May 2017 chemo starters

[Trisha69]

Took two Loperamide at about 8am and kept it at bay!  Feel like its gonna happen again and I tokk two anti sickness tabs.  Eaten little and often, cornmbbef hash, scrambled eggs, peanut butter on toast, chocolate mousse.  Feel like a lot as not eaten much last few days x

[treehouse]

Oh Trish.
How many Imodium have you taken?
What is your temp ?
What are you eating?

I am always dodgy on too much fruit or veg this week of treatment. My mum makes me soup but it has me running to the loo.
Stick to bread and eggs etc

[Trisha69]

Not stopped eating. Fell asleep for about hour and half. Just woken up fe3l sick and diaorresh back. The on if due to ring in the morn to see if ok to have no 5 but said might delay if have any more hours of poo...... thinking just take more of the tabs to stop poo and sickness? Thoughts?x

[treehouse]

Super vein 💉😂❤️
I want one!!!!!
Look after it Rosie is it one more to go?

[Rosie65]

Thanks MJK!  Glad you had chemo no 5 today.  Got my blood transfusion next Weds. Chemo went ahead today so let's hope it hasn't knocked out too many rbc's.  I have a super vein, the chemo nurses are treating it very carefully as I've had the last four infusions through it. It really sticks out and the nurses get  very excited when they see it!!!!

Glad you got your injections Mai, I could have lent you one as picked mine up today. Got a new sharps bucket, my old one is overflowing and way above the safe line.... I have five injections every week, my stomach resembles a pin cushion and my sister is seriously regretting saying she would do them lol

[Raitchr]

Treehouse, I know the feeling, I was like that on 2nd T. I stuck to Branflakes and milk for breakfast and cheese on toast n brown sauce for lunch. For tea it was hit and miss how much or what I ate. Everything was just like cardboard and all drinks tasted like chemicals, even water. It was tough but it will pass.

Even now on my (last!) good week I made chilli and it wasn't spicy to me but everyone else thought it was too hot. Think taste buds are severely damaged!

H

[treehouse]

MJK chemoji queen 😂😂😂😂

[MJK]

For Mai 💉💃💉💃💉💃💉💃💉💃.For Treehouse 👡😲🍋. For Trisha ⚀⚁⚂⚃✔☞⚄ 💩❌. For Rosie and I ⚄✔☺.➡😪.

[Mai7]

Ah, bless you Trisha, hope all goes well tomorrow. 

Treehouse, I add a few drops of lemon juice to water to make it bearable to drink! My tongue feels the bottom of a flip flop! Imagine rubbing a dry flip flop over food and expecting it to taste something! It feels the same!

My wild goose chase continued. I went to local pharmacy to collect filgrastim as planned. It hadn't arrived in the hospital delivery. I phoned the hospital pharmacy. It had arrived there but not in time for transfer so we drove over to the hospital to collect it and then had to queue in rush hour traffic to get home. I've just injected myself so let's hope those silly neutrophils start to wake up a bit!

[treehouse]

I have reached the ' everything tastes utterly disgusting ' phase. I don't think it has ever been this bad. I know it smells nice but the flavour is indescribable.
I love food. I will appreciate every mouthful when my taste buds decide to work again.
This is so gross. Even water tastes bad.

[Trisha69]

Thank you xxx

[treehouse]

Hang in there Trish. We are here for you x
Good luck with no 5 tomorrow

[Trisha69]

Hi Mai7. Sorry had a bad week. On antibiotics. Diaorresh. Steroids ready for no 5 tomoz. Docetaxal/Herceptin.... list goes on. I RATTLE! Slept about 20 hours on and off yesterday and no map as yet today. Assume the steroids. Hope your all ok and will chat some more. Read all your posts. Just being a hermit xx

[Jay68]

Hi AnnieA - it certainly feels good to have a plan - I have a MX and node removal booked for 19 September - so near yet so far as I've still got a chemo to go next Thursday!

[Jay68]

Hi Mai - I consider myself to be very fortunate and I guess you do too, I really enjoy my part-time job working in primary school - hence I'm not allowed to work whilst on treatment!  Personally, I can't wait to return to work - I work alongside a great group of ladies who have been so supportive of me whilst I've been away - in fact tomorrow, we're all off out for lunch together!  

Like you I've also given up alcohol - it's not great for HER+ which is what I am.  I never drank much anyway just the odd glass of wine or prosecco but it's amazing how much, sometimes I really feel the need for one!

I also feel it's made me appreciate the moment and the simpler things in life and to try not to get too stressed by everyday problems!

[Mai7]

Not heard from Trish or Kala. Hope you are both ok. X

[treehouse]

Katie I remember you talking about the willow foundation months ago. I am so thrilled for you and the family. Have a great time 😀

I actually have a yellow courgette plant growing as we speak ( a present from a colleague as flowers were getting predictable)

I love Christmas. I have done 2 sewing projects since I have been off, both Christmas decorations. Can't explain why, just makes me happy and gives me something to look forward to. 🌲⛄️❄️🎅🏻

[katie11]

Love your multi tasking MJK! I can't be bothered with socks lol! Hated ironing labels in let alone sewing! Hope all goes well.

Glad you have a plan anniea. Did you ever contact willow foundation? We are off to centre parks tomorrow for ours? Xx

Hope your prescription is in soon mai. Will start blood count dance again! X

Trish how are you doing? We haven't heard from you in a while.

I know its August and I'm sad but just spent the last hour going through the studio cards christmas catalogue that arrived today. I love Christmas x

[Mai7]

Rosie and MJK, hope your chemo goes well this afternoon. MJK:  *gasp* labels in socks! And during chemo! Are the socks Primani or Armani?! My kids still managed to lose their clothes and bring home someone else's even with labels sewn in!

my filgrastim is supposed to be in at 4pm so I'll ring the pharmacy soon to check status. 

Treehouse, the good life sounds like a great idea. How are your vegetable growing skills to date? I'm ok with herbs and fruit bushes (I.e., they look after themselves and you just pick and prune) but have never attempted to grow a carrot or potato or bean row! I've heard courgettes are easy to grow.

Katie, glad you got the emotion out of your system with a full on house cleanse!

Another life change I made was avoiding refined/processed food and sugar in favour of raw/whole grain. Not as easy as you think and takes a lot of label reading! It becomes easier to just start making more food from scratch. When I eventually go out for a meal again I'll relax the rules a bit otherwise it becomes impossible and miserable!

[AnnieA]

Well I just got my surgery date and signed all my papers. 10th October for a lumpectomy and then radiotherapy 6 weeks after that. Feels good having a plan again x

[treehouse]

Lol. Socks is a step too far even for me 😂😂😂😂😂😂

[MJK]

Currently in chemo, sewing labels in socks.

[MJK]

Go for it Katie while we get lots of people offering to help, a thorough clean still seems to be down to us. Go for it Treehouse, especially if you stick to being called treehouse and keep the headscarves. I hope you're not afraid of 🕷🕸🐌🐛🐜🐝🐞

[katie11]

Thanks ladies! I decided to put my bad mood to use and cleaned the house from top to bottom. Haven't done it all in one go for ages! !! I'm on moving forward course in September so am hoping it will be useful .

Good luck today ladies another one closer x

[treehouse]

Good news MJK.
Thanks for sharing your experiences and plans re work ladies. I am starting to consider a Tom and Barbara Good life approach 😜

[MJK]

Hugs Katie, marshmallow days are rubbish but part of the process. Getting a work /life balance is a challenge. I have been working 3 days a week as a specialist teacher and will carry on with this. As my son will be in school and I finished my diploma it will be easier. I think it's taught me that looking after me is just as important as looking after everyone else (particularly as they've shown they can when they need to).
Blood results finally came back ok so it's round 5 today. Good luck for this afternoon Rosie and I hope the 💉 filgrastim turn up Mai. X

[Rosie65]

Katie fully understand where you're coming from, when on treatment we prioritise that and the day to day stuff takes a back seat but once that finishes we've got to face up to the things that stressed us out before and yet because of what we've been through we've changed. Did you book on a moving forward course, I think that will be useful

I have worked from home to cut down on taking sick leave. I have enjoyed it but only because I have had no new work and am only now starting to clear the back log. I worked long hours and had a long commute and am dreading going back to it. I feel as if I have lost a lot of confidence in myself over the last few months but hopefully it will return. I do miss the people and daily interaction which is why this site and all your support has been so invaluable.

Glad to hear you've turned the corner treehouse

My chemo isn't until this afternoon, much prefer a morning appt so I can get it over with!

[Mai7]

Don't worry Katie, it will all be fine, just keep taking baby steps forward. Maybe you'll be ready to put the big girl pants back on tomorrow but not today. Keep working on your self esteem and confidence and your new normal will be fine with whoever you meet. Self esteem can take effort sometimes, whether it's pampering, chatting with the right people or positive self talk. Just make sure you talk to yourself as a best friend and not a harsh critic. X

Glad you're feeling chipper again Treehouse.

Im looking forward to going back to work as I enjoy my job and the team I work in. My Managers have been brilliant whilst I've been on chemo and have allowed me to work from home which has saved my sanity.  My big change is that I no longer feel ambitious about getting promoted and taking more pressure. I'll just keep chugging along and may consider reducing my hours in a few years to work 3 or 4 days. My big life change has been giving up alcohol and dairy products to reduce my toxic oestrogen load as I'm ER+/PR+.  I've replaced most mainstream cleaning products with chemical-free products.  Im also learning to enjoy the moment more and appreciate the simple things in life.

[AnnieA]

Morning ladies. I'm feeling similar you some of you about the work situation. I can't imagine to going back to working 40 + a week and only having a weekend off every 2 months. I love my job and I've worked up to deputy manager in only 2 years. I'm 32 so this for me was the start of a career. But things change when your in the boat we are and time with me kids 13 and 3 just seem so much more important. I'm not being paid for being off so I'm already getting used to not having that so maybe I'll look at finding something part time when this journey is over 🤷‍♀️

[treehouse]

Hi Helen. Wow that is amazing I completely understand your brave choices. Are you leaving teaching?
It is like a seismic shift in priorities.
I have always tried to teach my kids the value of things and made them realise you don't get everything you want. But I may have been too strict. I realise sometimes if you wait too long you might not get he chance. Maybe we need to make the most of every opportunity.

[Helenk]

Yes I agree with that thought, that we've been given an opportunity to reflect and create change in our life. I decided immediately not to go back to an incredibly stressful, 60 plus hours a week, insanely crazy job as a deputy head. Not being in work has really made me see who valued me enough to bother to stay in contact - and there were some unbelievable surprises. I go onto half pay in a couple of months so we've sold the house and are using the equity to buy smaller but mortgage free! This is to avoid stresses and pressures when I go onto zero pay. It feels very liberating and I wouldn't have even had time to think about it before.

[Jay68]

Well done Misyangel - for me, since starting Docetaxel the side effects commence the day after steriods finish - so good luck and hope the good days stay with you.

Treehouse - glad to hear the fog is lifting - take it easy x

Katie - if it makes you feel any better, I think it's only natural that we get moments like you're going through today - what we're dealing with is tough - we seem to plough through and deal with everything as we face it - occassionally, when we dare to think back - it's scarey! The answer is to keep looking forward - we'll soon be through the other side and I'm sure we'll almost forget all this trauma and begin to enjoy our life again. x

[Raitchr]

I'm also a bit nervous of finishing chemo and treatment. We will never be "normal" again, but it will be a new normal. We have been given a second chance and need to make changes to life.

I am nervous about going back to work, to the same old stress and would like a job change but can't see that happening at the moment. Need to get finances sorted as dropping in to half pay soon. I need to get DH to do more around the house on his quiet days, unless I ask him to do something he goes around with blinkers on and ignores the Hoover or the fact that the bin is overflowing! May take some training but little steps...

H

[misyangel]

Heather thanks for info re espsom salts.  I weighed out 200g and will put that much in each bath now.   I had bad stomach cramps day of chemo in the afternoon and followng morning but no more as yet.  But much prefer this than being constipated.  I am also on antibiotics for 21 days which I take on Monday, Wed, Fri every week which are called Co-Trimoazole and I have been on these since I started my first chemo.

Mai7 not good about delay hope your netrophils get right 😞 not good that they didn't have your prescription at the pharmacy.   I keep seeing people ringing bells at end of chemo and peole have posted videos on facebook but they don't have one at my hospital doh

Katie I know how you feel re the job I had lost my job a month to diagnosis and had just started temping at the local university which could have led to perm job in a way I am glad I don't have a job as don't have any pressure to rush back to work.  This it the first time in my life I have been out of work but in a way I am glad.  I am hoping the university can find me something temporary once I am fit and well but I am due to finish radio in Janauary then I am having my ovaries removed as a prevantive so I am going to start look for work to start end of March/April as want to be well in Mind as well as body.  I don't think it is scary once you finish treatment and I am going to try and book on the moving forward course.

Treehouse so happy you are feeling better today.  It feels never ending when you are in that low place and you are never going to come out of it.

Well day 3 for chemo since chemo and on the fec for first  3 days I always felt like I had chemical hangover and not had that all, steriods were no where near as bad as thought and managed to sleep on them for a bit.  First day no steriods to day so expecting I could dip today/tomorrow but so far so good.  This forum is great to see what everyone is experiencing and feeling down on tax can happen but to be prepared is fantatic so thanks for sharing all your ups and downs.  Loving seeing everyone is so suportive and we all get what we are going through.

Have a great day everyone xx

[treehouse]

Hi Katie.
Big hug. Let it all out. You need to sometimes. I am feeling lots better today. Pains are less and I feel emotionally stronger, it does pass.
I completely understand your concern about work. Especially if you are starting again.
I am worried about coping back after surgery. My job was stressful before hand and I feel this is my wake up call to make some life style changes. But I am clueless about how.
I have this notion that this cancer is supposed to be teaching me a profound lesson that will change my life but I am just being too thick to realise what it is.
Yes I love my family. Yes I appreciate everyone that has helped me but I don't want to go back to the way it was before constantly juggling and never feeling like my best was good enough.
If anyone has had their epiphany please share.
Try to see this as your chance to make a change.

[katie11]

Everyone else ok today? Feel like a very big marshmallow today can't stop blubbering. Can't even blame the steriods anymore as don't take them. Feel like I'm freaking out about finishing and going back to "normal" whatever that is now. Don't think hubby gets its never going to be the same normal anymore. Also my contract at work finishes before I finish rads so also need to find a new job but don't know when to start looking. Also hating the thought of going back to work with complete strangers. Sorry moment over xxx

[Mai7]

My wacky race car needs some pit stop maintenance to get me over the finish line and I'm looking at it in a truly Victor Meldrew "I don't believe it" kinda style!  Just been for a brisk walk to pump my small number of neutrophils around a bit faster to create a "less is more" effect! 

MJK and BusybeeS, glad you are getting the rads lined up, it must be such a good feeling to be closer to the bell ringing. Boy, am I going to ring that bell hard when it's my turn, you may even hear it in Windsor! 🔔 😂

[treehouse]

Fingers crossed for tomorrow mjk. 🤞
I thought I was the fainter busybee😜So glad today went ahead.
I didn't know the cannula colours. Mine are yellow too.
Glad things are moving forward for you both. We need to hear the good stories when the going gets tough.
X x x x

[MJK]

What a frustrating day Mai. Having to inject yourself for another week is annoying enough but for the pharmacy to be out of stock is worse. So here's a beer neutrophil filgrastim dance combo 🍻💃💉🍻💃💉🍻💃💉🍻💃
I saw the oncologist today, she's lining up the radiotherapy to start 3-4 weeks after my last chemo. My blood results still aren't back though so I'll be waiting on a phone call in the morning to see if I'm good to go... it's a good thing I don't have steroids the day before.
I hope you're feeling better after the transfusion Rosie. X

[busybeeS]

Hello everyone. Bloods were good today - had to take it out of back of hand as inner elbow veins were too hard, so chemo went ahead - yey. Cannula in at 2nd attempt and no fainting this time! The nurse used a shorter needle (yellow) at 2nd attempt and that did the job. So pleased it wasn't delayed, I was a bit anxious before as I didn't want any set backs.
I'm still going to get out for a walk every day as I feel that helps to keep SEs to a minimum - weather permitting!!
Mau, so sorry to hear of the delay again, it must be so frustrating. Rosie, I hope your chemo goes ahead tmrw despite the low reds, you don't want a delay and a wasted journey. Tree house I'm sure your kids and husband understand that your upset as a result of treatment and it's only a blip. Hugs.
I start tamoxifen and radiotherapy in 3 weeks, roll on next stage!
Good luck to everyone on treatment tomorrow. Xx

[treehouse]

Cheers 🍻
It's the wacky races part 2.
Any news from busy bee?

[Mai7]

Treehouse, I am drinking an alcohol-free beer as I speak and I will pretend to be chilled out and/or drunk afterwards! Hiccup! Hic! 🍺 🎭

[treehouse]

If ever someone needed a drink Mai!!!
You seem a sea of calm. Well done 👍

[Mai7]

Well, I seem to now be caught up in a series of unfortunate events. Arrived at hospital and the in-house pharmacy had received the prescription and we're working on it as I arrived. When they handed it over it just had mouthwash and 8mg of steroids to replace those I took this morning. They gave me an iou for the filgrastim as they were out of stock and are going to arrange delivery, hopefully tomorrow afternoon, to a more local branch since the hospital is 10 miles away from me. Apparently, patience is a virtue! I'm not sure I agree right now! I mean, how do you run out of stock of a chemo care essential?! 

[Jay68]

Mai/Rosie - I agree the size of lumps is confusing - it's all my breast surgeon refers to - I may ask my onc on Monday what their views are about the recent ultrasound scan I had last week.  I guess you're correct Mai, the full story won't be revealed until after surgery and we are presented with our pathology reports!

Great news re the injections - get stabbing!!!  

[Rosie65]

Yes you do wonder how much benefit you're getting from so much chemo and the damage it's doing to your body. 

Jay - I had most shrinkage on EC, from 3cm to 1.5cm and only 0.5 cm so far on carbo/taxol.  The ultrasound report said "the solid component is barely visible" but not sure what that means. Is it possible for the lump to be the same size but have dead cells inside? My regular ( well I've seen her once) is also away so I will probably have to wait until my next appointment on 4th Sept before I find out.

treehouse - I don't feel too bad considering hb levels were 8.3 two weeks ago and have probably gone down this week. They are still going ahead with treatment tomorrow but it's my week for a big dose of carboplatin so worried about how I will feel on Friday and how long I'll have to wait for the transfusion

[treehouse]

Go get them jabs Mai!!!!
💉💉💉💉💉💉💃💃💃💃💃💃

[Mai7]

The neutrophil dance must have had a butterfly effect and sent airwaves in the direction of the hospital! I just received a phone call from the consultant to go in an collect some filgrastim injections! 💉💉💉💉💉

Jay, I wish it was more clear on whether shrinkage is all important compared to cancer cell death. Apparently the tumour size can stay the same but turn benign so it becomes scar tissue.  Does size really matter?! I had fibroadenomas since puberty and those lumps were benign until whenever they became cancerous.  I suppose they can't tell until the tumour is removed and fully analysed but they can't perform surgery until certain risks are fully assessed! Catch 22!

[Jay68]

Mai - sorry to hear your count is too low for this week's treatment - make the most of feeling good and fingers crossed they will improve to have treatment next week.

Treehouse - sorry you're feeling low - there isn't much anyone can say or do when you feel like that but you know we're all here to listen. 

Raitchr - my surgeon said last week that they like to do the operation 4/5 weeks following chemo - but the bloods and general health must be good before it can go ahead.  If the other way round ie surgery first - ideally they like to start chemo 6 weeks later.  If you go on to have radiotherapy, after surgery or after chemo apparently that is 3 weeks from the last treatment/operation.  These are timescale guidelines which they have to try and follow.

Just for information - after my final lot of EC chemo and before I commenced on the Doxacetal with Herceptin and Pertzumab concoction I had an ultrasound - that showed no growth of the original lump but very little shrinkage - at that point my onc said it may have meant that after 2 lots of the new regime they would bring forward the op - however, this treatment (for all its faults) has shrunk the lump quite a bit so it was agreed I finish the chemo as originally planned.  

[Raitchr]

They will want you fit and well ahead of surgery, think the gap is usually 4 to 6 weeks so I hear from others doing chemo then surgery. My wait after surgery for chemo was just over 6 weeks.

Doing the neutrophils and bloods dance 💃for us all.