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May 2019 Start

Member

Re: May 2019 Start

Morning Mominette, 

 

Just wanted to send a good luck hug 🤗 for today. Will be thinking of you.

 

 

Mangomum xx

Member

Re: May 2019 Start

Hello again Mangomum

I will let you know how I get on tomorrow.

I am just about to pop 4 steroid tablets and 4 more later today!

I used to be the person that wouldn't even take a paracetamol unless it was really necessary

and now I feel like a walking pharmacy!

Be in contact soon.

Big hug from me to you

Mominette

 

Member

Re: May 2019 Start

Hi just seen your post about cold cap.  I have now finished chemo and from the Feb group.  I cold capped all the way through and managed to keep a full head of hair.  If you have bald patches you can use a theatre cap to protect your scalp.  Hope this helps x

Member

Re: May 2019 Start

Ps, good luck for the MRI. 

 

Mangomum x

Member

Re: May 2019 Start

Hi Ruth, 

 

That sounds really good. Just had my 3rd round of Fec and first time I've had some pains in my toes. I think my next regime (docetaxel) is worse for this so thanks for the tip!

 

Mangomum xx

Member

Re: May 2019 Start

Hi Mominette, 

 

We are two peas in a pod! I've had my Fec reduced due to being neutropenic on my very first cycle - not sure if I will continue with a reduced dose for the docetaxel . My cold cap hurt a lot more on my last cycle  due to being so thin with bold patches on top. I'm going to see how much comes out this time before deciding if it's worth using it. 

 

Really hope the first  cycle of docetaxel goes ok and I'll be watching for updates as we seem to be having similar issues 😕

 

Mangomum xx

Member

Re: May 2019 Start

Good morning all

 

I am just getting ready to head off for my MRI, so it’s a bit short..... but I am starting weekly Paclitaxol on Friday and doing some reading this weekend, have ordered Polybalm for fingers and toe nails, the website has a link to the study done which shows this can reduce the effects of the chemotherapies that come under this group (I think they are ‘T’).

 

it isn’t cheap, £41 for two tubes (including postage) but I was anxious that any effect on my toes/pain might stop me being able to get out and about. It’s like a paste that you massage into the cuticles.

 

I wanted to to let you know about it (although I’m sure many of you already will) in case you wanted to check it out. 

 

Good of luck to everybody going again this week, and big hugs to those recovering.

 

xxxx

Member

Re: May 2019 Start

Hello Mangomum

I see you have had your last FEC too.

I start docetaxel tomorrow. I was meant to have it last week but I got an infection so it was

delayed for a week. I did contemplate stopping it all as the last FEC treatment hit me hard.

They are going to give me a lower dose of docetaxel (75mg/m2 instead of 100mg/m2).

I see you have used the cold cap too. Sadly, it hasn't worked so well for me and the top of my

head has very little hair. The last cold cap hurt as I didn't have much hair on the top of my head

so I am not going to bother with it tomorrow. To be honest I don't have too much hair left!! Another

lady who has had all her treatments did really well with it and seems to have all her hair although she

tells me it has thinned. She had the same treatments as me and used the same type of cold cap. I 

don't know why it works for some and not others. So far, I still have my eyebrows and eyelashes which

helps. Good that I don't have to worry about shaving armpits anymore!

I am a bit nervous about tomorrow as a new drug but we are all in the same boat and I am sure we all

get nervous from time to time.

Take care

 

Mominette 

 

Member

Re: May 2019 Start

Hi, Ilovehoney, 

 

I've just had my last round of Fec too and had similar side effects to you with my second cycle. Touch wood I haven't had the cramps and upset tummy yet this time which like you came on almost immediately. I too have cold capped and have two bold patches on top of my head. I've got some hair bands too plus some powder top sprinkle on that is the same colour as my hair to hide the white shiny bits. It really does work.

My nurse went through the Docetaxel with me and only gave me steroids which has been increased and needs to be started the day before. I won't need the sickness drugs apparently? She said it effects the limbs and muscles more and not to be surprised if I can't move about too much for a week as it can feel like flu.

Good news the cold cap only needs to be on for 20mins after unlike the 90 mins for fec. 

 

Fingers crossed we get through this time without too many tummy problems. Half way there now!!

 

Wishing everyone else well. I'm catching up with posts now so hope everyone is OK now  and doing well. 

 

Mangomum xx

Member

Re: May 2019 Start

Hi all, 

I’ve been a bit quiet lately but I’ve been keeping up to date with your posts by popping on every now and then.  I’m a week post my 3rd FEC and feeling a lot better this time round.  My symptoms seem to come almost immediately following treatment and then I’ll have nothing for two days and then it hits my like a thunderbolt...constipation and diarrhoea (!), extreme fatigue, fuzzy head, nausea, stomach cramps and headaches.  Thankfully it was short lived this time round and I was feeling semi back to normal around a week later.  My next three cycles are Docetaxel and I’ve heard that the side effects can be similar but also different!  

 

One of the only pluses I’ve found to having chemo is lovely soft skin!  It could be the lack of hair or maybe it’s all those cells busily trying to rebuild themselves but it is very strange.  

 

I too have been trying to enjoy the sun by getting out into the garden and doing a few little jobs.  I know it’s a sign that I’m feeling better when I start looking on Pinterest for ideas for things I’d like to do in the garden.  I had planned to go to Chelsea this year and found myself sobbing watching Rachel de Thame as she returned to Chelsea having undergone bread cancer treatment last year. I will be there next year come what may!!!

 

My hair seems to be responding to the cold cap and ‘touch wood’ seems to be staying in reasonably well. Although my husband and I now have matching bald spots right on the tops of our heads! Thankfully an Alice band covers it (mine-not his!).  I experimented with a clip in fringe yesterday but I was nervous about going out with it as the last time I had a fringe was probably around 30 years ago! 

 

I hope everyone’s next cycles go as well as they can.  I’ve got two whole weeks till my next one and I’m planning to make the most of it.  I’m seeing friends on Saturday night so looking forward to that but also a bit nervous as I’ll be right in the middle of my lowest immunity point 😕.  I’ll just have to get my friends to battle the bar for my drinks!  My husband is worried bless him but he’s desperate for me to have a nice night out as well as it’s been ages since I went anywhere without him.  

 

Anyway, I’m off to have a very small red wine before bed.

 

Take care all. 

 

I 💕 🍯 

 

 

 

 

 

 

 

 

Member

Re: May 2019 Start

Hi guys, very glad to see positive results from scans etc.  It is so scary waiting for results and such a relief when the news is good (although in some ways I think even when news is not as good as you'd hoped for it is still a relief to know what you're dealing with and have a plan in place 😊)

 

I see that a few people are having their op after chemo finishes - just to reassure you, I found my mastectomy much easier than expected.  I had some minor complications resulting in an extra night in hospital but once I was home I found I didn't even need to take painkillers as there was so little pain.  For anyone who is not having reconstruction, can I recommend the Flat Friends group on Facebook?  It is a lovely, positive, supportive group and it is also secret so you can post there knowing it's not on show to the general public.  If anyone would like to join and can't figure it out, let me know and I'll point you in the right direction 😊

 

Debi - just wanted to say how beautiful your artwork is.  So delicate.  How on earth do you get such intricate cutting done?

 

Wishing everyone a lovely day 😊

Member

Re: May 2019 Start

Good morning everyone,

What great news Debi2, that must really spur you on, I hope RuthGr you also get positive results at your scan next week. xx Debi2 I love your feather picture, very talented lady! I hope your feeling more upbeat now xx 

Rose2020, this feeling low really gets you down doesn't it? - I find that harder to deal with than the physical symptoms, I am usually Mrs Positivity in everything, hopefully you're starting to feel more yourself xx

Managomum, those pins and needles drive you mad dont they?, I think I will call and discuss the possible  long term effects because I now have some totally numb areas on my toes. How nice to have a family celebration to lift your spirits, and feel normal. xx

Banabrain, I'm glad FEC 3 has not been too bad for you. Happy belated birthday! - next year you will have to insist on a double celebration to make up for it! I had my first chemo the day after my birthday - My children and grandchildren bought gifts that ended up looking like a care package lol! xx

Joemic, so sorry you are going through a rough patch - phlebitis is awfully painful, I do hope it has improved. Glad you are coming through ok. xx 

SP, I am so looking forward to my LGFB session, I still have not been given a date thoughSmiley Sad I've heard the goody bags are impressive. Did you learn any good tips? I desperately need help with covering the awful black rings around my eyes - I look like Fester from The Adams Family! How lovely to be able to sing - that must give you great pleasure. My daughter has a lovely singing voice, but she certainly doesn't get it from me haha! xx

I was so looking forward to having my 5 days off and being able to enjoy them - my fatigue, low mood and ulcerated  mouth/throat effectively used up my first three days with a sleep/painkillers/sleep monotony. Yesterday afternoon my friend took me to a little baby boutique to buy gifts for my new nieces/nephew, and I managed to stay awake all evening. This morning the sun is shining and I was awake early, the ulcers are healing and I feel like I am out of the fog at last - day 11 from chemo, this one really wiped me out. But I've had the last of the Epirubicin so Im feeling positive about the next round. I am going to spend a relaxing day pottering around in my garden -the chores can wait! or better still be done someone else haha. 

Hope you can all grab every little pleasure available to lift your spirits.

 

love to all

xxxxxxxxxx

 

SP
Member

Re: May 2019 Start

Morning Joemic, 

 

I’m also really sorry to hear that you’ve been having a tough time. I hope the side effects ease this week for you. 

 

Strangely, I’ve had fewer side effects after my 3rd EC. The lightheaded feeling was the worst but that has now gone! My stomach continues to gurgle as soon as any food or drink touches it and then my whole system “churns” as I digest it?! It’s quite a sound!! But, no sickness,  so I’m not complaining!! 

 

I’m going to a nutrition session at Maggie’s Centre this morning so I’ll post if there are any tips we don’t know about!!!

 

Yesterday I did the “Look good, feel better” session there and came away with an amazing goodie bag! There must be £250 worth of skin care products and makeup, all apparently donated by the companies!! All are good brands, so quite a gift!? 

 

Tonight I’m off singing a Capella with my chorus....good to have a “normal” day as I’ve not had many of these in recent months!! 

 

SP

x

Member

Re: May 2019 Start

Good morning Joemic

 

Its lovely to hear from you, but I am really sorry you’ve had a hard time. 

 

Sending a huge hug, and I’m sure you are out the other side for this round, and only 2 more to go (although I know at times that feels like a mountain). 🤗😘🤗

 

love Ruth. Xxx

Member

Re: May 2019 Start

Good morning everyone👋

Wonderful positive news for you lovely ladies, it's great to hear everyone is overcoming the hurdles this thing throws at us👏🏻.

I had my 4th EC last Friday, I've developed phlebitis so they were going to delay it but after a dose of antibiotics, it went ahead, some of the swelling has gone but it's still darned painful but can't complain as I've had way less side effects than some of you troupers.

I've felt the fatigue for the first time and like many of you very low in spirits, losing interest in everything, hence my lack of appearance on here but I feel my usual self this morning so taking the chance to post in case my mood drops again.

Only 2 more EC to go, looking forward to this stage of my journey to come to an end, as I am sure you are all visualising the end of this toxic part of your journeys.

Well lovely ladies, I hope everything continues to be as side effect free as possible. Good luck to those who are having treatment this week🤞crossed it goes well. We've got this.

 

Joemic x 

Member

Re: May 2019 Start

Morning ladies

Great news about your MRI Debi and thank you for being so reassuring about side effects I've turned into such a worrier since this all started! I think its spending so much time on my own and having too much time to think when normally I'm rushing and busy all the time! Hope peoples moods are lifting after treatments I think feeling low has been the worst thing after the last treatment for me too just hoping it starts to lift soon.

Sewbuddy I don't know how you are managing to work you must have so much willpower and determination I hope you've got some well earned holidays planned soon though.

A few people seem to be having scans at the moment 🤞for positive results for you all. My consultant said she wouldn't do another MRI until towards the end of treatment so about September but that I'd have heart scans again after EC and at the end of the full 8 cycles.

Take care everyone 

Love Rose 

 

Member

Re: May 2019 Start

Good morning everyone

 

RuthGr i have been having MRI scans after every two treatments, today i will be going for treatment 5/7 (Docetaxol, Herceptin and Pertuzumab) i think i will have another scan after number 6 - unless they decide to wait and do the next one after number 7 before surgery.

 

Bananabrain i too have got audiobooks for the days i am too tired or achey to do much.  I have also picked up with my crafting - i do different pictures - i am currently doing one for my nurse team at the chemo centre for when i finally ring the chemo finished bell.  Heres the type of thing i do

                                                      P1030586.jpg

 

I too think you are all great managing to go to work, unfortunately i have been off since treatment began because i work where there are a large number of children and elderly passing through every day and i could easily pick up infection so was advised against it.

 

Well got to get my bag packed for chemo unit today.

Take care

Debi

Member

Re: May 2019 Start

Hello 

 

that is is brilliant news Debi2, I can believe that the negative side effects are more bearable knowing it’s working.

 

I have an MRI on the 8th July, are we all going to be getting some sort of check at this stage? I assumed this was timed for after the 3 ECs or maybe because it’s nearly 1/2 way. 

 

Bananabrain, I also felt quite low for the first 4/5 days after this one, and like you Mangomum I struggled with staying in doors and not being able to do anything. I did get audiobooks (I find reading hard at this point too) which did help a bit and tried the adult colouring in books, which kept my mind occupied for a while, then I was gradually ousted as my two rediscovered the joy of colouring (I had treated my self to new sharp pencil crayons which they loved!)

 

Sewbuddy, sorry to hear about your side effects this time and hope they are settling down now, I am so impressed you are also managing to work, and good luck with the fundraiser. 🍀

 

SP and Joemic, hope you are both having positive weeks and are busy enjoying yourselves.

 

sending lots of love to everyone good luck to those progressing this week...July already .... we are getting there 😘

 

Love Ruth 

xxxxx

 

 

 

 

 

 

 

 

Member

Re: May 2019 Start

Hi All

 

My MRI showed more shrinkage, i started at  2.8cm and now i am down to 1cm.  I still have 3 x docetaxel to go (next one tomorrow).  At least the side effects are more bearable when i know its doing the trick.

 

Rose2020 don't worry too much about Docetaxel, it does come with side effects but they are doable. Everyone is different, i worried before EC but coped and i worried terribly before Docetaxel, Herceptin and Pertuzumab but i am coping, i am sure you will too.  And just remember any questions about how you are feeling call your team - i certainly did and they were wonderful, totally putting my mind at rest.

 

Take care

Debi 

Member

Re: May 2019 Start

Hi guys, nice to see how well everyone is doing.  Looks like most of us are near or past the halfway mark which seems unbelievable!  I really thought treatment would drag on but it seems to be going so quickly 😊

 

I haven't posted cos I don't feel like I have anything much to say!  Got through my third FEC with no new side effects but I have noticed I get very down during the first week or so after treatment.  I guess it's a combination of feeling rough physically and the emotional side of the whole situation.  It wasn't helped this time by it being my birthday a few days after my last treatment - I usually love my birthday but this year just felt really flat and a bit sad not being able to properly celebrate 😐

 

Anyway, I feel like I've bounced back pretty well now and will be getting out and about in the sunshine today 😊

 

Love to all

Banana

Member

Re: May 2019 Start

Morning everyone, 

Been hectic this week as it was hubby 50th and grateful to say I managed a couple of nights out this week plus a belated party for my 12 year old yesterday. Fortunately this was my good week as I had been suffering from the runs ( new symptom) during the previous two weeks! 

 

 

 

Sewbuddy, like you I have been having lots of tingling and pins and needles in my left hand and right foot? I am also going to ask to check my heart as I'm getting irregular heart beats but not sure if they are pulpitations? I did have them when I was in hospital and ecg came back normal but this has gone on longer on this cycle and I'm worried about long term damage. I love the idea of an afternoon tea to raise money. 

 

Debi2, also wishing all is good with your MRI this week.

 

Rose 2020, hopefully I will be joining the half way stage on Wednesday and the end of the Fec part of my treatment. I'll be starting Docetaxel and slightly worried about the different side effects that might bring. 

 

RuthG, great attitude and totally agree we need different things to help us through and that is changing for me with each cycle. I have been less active due the runs and not being able to leave the house much. I started to feel very down towards the end and I'm sure it was due to being on my own more and not getting much excerise. This past week I have felt really good and have been doing normal things and been out for a couple celebrations so feel mentally so much better. 

To everyone else, hope you are all doing OK and pushing on with the treatment. 

I'm looking foward to Wimbledon starting and Woman's football semi final to keep my spirits up this week. 

 

Mangomum xx

 

Member

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

SP
Member

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

Member

Re: May 2019 Start

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

Member

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

Member

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

 

 

 

 

Member

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

 

Member

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

Member

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

 

SP
Member

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

Member

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!

 

 

Member

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 Smiley Sad

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

Mominette Smiley Happy

Member

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 

Member

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

Member

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

Member

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

SP
Member

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

Member

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

Member

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

Member

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

Member

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 

Member

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

Member

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

Member

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 Smiley Happy

 

Mominette

 

 

Member

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 Smiley Happy

 

Mominette

Member

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  Smiley Happy

Member

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 Smiley Sad

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

SP
Member

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

Member

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 

Member

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