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May 2019 Start

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Re: May 2019 Start

Good evening everyone,

It seems many of us had a change in the side effects with our last treatment.

SP - I'm glad you're over that awful weary feeling, You must have really needed the rest, and our bodies heal so much quicker if we can sleep through it. Thanks for the Arnica advice, I have some of that so will give it a go. Antacids were much more help to me than anti sickness, thankful for that! I really hope you get to enjoy some of your 5 week break, it will do you good mentally to recover from the EC.

 

Rose 2020 - nearly half way through Chemo - hope all is well with you xx

 

Debi2 - I hope your MRI results were favourable - fingers crossed for you xx

 

RuthGr - You are so right to say focus on what we can control, there is so much that is out of our control that this really is a mental battle too - any little thing that we can make our own decision on seems so important right now. I hope you are managing to enjoy plenty of walking!

 

My 3rd FEC went ahead on Monday, but oh boy! it knocked me for six!. My veins are all shot to pieces after my IV AB's, they managed to get a line in my wrist but I have to have a PICC line before next chemo. My symptoms have been similar to the previous two  cycles but came on stronger and quicker. I managed to work 32 hours but if my manager was not on holiday I think I would have done less! Thankfully I have the next 5 days off. I am already starting to feel better - Ulcers in my throat again - are just starting to heal so eating is getting easier. Diarrhoea is under control,Fatigue was less today and I managed 8 hours at work today. I hope this means that I will have my 5 days off (booked for recovery) to actually do something I enjoy lol. 

The symptom that causes me most problems though is pins and needles/tingling/numbness in my toes and feet. My toe nails have not come off but they are purple and painful. I have some numb patches on the sides and underneath my toes, and the joints ache in my toes.I have been told that I must wear open shoes and put my feet up more, and so I shall! 

On a more positive note I picked up my NHS wig yesterday - I haven't worn it yet but at least I have it. It is not awfully comfortable, I really think my ears are set on too high for wigs haha they all press down on my ears and feel like they have too much room on the top of my head. My daughter and I have started planning an afternoon tea in July to raise money for BCC, so that's something nice to focus on. 

Sending lots of love and positive vibes to you all, i hope the side effects are being kind - we're all well on our way now and all giving this our very best shot!

xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

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Re: May 2019 Start

Hi all, 

 

My 3rd chemo of EC last Friday is now well behind me.

 

This time I had a different set of side effects on my bad days. The newly prescribed antacids and anti sickness meds mostly controlled my churning stomach, which was good. However on day 5 and 6, I had extreme fatigue and dizziness (a new symptom). My BP was very low so no choice but to wait for it to pass.  It was hard to move without feeling light headed. So, I mostly slept on and off for 48 hours. I’m now convinced that my  body shuts down all “non essential” functions so it can deal with the toxins that are attacking it....and the best way that I can help is to rest on those bad days to let my body cope....and amazingly it does!!! My daily gratitudes include thanks to my body for coping with these drugs. 

 

But what a difference a day makes! Yesterday I awoke and just knew that I was coming out of it. I made myself do a gentle walk and I improved as the day went on. Today I’ve walked 3 miles and have even made a green smoothie to drink!! Things are looking up! 

 

Here’s  hoping that the improvement continues, as I have a 5 week rest before the Taxol starts. Who knows, I may even start to feel normal?! 

 

Hope you are all are coping with whatever is thrown at you and are well enough to enjoy the sunshine? 

 

SP

xx

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Re: May 2019 Start

Good luck for the results today Debi keeping everything crossed that things keep going to plan for you 🤞🙏xx

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Re: May 2019 Start

Hi 

 

Rose2020 i still have surgery to go.  I have been told it will be around Sept 10th as long as everything else go straight forward and no delays. 

 

RuthGr i too found my 3rd EC harder than the first two, i had a bit of a do and they had to give me oxygen and lay me back! I don't think it was the EC but maybe a bit of a anxiety attack, it wasn't until the nurse was half way through that it happened - very strange.  10 mins after i was feeling better.

 

I am seeing consultant today for results of my MRI 🙏

 

Take care

Debi

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Re: May 2019 Start

Hello

 

Feeling more human again after Fridays’ EC, almost perversely found this one mentally harder than the other two which makes no sense as I was so positive to be getting past this.....but how much of any of this makes sense?

 

focussed on the 2 things I feel I can control, water and walking both of which I believe makes a big difference. Rose you are right about each one at time. 

 

SP - I hope you are getting through yours since Friday, and your stomach has settled down and sewbuddy that you are coping well with yours.

 

Joemic - Are you this week?

 

sorry I haven’t caught up with everyone, but sending all lots of hugs, and encouragement....we will get through it, each day is one closer to completing.🤗

 

xxxxx

 

 

 

 

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Re: May 2019 Start

Hi Debi

Thank you for the reply! It's nice to hear from someone else on a similar treatment plan  - I hadn't realised there were so many different chemo regimes and side effects!

I asked today about the change of chemo -the written info they gave me in clinic said it was over 2 days but the nurse who did today's treatment said it would be just 1 long day as they all took about an hour to give and they had to leave an hour between each to watch out for reactions. Said it would be quicker the next time if I reacted ok. Great that you haven't had too many side effects with it too as on paper there looks like there are lots more than with the EC!! I am forcing down glasses of water at the moment to get rid of the red wee!!

Have you had surgery yet or is that still to come? Hope you keep feeling well.

Thanks again Rose xx

 

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Re: May 2019 Start

Hi Rose2020

 

Just popped in from April thread.  It sounds like yo are on a similar treatment plan to me.  I had my first docetaxel, herceptin and pertuzumab on 11th and 12th June.  Are you having them over 2 days? 

My next one will be all on the same day 2nd July.  Bones ache a little on day 3 and 4 and the back of my neck and shoulder felt tight and sore but nothing co-codamol and paracetemol didn't sort out (both recommended and prescribed by consultant).  Taste buds do go but have been told they will come back.  Everyone's side effects are different and hopefully you won't have any, still remember to keep drinking to help flush it through.

 

Take care

Debi

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Re: May 2019 Start

Hello all

Hope everyone is doing ok? 

Ruth and SP I hope you are still hanging in there after fridays treatments? Sewbuddy I hope your treatment went ahead yesterday and you are doing ok too? 

This is the 3rd time I've tried to write this but keep getting logged out/timed out before I post it so I'll keep it shorter this attempt!

I've just got back from my 3rd EC - bit of a delay waiting for blood results but all were fine so thankfully went ahead as planned! One more EC to go in 3 weeks which will be half way then change to herceptin pertuzumab and docetaxel for the next 4 cycles before surgery. I'm  really trying to just take it one cycle at a time as I know it has to be like this. I didnt realise I was this impatient!!

Heres hoping for a good week and some sunshine for everyone take care.

Love Rose 😊xx

 

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Re: May 2019 Start

Hi all, 

 

I have coped this weekend following my EC on Friday. I was extremely weary with a delicate stomach on Saturday and didn’t sleep well. However, today I made myself go for a walk and it helped me physically and emotionally. I talk to myself as I plod and have set mindfulness gratitudes that I use to help with a positive mindset. I’m sure this sounds wacky but it helps me! I’m also on antacids to help with the churning stomach. 

 

A friend, who is a district nurse, recommended arnica cream to rub onto painful veins so I have been using this. It seems to be helping. My consultant also said I should stretch my arm, even though this hurts, as it you need to ensure that you don’t allow the vein to shorten and affect the range of arm movement. He also advised massaging the vein to break down the inflamed, fibrous tissue which  causes the cording, I’ve been doing this every day and this week my vein is improving. 

 

I daren’t plan any trip yet. Too nervous that the schedule could slip with low neutrophil counts. I have 9 weekly lots of Taxol to get through so not sure how my white blood cells will cope! But, once I’m done with this chemo lark and in a state to enjoy it, a VERY big, luxurious treat will be planned!? 

 

Take care of yourselves this week and I hope the side effects stay under control....

SP

xx

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Re: May 2019 Start

Hi everyone,

Mominette I'm glad your cut has healed at last, that must have been a worry! Yes it is my third and thankfully last FEC tomorrow then on to T for the last 3 cycles. Sorry to hear you have had it tough this time. I felt like the 2nd was worse for me, and today I cant say I feel fully recovered - I am very tired.But I still hope it goes ahead. I delayed my surgery in February by 5 weeks so that I could attend my daughters wedding in Canada - it was worth it as I have some lovely memories to keep me going. My elder daughter was rather cross with me though for putting it off. I wouldnt have missed it for the world though and the surgeon was happy for me to do it. I know what you mean about short term memory, I am carrying a little notebook around to jot things down  - especially at work!  Where would you like to fly off to when you finish treatment?

 

Has anyone else got any travel plans or special treats for end of treatment?

 

Joemic - its great that you have a good sense of humour - those black circles are a bugger to cover aren't they? My granddaughter had her prom this week and looked gorgeous in a beautiful yellow dress - but oh my! I looked awful in the pics I had just come out of hospital the day before and hadn't put any makeup on and the bright yellow of the dress made me look like Fester from the Adams Family lol. I hope you cope OK with 3 more EC's Epirubicin is so harsh. Im sure your light hearted  attitude will carry you through.

 

RuthGr - I  hope your  weekend after chemo went well and you didnt suffer too badly. Thanks for the tip with the veins, mine were shot to pieces with my IV AB's in hospital - they avoided the last vein used for chemo, blew another completely and the one they used was from my 1st FEC and it was so painful and kept blocking. It will be fun tomorrow I think!

 

SP - how are you feeling after your chemo? I hope you weren't too bad and managed to enjoy the weekend x

 

Mangomum, hopefully your still having a good cycle (if there is such a thing?) Keep on avoiding those infections.

 

So here we go for another week - fingers crossed for a good one everyone!

 

 

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Re: May 2019 Start

Hello Sewbuddy

Thank you for your reply.

This 3rd cycle (last FEC) seemed to be harder and has taken longer to feel better.

My cut healed on Friday at long last.

Where are you in terms of cycles? Is your next one the third? Is that the one you are having tomorrow?

Forgive me as my short term

memory seems to be rubbish at the moment 😞

I bet you can't wait to see your daughter in Canada - something to look forward to.

Mominette 🙂

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Re: May 2019 Start

Good evening ladies😊

It's good to hear you have or about to have your last EC's, I've still got 3 more lots to go, just hope my veins hold out that long.

Finally figured out why I had a wonky wig, it's when I wear my coat and tip my head backwards, it manages to push my wig up🙄. Thanks for the tip on headwear SP, I'm going to give them a try.

 

Kids are great aren't they Sewbuddy😁 at least you know she isn't worried more bossing you around😂. My youngest whose 12 is very charming - he said 'mum have you been sick'? when I said no, why? he said 'well you're black under the eyes so I thought you'd either been sick or you must just be getting old'!!!! and I thought I was getting through this relatively unscathed. It appears not😂😂.

I think i'll try the comfrey oil Ruth, my vein is still tender from the first 2 and it'll be the 2nd time they'll be using the 2nd vein- not sure where they'll try after that😐. I'm really pleased you've experienced minimal side effects this time and I hope it's the same for your next lot of chemo😊. Pleased you've found some headgear that works for you, if all else fails I'm just gonna glue something to my head like a furry piece of material😂😂😂.

 

The sun was nice today for a change, although to be fair we had more cloud than sun but at least we got some.

 

Enjoy the rest of the weekend and I hope everyone comes through it with minimal side effects😊

 

Joemic x 

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Re: May 2019 Start

Good morning everyone

 

So pleased your treatment went ahead yesterday SP, mine too. It does feel like a milestone passed, last E&C I’m moving to Paclitaxel in 3 weeks. 

 

Mild sickness since getting home and tired but not too bad. 

 

I had experienced some tenderness in the vein that has been used twice so was recommended comfrey oil, which we got from Holland and Barrett, to massage in and also to stretch my arm out regularly........just in case anyone else is having something similar.

 

I love the wig stories, I am always worried when I scratch my head, that my whole hair moves...but have moved more to the fake fringe with bamboo hats. 

 

Sending lots outs of love and hugs to all, wishing everyone a positive and hopefully sunny weekend 😎.

 

love Ruth xxxx

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Re: May 2019 Start

Good evening May ladies,

Laughter - the very best medicine of all. 100% The mental image of you in the supermarket with a wonky wig, I am sure that will be me when I get my wig lol.

So glad to hear you have had the last of the dreaded spiteful Epirubicin - my last one is Monday, I will be celebrating thats for sure.

Kelly p Hope all is going well for you.

I managed my 8 hour shift at work OK, shattered and off to bed now though! 

When my two year old granddaughter saw me without a scarf on she brought it over, patted me on the head and put the scarf in my hand. I guess she prefers me with a scarf on!

 

wish you all lots of love and laughter (and a bit of sunshine hopefully) this weekend

xx

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Re: May 2019 Start

Hi May Ladies

Have had a lot going on recently. Will try and send a message over the weekend.

 

sending everyone love and hugs 

Kelly xx

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Re: May 2019 Start

Hi Joemic

 

You need to try the bamboo “hats”. They don’t need tying and have permanent folds so look good around your face. You just pull them on and you’re done! Bamboo is also a super soft fabric to wear. I’ve got three in different colours! Nothing to come undone in the supermarket either!! They are great! 

 

I’ve  just had my 3rd chemo this afternoon. Another long delay but I don’t care!! It was the last of the Epirubicin! Hurray!! 

 

SP

x

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Re: May 2019 Start

Hi everyone,

It's nice to hear laughter on here, it does help with the mood doesn't it😊 I love the boldilocks Mangomum😂.

My hubbie said the hairdryer had broke, so I told him to take mine, he said he couldn't possibly, when I asked why he said 'you need it'. When I pointed out that I only had a couple of hairs to dry, he was mortified but I found it hilarious and so did the kids😂.

Me and wigs in a supermarket just don't mix🙄, this time when I was about to go to the till, my head felt strange, when I touched it I found my wig had ridden up and my forehead had suddenly grown a few inches😂, I ended up bobbing down pulling my wig back on and thought i'd got away with it until i found i couldn't get back up, an old man helped me, embarrassing or what😁. I'm not wearing it to the supermarket again😂. I need to get better at tying my scarves and quick😁.

I do hope you both stay out of hospital from now on- apart from your treatment of course. Good luck and fingers crossed the rest of your cycles are good to you🤞

 

Joemic x

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Re: May 2019 Start

 

Morning, 

 

Sewbuddy, you are so right re hair. I feel I gave it a go with the cold cap more to try and keep myself looking as normal for the kids as for myself. However, I now realise they are pretty resilient and see the funny side of things ( like me). My husband and I couldn't stop laughing when our nine year old (trying to be kind) said I could be boldielocks instead of goldilocks - kids lol.

 

Keeping out of hospital is my new battle and not having any more  delays so I can get through this pronto. 

 

Mangomum xx

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Re: May 2019 Start

Hi Mangomum, that is great news that you are doing ok. 

My first and second cycles were similar timings for the symptoms but so much worse the second time around.

Like you said maybe the infection is just there and when the blood goes down it gets you?

Ahh your hair - its such an emotive thing. I had a liitle hair left but because I had shaved it, I looked like a baby chick with silly tufty bits, so I have now close shaved with a razor - a bit rough in places but looks better. - I too still have (thinning) eyebrows and eyelashes. Some people don't lose them apparently xx fingers crossed.xx

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Re: May 2019 Start

Hi all, 

 

All going well so far. I'm checking my temp regularly as it was day 7 I suddenly felt very unwell so fingers crossed. I had more tummy problems this time of the embarrassing variety, which started pretty much on day 1. Other than that it's been pretty easy. Makes me realise I was probably carrying a bug all the way through last time  but it didn't take hold until the bloods dropped. My hair on the other hand is a disaster! It is still there but very patchy. My kids are calling me Boldielocks 😂. It's also gone really wirey and turning grey in parts. I feel and look like an old lady :@(. On the positive I have eyebrows and eyelashes!

Hope everything is going OK for everyone else?

We are a quiet month compared to others 😂.

Mangomum xx 

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Re: May 2019 Start

Good evening ladies,

Thank you for your congratulations, its so nice to have a distraction from BC! 

Joemic, I know what you mean about finding something different to cook - I haven't bought any cookery books for many years but I often Google for recipes using different ingredients or cooking styles, I usually find something interesting. Most often it seems to be  on BBC Good Food site. Quite often Ill cook something we all like and then cant find the recipe again lol. Thanks for your comments re my scarf episode, I am ok with it now, I think I was just a bit low anyway - colours will remain with me!

Thanks for the Neutrophil info, it looks like I should be OK for Monday - phew!

RuthGr, my nose is often runny and the ladies at the Headstrong course mentioned that its because you lose the nasal hair - 'The Chemo Drip' they called it!

Rose2020 I'm a bit like you with not researching too much, I did in the beginning but  I decided to just take it as it comes. When I get my wig I think I may use it to blend in as you say, when I'm on my own  maybe. My NHS wig referral went adrift somehow so I've been without hair for 4 weeks now.

SP I hope you blood count was good and Chemo can go ahead for you tomorrow, got everything crossed for you. I get what you mean about not feeling like yourself - I dont like seeing my shadow with no hair - its weird. 

like you say we have no choice but to grin and bear it. I'm taking some pleasure in trying to tie my scarves in a different way every day, and with a different colour combination etc.  We are still us but stronger than we ever thought we could be - we can do this xx

Mominette, I'm sorry your cold capping hasn't completely saved your hair, some of these drugs are so brutal aren't they? You must be doing a great job of keeping your cut clean for 11 days with no infection - my infection started within 5 hours of an abscess bursting. Exactly like you I desperately want to book flights after treatment ends - to visit my daughter in Canada. I dare not book anything yet though, it will have to be last minute .com !

All the best for those having treatment tomorrow fingers crossed that our bloods behave and this next round is a gentle one - mind you I cant help thinking that the harder it hits us, the harder it is hitting them little buggers that might be trying to settle down inside us!

xxxxxxxxxxxxxx

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Re: May 2019 Start

It's good to hear that generally most people are coping well.

 

Good luck to those having treatment tomorrow and for everyone else I hope any infections stay away and treatments are not delayed any longer.

 

Joemic x

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Re: May 2019 Start

Hello Rose

I am well into my scarves and hats. I see lots of people wearing them because they are quite trendy atm

but I do live near quite a lot of surfing beaches. I am sure you'll look great.

I know what you mean about making plans because it is so hard to know how you are going to feel.

I have a few special things planned but I have warned the person I am going with that they get a plan B

person in case I can't make it. I haven't planned anything for longer than one day away. I am hoping to go 

on holiday once chemo is finished but daren't book flights until closer to the time.

I am going to see if I can get the Mountain Lion as it sounds like a topical funny read.

Thanks for your posts 🙂

 

Mominette

 

 

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Re: May 2019 Start

Congratulations on all the new babies - how lovely.

Sorry to read that you got an infection with a hospital stay. I do hope you are feeling much better and that

your bloods are good so that you can go ahead with the next cycle.

All the best and thank you for your posts 🙂

 

Mominette

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Re: May 2019 Start

Hello SP

I hope your neutrophil count is up so that you can get on with your 3rd chemo.

I am sure we all want it done asap, so delays are upsetting. 

I had my 3rd cycle last week - my neutrophil count was 1.7. I have felt a lot weaker this time

and suppose as the blood counts get lower this is to be expected.

I am eating nuts, fruit, veggies and a few naughties too. I haven't taken any supplements, have you or have the

medics told you to take anything?

I have a cut on my finger which I got when my dog's lead cut into my skin as she ran very quickly and after another dog.

It just won't heal after 11 days and keeps re-opening and bleeding. I am nervous of it getting infected. 

Hoping you are feeling stronger and managing to get out despite the weather.

 

Mominette  🙂

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Re: May 2019 Start

Hello

Yes, I have the nose runs - usually about day 3/4 into my injections they start.

It is so comforting when I read on here that other people are experiencing exactly the same things

as me.  

For my last bloods, my neutrophil count was 1.7. I have had 3 cycles now of FEC and feeling a lot weaker

this time.

I have been cold capping but I am looking a bit like Worzel Gummidge - long bits and missing patches 😞

not a great look. I am wearing hats but think I might be going for a buzz cut soon.

Thanks for your posts

Mominette x

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Re: May 2019 Start

Hi all, 

 

I’m no expert on blood but I do know that a neutrophil count of 1.5 is the usual threshold for safety. My neutrophil count was 1.0 last week so the consultant postponed my next treatment. Sewbuddy, if your count is 2.0, you should be ok! My blood is being tested again tomorrow to see if it is ok to proceed with my 3rd chemo on Friday. 

 

I know what you mean about wearing scarves and feeling vulnerable. I wear a bandana to walk in because it is softer and cooler than my wig. However, I do feel like I’m flagging up that I’m a chemotherapy patient when I wear this. Even when I get compliments about my wig, I don’t really believe them!! At home I don’t wear either but I hate my bald reflection...so it’s no win!!!  I know it’s all in my head but whatever I wear, I don’t look or feel like me.... all I can do is endure this side effect and wait to recover. A test of patience!! 

 

SP

x

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Re: May 2019 Start

Morning ladies

Sorry to hear you've been in hospital Sewbuddy these infections seem to be hitting a few people at the moment. I'll keep my fingers crossed that your bloods are ok and you can go ahead with your 3rd treatment as planned 🤞🤞Sorry I don't know anything about blood levels I thought I would want to know all the ins and outs of the treatments as I used to be a nurse but I've gone the opposite way and haven't read much at all other than how to manage the side effects. On treatment days I just turn up stick my arm out and let them get on with it while I read my book or chat to the person in the next chair to me!!

Just read the Mountain Lion it did describe this cancer journey to a tee! I loved the bit about hitting it with kale! 

The sun has been shining here the last 2 days but it's back to rain again today. My current worry is wondering what I'm going to do with myself all summer if I feel 0K as I feel I need a focus or a plan but its so hard to plan anything not knowing what the next round of side effects will be!

As to wigs and scarves I've still not ventured out in a scarf yet I think it's a mental block and once I've done it once it will be ok I think it's the thought of people looking at me as I like to blend into the background! My husband is all for me trying coloured wigs and being wild with hats and scarves but it's hard to be something you're not! 

Take care everyone and thanks for all the ongoing support 

Love Rose 

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Re: May 2019 Start

Good morning all

 

Congratulations Sewbuddy, on the new arrivals. Very exciting.

 

In relation to the blood counts, I have read somewhere that the Neutrophils need to be 1.5. I’m sorry I can not rememberer the source. I don’t know if other factors may be taken into account when deciding weather to go ahead.

 

Is anyone else having the most inconvenient nose runs???? I think it must have something to do with the hair loss? I have no warning😬 I now walk around with at least 6 packets of tissues!

 

I hope everyone is doing well

xxxx

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Re: May 2019 Start

Hi Sewbuddy, nice to hear from you, what great news 3 new babies😊, bet they will help keep you busy.

Sorry to hear you've had problems this cycle but pleased to hear you're on the mend now. I'm not sure what bloods have to be to have chemo as planned but I'm sure one of the lovely ladies on here will.

I'm not vegetarian but do tend to eat mostly veggie stuff, not for any particular reason apart from the fact I like it😊. Get a bit stuck looking for tasty veggie recipes, so if you know a good cookbook give me a shout, I'm sure my eldest (who is veggie) would appreciate a variation in what I give him😁.

I am sure the lady in the shopping centre was being genuine and you should accept the compliment, I had a man compliment me on my blue wig😂. Don't feel you have to wear your wig in public, by being confident in what you wear it might just help another woman feel comfortable with her choice. Would you think someone was looking for sympathy if they were wearing a scarf? no you wouldn't and neither would I, I think we just get a bit hypersensitive at times, you go girl, the brighter the better - we need some colour in this world, well that's my excuse🤩

Yes, I have read the mountain lion and agree with you, it does reflect our struggles very well.

I hope you get the go ahead for your chemo so you can cross another cycle off and I hope you have a favourable response to it this time😊.

 

I hope everyone else has had a good day and spirits being raised by the positive change in the weather, I really hope everyone else got a bit of sun today, it does wonders to lift the mood I think.

 

Good luck to all having treatment this week, I hope it is kind to you. For those recovering, I really hope the side effects stay away.

 

Joemic x

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Re: May 2019 Start

Good evening everyone, 

Apologies for my silence lately,  due initially to the wonderful distraction of 3 new babies born in the family, so lovely to get good news!

Unfortunately my 2nd FEC has not been kind, it seemed to hit me with one thing after another. Just home from 3 days in hospital on IV Antibiotics.

 

Reading through the thread I am impressed with everyone's dedication to their health and diet,  being a vegetarian I get plenty of good veg, pulses etc. But I do have a weakness for stodgy carbs!

 

As for walking, I love to spend an hour or so in the countryside walking, but seem to be using up all my energy at work, I guess that would count as excercise too, I would certainly enjoy walking in the country more!

 

I am going to try to be really good and ditch the comfort food and double my water intake. You ladies are so inspiring, to reward our bodies with lots of healthy stuff to combat the poison we are taking in can only be a good thing. 

 

The changes to timings and  treatments being cancelled must be difficult to deal with, I am sure we all have our expected dates plotted and expected end date to head for. We have a great positive vibe going on and I'm 100% sure this is helping us cope with the setbacks and side effects

 

I am a little concerned that my 3rd FEC may have to be delayed as I will take my last antibiotic the day before. Do any of you know the acceptable blood results to go ahead or is this different for everyone?? Today my results are Neutrophils = 2    HB =114   White Cells = 4   Platelets =114.   I know these are towards or below the low end of the expected but not sure how robust they need to be. I have 3 days before my pre-chemo blood test. I am hoping this will put me in a better place. 

 

I really enjoyed the Macmillan Headstrong group and found the cotton scarves they used more comfortable than my silky ones - cooler too, with practice I can now tie a variety of styles. I oredered some beautiful bright colours and enjoy wearing them. I did have a setback though - I went to a shopping centre on my own for the first time and someone stopped me and told me my scarf looked fantastic and really suited me. What a lovely thing to say I said and thanked her. Then suddenly had a real drop in confidence, feeling that I was just drawing attention to myself and did people think I was sympathy hunting etc etc. This was the beginning of the fatigue sledgehammer hitting I think. Had to retire to a coffee shop for a rest before heading back to the car. I am still wearing my scarves at work and home but think I will use the wig when I am alone in public places.

 

Although I have not joined the discussion lately, thank you all for sharing your ups and downs, it certainly helps me to know I am not alone in this. And so many good tips and advice!

 

Have any of you read the story of the 'Mountain Lion'. I found it on the coffee lounge section. It is really such a true and amusing analogy of our struggles!

I hope no one is suffering bad side effects!

 

love to you all xx

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Re: May 2019 Start

Glad I inspired you Ruth but truth is you inspired me with your intention to have a brisk walk after the school run😊. I went for a walk for the first time in a week oh boy I never realised how unfit you get on chemo in a very short space of time😖. My thighs and calves sure felt the pressure, mind you I did decide to start by walking up hill first🙄. After a mile they settled down and am now glad I did, I feel more awake.

 

The car oh what an expense, it passed but I still had to get the big service. Decided not to skimp as I wanted the air and pollen filters changed - have heard they become ineffective when not done. I also had the air con re-gassed, again if it's not done every 2 years it just regurgitates bugs and stuff around the car and you breathe it in😟, I've had my car 8 years and have never had it done.

Ladies you might think why on earth am I going on about this rubbish, well truth is I didn't realise the health implications of the above and to me there's no point looking after our diets and fitness if we neglect other areas which can also have a negative effect on our health, so just thought I'd share my findings incase there are others who are unaware.

 

Keep well Ladies and I hope this week is kind to everyone.

 

Joemic x 

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Re: May 2019 Start

Good morning

 

what a fabulous message to read Joemic, first thing on a Monday morning 😊, I am getting the boys ready for school and looking at the weather. Your message has inspired me to go for a (fairly brisk) walk in the drizzle after dropping off, to start the week well.

 

Good luck with the MOT, I think we can all relate to how a car feels about this now.

 

xxxxx

 

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Re: May 2019 Start

Hi Ladies

It's good to hear that you're still positive despite the frustrating set backs you are experiencing, even more so when you're at the mercy of your neutrophil's ability and willingness to behave themselves. It seems like a slap in the face when you are doing everything you possibly can to be as healthy as possible, following recommended diets etc and it still isn't enough this really is a difficult disease. It's hard to stay positive when faced with these adversities but you show so much strength and spirit throughout and spring back again, with these qualities ladies you will overcome these set backs.

 

Talking of diets, what sort of stir fry sauce do you use? Most recipes I find seem to contain a heck of a lot of salt (despite my recent craving, not my favourite thing, I can live without it). I'm basically trying to find something which tastes good but you only need to sprinkle a small amount over stir fry veg to give it a subtle flavour without having to cook the veg in it, I prefer my veg al dente not soggy. I'm trying to find an alternative to steaming veg for a change. Just to make it more difficult I tend to dry fry my food, its rare I use oil. Any ideas anyone?

 

I managed to get the ironing done (school uniforms ugh!) and I had to do a bit of car mechanic stuff like cleaning the windows, lights, topping up oil, water etc and filling up the tyres, not much really but before this BC stuff I would have whizzed through it but it is so darned tiring nowadays unfortunately I couldn't leave it as its got its mot tomorrow and they've started failing them if you haven't done those few things. To be fair I wouldn't have done it otherwise but because I knew it had to be done it helped motivate me, although not for long I ended up going to bed for a couple of hours to recover.

 

So my day has been rather uninspiring and mundane, I hope you all had a much more interesting and inspiring day. Good luck to anyone having treatment this next week and fingers crossed for those who hope to recommence, I hope it goes well for you.

 

Joemic x 

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Re: May 2019 Start

 

Hi SP

 

thank you, I wasn’t sure as I have read differing advice, but I lost quite a bit of weight after the first EC so was told to eat more calories (anything I could manage) to regain.....hence the white toast, but for the second 2 weeks I have been trying to eat well. I wondered if there was anything particular...but it doesn’t sound like it.

 

I imagine the delay is almost as hard as going back to the initial waiting, all of these milestones are important ‘ticks’.

 

I hope everyone has a restful night and positive progress this week🤗

 

 

xxxx

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Re: May 2019 Start

Hi Ruth,

 

I’m told that you can’t really boost white blood cells with foods. The injections following each chemo are the best thing to help and I’ve had those each time. When I eventually have my 3rd treatment the consultant has increased these from 7 to 10 days. 

 

I’ve spoken with a nutritionist and I’m eating a really healthy diet with lots of fresh vegetables and fruit plus some nuts and seeds and I’ve increased my consumption of pulses, which I like anyway! I don’t eat processed foods at all and cook everything from scratch.  I have just started making a green smoothie each morning to increase my consumption of leafy greens and have finally found (after many disasters!) a combination which tastes good!!!  I try to eat fresh vegetables from each colour category each day (a tip from Dr Chattergee’s book, which is brilliant!) plus I am taking a daily Vitamin C supplement because of the mouth problems. However, I’m anxious about taking more supplements as I’m concerned about consuming so any drugs. I’d rather stick with natural foods......I’m fast becoming an “mine of useless information”  on healthy eating!? I’m also walking and resting when tired so I’m not sure what else I can do to help my body cope? Even with all of this, I have a low neutrophil count! Very frustrating!? 

 

This delay really is a test of my patience and resilience! 

SP

x

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Re: May 2019 Start

 

Wow....50 miles! you really deserve to go ahead on Friday with that level of effort. I’m sure the extra time will have boosted your levels. Have you been given any advice about what to eat to help with this, I am keeping to a generally healthy diet (with the exception of my body weight in white toast, real butter and marmite week 1😊)

 

xxxxx

 

 

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Re: May 2019 Start

Hi Ruth, 

I think, if my 3rd chemo goes ahead on Friday, that puts us on a pretty much identical pathway? I will have a 5 week gap and hopefully start Taxol in July,  if all goes to plan. 

 

I’m just praying that my neutrophil count has improved by Thursday, as this delay is depressing... and my daily walks in the rain and cold are just hard work. We need some blue sky and sun to improve the positivity! Mind you, in this cycle, I’ve walked over 50 miles....not bad?! Even my consultant was impressed!! 

 

SP

x

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Re: May 2019 Start

Good morning everyone

 

its a much better morning here this morning (it’s dry and warmer...nothing resembling sun yet!)

 

the weather does does make a big difference to this process doesn’t it. Energy levels, motivation etc. I know it’s not been great, but I keep thinking I would have struggled far more going through this in the winter.

 

I hope everyone is feeling as well as possible, I am aiming to make the most of this week before 3rd EC (and final - if it goes ahead) on Friday. Then move to Paclitaxel weekly in July.

 

This seemed like a lifetime away, in April so we are making progress, albeit frustrating and disheartening at times, we will get there 😘

 

sending lots of love and hugs to all 🤗 

love Ruth xxxx

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Re: May 2019 Start

Our injections are for the same thing although they might have different brand names, mine are called Zarzio.

I bet you wear that fetching red colour very wellSmiley Very Happy.

Keep well

Joemic x 

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Re: May 2019 Start

Hi Joemic, 

 

I'm feeling ok so far so fingers crossed. Definitely less tired and light headed this time . I Hope the injection doesn't bother you tonight and you get some rest after todays stoic effort in the garden - you are pretty amazing just getting on with it like you do. I'm not sure what the injection is for as I think we are having different treatment but I do inject my tummy to boost the white cells. The first cycle I didn't know what I was doing really and messed up the first 3 (probably didn't help). This time I know I'm doing it right as my bones actually ache after. They say no pain no gain! I also have the  beetroot look again after the steroids, but at least I know this will pass 😊.

 

I hope everyone else is Ok? . Seems very quiet so I'm taking its a good sign.

 

Mangomum x

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Re: May 2019 Start

Hi Ladies

 

I hope people are feeling a little better than recently. The rain stopped today for a short while hurraySmiley Very Happy, I took the opportunity to quickly cut the grass - totally shattered afterwards but at least I felt like I achieved something at last. Felt even happier when it poured it down less than 15 mins after, that I managed to get it done. Getting a tad fed up with the wet weather now, looking forward to some sun and then I'll complain because I don't like the sun muchSmiley LOL

 

Just had my last Zarzio injection tonight for this round, glad because my abdomen is getting a little sore but I just can't bring myself to inject it in my legSmiley Frustrated. I'll see if I end up waking up in the middle of the night feeling as if my teeth are falling out, it happened after my last injections the last two times, if it does then that is obviously going to be my side effect from itSmiley Sad.

 

Mangomum - I hope you tolerate your next cycle better too, I think any deviation is going to cause anxiety but as you say our regimes are belt and braces. We have to keep a positive attitude, if nothing else it should help us get through and I'm confident we all will then we can worry about radiotherapy, surgery, hormone therapy whatever is the next step for each of usSmiley Happy

 

Hope everyone has a good weekend, hopefully not too wet

 

Joemic x 

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Re: May 2019 Start

Hi,

I know that's what I thought. I think one reduced session is better in their opinion than ending the Fec part after 1 or 2 cycles and if I'm ok this cycle I'm hoping I'll be back to 100% dose next time. From what I have read the Docetaxel part cycles 4-6 should be better tolerated - although throws up different side effects. It's all a worry as we just want the best possible outcome and a straight foward path to achieving that. Any setbacks add to the worry. We have to put it into perspective that this is a precautionary belt and braces measure in the first place as the cancer to date has been removed. I was fortunate to have Bone scans, MRI and Ct scans just before my masectomy so I try to rationalise that for now it's contained and any rogue cells will still have a good chance of being abliterated. Unfortunately there is no gaurentee that it won't come back. I pray for the day we get to that stage for our children /next generations and find a out and out cure so they don't live with the lingering uncertainty. 

 

Mangomum xx 

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Re: May 2019 Start

Hi Mangomum

 

It does sound confusing doesn't it, if a reduced dose won't cause any harm then why give a higher dose in the first placeSmiley Indifferent. I guess they are probably thinking a reduced dose or two over the whole regime won't be a problem.

Glad to hear your white cells are back to normal, lets hope your red cells go the same waySmiley Happy

 

Hope you can keep the nausea at bay

 

Joemic x 

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Re: May 2019 Start

Oh SP, I feel your frustration, I would be hugely disappointed if my chemo was delayed as well, I think once we know the plan we just want to get on and get through it, any delay understandably knocks us for 6. I know what you mean when you feel you're being punished for getting the darned disease in the first place, I still feel that and certainly felt it when some of my diagnostic tests could only be described as barbaric, I do try not to think about them as I find the memory of it traumatic and quite frankly hard to get out of my head. It must be doubly hard for you having been here before, it must compound your feelings and impact negatively on your mental health but hopefully your treatment will prove successful this time.

 

I have my fingers crossed that you can continue with your treatment next week and nothing else crops up to delay it any more. I'm with you on the weather front, it's been terrible here too, I'm looking forward to the sun breaking out at least for a short while so I can get out for a walk - I'm feeling the fatigue and I'm sure it's related to the lack of exercise. Walking helps lift the mood too, which is certainly needed on this never ending journey. 

 

Stay as well as possible

 

Joemic x 

 

 

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Re: May 2019 Start

Hello and welcome Mikkey

 

Can I ask what is not going ahead, chemo or next cycle?

 

Joemic x 

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Re: May 2019 Start

The disappointment that I’m not going ahead is huge!!

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Re: May 2019 Start

Hi SP, 

It's really frustrating having a delay but low white bloods is definitely a no go and they won't dose reduce for this either ( I asked last week). Mine went ahead yesterday but at a reduced amount due to my anaemia. I'm hoping all will be back to normal next round so I can have the full dosage.

 

Fingers crossed for next week. I'm sure they will bounce back by then. 

 

Mangomum xx

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Re: May 2019 Start

Hi all, 

The one thing we now all know for sure is that chemotherapy throws up lots of unexpected and unwelcome surprises. It is undoubtedly a roller coaster of emotions, symptoms and problems...

I had a bad day yesterday. My oncologist has postponed my 3rd chemo treatment because my neutrophil count  is too low to proceed safely. I have to wait another week to give my body time to hopefully recover sufficiently to have the treatment.

I’m gutted and very frustrated, as I was all geared up for my chemo to happen today. The disappointment that I’m not going ahead is huge!! I’m on the growth factor injections but he says it’s because I’ve had chemotherapy in the past so my bone marrow  is extra sensitive to the drugs...feels like a further punishment for getting this wretched disease again. 

Sometimes life just isn’t fair!!

I hope everyone is coping better then I have done today? To add to everything, it hasn’t stopped raining here for more than a week?! 

I need some sunshine to lift my mood?! 

SP

xx

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Re: May 2019 Start

Hi, 

 

It went ahead today on a reduced dose which I'm slightly concerned about as have read that this may increase my odds of reaccurance, although the oncologist said it wouldn't 🤔

I feel OK - a little bit more nausea this time, which I escaped last time. I may also need a blood transfusion at some point as my red bloods are low ( hence lower dose this time) but good news that my white cells were back to perfect. I don't think I'm going to be an easy customer for my poor oncologist 😂.

I can't sleep either as pumped with steroids!!

Mangomum xx