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May 2019 Start

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Re: May 2019 Start

Hi Joemic, 

 

I'm reassured Gas mark 1 analogy 😂, i hope i can keep to a slow bake!

 

Fingets crossed for your next few sessions.

 

Mangomum xx

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Re: May 2019 Start

Hello lovely May ladies

Mangomum and Ruth, it's nice of you to say I inspire you but to be honest you both inspire me. There's no wonder you're both feeling the fatigue not only going through some very difficult treatment and nasty side effects but also keeping active with you're children- phew fatigue, you'll beat it soon, bodies just need time to recover; it just never seems to do it quick enough for us does it🤔.

Mangomum I hope the water and bit of food after rads helps you too, I've been ok too for the last weeks rads - the water especially helps, only down side is the amount of times I need the loo after, as long as I'm not travelling more than the 1.5 hrs I'm fine, otherwise it's an oops moment, definitely no coughing allowed😂. My skin has only started to go a slight pink after 10 rads so will have to see what the next 5 bring. At the moment the heat in my boob is probably a gas mark 1 so not bad at all. Keep drinking the water and slapping on the cream and hopefully you will only go slightly pink. You can do this😘.

 

Sorry to hear you've continued to struggle with your treatment SP, you'll get through you have a strong spirit which will help you.

 

Dezee - keep going you're so very nearly there now - you can and will do it, that 🔔is in sight now.

 

All other ladies I haven't mentioned but think about often, I hope you are all well and progressing well.

 

Joemic x

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Re: May 2019 Start

Hi Ruth, 

 

I'm sorry to read you feel the same. Its pretty poo really but i did read that the red blood cells can take 3 to 4 weeks to recover. I've been anemic throughout treatment but never low enough to warrent a transfusion 🙄 I'm hoping this week coming they may start to return to normal so i can get more active!! 

 

Joemic I'm always in awe of your energy and stoic attitude and still love reading your upbeat posts. I. will be following your regime of having something healthy to eat following radiotherapy tomorrow otherwise i will be falling asleep at the wheel! Its only a 30min drive so fingers crossed. 

 

Take care everyone and big hugs to all. 

 

Mangomum xx

 

 

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Re: May 2019 Start

 

I feel exactly the same as you Mangomum. I am 44 next month. I am struggling with not feeling back to normal by now, but when I look at it logically it is ridiculous and am beginning to realise it's going to take months too. 🙄

 

I have visited the Maggies centre at Christies in Manchester once, and it was an amazing place. I need to go there for my radiotherapy so will visit more offen, after my surgery.

 

SP, I am so pleased you have finished, you really have had challenges with this and are an inspiration with your resilient approach to everything.

 

Joemic, as always you are like a guiding star ️ Showing this is do-able, when it doesn't feel like it. I am assuming from your last post that this is your last week of rads???

 

I hope everyone is progressing as well as possible and seeing the finishing line getting ever closer 🤗. Sending lots of love ❤️ 

 

xxxxxx

 

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Re: May 2019 Start

Thank you SP and Mini Mad, 

I'm probably far to inpatient to feel normal and 3 to 6 months sounds more realistic! Hopefully when i go to Maggies I'll be reassured everything i feel is normal. I hate still feeling fatigued after walking, shopping, housework etc and the general aches and pains makes me paranoid it's the cancer! I'm only 44 but feel and look 10 years older with my short fuzzy hair and weight gain 😭

Do you know if swimming is ok on Rads. I really want to start building up my muscles and know swimming is good for resistance. 

 

Mangomum xx

 

 

 

 

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Re: May 2019 Start

Hi all,

 

I am sorry to hear that you have been feeling so down, Mangomum. It is really important to feel that you are supported so I’m sure you’ll find a welcome and caring network at Maggies. My hospital has a Maggies centre and it is wonderful place. 

 

My final chemo went ok but it was followed with my first dose of Zolondronic acid. Within 18 hours I had a very extreme reaction to this. Symptoms included flu like aching, nausea and diarrhoea which caused a massive drop in my blood pressure so I felt faint if I moved! Horrible. I think my body went into shock and just couldn’t cope with the chemo drug plus the Z acid in one go? It lasted 24 hours and then the symptoms started to fade, leaving me weak and very delicate. It wasn’t the weekend I’d expected after my last chemo and this was upsetting. There always seems to be a sting in the tail with chemo?! 

 

It it was lovely to have this week without any needles being put in me!! I went out with some close friends last night for a special birthday meal, even though I still can’t eat much. Whilst it was great to see them and do something normal, I also felt like a spectator. They were full of their news of their normal lives whilst I felt I was watching it all from my cancer bubble! My life has been completely focused on treatment so I kept quiet, as who wants to hear about that on an evening out?? Cancer is a conversation stopper. Crazy, that I still feel like I’m watching all this happen to me? I’m sure that a psychologist would have a field day with me at the moment??!! 

 

Of course, the evening exhausted me but that’s ok! It’s a small step towards normality? Tonight I’m singing in a concert with my choir! The first concert for me since I was diagnosed! It will be an emotional evening when we sing “When you walk though a storm” but I’m determined to do it!! 

 

SP

xx

 

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Re: May 2019 Start

Good afternoon Ruth,

 

hope you dont mind me jumping on here from The June Chemo 2019 posts.

 

i am now 5 weeks post chemo and am now only beginning to feel the return of some energy.

i still walk upstairs slowly but am managing to walk my dog a little further and not plodding like an old lady !!  Mind you i am 69 !!!

so be patient with yourself and gradually over time you also will see an improvement. 

Dr told me that recovery is 3-6 months...so by xmas lets hope we'll be enjoying ourselves .

good luck     .mini mad xx 💖💖

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Re: May 2019 Start

Hi lovely ladies, 

I'm sorry for not posting for ages. My last round of chemo took much longer to recover from plus i felt really down and thought i had depression but felt much better this third week post chemo. I might stil see the gp as i still feel like im watching myself and it didn't really happen. When i did start to process it i became down and very morbid

 

Starting Radiotherapy on Monday for 15 sessions at a larger hospital that has a Maggies so im hopefully going to get some support there. My local hospital is pretty useless tbh in terms of support as there are no Mcmillan nurses etc and i think i have received one phone call from my breast care nurse ( who was a grumpy thing) so I'm weirdly looking foward to it 😂.

I was prescribed R1 and R2 from my Gp so ill let you know how it is. I read its really good and formulated for Radiotherapy. 

 

Mangomum 

 

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Re: May 2019 Start

Hello Ladies

 

Dezee - What a rough time you've been having, hopefully now you've had the blood transfusion it'll be a tad easier for you, you're nearly there. Our veins seem to cause us so much trouble don't they but at least it's sorted now. Good luck with this weeks dose I'm in no doubt your going to smash it.

 

SP - I hope you managed to have your final dose without incident. Now you can concentrate of recovering and being kind to yourself.

 

Rose - Glad you had a nice day beside the sea - a bit of sea air does you the world of good don't you think, especially when you have to stop off for ice creamsSmiley Happy. Not long now then you can get some well needed recovery time, keep going you'll get there.

 

Ruth - Excellent news that you too have now finished and on the recovery road, I know you're eager but I think it takes a little longer than 2 weeks to get your energy back, it will start creeping back very soon as long as you're not burning the candle at both ends - even though it's so temptingSmiley Wink

 

As for me 5 rads down only 10 left to go, no skin change yet but they did say that would be from 10 days onwards so by Wednesday I might start glowing a bitSmiley Very Happy but will see. I found the first 2 days very tiring but it is a 1.5 hr train and bus journey there and back, 3 hrs is a long time for a 8-10 min appt but it is what it is. After nearly missing my station on the way home the first two days, I decided to take a wholemeal salad sandwich with me and a handful of almonds to eat after my appointments all washed down with water (very healthySmiley Happy) any way I don't know if it's that or not but didn't experience any fatigue for the next 3 sessions, so I'm going to continue with the same strategy this coming week and hope it wasn't a fluke.

 

I wish you all good luck with whatever stage is next for you

 

Joemic x 

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Re: May 2019 Start

Hello all

 

I have finally got my iPad sorted and can log back in 😀. I have only managed to look at the last few posts so haven't caught up on everything. Sorry.

 

I had my last weekly paclitaxol on the 6th of September, I found the issues with veins etc really hard towards the end, and my 'bounce back' seemed non existent. Having had two weeks off now I am feeling much better but frustrated that I am still tired.

 

SP, I really hope everything went as planned on Friday and you have finished. I was surprised I wasn't more euphoric or emotional. I think weary summed it up, the first point I had a reaction was not having a blood test the following Thursday. My surgery is booked for the 7th.

 

Joemic, I hope your radiotherapy is going well and is not too gruelling, every day.

 

Dezee, you have had a tough time, but so close now. I hope you are still on tract.

 

Rose, you must be delighted to have one left. It is a good feeling to know that getting better after the last one is it!!!

 

lots of love to you all on the thread, sending hugs 🤗 especially to those who are needing a boost.

xxxxxxx

 

 

 

 

 

 

 

 

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Re: May 2019 Start

Afternoon ladies

I hope everyone is enjoying the lovely weather. We've just got in from a bit of a walk along the coast it was lovely but a bit blowy-had to give up after a while for ice creams!

Dezee- Sorry to hear you've had a few bad days, weekly chemo must be so hard it doesn't give you any time at all to recover it's taking me longer everytime to feel "normal" again and I have 3 weeks in between to recover. At least the blood has helped to give you a bit more energy and will hopefully make it easier to get to the finish line! My last chemo is booked for the 8th October so I think we should be done about the same time all going to plan!

SP- I hope your last treatment went ahead as planned on friday and that you got a nurse with the magic touch for your cannula! I had no problems for the first 4 chemo's but the last few have taken a couple of attempts each time. I do sympathise about constipation too as I suffered with it initially but now have diarrhoea on the Doxetaxel so I've gone from sennacot to loperamide in a few weeks! 

Joemic - I hope the first week of radiotherapy has been uneventful. I must admit I dont know much about side effects but it must be very tiring if you have to attend every day?

Bannanabrain - how did your first week back at work go? I hope you enjoyed it but bet you are ready for the weekend.

Mangomum, Ruth, Sewbuddy and Ilovehunny and anyone I've missed! hope you are all well and enjoying life after chemo, I'm looking forward to joining you all in a few weeks and getting on with the next stage of the fight! 

Take care

Love Rose 

 

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Re: May 2019 Start

Hi ladies,

Well the last couple of days have been eventful as my red blood count was only 83 on Tuesday, I think 120 is normal for a woman. I was due to have my paclitaxol which went ahead as I felt OK (in fact, I had felt better Sunday and Monday than the previous days). Anyway, I had to go back in yesterday to have a blood transfusion, which took the best part of the day, because my picc line was blocked again so they had to put a cannula in, which proved difficult because of small veins (and the reason I had a picc line in the first place). Afterwards, I had to go back to the chemo suite to get my line unblocked for the second time in 2 weeks. The good news is that I was able to walk the dog uphill without getting breathless for the first time in 3 weeks. Thank you for all your positive messages about my shrunken tumour; as far as I can tell it has continued to shrink since last week's carboplatin dose.

Rose -  your story about the the eyebrow stencils made me smile; I can imagine my daughters being the same. I find pencilling in eyebrows a bit of challenge when my left one is practically non existent, but the right one is not as bad. One always ends up thicker than the other. My eyelashes are the same: I only have one or 2 lashes on my left eye but a fair few on my right. I calculated that you must be finishing a couple of weeks before me on the 2nd October? I know you had a tough time of it a few weeks ago. I hope the treatment has been kinder to you recently?

SP- I will be thinking of you tomorrow, well done for withstanding such a gruelling experience; you have been so brave given the numerous setbacks you have had to endure. Perhaps you can celebrate the end of the chemo, once you have recovered some of your former energy.

I hope everyone else from May is enjoying recovery time or coping well with the next stage of treatment. I am assuming no news is good news.

Dezee xx

 

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Re: May 2019 Start

Hi ladies, 

 

Apologies for not posting recently. This weekly chemo seems to have a pace of its own! As fast as I recover from one dose, I’m revving up for the next!!

 

My final chemo is this Friday, all being well. Hurray!! However, every week I get anxious as my neutrophil count has been up and down like a yo yo. Some counts have been very low, so there could be a delay if it drops again? Who knows?!  I honestly expected to be “de mob” happy this week but in truth, I am now just weary of it all. 

 

My veins are shot. Last week I had another cannula trauma, which is both painful and upsetting. Three goes to get the cannula in is not good. With hindsight, I think I should have had a port fitted before the weekly doses started. No one’s veins can heal and recover in a week. There simply is not enough time. I am now dreading the last cannula. I can only hope that I get a nurse with the magic touch!! 

 

My digestive system has slowed with each chemo...constipation has become a real problem, in spite of drinking lots of water, eating loads of veg and walking every day. I’ve resorted to medication as I’m eating a lot less because I feel full for ages. I’m sure this isn’t going to improve until the chemo is done. Not long now!! 

 

Dezee, the reduction in your tumour size is fantastic news!! One of my chemo nurses, calls the chemo “a little bag of magic”. I hope that the rest of your treatment proves to be just this. Then the trauma of chemo will have been worthwhile? 

 

So, my fingers and toes are crossed that my last chemo happens on Friday! Then the real recovery can begin!! Stay well ladies; you are stronger than you think!! When this is done, we are officially survivors!! 

 

SP

x

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Re: May 2019 Start

Evening ladies

Just a quick one to say brilliant news about the reduction in size of your tumour Dezee! You are definitely getting there and the blips with the back pain/cramps and fatigue are to be expected the end of this chemo in sight now!

I've had session 7 of 8 today can't believe in 3 weeks I'll be having the last one!

I know what you mean about wasted buys I've just tried eyebrow stencils- definitely one to give a miss! But at least they were cheap and gave my daughter a laugh!

Hope everyone else is keeping well and making good progress with treatments. Take care

Love Rose x

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Re: May 2019 Start

Hi ladies,

I haven't posted in over a week, but thought I would update anyone who's interested.

Rose2020- I really enjoyed the wedding, although having bought the false eyelashes I  couldn't apply them properly and thought I would rather feel comfortable on the day- not the only wasted money during chemo! The day was fab and I cannot believe I lasted from 1.30pm until 11.30pm! However, came down with a bit of a crash on Sunday. I had been having muscle/bone cramps in my thighs the previous Wed to Fri and had a sore lower back Sunday afternoon (not had that for 16 years, since a prolapsed disc). Then got to sleep OK but was woken with muscular spasms in my back at 2am so was up 3 hours in agony, eventually got to sleep at 5am, and strangely woke to no pain. However, overtired for my hospital appointment. Was supposed to see oncologist to discuss latest scan on 3rd Sept, but saw the senior acute nurse instead. She confirmed my tumour had shrunk from 3.8cm to 2.3cm over the first 2 rounds of carboplatin/pacitaxol (a good response of almost 40% reduction) but wouldn't hedge which way surgery might go. I found the whole thing too emotional and had a meltdown that evening. I think a combination of tiredness and knowing the next day was my 6th big round of chemo but I had 6 more consecutive weeks to go! Anyway, I got through the next day and am feeling much more positive as only 5 sessions to go- it is such a long time to be having chemo, 21 weeks in all. So I am thinking of you Rose, as I been so much more fatigued after the 6th big round. Strangely, my white blood count is above normal, as I am on 3 injections a week! They have also given extra calcium and vitamin D tablets, I am assuming because of the bone ache I was getting (my mum has osteoporosis) and I think the chemo can leach calcium out of the bones.

Joemic- Thank you for all the good wishes you are sending, it really makes a difference. I hope you are feeling fit and healthy for you first radiotherapy session today, and that it is a little easier than the chemo.

Bananabrain- good luck getting back to work this week, it will be good to get some normality back into life, but make sure it is at your pace.. I haven't even thought that far ahead, as surgery and radiotherapy await in the coming 4 or so months.

SP-  I think you are almost finished with your chemo. How have the last couple of weeks gone?

 

It's great that the chemo round for all of us is almost over, and that we have a bit of an Indian summer to help us cope with it. Can you imagine dealing with this in the depths of winter? I finished the Couch to 5k programme last week and have registered to do a Park Run, but won't be contemplating jogging it until I have finished chemo, as very slow! In the meantime, I hope to consolidate my stamina on the good days of the week.

 

Dezee xx

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Re: May 2019 Start

Morning ladies

Just got in from dropping my daughter off at school its definitely turning autumnal out there! I will have to start putting the heating on the timer as I hate getting up at the best of times.

Joemic - hope your daughter enjoyed her birthday celebrations and good luck for the first radiotherapy session today 🍀how many sessions are you having?

Bannanabrain- hope the first day back at work goes well, once the first day is over you will feel like you've never been away!

Dezee - hope the weekly chemo is still going ok. Did you enjoy the wedding? How did you get on with the false eyelashes?

I hope everyone else is still doing ok post chemo and are coping with the next challenges?

I'm off to the hospital for bloods this morning prior to my 7th lot of chemo tomorrow I must admit its taking me longer to recover after each one but at least the end one is in sight!

Take care everyone and keep warm!

Love Rose 

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Re: May 2019 Start

Good luck for your first day back at work Bananabrain, like you say a long journey but you made it🙆‍♀️, like you I have been using the lush soap, can't say if it's working or not seeing as though I don't know what normal hair growth should be😏. My eyebrows are growing back, increasingly weird very thick, well they will be if they keep on growing like they are😂. Also getting the furry fuzz on my face - the fastest growing hair is my tash😱, the hair on my chemo arm is growing back but still none on my good arm🤔. Definitely some strange stuff going on😂.

 

Dezee and Rose - Keep going ladies you'll soon be getting to the end of your chemo👍🏻you are 💪ladies and will get there, I'll be cheering you over the finish line when you're ringing that 🛎.

 

I hope everyone who has just completed or is about to complete your chemo is as well as possible.

 

Take care

 

Joemic x

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Re: May 2019 Start

Hi all, thought I'd drop in and say hello.  It's been nice to see how everyone is doing.  Can't quite believe this is the May starters group - we've come a long way since then!

 

I had my last chemo nearly 3 weeks ago and now I spend half my time checking my head for any signs of new hair 🤣  I have some bristly bits but I didn't ever lose all of it so I'm not sure if it's new or not.  Although I've been fine wearing my wig during treatment I'm now so impatient for my hair to grow.  Had a terrible experience with a lovely stimulating shampoo bar from Lush - forgot that I don't have any brows or lashes to protect my eyes and got the spicy shampoo straight in my eye - it was a bit like rubbing it with raw chilli and I swear my eye is still a bit twitchy a few days later!  Learn from my mistake, ladies 🤣

 

Like a couple of you have mentioned, I've noticed that walking on the flat is ok but walking uphill or lots of steps is difficult - my leg and arm muscles feel very weak.  I hope it doesn't last too long.

 

I'm starting back at work next week which is scary but I'm also looking forward to it - will be good to get into a routine that doesn't involve hospitals.

 

Keep going everyone, we're all getting there 😊

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Re: May 2019 Start

Hi May ladies

Glad to hear people are managing their treatments fairly well - i'll soon be over with, fingers firmly crossed nobody has any further cycles delayed.

 

I've never tried false eyelashes either Dezee, I only tried stick on eyebrows once, disastrously I may add, I don't know how I did it but the darned thing ended up stuck to my glasses, never tried them sinceSmiley Frustrated. My eyebrows are starting to grow back now but the tail end of them are as wide as the end near my nose, it's coming half way down my eye, a bit more and they'll be touching my eye lid. I haven't tried to pluck them yet as they are still very short but I'll have to soon otherwise I'll start looking like a werewolfSmiley LOL. My hair is starting to grow back and I now have a covering that feels like bristles and it's white, wonder how that's going to pan out.

 

Been for my radio planning today and it starts on the 16th Sept, day after my daughters 16th birthday, so at least I'm free to celebrate her day, we might even go away for the weekend, if she can drag herself away from her friends for more than a few hoursSmiley LOL What else have I been up to, oh yes I've started my Letrozole, so far so good and the Ibondronate as opposed to the Zolendronic acid infusion I'd been having with my chemo; I started having a few issues with that but I think I've managed to sort it now, time will tell.

 

I finally got an answer (off the Radiologist!) as to why I had only been given the grade of cancer as opposed to grade and stage apparently things are continually progressing in the BC department and there are now several sub sections within the staging process i.e T0, T1, T1a, T1b etc it gets a bit confusing when Oncotype scores (in some) are added as well so they base their treatments around tests results rather than by stage. I suppose this makes sense in a way as I worked out I would be stage 1A, which generally doesn't require chemo but because I was grade 3 and my Oncotype score was 40 it was recommended in my case. She says they are recommending treatment based on the tumours characteristics and not by stage. That's good but I'm still happy I know my stage nowSmiley Happy.

 

Keep going ladies, you are so near the end of your chemo (and although I finished on 9th Aug I still get rather breathless walking up a hill or small incline, the fatigue is improving all the time though).

 

Have a good weekend everyone and enjoy the wedding Dezee.

 

Joemic x 

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Re: May 2019 Start

Hi Rose,

Many thanks for the tip on eye drops, and I have bought some from Boots as I cannot imagine having to put up with this for the next few months until the eyelashes start to grow again. Thankfully the picc line was unblocked on Tuesday, so that panic is over! By the way, I have bought some Eylure C-lash false lashes, specially designed for chemo patients, for the wedding I am going to tomorrow (Saturday). I have never worn falsies, so I will let you know how I get on. Very interesting about the ice cubes, as I have had tongue ulcers with carboplatin/paclitaxol, so I will give that a go too!

Many thanks again!

Dezee xx

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Re: May 2019 Start

Hi Dezee

I use Hypromellose 0.3% eye drops which really helped when my eyelashes first started to fall out! I initially used them 3 or 4 times a day but now only use them morning and before bed. My eyes were sore watery and gritty feeling but are great now and I've been able to wear my eye makeup again. 

Sorry no ideas about Picc lines though! 

Another unrelated tip I've done this time is to suck ice during my chemo my tastebuds are still odd but my mouth is much less sore and I can eat this time around!

Good Luck

Rose

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Re: May 2019 Start

Hi ladies,

Just a quick post to all of you still enduring chemo. It sounds like most of you are nearing the end, which has got to be uplifting although it must be tough on you Mangomum with the fatigue and aches and pains. I can sympathise on the sore and runny eyes front- mine have been getting progressively worse over the past few days as the eyelashes have pretty much disappeared. I have tried not wearing eyeliner/ mascara today, but they are still weepy and sore. Has anybody out there got any tips? I wonder whether it might be my foundation which is seeping into my eyes, leaving them itchy and puffy. Also, has anyone else had problems with their picc line? The district nurse couldn't flush mine nor draw up blood on Friday evening, so I will have to get the hospital to try and sort it out tomorrow. Worrying as it might delay my chemo if it cannot be sorted tomorrow and I have 7 more weekly treatments. I suppose I have been fairly lucky so far avoiding problems, but still have a way to go.

Good luck Mangomum with your 6th and last chemo on Wednesday, and you too, Rose with the side effects of the last round. It must be nice to have a month or so to recover before you have to prepare for surgery. Finally, SP  I hope that you will enjoy your day of singing. I am sure the regular exercise of walking 3 miles a day will help with stamina.

 

Dezee xx

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Re: May 2019 Start

Hi ladies,

 

It’s good to hear that some of you have managed to get away and enjoy some normal activities!! Well done you!! 

 

I’ve just had my 6th weekly chemo today. Three more left!!  It’s been going well and the side effects have been much milder each week. I’m still walking 3 miles a day!!! So, I haven’t gained any weight!! Must be the walking and healthy eating!!  Well done me?! 

 

I’m planning to attend a singing day tomorrow with my choir.  I’m not sure I’ll last the whole day but I’m going to try....We’re learning “A million dreams” from The Greatest Showman” which seems quite appropriate for me at the moment!! I could end up in tears as the words are so emotional for me!!!! 

 

The heat wave last weekend did affect me! I don’t think my body could cope with chemo drugs, regulating my body temperature and digesting food. So, digesting food must have been last on the list and I struggled. However, as soon as the weather cooled, I felt ok again!! 

 

My neutrophil count is a weekly worry. It is low but so far it hasn’t delayed my treatment. I’m desperately hoping that I can keep up the weekly schedule to get this trauma done!! 

 

The consultant has now sorted what will happen on my last chemo. I will have my first Zolodronic acid infusion then and start on Letrozole post chemo. I’m also going to have a bone density scan to give a baseline for this to be monitored in the future.

 

So, it’s starting to feel like the end is in sight!! There is now light at the end of this chemo tunnel!!! 

Stay well. 

 

SP

xx

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Re: May 2019 Start

Hello ladies

It's nice to hear people are out and about and enjoying the last few weeks of summer even while coping with all the side effects of treatments! 

I've just had my 6th treatment and am waiting for the side effects to kick in I'm well stocked up with medications and soft foods but still getting that feeling of dread wondering how bad it's going to be this time! Still at least we are all on the homeward strait now of this part of the journey and some have even finished!  I've started doing a bit of reading now about surgery and reconstruction options just so I know what to expect I didnt realise there were so many types of reconstruction available its all very confusing! I'm sure the options will be clearer when I finish chemo and see the surgeon again in October!

Hope everyone keeps as well as they can over the next few days. Look after yourselves lovely ladies!

 Love Rose 

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Re: May 2019 Start

Hi ladies

on my way back from Dartmouth after a lovely week away and no chemo this week! After being slightly anaemia the week before I noticed that walking on the level or downhill ok but oh boy every set of stairs or uphill stretch left my breathless every few steps. Also lashes and eyebrows even scantier and like you Joemic my eyes keep watering and have been quite sore this week. I think it must be the mascara. The hospital has put the scan forward to Monday so fingers crossed all goes well then. Still have 7 consecutive weeks of chemo to go - I just hope I don’t get even more tired as I have a big family do in London tomorrow to celebrate my mum’s 80th then a wedding back in Wiltshire the following Saturday. Not sure I have a lot of stamina for these full on days! 

Dezee xx

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Re: May 2019 Start

Hi lovely ladies, 

I did post a long message a while ago but it disappeared. I then tried again a few days later abd was halfway through and ping! Vanished 🙄. So im just checking in to say I'm still around and will do a proper update once the kids are back to school next week. 

 

Round 5 has been my toughest to bounce back from but its probably more to do with being busy and pushing myself when i can to do more. We went to Swanage over the bank holiday and dats out etc. I don't feel at all ready for chemo on Wednesday (last one) aa still have lots of side effects from this one. Mostly muscle and bone pain plus a bone dry mouth despite how much i drink. The skin on the sole of my right foot is peel off and my eyes feel sore and runny. Apart from that im ok 😂

 

Joemic i bet you are so pleased the chemo is now over. I wonder how long it takes the body to recover completely. I feel about 20 years older in terms of fitness. This round i have found just walking is an effort. I have also started to have quite a few downer /weepy days when i convince myself every ache and pain is the cancer spreading but its probably just the tiredness / fatigue. 

 

Anyway got to go now as its the last few days of feeling remotely well we are going out to a local National Trust house for a wander. 

 

Love to everyone and will do a proper catch up next week. 

 

Mangomum xx

 

 

 

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Re: May 2019 Start

Hi Ladies

 

I hope everyone has enjoyed the sun and are feeling much better for it.

I went to the seaside Fri night and came back Sun, it was relaxing even though I probably walked much more than I usually doSmiley Happy. The B&B we stayed in was good, only downside was it was 4 sets of stairs up, not a problem going down but they did seem never ending when I'd been walking for a long time, funny how you don't realise how far you've walked when you potter around in and out of shops and along the beachSmiley Frustrated. The B&B was literally a 5 min walk to the beach and sea front and an 8 min walk from the high street. It was great (apart from the stairs) going out for a walk coming back to the B&B and going out again at least 4 times a day. Only down side was the darned midges that decided to attack both my feet on the last night, I'd only taken my shoes off for a minute to shake the sand off them and they attacked - I swear the little blighters were laying in wait for me, ended up with 7 bites in that minuteSmiley Mad

By the time I'd got home Sun night my legs and feet had swelled, mind you I think the swelling was due to the heat and the fact it took 5 hrs to get home using buses, trains and taxis and the time waiting in between. When I'd finally hobbled in to the house, I was shattered took my shoes off and yes you've guessed it got bit on my big toe twice and once on my wrist, spent the next hour with my feet in cold water, took some of the itch out of the bites but didn't reduce the swollen legs or feet. Spent 2 days lounging in bed before my feet and legs got back to normal. On the positive I enjoyed it and my daughter thoroughly enjoyed spending some quality time with her friend.

 

Dezee - I hope you had a good time at the seaside and it wasn't too hot for you. It's great to hear you are coping well with the new drugs and less steroids has got to be a good sign, hope the scan goes well on Tuesday. I'm a bit like you in that I prefer to prepare for the worst then its a lovely bonus when the news is better. I went to the feel good session and picked up a few great tips, unfortunately by the time I had got home the mascara had irritated my eyes (serves me right its always irritated me so don't know why on earth I put it onSmiley Frustrated) but I had a great time and met a great bunch of women, very inspirational.

 

Ruth - Control freak!!!, I don't think so, I think we've got every right to know what is happening, reasons why, treatment we are prescribed in fact everything to do with everything - you're right I'm a control freak as wellSmiley LOLSmiley LOL but there again who knows us better than ourselves. I think we all go through episodes of feeling low, sometimes it seems like there is no rhyme nor reason but with everything we are going through it does catch up with us, usually when we least expect it. Hopefully you are continuing to feel better in yourself and good luck with the rest of your treatment.

 

Sewbuddy - I hope you are feeling better in yourself and made it to your granddaughters birthday celebrations. I hope she got the GCSE results she wanted, no matter what I bet you are one proud grandmotherSmiley Happy

 

Rose, SP, Mangomum, Ilovehunny, Banabrain and anyone else I have unitentionally forgotten (chemo brain is still present and activeSmiley LOLare bearing up and managing to march on relatively side effect free, some of you will be very close to the end of your chemo journeys, good luck and focus on ringing that bell, you will get thereSmiley Happy

 

Joemic x 

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Re: May 2019 Start

Hi ladies

Ruthgr -  I have only been given a grade (3) not stage. Good luck with your treatment today. I think fatigue is the worst culprit for making us feel low. Sometimes there is no real reason to feel that way otherwise. I think you are nearly finished with the paclitaxol, so that must be great news and should help to keep you going. 

Joemic -  I meant to let you know that I have seen my oncologist 4 times now, normally after each 3 week round. Have a great break away, the weather is looking fab from this weekend.

 

I saw my oncologist this week and she confirmed that the CT scan as well as the ultrasound(which I already knew), both at the start of August, showed little reduction in the size of tumour for EC chemo. However, both me and my husband thought it significantly reduced a week after the first carboplatin/ paclitaxol, and seemed further from the surface. After her physical examination she agreed and so has booked another ultrasound for the 3rd Sept, which will be 2 rounds into these drugs. From this I hope to get a clearer idea whether surgery might still be a lumpectomy rather than a mastectomy. I would rather prepare for the worst in advance. However, as I am coping well with the new drugs I will have the full 4 rounds. The other positive was that she cut down my afternoon steroids for the first 4 days as I haven't been nauseous. Slept so much better last night and hopefully with injections starting today there may be also be a better night ahead.

Dezee xx

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Re: May 2019 Start

Good Morning May ladies

 

I have not been able to log in for a while as my IPad has given up!!! I need to take it to the Apple Store, but getting the time and energy to do this during school holidays is proving a challenge.

 

Im interested in the discussion re grading/staging information etc, I thought it was just me who hadn't taken everything in, and some of this was intentional at the beginning as I just wanted to focus on 'the plan'. I got 2 pieces of in hormone receptive and (stage or grade) 2.

 

I am just getting us up to get to hospital for my blood test as my treatment has been moved to today. I have struggled this week for no obvious reason, I feel ridiculous as the treatment is going well and working but I have been feeling low. I also wonder if this could be part of the menopause??? I struggle with not knowing the cause and being able to do something about it (does control freak spring to mind??😊). I am feeling betting this morning

 

i hope everyone is doing well and that we get lovely weather and a positive bank holiday. ❤️ ❤️ ❤️ 

 

love Ruth xxxx

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Re: May 2019 Start

Hi Ladies

A mixed response to treatment seems to be the order of the week this week but everyone seems to be remaining positive which is fantastic - well done ladies you are coping well and you will all give this BC a kick in the buttHeart

 

Rose - I'm sorry but I cant help you regarding tests throughout treatment - since my wle's the only tests I have had is the blood test you have just before your chemo. I understand how frustrated you are when you are told to expect some tests/treatments in a certain time frame only for them not to materialise, it's very testing on the anxieties, I hope you get the answers you need very soon. Glad to hear you're starting to feel a bit better in yourself and the side effects are easing a bit - I hope I haven't spoken too soon. You're doing great and I'm sure your strength of spirit and determination will get you through, I really hope the side effects start to lessen for you, you've had a rough time but on the positive, each week brings you closer to ringing that bell.

 

SP - It's good to hear your side effects are less than they were on the EC. Must admit I don't like the dark nail varnish but I use black and dark pink on alternate nails and use multi coloured glitter varnish over the black polish and a white and blue glitter polish over the dark pink - sounds terrible but its much more bearable than plain dark coloured on each nail. I wish I could take credit for thinking of it but it was my 15 yr old daughter who said it would look good and I'm surprised at how good it does look; sometimes I also add some nail art stickers. It used to provide a focus for something to chat about during chemo, it was refreshing to have something other than chemo to talk about. I hope your neutrophils sort themselves out and you can have your treatment, that bell is tantalisingly close now, I'm keeping my fingers crossed for you.

 

Sewbuddy - Oh my goodness you really are being put through the mill but are managing to meet the challenge head on, the fact that you remain positive is helping you through, along with your determination to finish your treatment. I'm rooting for you, hopefully you will be able to go home on Monday. Funny isn't it, your granddaughter is 16 three weeks before my daughter, yet mine doesn't take her GCSE's until next year. I hope your granddaughter gets the grades she wants so she can do whatever it is she wants to do next. It's a bit of a nerve wrecking time but no matter what she will meet the challenge head on - how can she not with a grandmother with so much strength, determination and positivity as yourself.

 

Dezee - I'm looking forward to the eyebrow demo, mine fell out although I have a little regrowth now but they are coming back grey so are difficult to see so the tips should really help. Strangely up to now I have kept my eyelashes and they haven't thinned. Yes I am pleased and relieved for my son and it has been interesting watching him virtual networking with his new course mates, they'll know each other inside out before they actually meetSmiley Very Happy, all this virtual stuff is still a bit alien to me, I still prefer the face to face contact that I was brought up with, I suppose that's a generational thing. I had the zolendronic acid infusions along with my chemo but my Onc told me at my first appointment that I would be moved onto the tablets once chemo had finished - it was right as I'd forgotten about it until I was given a prescription for it at my final chemo session. I was advised that if I needed invasive dental treatment I needed to stop the tablets for 6 weeks before then for a further 6 weeks following. I don't really know what you would do if you were having the infusions, either way I pray I don't need any treatment for the next 3 years.

I hope you have a great time at the seaside too - it looks as if the weather forecast is favourable for us both.

 

Keep going ladies, everyone will soon be ringing that bell

 

Joemic x 

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Re: May 2019 Start

Hi Ladies,

A little bit late with replies but I hope you are all doing well at the meoment.

Joemic - I really enjoyed my LGFB course last Wednesday. So nice to have something positive to do. The best product/advice was for eyebrows, and I wouldn't normally emphasise them when doing makeup, but they are faded and half are missing so that made a significant difference. The instructor mentioned that there are serums you can use once chemo is finished which boost regrowth of eyelashes. I hope that you enjoy your session as much, particularly the bag of goodies you get. I have even had a compliment from from my hairdresser since using the new products. Your son did very well in his exams, you must be so pleased and glad the stress of waiting is over, particularly as the new A levels are so much more challenging than the old ones. I am also off to the seaside too on 24th (Dartmouth, Devon). The sea air really does wonders for your mood. I hope the weather is kind for your trip away.

It does sound that you haven't seen much of your oncologist. I had a 45 min appointment at the start of chemo, a phone call with results of the first CT scan, another 30 min appointment after the 

SP -  so glad to hear that NAB paclitaxol is going well with no real SEs. I haven't bothered with dark nail polish or cold mitts and gloves for paclitaxol. After 3 treatments no neuropathy, palm blotches or nail discolouration, no mouth ulcers until this week, but an ulcer/ soreness on my tongue and roof of mouth.

Mangomum - just reading about your trip to Alton Towers with your children made me feel tired! I don't know about anyone else, but the odd trip out clothes shopping is exhausting. I don't whether it is the crowds, pressure of trying to find something that looks half decent when you are going through treatment, or (as happened to me) I forgot my water and felt very dehydrated. I wondr whether I will continue to drink 2 litres plus each day after chemo.

Jencat - I hope your mammogram goes well on Tuesday. It is so much harder when you have no control and have to play the waiting game. I am also on zolodronic acid and have my second infusion on Tuesday: a little bit achy but that's all.

Rose2020 - what a tough time you have had with the docetaxol. For me EC was definitely worse than carboplatin/paclitaxol. I hope your next one is kinder to you and maybe you don't have too many more to endure?

Sewbuddy- so sorry to hear you are in hospital with an infection. It must be galling when you are so close to the end of treatment. Get well soon and I hope get home quickly.

Dezee xx

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Re: May 2019 Start

Hi Sewbuddy 

So sorry to hear you are in hospital. You have been so unlucky with infections.Keeping everything crossed for you that you get out on Monday to celebrate with your granddaughter. Keep strong!

Love Rose xx🧡

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Re: May 2019 Start

Mangomum and Dezee, thank you so much for asking how I am. I finished chemo in March last year and rads last June, but I go back to the chemo unit every 6mths for an infusion of Zoldronic Acid. I'm feeling a bit anxious at the moment  as I see my consultant next Tuesday for the results of my 2nd mammogram since I was diagnosed xx

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Re: May 2019 Start

Good evening everyone, 

This is my third attempt to post 😂 Having read through the thread it seems that many of us are approaching milestones of some sort. Bringing on some new worries etc. We have all come such a long way since our journey began, we know we can handle these anxieties and soldier through to our next stage, be it a change in drugs, some half way tests or moving on to rads or surgery, once we have the plan in place we feel better.

It's great to hear about your short breaks and family news with proud moments and occasions to look forward to, I believe it is these occasions that carry us through.

My 2nd dose Dosetaxel was reduced to 80%again but still completely wiped me out from day 2 again with intense pains in my feet and legs that prescription painkillers barely controlled. Then the fatigue hits!

My family all get together once a year for a massive picnic in the park, there were 50 of us and I was taken along and sat in a chair and loved being amongst my nearest and dearest. The next day I had my LGFB session which was great, I started to think I was almost through the worst, when I spiked a temperature and I've been in hospital now since Monday. IV Tazocin 4 times a day and 2litres of fluids a day. Culture's show nothing but I'm still spiking 2-3 times a day. It's so frustrating😩😩 I fear my last chemo will be cancelled now. On the positive side I have my granddaughters 16th birthday this week and her GCSE results day too xx. I'm hoping to be going home Monday all fixed and ready to celebrate with her🤞🤞🤞🤞

 

Good luck with your milestones everyone - wishing everyone all the best

Xxxxxxxxxxx 

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Re: May 2019 Start

Hi ladies, 

 

I'm glad to hear that most of you are coping with your treatment regimes and even managing to combine this with some normal living!! Well done everyone!! 

 

I have just had my 4th dose of weekly NAB Paclitaxol today. I feel like a pin cushion!!  It is going ok in terms of side effects. So far, they are much milder than the big doses of EC. I have not needed any anti sickness meds and have only had three antacid capsules each week. My stomach is delicate for 2 days but no volcano type symptoms. I’ve managed to walk 3-4 miles on most  days. My mouth is tingly but ok. My fingers and toes are ok too but I’m massaging my nails with cuticle balm every day, as well as wearing the dark nail polish (which I hate!!) I’m also wearing the cold mitts and slippers during chemo. So far so good....

 

I have 2 Filgrastim injections each week but even with this, my neutrophil count has dropped very low.

Last week it was borderline for proceeding with Chemo. Today it was 1.2. If it drops further this week, I think my treatment will be delayed....very frustrating because in myself I actually feel ok!! 

 

So, next week, I am half way through the weekly regimen...five treatments left to ringing that bell!! 

 

Take care.

 

SP

xxx

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Re: May 2019 Start

Thank you so much Rose for your reply. That is really helpful. I will definitely make sure I get some Imodium. They have told me that I will be in for 6 hours for my Perjeta and Herceptin and that I will have to go back the next day for the Docetaxil. I have read on other posts about the sore mouth and several people have mentioned asked for Difflam mouth wash. It sounds like it works really well. I have a stash of tinned custard though incase I need it! I will definitely let you know how I get on. Hope you have a good few days before your next treatment. Thank you so much again for your reply. Xx

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Re: May 2019 Start

Hi Lucy

I had my first Docetaxel, Perjeta and Herceptin the Tuesday before last. It was a long day in the unit as they need to leave an hour between each infusion to monitor for side effects but it all went in without any problems! I felt really well until the Saturday then I started feeling achey and really tired it lasted 2 or 3 days and I felt like I had flu I just used regular paracetamol and ibuprofen and they did help. I also got diarrhoea and felt a bit sick so I used the metaclopramide I'd been given to come home with and Immodium for the diarrhoea which did stop it quite quickly I just wish I'd started taking it as soon as it started! The other things I've had this time were a sore mouth and complete loss of appetite - I've been using salt water mouth washes and my mouth is improving and my appetite is coming back although I can still only eat soft foods!

For the next one I plan to ask the nurses if they can suggest anything else to stop my mouth getting so sore and I will use the Immodium as soon as the diarrhoea starts as I waited a few days this time before ringing for advice. 

You are so right that everyone is different though and I really hope you get minimal side effects but its definitely worth being prepared for everything and stocking up in advance also ringing your unit if you're not sure. Good luck and let us know how you get on! Take care

Love Rose 🧡

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Re: May 2019 Start

Hi Rose, I am from the July starters but am having my first docetaxol together with herceptin and perjeta in 3 weeks time. Please can I ask what you have stocked up on to cope? I am not looking forward to it. Also are you feeling better now and if so how long did it take? I know everyone is different but am trying my best to prepare. Thank you so much. Xx

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Re: May 2019 Start

Hello ladies

Hope everyone is coping ok at the moment. There's always something to be trying to manage or worrying about during this chemo business isn't there?

Just a quick question about echocardiograms? Did everyone have one half way through their chemo? I had one at the beginning and was told by the oncologist I would need one half way through then at the end. I've got an appointment for the midway one but it isn't until after my 7th treatment - I rang the chemo unit yesterday but no one seemed to know if that was ok or if it would mean delaying my next treatment if it wasnt done, they said they'd ring back but hav'nt as yet I'll keep chasing it but just wondered if anyone knew what the rules were!

I'm finally staring to feel human again after my first Docetaxol last week the aches, sore mouth, disrrhoea and loss of appetite all kicked in 4 days after and caught me quite off guard as I thought I was going to have an easier time than the EC but it wasnt to be!! My medicine cabinet has never been so well stocked with all the pills potions and lotions I'm buying to try and help me cope.

Joemic well done to your eldest on such great A levels and getting to Uni! And enjoy your seaside break.

Take care all here's hoping for a relaxing stress free weekend for everyone

Love Rose 🧡

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Re: May 2019 Start

Hi Ladies

 

I hope everyone is managing their cycles with minimal side effects.

 

Dezee - I had my 2nd WLE at end of Feb and didn't start Chemo until last Friday April, (2 months), my Onc didn't appreciate it when I mentioned the NICE guidelines to her but as I said I was concerned with my life not her patient numbers, I suppose I could have put it a little more diplomatic but by that point diplomacy was the last thing on my mindSmiley Happy. Strange isn't it how some people are told what stage they are and others aren't, it would be so much easier if everything was standard regarding stage.

You're right I do tend to over think things at times but for me unless I 'voice' my frustrations and concerns I find it hard to move on. Since posting I have reconciled myself and am back to my usual positive selfSmiley Happy, luckily I don't stay down for very long and usually bounce back quite quickly but thankyou for taking the time to reply to me, it is appreciated. How did your Look Good, Feel Good course go? I hope you managed to get the tips for your hair, eyebrows and eyelashes and found it useful - I have mine booked for the 20th, we'll have to swap notesSmiley Very Happy. I've also got a couple of nights away at the seaside booked - I love the sea and the smell of it. I'm taking my daughter as she wants to meet up with her friend who lives near where we will be staying. Although we will be at the hotel at night together I will be on my own during the day and I am so looking forward to having the break and a bit of R&R and just looking after me - hubby will be staying at home looking after the 2 boys as they have other things planned.

 

Mangomum - 3 days at Alton Towers! no wonder you're shattered - that's a tiring trip even when you're not go through Chemo. I hope your 5th cycle was kinder to you than the others and the meds worked for you. No I'm not in Buckinghamshire, I'm a Yorkshire girl but it's nice to know that the different trusts go by NICE's guidelines!!Smiley Sad without being pushed (I do mean this ironically). I had my reviews with the chemo nurses, I saw my Onc on my 1st review and for all of a 4 minute review on my 5th but at least I suppose I saw her twice - I think the next time I see her will be at the 6 week review after the end of radio, so sometime Nov/Dec I suppose.

 

My eldest managed to get 1xA, 2xB's plus an A for his EPQ - all that angst but he's got the uni and course he wanted - the extra year at school did him good, so relieved and proud of him - I'll have to remind myself of that when I'm bankrupt from getting him through uniSmiley LOL.

 

Hope everyone else is managing.

 

Joemic x 

 

 

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Re: May 2019 Start

Hi lovely ladies, 

Sorry I haven't caught up with everything but getting there. With the new drug /sore throat poss tonsillitis and 3 day trip with kids to Alton Towers I've barely had a spare moment! Round 5 tomorrow and really  not looking foward to it. I did get some stronger pain killers at my review and some daily antihistamines so fingers crossed.

 

Joemic I'm so pleased it's over for you but understand how you feel about unanswered questions. I've a few myself and your trust / hospital sounds similar to mine (your not in Buckinghamshire are you?). I had to push to get my chemo started within the Nice guidelines of 60 days and I've only had appointments with the Registrar so never met my actual oncologist 🙄. I think all my angst will come out too once the chemo is over as I have definitely been bottling up my frustration - but knowing its not the front line staffs fault I've not said anything.

 

Dezee I really hope that lump gets the slaying it deserves now and you can start to feel reassured things are moving in the right direction and you stay neuropathy free and for the wedding. I've ordered some magnetic eyelashe and an eyebrow tattoo as mine have thinned now and I'm finding my eyes are more sore and weepy with less lashes 😕. Let us know how the course goes? I've booked one for the middle of September as it's at Oxford where I'll have my radiotherapy so two birds. I definitely look worse on the Docetaxel. 

 

Ruthgr I hope all continues to go to plan for you too and the side effects are manageable on the placitaxol. 

 

Docetaxel girls, jencat and lovehunny how are  you doing? Are the side effects easing? I've definitely been more tired and haven't got my energy back so well but I have been doing more too!

 

If I've missed anything I'm still reading through so will catch this week as won't be doing much for a week if it's a thing like last time! 

 

Take care

 

Mangomum xx

 

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Re: May 2019 Start

Hi Ladies,

Chemo still going well- now finished my 3rd paclitaxol, so back to the bigger 3 drug chemo treatment next week. No neuropathy, I wonder of it is the piriton infusion that is doing it. Although I was disappointed that my tumour hadn't shrunk much at the ultrasound scan, it has now got smaller since the new treatment. I can't remember who mentioned that the tumour might have hollowed out but it feels further from the surface as well as less hard. I am going to the 'ook good , feel better session at my hospital tomorrow, which should be fun. I now have a wedding on 7th Sept so hoping I will get some tips on hair, eyebrows and eyelashes. 

Ruthgr - how are your paclitaxol treatments going? I haven't any aches and pains, just the general aches from the injections.

Those of you on docetaxol, Jencat, Mangomum and Ilovehunny I am sorry that you have suffered from so much tiredness and achiness. Does pain relief help at all? Is the chemo end in sight?

Joemic- you have reached a significant milestone finishing chemo. My onc said I would need a month to recover. I hope your wait is no longer than 6 weeks. Like you, I was only given the grade (3) and not the stage, but am assuming I am stage 2 as it doesn't appear to have spread to lymph nodes. I also had to wait a long time before chemo started 23 April diagnosis to 27th May. Surely this is probably a more critical time than the wait between chemo and radiotherapy? I think you know you might be over thinking things as you recover, do you have anything you could plan which has nothing to do with treatment? It might help to refocus your mind on life after radiotherapy. You've had a really rough time during chemo and have done so well to get through it, so you need to be kind to yourself now while there is a lull in treatment, you deserve it!

Dezee xxx

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Re: May 2019 Start

Hi Ladies

I'm back as promised, got over my little temper tantrum when I lost my postSmiley LOL, it is a bit soul destroying though, spending ages typing on my phone then losing it in the space of a secondSmiley Sad, hopefully it wont happen now I'm using my chromebook, don't like the emojis thoughSmiley Frustrated.

 

Anyway, the last dose has had me totally wiped out and no energy, I think it's probably a combination of the chemo and the relief that it was my last one. I've got a heck of a bruise this time - and they used my good arm, apparently the cording to my veins in my left arm was going to make it too difficult to get the chemo in even though the phlebitis has gone. I'm just hoping this arm doesn't do the same, I guess I'll find out in the next 2 weeks.

 

I'm still feeling a bit frustrated that I still don't know what stage I had/have, I don't suppose it would make any difference to the treatment I was given but I would still like to know. I asked again at my last review and the chemo nurse doing the review was a bit evasive, when I pressed her she said oh it says you're grade 3, er yes that part I already knew but grade isn't the same as stage. I seem to think (but cant be 100% certain) that at my very first appointment they said to ignore the booklet they give where it mentions stage because they don't go by that anymore but it seems to me that the vast majority of people are given a stage so don't know why I should be any different. I suppose there are things annoying me now which I didn't have the energy to bother about beforeSmiley Frustrated.

 

I've to wait for my radio planning on 6th sept before I find out when it actually starts, the chemo nurse wasn't sure about that either, I think she was a bit uncomfortable because I said it'll be 4 weeks after my last chemo before the CT planning scan and then possibly another 2 weeks after that before radio actually starts which I think is longer than NICE guidelines, she said she'd check with the onc which is fine but I don't see anyone until the 6th. I suppose this is where the anxieties kick in again - I was beyond the guidelines for chemo starting and then I'll be beyond radio ones, it does mess with your head a bit thoughSmiley Sad.

 

I've been given Ibandronate and Letrozole to start 2-3 weeks following my last chemo so am now trying to decide which one I should take at 2 weeks and which one on the 3rd week as I don't want to start them both at the exact same time as I won't know what side effect is from which meds. I guess it was easier on chemo in that that was all I was focused on and now I seem to have lots to think about againSmiley Frustrated

 

Anyway enough of the boring stuff about meSmiley Happy

 

Ruth - I'm glad you had a brilliant time away, although you found it tiring I bet it did wonders in lifting your spirits - all good for the soul. Hot flushes, yuk- I'm not looking forward to having them againSmiley Indifferent

 

Ilovehunny - I'm pleased the cold cap has been working for you. I'm sorry to hear that you are having some nasty chemo side effects, I do hope they start to improve for you, it is difficult when that sledgehammer hits but on the positive as every week goes by you are nearer the finishing line. As for replying individually to people, I'd never be able to remember what had been said if I didn't go on my chromebook where it lets me reply to one but also lets me view the whole discussion on another tabSmiley Wink, chemo brain runs wild with us allSmiley LOL.

 

Rose - 3 new treatments, phew, I'm pleased they went to plan. That's a lot at once, you must've been a bit apprehensive but well done you for getting through it and you deserved a very lazy weekend, I hope you enjoyed it and the achey bones and muscles have calmed down now.

 

Dezee - I hope you have had a few more decent nights sleep and your treatment is going better and not as tough as it has been for you.

 

Sewbuddy - I hope your no 5 went better than your previous cycles and you're marching on to your last one. I also hope that you are finding it a bit easier now you have stopped work for a while. It's tough to start with, but you do finally realise its for the best and you can put your energies into dealing with the chemo and it's effects and very soon you'll be looking forward to going back again.

 

SP - I hope your treatment is still going well, you are marching on to that finishing line and will be there before you know it.

 

Bananabrain - I hope you finally managed to decide what to get for your chemo staff, I just got them a load of mints either they could have them or they could use them as a stash for people who forget theirs when they're having chemo to stop that metallic taste.

 

My best wishes to everyone else having treatment, I hope side effects are kept to a minimum, you've got this ladiesSmiley Happy

 

Joemic x 

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Re: May 2019 Start

Hi all

Well done Joemic on getting to your last treatment! I hope the last lot of side effects pass very quickly then its onwards and upwards! 

Nice to hear from you I love honey. I've also just started the Docetaxel. It was a long day on Tuesday as I had three new treatments but it all went to plan with no reactions. I had a few really good days with none of the churning stomach constipation and loss of appetite I had with the EC but then the tiredness achey bones and muscles have kicked in so I'm just planning a very lazy weekend to get through it! My periods had stopped about a year before my diagnosis so at least I don't have that to cope with but I still get quite a lot of hot flushes I feel I'm always sticking a thermometer in my mouth checking if it's just a flush or a real temperature!! The other new thing I've noticed is that with the Docetaxel the breast with the cancer is quite tender I'm hoping that's all those nasty cells getting zapped!

Well take care everyone keep dry this weekend!!

Love Rose x

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Re: May 2019 Start

 

That is such fabulous news....you are amazing, to endure 6 cycles of that with your spirit is phenomenal!!!!

 

👏👏👏

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Re: May 2019 Start

Hi ladies

I have just spent an hour and half replying to you all individually and lost the post😡😡😡😡😡

I've finished my last cycle🙆‍♀️ glad i'm finally done with the 6 cycles of the red devil.

I hope everyone is doing as well as you can. All that concentration has wiped me out so when I've picked up again and got over my temper tantrum I will post again😊

Joemic x

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Re: May 2019 Start

Hello ILoveHunny

 

It sounds like you have had a tough time on Docetaxol, was this the 5th of 6? Good news about your hair, I’m glad this has lasted.

 

I haven’t had a period since my second cycle, and I am starting to get hot flushes now, so assuming menopause has started, but I think the treatment will mess up your cycle, having periods on top of side effects is an extra challenge you can do without 🙄.....I keep thinking when all this is over nothing at work will feel ‘challenging’ again!!!

 

I hope this is your penultimate treatment and you only have one left, and you don’t get the drop after the steroids this time.

 

🤗 xxxx

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Re: May 2019 Start

Hi all, 

I have just been catching up on your posts as I haven’t been on for a few weeks. I’ve just had my 5th cycle of chemo and I’m feeling ok.  This is my second Docetaxel and it has been very different to the three cycles of FEC that I had to begin with.  

 

I would say say that the biggest difference is pain and fatigue.  I felt great initially but soon realised that the steroids were keeping me up and as soon as those finished I felt very tired and achy.  I kept an eye on my temperature and took paracetamol and ibuprofen for the pain as it was disturbing my sleep.  About a week after I got a temperature and was admitted for one night but they couldn’t find out what was causing it. Spent one night on IV antibiotics and then sent home with a week’s worth as a precaution.  I have one injection to boost my white blood cells 24 hours after chemo and I would say that starts to kick in around 10 days later- I had quite a bit of pain in my joints and lower legs this time which was quite bad.  

 

I’m hoping that this cycle will be ok but something I’ve learned is that you never know what you’re in for.  I’ve realised that the pattern for me is that I feel ok for the first few days and then it hits me like a sledgehammer for the next 3-4 days.  It has definitely taken me longer to get over this time and I’ve been feeling a lot more tired.  

 

I’ve persevered with the cold cap and apart from a thin bit on the top it’s bearing up ok.  

 

Something that has happened this time is that I’ve had two periods close together-about 10 days apart.  I’ve told my nurse and she said this can happen.  I’m in my early forties so not quite menopausal so it’s a bit strange but I’m told that chemo can do weird things to your cycle.  Has anyone else had something similar? 

 

Also, I wanted to apologise for not responding to individuals on the forum as many of you do.  My memory is useless at the best of times and it’s even worse now since going through chemo! 

 

Anyway, I hope you’re all bearing up as well as you can be.  

 

Thinking of you,

 

I love honey

 

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Re: May 2019 Start

Hello all

 

I think today is planned for your last treatment Joemic....I really hope it goes ahead and you do not suffer with it. Good Luck 😘

 

I hope everyone is coping well, I am just catching up since a few days away, which was brilliant but tiring.

 

Dezee...my oncologist told me (prior to my scan) that sometimes the lump might not change in size but the treatment has hollowed it, he described it is an empty bees nest, but they will only be able to confirm once it has been removed. 

 

Lots of of love and hugs 🤗 to all

Ruth 

xxx

 

 

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Re: May 2019 Start

Hi ladies😊

There have been some very encouraging reports where you weekly chemo ladies are tolerating your chemo much better than expected👏🏻way to go ladies you're doing great🤗.

 

Don't worry Rose and Dezee, some of us might be coming up to our last cycle but we'll still be with you both all the way😁, nobody gets left behind and we'll all be here cheering🙆‍♀️ until the last person rings that🛎.

 

I've got my radiology CT planning session through for 6th Sept then who knows when the sessions start, I think i've been a bit niave in thinking that would have been a bit earlier so it could start end aug beginning sept, well that's what the on oncologist led me to believe. Never mind someone will enlighten me at some point🙄

 

I hope you are all doing well with your treatments and especially those who have been struggling with some nasty side effects. Keep going ladies you are 💪💪💪

 

Joemic x