature. Mine went slightly over 36 & I left it all day as I didn't want to bother them (I know I know) even though I felt really ill. I got a bit of a telling off when I eventually phoned in...

Anyway I hope you can sleep well tonight!

Jojo xx

[zena75]

True jo . I am excited for you for Monday Hun , feels like we've been on this road for such a long time Hun xxxxx

[zena75]

Just googled it and yes it's a g-Sef my phone will not let me spell it and I'm to tired to argue with it 😥
Gonna keep an eye on the Dex thou too xx

[Jo C]

You sound like you're doing fab Zena. I got a sick queasy hungry feeling when I was pregnant and just had to snack to reduce it. I've bought in lots of chocolate ginger biscuits just in case! Glad to hear Emend works. A friend recommended it to me so I asked my onc for it. He said I might not need it and they would see how I was! So relieved that it was prescribed anyway. It's a real cocktail of drugs we get, isn't it?! At least we are getting there and not waiting for something to happen.

Hope you carry on feeling better Zena xx

[zena75]

Hey ,
Yes jojo and jo
I got emend one before and 2 for days after - has actually worked so far and I'm having a weetabix with koko milk ( surprisingly like normal milk ) and brown sugar on to ( nautie)
Pretty much every 3 hours to stave off the weird feeling of hunger but sick hunger ( weird too ) ..
Also taken 2 ondazatron bed and breakfast they call it .. and had 2 injections of anti Sick before chemo not sure what they were called ..
my steroid is called filgastram
And also taking dexamethasone for 3 days too ..
Also just had a diazepam too 😴
I want to take paracetamol for my headache but just feel overloaded with drugs ... il keep eye on water retention to jojo .. bloody SEs the muggles just don't know what we are goin through lol xxxx
xxxx

[Jo C]

Thanks for the update Zena and Jules and well done. Sounds like you're both coping. I am definitely planning on being close to my bed and plenty of duvet time if I need it next week Zena. The SEs sound really odd. Can't say I'm looking forward to it but it has to be done.

Jojo, I'm worrying about feeling sick too. Actually, I'm dreading it. I've been given Enend to take an hour before EC and then for 2 days after. Was really relieved that I'd been prescribed it as I'd heard it was good. I'll let you know next week! I'm also having g-csf injections. Oh the joys of even more side effects and self injecting.

Big hugs to you all.

Jo xx

[atomicjojo]

Regarding weight gain...It's not always about the steroids as it's a fairly short course, or overeating, but keep your eyes open for water retention, another beeping SE!
I'll be seeing my onc on Monday for pre-chemo & talking to her about it. I struggle to get my rings off & my ankles are swollen!

[atomicjojo]

Evening all!

Busy day so only just catching up...

My chemo starts 3rd Feb (next Friday) and it'll be FEC having already had the TC before Xmas. I'll definitely be paying attention to your SE's ladies. Dreading any sickness tbh.

I'm surprised you ladies are having steroid injections! Isn't it strange how different trusts treat the same disease differently? Surely there's only one way? I was given Dexamethasone tablets while I was on the Docetaxel/Cyclophosphamide. Made me wired & hungry. Luckily only need them for a few days and yes to prevent sickness & allergy. The only injections I was given was the g-csf injections to boost your production of white cells on day 4 for 5 days. Hated them & the aches that came with them.

Have a look at the use of antihistamines in chemotherapy. Just the bog standard over the counter types. They can help with some SE'S. I take Nytol anyway which is an antihistamine & did sleep ALOT better! 

Zena what anti emetic did they give you? Was it Emend? I've been told to ask specifically for this as it's the best thing out there. Just can't cope with being sick.

Sounds like you two ladies are coping really well! Long may it continue.

JoJo xxx

[zena75]

Thank you flopsy that's really interesting- I'm gonna ask onc and check which one I'm on and get back to you if that's ok .
They are in the fridge and I'm in bed now as had a wave of exhaustion..
Thanks so much for reply xxx

[Flopsy]

Hi Zena,

I finished Chemo about 4 months ago and also queried the steroids at the time.

My clinic prescribes Dexamethosone for a number of days at the start of the cycle. My Oncologist said it was for 2 reasons 

1. to reduce allergic reactions at the start of chemo

2. to reduce sickness and vomiting

I'd previously had a bad reaction to Dex but made the mistake of allowing my Oncologist to talk me into taking it. Was violently sick and totally floored by my first chemo (FEC). After 2 bad cycles I changed to another steroid that I had tolerated previously called Prednisone.

It looks like other countries are noticing the side effects from Dexamethosone and changing their protocol. This clinic in New Zealand is now using a single dose of Dex.

http://oncologypro.esmo.org/Meeting-Resources/ESMO-2014/Supportive-Care/Efficacy-and-safety-of-a-sin...

If you have a preference talk to your consultant.  They may be happy to change the dose or the drugs used.

[Maria12]

Hi zena my first one is planned for 8th of feb x

[zena75]

I wonder if we could just have quick update for dates and onc results if in ( sorry Mrs c I know you chased )
Jojo
Maria
Mrs cat
Ann
Sparky
Sarah
And I know jo is starting Monday ..
I just can't keep up and want to be able to wish you all luck on the night before or day if I don't catch the right posts
Hope that's ok xxx

[zena75]

Hey Julie

Yes it's a weird feeling. I can't explain it either.. like flu symptoms but not ...
So good you had a walk . I just lay about ..

I'm also concerned about steroids and don't understand fully why we are having them .. I don't want to feel energetic and weird like this ;that would be very odd ..
also not sleeping thing ( last thing we need) .
And weight gain ???
I agree - anyone know more would be good to know .
I know it's something about white blood cells but in Macmillan chemo book it doesn't actually say why just what it does ..
Oh and the low mood and withdrawals after the 5 doses 😩
Don't need a low mood ..
Z x

[Jules1]

Hi

I'm still feeling okay - no sickness and I managed my first steroid injection which I was dreading. It was okay.

I've been out for a 40 minute walk but now I feel a bit odd - not sure how to explain it.

I wake a lot at night and sometimes read and I nap during the day a little. Managing to do some family history research and watching all the DVD's we haven't got around to watching. OH is still making healthy meals and I'm managing small portions. I hope to have lost a few pounds but I'm worried about the effect the steroids will have. Does anyone know if they cause weight gain? I hope not.

Hope you are all okay.

Best Wishes

Jules

[zena75]

Hello All you lovely lot , and welcome Ann of course x

What a bad night after thinking i was gonna be ok ... its was like id been filled with lead..

headache and pains .. and a sick feeling even though I had very good anti sick ( one up from ondanztron).

Woke up every hour sweating buckets ( vile) and loads of pink wees ... probab;y good as getting it out of my system.

Anyway got up at 11 had a bath and came down to lie on the sofa... my mum made me soup and hubby took kids out .. disrict nurse came to show me how to inject the steriods Ive got into my tummy. 

and now ben back with a very cheeky mac donalds cheeseburger for me..

After the amazing food Jules talked about i neary didnt admit that bit LOL xxxx

any questions please ask. I feel much better now and so I can say that terrible feeling for me has at least is getting better. but im guessing more fun and games to come from my small pharmacy ..

good luck jo for monday hunny, the chemo bit is actually fine and once cannula in pretty straight forward. 

it hit me about 4 hours later so be close by your bed so you can jumo in under the duvex darl .xxxxx

huge hugs for you all and fight on xxxxx

[Jo C]

Ann, I have just read your post. You are not alone with anxiety and depression. I was awful when I was first diagnosed and I know that there are many other ladies who feel the same. For me, it got better once I had a treatment plan. It's good that you're with your family. Nobody wants to go through this alone. Do keep coming back in to chat. I've been off here for a couple of days and am now struggling to keep up with all the new posts.

Big hugs,

Jo xx

[Jo C]

Well done Jules and Zena getting your 1st chemo out of the way. Hope you are both feeling ok and not too many SEs. I've not been on here for a couple of days so have got some catching up to do.

I had my pre-chemo appointment yesterday so am all set for Monday. It's seemed a long wait since my mx at the beginning of December. I've been busy doing housework today because I'm guessing I won't feel much like it next week 😳 (not that I ever feel like housework).

Ladies, what anti-emetics were you given?

Jo xx

[mrsorangecat]

Hi Jules and Zena, huge hugs for being brave and getting the first treatment over with. Im so comforted by what you've said and I bet many other ladies will be when they hear just how positive you are sounding.

I chased to see if oncotype result back yesterday, no joy. Wish i wasn't such an impatient worrier! 😕

Welcome Ann, ul get great support from the ladies on here 😊

Hope everyone has a good day. Mum's doing a tea party and inviting all the ladies over in our family so it will be nice to have a giggle and a scone! Yum! Yep, i realise im coming across as cake obsessed in my posts 🎂 🍰😂. Xx

[Jules1]

Ann

I am also 60 years old and have just had my first chemo (yesterday) - I know it's early days but I feel fine.

I was 60 in December and our plan for 2017 was to sell our house and move to West Wales. We are both Welsh and want to live near the sea and in Wales. We also planned to buy a camper van and take a gap year once the house was sorted. So all that has been put on hold as I had the recall letter 3 days after my 60th (family party at St Fagan's!).

I suppose what I'm saying is that we have to deal with what is thrown at us. I've never been ill so have never done the whole medical thing/waiting rooms/specialists etc.

The chemo was much easier than I expected and I hope it will be for you too. My email is julieowen@uwclub.net if you want to keep in touch more easily. We can get through this together.

Love Julie xxxx

[Maria12]

Hi ann .welcome i start my chemo on the 8th before surgery so i only know mine is grade 3 due to lymph node involvement and size .i wish you all the best for you first chemo next week .xx

[AnnCann]

Hi Ladies

If I may join you as I will be starting my Chemo next week on 2nd February.

Just a little about me I am 60 years old and was diagnosed on 24th November 2016 with Grade 2 BC and one lymph node involvement.  The Grade changed to a 3 after the operation on 5 December  but no further lymphnode involvment and my super duper surgeon managed to get clear margins and did a fantastic job.  Since my operation I have not been coping well, anxiety, depression etc....  I am sure you ladies know exactly what I am talking about.  

I live in the Sussex area and selling my house and was due to move to South Wales before my diagnosis, which I still plan to do.

I had my op in Surrey/Sussex hospital but as I live alone in Sussex and all my family are in Wales I am moving down there temporarily and will be having my chemo and radio therapy in Cardiff so I can be supported and taken care of by my family, until my house sells.

I must admit I am terrified and have been encouraged by your posts.....   I pick up my wig on Monday morning then I have my Chemo Education session Monday afternoon, Clinic on Tuesday and Chemo on Thursday.  

I will do my best to keep in touch and keep up but I find it difficult using my phone and I get very lost with all the messages posted....  I guess it's getting old and by the sounds of it the chemo will not help my aging brain!!

Looking forward to going through this journey with you strong Ladies. 🙂

Ann xx

[Jules1]

Day two and I've had a good day. Been for a walk in the fresh air, did some more family history, some household chores, a bit of telly and a cheeky nap in the afternoon.

The anti sickness drugs are obviously making a huge difference to how I feel. Opened the door this afternoon to two beautiful flower arrangements so that's five vases full over the last week. The ones this afternoon were from work along with a card with masses of messages. Great to know there are so many people rooting for us. I'm keeping up with a bit of facebook too.

Tomorrow I do my first ever injection into my flabby belly. Not looking forward to that at all.

I've been eating masses of roasted veg with either fish, chicken or haloumi cheese with tumeric and black pepper. I feel like I'm eating goodness. Also had home-made lentil and veg soup for lunch (also with tumeric). I have spicy green tea with a spoonful of manukka honey each day too. Oh and a very high fibre breakfast of all bran, apricots, raisins, linseeds and chopped walnuts. So I hope I won't be needing any Senna stuff.

Also had a phonecall from Macmillan to say I have a free 2 hour beauty/pampering session next Wednesday. Apparently I will come away with a goody bag too.

So I'm feeling positive and hope you are okay Zena and all other February starters. We are all having different treatments for different types of breast cancer but the NHS and Macmillan are looking after us amazingly.

Love to you all. Jules

[Sparkydee]

Hi all, I'm keeping up with this thread, pleased your first treatment went ok ladies. Much love and thanks for all the advice so far , done some reading on McMillan and cancer research on chemo types.. still mind blowing!! Xxx

[zena75]

I'm out ...I had a cannula in then 3 anti sickness drugs then 3 pink tubes by hand. And then 3 drip bags - il write drugs later .
I feel funny in my nose bit achy but apart from that I'm fine and going to Sainsbury's with hubby for more free from food ..
hope you are all doing ok today lovely fighters xxxxxx