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May 2019 Start

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

Member

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

Member

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

Member

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 

Member

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

 

Member

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 

Member

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

SP
Member

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

Member

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

 

 

SP
Member

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

Member

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

Member

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 

Member

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

Member

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 

Member

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 

Member

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 

Member

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 

 

 

Member

Re: May 2019 Start

Hello and welcome Mikkey

 

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

 

Joemic x 

Member

Re: May 2019 Start

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

Member

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

SP
Member

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

Member

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

Member

Re: May 2019 Start

Hi Ilovehunny

 

It certainly is a difficult time isn't it, you can be on the up steaming along then the rug gets pulled from under your feet. Maybe the sore throat had got a bit more of a hold than you thought and the antibiotics knocked you for 6, that coupled with the lower white cells has given your system a bit of a battering. But happily you have come through itSmiley Happy. At least if you decide to write your first week off, it'll be a bonus if you have a good week and if not you'd at least prepared for it. It's such a crap time isn't it, but onwards and upwards we will do this, we will get throughSmiley Very Happy.

 

I'm glad your hair has stopped shedding as much and crossing my fingers that the cold cap continues to work for you. Hold onto the thought that every cycle completed in one nearer the end, it does seem never ending but it will come.

 

Mangomum - I hope your 2nd FEC went well today and you have minimal side effects - hopefully none!, you deserve a break this time around.

 

Keep as well as possible ladies

 

Joemic x 

 

 

Member

Re: May 2019 Start

Hi everyone, 

I’m a week post my second FEC and it’s been so different this time.  I was great for a couple of days and then it hit me like a sledgehammer!  I’m now turning a corner and back to watching tv and doing a couple of jobs round the house but it’s been a real shock and I was so close to just not wanting to do it again. I think it’s so hard to get yourself out of it when you’re in that horrible place-it seems never ending.  The weather has been awful and in a way that’s helped because I don’t feel like I’ve been missing out! 

 

I’ve resigned myself to thinking now that I might as well write off the first week and just accept that that’s the way it’s going to be for me.  I can hopefully plan for the other two weeks and look forward to doing some nice things.  

 

I’ve been doing the cold cap and I was so upset when my hair started to fall out but it seems to have calmed down a bit now.  It’s a bit thinner than it was but you wouldn’t know if you didn’t know me-keeping my fingers crossed 🤞.  

 

I’ve also been on antibiotics as a precaution  for a sore throat.  I think that’s probably added to me feeling so unwell.  

 

Anyway, I hope you’re all as well as you can be.  I keep having to tell myself that I’m a third through and try and look forward to life after chemo but it’s not easy.  

 

I hope you all all get more good days than bad days.  

 

I 💕 🍯 

 

 

 

 

Member

Re: May 2019 Start

Thanks Joemic and Mangomum 

I'll keep everything crossed for your treatment today Mangomum hope  it goes well and you stay well this time🤞🤞. We will get through this with positive thinking and accepting support when we need to. Take care

Love Rose 

Member

Re: May 2019 Start

Hi Rose, 

 

Sending a big hug and hoping you feel better soon. I have my second round of Fec today after my stint in hospital and dreading it too!! Apart from wrapping ourselves up in cling film and wearing mask or never leaving the house or letting anyone in, we are unfortunately all at the mercy of everyday bugs our bodies would otherwise fight off. My oncologist said it is days 7 - 9 that the white cells really drop the most unfortunately right at the time we start feeling better 🙄. It sounds like they caught it early and found the source swiftly. I wasn't allowed home until my white blood count was back to normal.

Take care and you will bounce back from this. 

Good luck to everybody else too. We can do this set backs and all!! 

Mangomum xxx

 

 

 

 

Member

Re: May 2019 Start

Sorry to hear you've had a rubbish time of it this time Rose but pleased to hear you're on the mend again.

I suppose it's difficult to determine whether you got the chest infection due to chemo or it was just an unfortunate coincidence but the main thing is you caught it in time and are on the road to recovery. 

Take it easy and rest when you need to

 

Joemic x 

Member

Re: May 2019 Start

Hello all

Hoping everyone is well. 

I'm finally starting to feel a bit more human again after my 2nd EC last week. Unfortunately I got a chest infection which coupled with the tiredness has made for an awful week! I ended up in A&E having a sepsis screen and IV antibiotics but thankfully didnt have to stay in and was allowed home with oral antibiotics. They seen to be doing the trick now apart from making me feel a bit sick and giving me the runs!!  My first chemo was so straight forward I just expected the same this time so it's been a bit of a shock. I'm already dreading the next one although I know it will be different again. I really hate being dependant on people and not being able to do every day things like cooking and keeping the house tidy all I've done is sleep for the past 4 days!

Well that's enough of my moaning for today. Hope everyone else has been keeping well hopefully we will get some sunshine soon to cheer us all up it looks like November outside not June here! 🤞🌞 Take care

Love Rose 

Member

Re: May 2019 Start

Good evening May ladies

 

It's a little quiet on here at the moment - I hope everyone is steaming ahead with very few irritating side effects. I've just been a bit tired this time, which is exactly how I was when I also had bisphosphonate the last time, hopefully the tiredness won't last long - mind you with the rainy weather outside a few days lazing around wouldn't hurtSmiley Happy

 

Good luck to all who are having treatment this week and speedy recoveries for those who are battling those side effects.

 

Joemic x 

Member

Re: May 2019 Start

Hi Bananabrain, sorry to hear you've been a bit rough but pleased to hear your mood has lifted now, it's hard when it hits but feels much better after. Funnily enough I had craving for salty food after my 2nd EC, I even started adding it to my food and have never done that for over 20 years! Eating loads of salted peanuts and salt & vinegar crisps too as well as adding it to my salads, not a good addition to my diet. Found it lasted a week and a half until it suddenly stopped and i reverted back to my usual of not using salt. I can't say it was due to my taste buds as luckily I've had no difficulties there. I think it may have been due to my increase in fluids messing with my natural salt levels, whatever it was I'm back to normal now.

I'm with you on the wigs front, i've got a pink one and a blue one, had a few nice comments on the blue one when I went out - never had them with my normal hair LOL. Trouble is when you start looking there's loads of nice coloured ones to buy...it'll cost a fortune to buy them all but like you i'm looking for my next to add to my collection. It freaks hubby out when he goes in the bedroom and they're on the wig stands - not that I don't add faces and things just to freak him out moreSmiley LOL a girls gotta have some funSmiley Very Happy

Glad to hear they had at least one boob for you hope it doesn't take too long for the other to arrive otherwise you'll have poked holes in the one you already gotSmiley Very Happy

Have a great weekend sourcing new wigs, don't forget the wig shampoo just to add to the expenseSmiley Happy

 

SP - I might have sounded calm but believe me I wasn't, it really knocked me out of sorts, it disrupted my routine of eating and drinking plus taking my meds - I plan my timings carefully because I'm convinced it helps me wìth side effects - might not but it helps me focus my mind prior to chemo to stop me worrying too much. I'd calmed down by the time I posted last nightSmiley Happy

 

Have a lovely rest of the weekend and good luck to anyone having treatment next week and may we all stay as side effect free as possible.

 

Joemic x 

Member

Re: May 2019 Start

Hi guys, glad to hear everyone is doing so well.

 

On the healthy eating front, when I asked the oncologist what I should be eating, he said "whatever makes you feel good." Which was exactly the answer I wanted to hear!  So I have to say veggie juices are definitely not on my menu!  I do find I'm always hungry though.  The nurse said it was probably down to the steroids but that seems unlikely to me as I've only taken steroids for 3 days after chemo and I accidentally took half my recommended dose this time round anyway.  I'm really craving strong, salty food (I guess because I can't taste so well) and am absolutely loving salad and especially tomatoes.

 

I had a miserable few days after my last FEC - I'm not sure why as the nausea was not as bad as my first one.  Just spent a lot of time feeling weepy and tired and generally sorry for myself.  After a few days my mood lifted loads and I'm feeling fine now.

 

I think I have a new obsession - wigs! I really love my wig and am contemplating keeping my hair dead short when it grows back and wearing wigs to suit my mood.  I'm about to order a lovely pastel blue one.  Been spending so much time on Youtube looking at wig reviews.  I really like the idea of being able to switch up my hairstyle and colour whenever I want.  It is going to be a very expensive new hobby!

 

Got fitted for my new fake boob the other day.  They only had one in my size and have had to order another one in so atm I'm wearing my new silicone one on one side and my softee on the other.  The silicone one feels very realistic - in fact I keep poking each boob to feel the difference - keeps me busy 😁 

 

Hope everyone has a great weekend xx

Member

Re: May 2019 Start

Hi, 

So pleased it went well and you are officially half way through! Fingers crossed for an uneventful 3 weeks  with any side effects.

 

Mangomum xx

SP
Member

Re: May 2019 Start

Hi Joemic,

 

Well done for coping with the last minute changes to your chemo times yesterday! You did well to stay calm. I had a similar problem last treatment and it really wound me up. 

 

Well, I’ve now tried some different vegetable juices and they all look and taste revolting!!! Today’s involved carrot, spinach and celery, sweetened with pear......not to be recommended!! My vegetable consumption from now on will be eaten!! My efforts have been in vain!! Maybe it’s my taste buds at the moment but I can’t  cope with anything weird!  Ho hum....

 

SP

xx

Member

Re: May 2019 Start

Good evening May ladies

 

I had my 3rd EC yesterday, I got a phone call at 1.20 saying I was due for my chemo, yes I said, oh you should have been here at 12.40, really my appt card says 3.10Smiley Frustrated. Can you get here as soon as? yes of course I will. So duly took my meds, fair ran up there in 10 mins but still had to wait another 45 mins to give my meds time to work, I could've took my time instead of rushing but hey ho things happen. Anyway I was hot and had my hand wrapped in a 2 gloves so when they came to insert the canula there was no problem, it was a different vein to the last 2 which I was pleased about as it is rather sore. Only suffered a bit of indigestion last night, so so far so good, time will tell.

 

Ruth - I absolutely love your child's remark - out of the mouths of babes, but on a positive note it must be a relief to know that they are not worryingSmiley Happy. You'll get there with the headgear in the end, just think we might get it sussed then the weather will change and the headgear too, mind you I've got enough different types to get me through the next few yearsSmiley LOL.

 

Becky - I hope your chemo went ok yesterday and you have very minimal side effects.

 

SP - I've been told that if you mix mint with carrots and kale it's doesn't taste too bad - it's not something I would like to try - I love my veg but the thought of it pureed doesn't appeal, I think it's the texture that puts me off. But all credit to you for giving it a go, you might find a palatable combination eventually, good luckSmiley Happy

 

Ilovehunny - Baby shampoo is a gentle option, I think head and shoulders can be a bit harsh, I'm only saying that as when I took my daughter to have her hair dyed the hairdresser advised against washing with head and shoulders as it would strip the colour out a lot quicker - I wasn't aware of that!.

 

Keep well ladies and enjoy the rest of the weekend.

 

Joemic x 

 

Member

Re: May 2019 Start

Hi all

Lovely to hear everyone's updates and tips.

Welcome Becky glad you have found the group I'm sure you will find it helpful even though we are all at different stages of treatment and on different chemo regimens. I do understand your feelings of anxiety I had my 2nd EC chemo on Tuesday and was really worried even though the 1st had gone well with minimal side effects but it went well and so far I still feel really well. I know Macmillan do offer 1:1 counselling support if your anxiety doesn't improve they might be able to help?

Fingers crossed for yours and Joemics treatments tomorrow 🤞🤞xx

Sorry to hear your treatment was delayed Mangomum I know we all just want to get through this all as quick as we can but have to trust in our oncology teams to do what's best for us I'm still trying to get my head around having the 8 cycles of chemo before the surgery even though the surgeon and the oncologist both explained why it was done that way with my type of cancer.

I saw the ongologist this week I asked about nutritional supplements but she said she just recommended healthy eating lots of water and exercise but to take a multivitamin if chemo was affecting appetite. She said some people might be advised to take added vitamin d if they were on other chemo routines but not needed for my 4 cycles of EC and then 4 cycles of doxecetal, perjeta and herceptin.

I'm definitely getting used to my wig now but do like the look of the fringe hairband as think it will be cooler with a scarf now the weathers warming up a bit!! 🌞

Take care everyone 

Love Rose xx

 

Member

Re: May 2019 Start

Hi, 

I had my second cycle of FEC today and it’s a lot different from my first.  My first one was grim and I had side effects almost immediately so I was nervous about today but it has been a lot different.  I had my anti sickness drugs through my IV which may have made a difference.  I’m keeping my fingers crossed that I’ll be better this time and that it won’t be as much of a shock to my body.  At the moment I’m eating biscuits every 5 minutes which isn’t good for me but when you feel like this I think you just have to eat what you can manage.  Weirdly I was craving lots of salad on my last cycle which was good so I’ve got a lot of that in.  I’ve also got a mouthwash and lemon sherbet sweets ready for when my mouth starts to feel gacky.  There’s also a spray which you can get from your gp to help with a dry mouth and I found that helped.

 

I hope everyone else’s next cycles go ok-I feel like I’ve learnt a lot since my last one so hopefully I’ll be a lot more prepared now moving forward but as others have said, no two cycles are the same.  

 

On the hair front, I’ve been using the cold cap but at the moment I think it’s a bit too early to say whether it’s working. My hair has been falling out quite a bit over the last few days but it’s still looking as it was post treatment.  Out of interest, what shampoo are people using? I’ve used head and shoulders and a handmade natural one but I’m only washing my hair twice a week and combing it with a wide tooth comb.  I suppose it’s inevitable that some hair will fall out but we’ll wait and see if it all goes. 

 

Have a a good weekend everyone.

 

🥰

 

 

Member

Re: May 2019 Start

Hello all

 

i hope everyone is having a good day and sending positive vibes for those of you going again tomorrow (😘)

 

It certainly is not easy continually replacing one worry with the next! I am the same, I thought once the first one was over I would know what to expect for the next 2 and this was some comfort (as I am a planner) but realising each one could be different then changing drugs doesn’t let us settle.

 

I take a lot of comfort from hearing everyone’s progress and shared experiences and tips. SP I am inspired by your eating ethos, I had slipped a little, justifying eating whatever I fancied but in the long run this won’t make me feel better, so back to the healthier options.

 

In terms of headwear - I got the fake fringe from Hats4heads, they seem to have good range of a few options on here, but this is the link to the fringes:

 

https://www.hats4heads.co.uk/shop/real-hair-fringe-on-soft-jersey-headband/

 

I am going to close shave the rest of mine tomorrow night, so will look into the bamboo caps, as it feels a waste not to try with the wig again.

 

On a lighter note, the school have offered my 2 the option of writing a worry book, to help them with any worries they have, and yesterday during tea, my youngest asked me to contact school to tell them ‘I’m not worried about you now as I have been asked to do tag rugby and that this taking up all of my mind”

 

So it’s good to know where this fits in the grand scheme of things 😀

 

lots of love Ruth

xxxx

 

 

 

 

 

 

 

SP
Member

Re: May 2019 Start

Hi Becky, 

 

 Welcome our group. Joemic is right in what she says. It is perfectly normal to get anxious prior to your chemotherapy treatment. I’m sure that this happens to everyone, regardless of where you are in your treatment. The problem is that you just don’t know how your body is going to react each time. It never seems to be the same. 

 

I am also on 3 lots of EC. I have my 3rd treatment next Friday, if my white blood cells are ok. I will then have 9 weekly doses of Taxol. No Carboplatin for me as I’m not BRCA 1 or 2. So there are similarities. However, I’ve already had my mastectomy so the chemo is an added extra to hopefully prevent recurrence. I thought I was done after surgery but this wretched disease has a way of repeatedly hitting you with something. It really is a roller coaster of emotions and side effects. But, as this thread proves, we are all coping with what is thrown at us and you will too.....and we are here to help if we can....

 

The trick is to stay positive. Make yourself believe that each treatment is helping your body rid itself of cancer cells. Do everything you can to rid your body of toxins after each chemo so then you will cope better with the side effects eg. Drink LOTS of water, walk every day, eat healthy, nutritious food, rest to help your body recover. It is coping with a lot. 

 

On the wig discussion....I have bought a bamboo wig cap that goes under the wig. It helps your scalp to breathe so you don’t get as hot, plus it makes the wig more comfortable. It really does work for me so was worth the investment. 

 

I am Mrs Healthy Eating but that doesn’t always mean I succeed in my efforts. A friend advised me to have a vegetable juice each day to increase the antioxidants in my body. This apparently helps with the chemo side effects.  The same friend loaned me a very posh juicer to try as I didn’t want to buy one of I can’t cope with the results. Now, I like vegetables but  I have now made two different vegetable juices and I can honestly say that they are disgusting!!! My husband says they look like swamp water....and they taste pretty much like this too!!! I’m trying to find a combination of veg that is vaguely palatable! I suspect that the juicer will be returned very soon......ah well....I tried!! 

 

SP

xx

Member

Re: May 2019 Start

Hi Becky

 

Don't worry, we all get anxious before our chemo and I'm certainly no different, I suppose we worry because although we've already had some we are still unsure how the next dose will affect us. It's toxic stuff and to be honest I think we will always be anxious prior to each dose, I think anxiety and worry is unfortunately part and parcel of this dreaded diseaseSmiley Frustrated; if you're anything like me once I've sorted one thing and breathe a sigh of relief, I immediately replace it with another worry. I suspect that practically everybody else on here is the same, we've all been knocked for six and our worlds been turned upside down but we WILL, including you, prevailWoman Happy. Tomorrows treatment will go well for both of us. Keep talking and if you have any worries at anytime let us know and we will all try and help.

Good luck

 

Joemic x 

Member

Re: May 2019 Start

Hi Joemic, 

I'm on 3  cycles of EC followed by paclitaxel and carboplatin. It's for a small lump but pre-surgery because it's triple negative breast cancer and grade three. Yes I love my wig and have also had comments I never had with my own hair. Love the sound of your wigs! I've gone for something similar to my own hair, but it's like a better version.

 

Hi Sewbuddy, 

Thank you for your welcome. 

 

I'm starting to get nervous about second chemotherapy tomorrow. I was so anxious last time but thought I'd be ok after having it but I'm still feeling anxious. 

 

 

Member

Re: May 2019 Start

Hi Mangomum

Glad to have made you laugh, this darn BC and chemo takes its toll on us so it's good to find things to laugh at. Speaking of laughing; I went out with my manager and ex manager tonight in my blue wig (giving the blue rinse brigade a run for their money) a man came up to me and said he loved the colour of my hair, very striking and that my hair cut really suited meSmiley LOL didn't have the heart to say it was a wig, especially when he turned to his wife/partner and asked her to think of having hers dyed the same colour oopsSmiley Happy, wonder if he'd have liked my pink wig as muchSmiley Very Happy. Funny really I had a few positive comments about it, never had any with my real hairSmiley LOL

 

No, my chemo regime is the same throughout 6 x EC, just hope the rest are like my first 2. Asked when the rest of my hair would fall out as I expected to be totally bald by now and was told I might not lose any more, I was a bit stunned as I was told I would lose it all. Suppose I will have to wait and see.

 

I hope your blood sorts itself out, I can feel your frustration just wanting to crack on, I would feel exactly the same, it always seems to be waiting for something on this journey doesn't it. Hold on in there you will get there in the end. I'll keep my fingers and legs firmly crossed for you.

 

Hello and welcome Becky, glad to hear you are having minimal side effects and I hope it continues that way for you. What regime are you on?, I had my 2nd on the 17th and it'll be my 3rd on Friday. Wigs are great aren't they - you can be whoever you want to be, I got my nhs wig which is identical to my hair before it fell out and a pink wig and a blue wig off ebay for fun - still deciding if I want another, possibly purple or a brown one with different coloured highlights just for a change, also got scarves, hats and beanies so I've got a choiceSmiley Happy.

 

Ooh Sewbuddy your toes sound painful and the thought of toenails lifting offSmiley Surprised, I really hope they don't cause you problems. You'll have to let us know how you get on with making your headgear, I've thought of it myself but haven't got further than that. Good luck with staying at work for as long as you can, I'm sure it's doing your mental wellbeing good, we all need things to do that to help us through this tough journey.

 

Well ladies I hope the rest of the week goes well for everyone and for those who are having another treatment this week.

 

Joemic x 

Member

Re: May 2019 Start

Hi everyone, 

Welcome to the group becky.j.bevan. It sounds like you have had a good start, glad you like the wig, some of us are struggling to find comfortable and flattering headgear! I have ordered some fabric and a pattern to have a go at making my own.

RuthGr, glad to hear you're coming out of the fog! I'm still a little immersed but did go to work today. Once the hair stops  coming out the soreness goes away, I still have a fine fuzz but it is no longer tender and sore. I have not bought a fringe but it sounds like a great idea, where did you get it?

Joemic, 🤣🤣 your top tip made me laugh, that's not something we will learn from the text books! It's really nice that your manager is taking the time to keep you involved. I hope your meeting with the onco went well and that you can go ahead with the milestone chemo on Friday.

Mangomum, such a shame that you had to postpone. I hope you are feeling really well and can enjoy a week with your family. 

The tingling is back in my toes with a vengeance today and I am sure my big toe nails are starting to lift off 😮so sandals from now on for me, glad it isn't winter!

 

Wishing you all a good night's sleep and minimal side effects

Xxx