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April 2018 Chemo Starters

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Re: April 2018 Chemo Starters

Thanks. Michelle & Fiona.  It sounds as though we are going through much the same experience.  I’m relying on paracetamol & ibuprofen for the bone aches but the effect doesn’t last long.  I’m really tempted to use the codeine I was given after surgery & didn’t need but I’m wary of such a heavy-duty painkiller.

 

it must be devastating that you cannot lift a bag of clay Fiona.  Things that make life enjoyable are stripped away but only for a while, I hope.  I’m surprised that your nurse didn’t immediately realise how distressing extra pain would be.  I’ve heard pain downgraded to “discomfort” but from inside my skin it’s pain.

 

I’m grateful for the encouragement about next docetaxel, Michelle.  I’m hoping next time won’t be so bad, if only because I’ll know what to expect.  Thanks for your good wishes, Gygi.  Keep telling myself it’ll be better tomorrow.

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Re: April 2018 Chemo Starters

How are you all doing? I hope the last few days have been a bit more gentle on you all and there have been no new effects to deal with.

It's interesting to hear that aching joints and body in general seems to be unavoidable. I'm definitely aching more in my knees and arms this time than I was last. This time the pain seems deeper and sharper. I've been given naproxen but it's slow to work to finding hot bath's are more effective.

I'm also definitely feeling more fatigued and have booked to see a physio tomorrow as I need some help in getting strength exercises as I couldn't lift my bag of clay at the studio yesterday. It was quite a shock and really upset me to feel the effect on my muscles. I felt completely demoralised for the rest of the day. A bit better today but it's really knocked me.

Thanks for the diet info Michelle. I've taken a look and will try out some of the recipes on there.
As for my Russian, it's very poor and covers only the absolute basics. My MiL definitely has better English but it does make for slightly limited conversion though we manage by using Google translate which is actually pretty good! My poor husband is exhausted by the end of visits as he spends a lot of time in translation. I've not been to St petersburg but it's where my husband grew up so I'd love to go. Moscow is huge but I loved it.. In particular I loved Gorki's house and the area around it and also the museum of modern art, tho my husband's aunt is convinced they're all reproductions and the oligarchs sold all the originals!! Who knows!

Thanks Dorabel, I felt quite proud of myself insisting on the anesthetic. My nurse had actually only returned to work in March after having the previous 9 months off for breast cancer treatment so when she saw me become tearful and say I couldn't cope with more pain she got it I think. You're right , there seems to be a disconnect between our pain and the understanding of that at times. We just need to make sure we're heard.

Xx

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Re: April 2018 Chemo Starters

Dorabel so sorry to hear you have struggled with Docetaxol, especially after I got you excited about not having sickness. If it’s any help my first was the one I struggled with most, the 2nd was easier and I will wait and see what this cycle brings. Did you contact your unit to see if there is anything they can offer to help? If not might be worth mentioning when you have your next pre chemo appointment. I really hope it gets better for you.

Gigi how have you been feeling today? Did you make it to the doctors? If so were they able to help at all? I hope things are getting better for you too.

Fiona, I hope you have rested your feet and toes and they aren’t too painful now.

I’m heading for my achey days but that’s ok. It usually starts Sunday, Monday is the worst and then starts to get better. It does help knowing what’s coming up now. Having said that that’s usually when something else is thrown up so I won’t count my chickens.

Wishing everyone a week that gets better and better.
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Re: April 2018 Chemo Starters

Thanks for thinking about me, Gygi.  Docetaxel is evil stuff.  I’m just beginning to feel a little better after days in bed.  The first two days were ok and then it was as though someone was jabbing knives into my joints all the time.  Too weak to get up or eat.  I did wonder if it were supposed to be this bad & dread further 2 courses.  The fatigue never lifts.

 

You’ve had a horrible experience with this stuff too, Gygi.  I hope that you gain in strength; the weakness is appalling.  With luck, the alternative chemo you will be getting will be less harsh.  I do hope so.  It’s miserable having your treatment extended like this.  Thinking of you.

 

I’m so glad about your ultrasound results, Michelle.  What a relief!  This cruel illness never lets us off the hook but this is very good news.

 

Your reaction to docetaxel, Sally, may be completely different & I don’t want to put you off.  Sorry if I’ve been totally negative about it.

 

Poor Fiona, your toes must have been agonisingly painful.  As though there isn’t enough to deal with!  I gave a little cheer when I read that you had insisted on a proper anaesthetic.  The medics may be dealing with the pain of others ever day but they do not feel it themselves (they probably couldn’t do their job if they did).

 

Crummy week.  Got to get better.

 

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Re: April 2018 Chemo Starters

Sorry Fiona forgot to say your toe incident sounds very painful! Hope they heal fast. Also re your diet look up the dash diet, it’s a low salt diet promoted for those with hypertension. Hope you have a good time with your mother in law, does she speak English or you Russian? I’m hoping tongonto Russia next June, st Petersburg and Moscow. We decided to put Borneo on hold and are now thinking of Vietnam and Cambodia, but not until November 19. It’s my husbands 50th next year but now it seems to have become all about me, oops! 😂 x
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Re: April 2018 Chemo Starters

Hi you are always so concerned about worrying others and I do get it but I also think that by you giving your experience can actually help others but also we can all support you. I realise my chemo so far has been fairly smooth in comparison but I feel I can understand the lows you must feel and the frustration of not getting on with it all. I have been thinking about you a lot today and I really hope you can pick yourself back up. Hopefully this is a corner turned and the new regime will run smooth for you, I can tell you how down you must be as your posts are missing all their lols! I love your lols they always bring a smile to my face! 😉 xxx

Sally you are on a similar path to me then, but I am not on hormones as oestrogen negative but am on herceptin until May. How have you found chemo so far? I have had 3 docetaxol, it hasn’t been without its own side effects but it is doable. Keep posting and let us know how you are getting on. X

Linda, my bowel experience has been the same as the others. Constipation on FEC but the opposite on Docetaxol. I have stocked up on immodium but I was told the to call my emergency number the first time so they can check it’s not an infection. I have diarrhoea the whole 3 weeks but only really take immodium if I’m going somewhere and it always works. I also have pertuzamab (Perjeta) and herceptin which also cause the same SE so that may make it worse for me. Good luck on Wednesday x

Fiona it’s interesting you had surgery first, mine was aggressive too but was advised chemo best to start. To be honest I was so she’ll shocked I would have done anything they asked. I still don’t tend to ask many questions just go along with the experts!
Also I was under the impression that if having rads which I was told from the beginning I would be that you have to wait for a recon. I haven’t actually asked anyone in the know yet and can’t remember where I read that but might of been on this site. Who knows!
I often have to remind myself why I am going through this misery, it’s easy to forget we are doing it to save our lives. It’s easy to get down trodden with it all. Good luck with your appointment on Monday, let us know how you get on. X

Yes my daughter looked beautiful for her prom and had a great time. We collected her and got home for 2.30 luckily I’m on steroids so wasn’t tired until then anyway, every cloud!! 😂
Enjoy the weekend everyone xx
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Re: April 2018 Chemo Starters

Hi Fiona yes I'll be joining you on Pactlitaxel, weekly I was told. And with that no filagrastim that is what did me in! Thank you. Still feeling very weak. Cleaner just came and that is a godsend. She is so lovely. Got docs in 20 mins so resting in readiness for my 6 min walk there. Linda I was told it could go either way with Docetaxel so not to take anything till knew which way. With Fec it was constipation for me and with Docetaxel it was the other way. Hope yours goes well. Hope you are ok Dorabel
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Re: April 2018 Chemo Starters

I am starting docetaxel on Wed & wondered if anyone has any tips? Do I take the laxatives on Tues like I did with FEC? I am on the May thread so ahead of most peeps I think. I have the dark nail varnish ready. I was told constipation would last through chemo but maybe they just meant whilst having FEC. Thanks in advance.

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Re: April 2018 Chemo Starters

Gigi, it sounds like you've had an incredibly tough time but good you're home again and I hope you are managing to rest and have your partner look after you. Its constantly a surprise just how much this treatment takes from us - both physically and mentally. It's quite relentless.
Maybe you will be put on Paclitaxel? . My oncologist has put me on this drug as its seemingly kinder than Doxetaxel, but the outcome and success has been proven to be the same. It also has the same success rate when given weekly in smaller doses than then heavy, 3 weekly we had on EC. I suppose tho it will depend on whether its compatible with Filgastem, which I'm not having and hadn't heard of. What ever they decided I hope that it is easier on you and will be thinking of you, you deserve a break!

Michelle, how was your daughters prom? I hope she had a wonderful time. It must have been nice to see her all dressed up and excited for her night.

You had asked about surgery, I had my mastectomy and diep reconstruction before chemo as it was spreading so fast and in ducts, lobular and lymphs that they decided to get it out ASAP. We had thought I'd avoid chemo but my oncodx score was too high. The toughest part for me was that I hadn't recovered from the surgery when I started chemo 6 weeks after the op and found that hard. Hopefully when you have your surgery you'll be able to recover fully without your body being bombarded by chemo which will hopefully make recovery smoother.

I've now had my 3 Taxol so one quarter of the way through, 9 more weeks to go. Its been much easier than the EC for me. I've also got an appointment on Monday with the consultant who determines whether I'll have radiotherapy. I'm praying not as it will be another 4 weeks on top of the 9 and the fatigue is supposit really hard, esp after chemo, but I'll do what they think best. Anything to put greater distance between cancer and me for the longest time possible! Has anyone else been scheduled for radio?

And this last week has been a nightmare as I managed to dislocate my to little right toes when I stumbled into the coffee table. Thankfully they weren't broken but were pointing at right angles to my foot. They're popped back now but it was agony. It took 5 attempts I'm so pleased I insisted on it being anesthetised as they were suggesting gas and air! And then to top it all I had an extreme allergic reaction to a mosquito bite on my eye which meant I couldn't open it for a few days. On the up side, my IV steroids and antihistamine managed to bring it down yesterday and I've woken today and see again!
I've been told my bloods are showing too much sodium so I'm starting a low sodium diet . I think I've been adding more salt to find taste which has definitely diminished. and my mother in law, who arrives next week from Moscow is also on such a diet so hoping she'll help.

Sorry for the long rambling post, once I start it all tumbles out!

Best of luck for today Michelle. As my nurse said to me yesterday, let's hope it's a really boring one.. We like boring and uneventful!

Happy Friday all.. X fiona
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Re: April 2018 Chemo Starters

Hi Michelle I don't mind questions just aware that others have just started Docetaxel and everyone's reaction is different. I had mine Monday week. First 2 days felt ok started the injections for immune system Wed night (filgastrim) and felt totally totally unwell Thursday. I did ring oncology on the Friday and Sunday and then had to again Monday and went up Tuesday and they admitted me Tuesday. I didn't have the usual side effects. My issue was extremely high BP and pulse. It's still high hence having to go docs to get it checked yesterday and today but the further I get from the injections the better I feel (although I felt like calling an ambulance last night briefly too) Apparently a lot of people react badly and end up in hospital. I have to change to another chemo drug now which puts me back (no longer even halfway) but I will know more next week I guess when I go for bloods. Walking to the docs (6 mins away) totally did me in yesterday so will have to take it very slow for a bit. Trying not to dwell. Luckily still too unwell to use up my energy that way lol It is what it is. Take care Gigi x
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Re: April 2018 Chemo Starters

Oh Gygi what a nightmare. You have had more than your fair share of challenges during chemo haven’t you? How long were you in hospital for? What was the injection they gave you and when will you know what they will change you to? Sorry bombarding you with questions don’t feel you have to answer. I really hope you get your strength back and feel better soon. Let us know how you are feeling and getting on, I’ll be thinking of you, I really feel for you xx
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Re: April 2018 Chemo Starters

Hi I am also on chemo 5 next week. My first Docetaxol, not sure what to expect, especially with double steroids.  I am having 8 cycles of chemo then surgery, then radiotherapy, then I get the hormone tablets.  I am still trying to get my head around all this.  It does help to read how others are surviving the whole darn thing. Thanks  

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Re: April 2018 Chemo Starters

Hi everyone how are you all? Happy belated birthday Michelle and congratulations on your good news. Hope you are feeling ok today Dorabel and congratulations on finishing chemo Christine.
Unfortunately Docetaxel or the Filgastim injections or both did not agree with me. Will be changing chemo waiting to hear. Still very weak, part of the condition of letting me out of hospital was to go doc so just been and it was a 5 minute walk too far. Going back tomorrow and going to take next week off too. Not out of the woods yet but moving in the right direction. Hope you all have a good Friday. Hope your daughter loves her prom Michelle x
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Re: April 2018 Chemo Starters

Thanks Christine, not much sleep last night but I’m back on the steroids now, 8 a day so I don’t think I’ll have much sleep for the next few days. I can’t believe I am on chemo 5 tomorrow. I’ll be joining you in 22 days Christine! How are you enjoying life after chemo? Or is it too soon to say?

Tonight is my youngest daughter’s prom. She has done her A Levels and finished school while all this has been going on. I'm so proud of her. She looks beautiful in her prom dress, but I would say that wouldn’t I!

I hope everyone is going ok, how are the weeklies Fiona? Have you got to your studio much? I imagine pottery is very therapeutic. I’ve gone back to crocheting. I learnt last year, made lots of things then stopped but it’s good to be back into it. I like doing it in the evening whilst watching tv as it stops my mind drifting onto other things.

Gigi how are the SE’s for Docetaxol ? I have been given a higher dose of Lansoprazole for the swallowing and heartburn so fingers crossed. I hope you are going well.

Dorabel how are you finding Docetaxol? Number 4 you are over the hump! From what you have said the book sounds interesting, Ive ordered a secondhand copy so only a fiver with postage. I think counselling is a really good idea. I think macmillon run a course too. I will be looking into it once I get further down the road.

I have surgery after chemo. Apart from your DIEP Christine is anyone else having surgery after chemo? Or is everyone over that hurdle? I would be interested to hear your experiences.

Happy Friday everyone, hope all is well with you. I am glad to be back on the positive side! X
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Re: April 2018 Chemo Starters

Amazing news... So delighted for you... And as I'm just catching up on posts, happy belated birthday 🎂!
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Re: April 2018 Chemo Starters

Fantastic news Michelle. I bet you need to get some sleep now as i can't imagine you got a lot last night. Perhaps a bit of a celebration first though.

 

xxx

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Re: April 2018 Chemo Starters

Soooooo relieved! Had ultrasound and liver thing looks like a type of birthmark, she gave me the medical name but I’ve forgotten! The ovary seems to have 2 cysts and they are just cysts!!! So relieved. Thanks for your support x
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Re: April 2018 Chemo Starters

Thanks Christine. I will be keeping my fingers very tightly crossed and will let you all know how I get on. X
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Re: April 2018 Chemo Starters

Oh Michelle, I'm so sorry you have to go through this wait. Will keep everything crossed and be thinking of you Xx
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Re: April 2018 Chemo Starters

So sorry to hear that Michelle and i hope you get the result quickly. They thought i might have a problem with an ovary too but my ultrasound came out as perfectly normal. Hopefully yours will come out the same.

 

 At the start of this i didn't want to tell my family until i knew all the facts so i get where you are coming from. we don't wont to worry those we love unless it is necessary.

 

I will keep everything crossed and will be thinking of you. I hope you have a way to let out the anger and frustration even if it is just some where to scream or a pillow to punch.  

 

All the best and i am sending you a big hug

xxx

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Re: April 2018 Chemo Starters

Thanks Dorabel x
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Re: April 2018 Chemo Starters

So sorry for this, Michelle.  Cancer is total cr@p and only those going through it know just how cr@p.  Thank goodness you are going for the ultrasound scan tomorrow.  Hope the results are quick and good.

 

It’s hard to keep stuff like this from your parent

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Re: April 2018 Chemo Starters

Well after having a brilliant few days I’ve coming crashing back down to the world of cancer today. I went for my pre chemo appt and got the results of my CT SCAN. The Onc said they have found what look like cysts, one in my liver and one in my ovary. To confirm they are cysts they are going to give me an ultrasound and have fitted me in tomorrow morning. I’m so scared that I have more cancer. At least I don’t have long to wait.
I have to go home now and pretend I haven’t just been given that news, my mum and Dad are visiting and I not good at lying.
This is so Cr@p x
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Re: April 2018 Chemo Starters

Happy birthday last Thursday, Michelle.  Your “almost normal” really pins it.  I felt the same the first time I wore my wig in an ordinary setting, like acting a part.  Glad the cold cap works for you, Christine.  I’m longing for even a little fuzz to return.

 

Thanks for the kind words about my treatment.  Yesterday was my first docetaxel dose and it hasn’t been too bad so far.  We sat on the ward waiting for hours for the stuff to arrive.  One poor lady had had a long journey to be there for 8.30 and at past midday they were telling her to come back in 2 or 3 hours.  No having nausea is wonderful, worth all the pills rattling around inside me.  Only day 2, though, so I won’t get too excited.  I’ve discovered that dark nail varnish shows every chip!

 

I hope the book I mentioned isn’t a disappointment.  I like the validation it gives to the way I feel.  It has motivated me to ask for counselling help from the charity that operates from the hospital site.  I can’t always keep a lid on how I feel and I need help.  There, admitted it.

 

Hope your docetaxel went well, Gigi.

 

 

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Re: April 2018 Chemo Starters

I did cold cap and have kept the majority of my hair. If you didn't know me you wouldn't know about the hair loss. I had assumed i would lose a lot of it so ordered a scarf and silk hat that have never been worn. I will probably drop them off at the chemo unit and see if someone can make use of them as they are unused. I do admire all those who seem to have dealt with the hair loss so well. I don't thnk it is vanity but just the want to remain ourselves and hide the internal turmoil without it showing on the outside. I have the horrid marks on my arms that i cover when i i am in company but that is a bit easier than hair loss. I have had the odd take away or meal out but i have been careful on what i have eaten and where. I am not sure at what point i can take things a bit more easily. A few week yet i think.

 

I think some drugs are done weekly as a general rule like the paclataxel and others and done three weekly like FEC and docetaxel but I think even then there are exceptions to this pattern. How the cancer presents and what we have been through before I think also plays a part. There do seem to be so many different protocols  and we all seem to have some tweak from each other. I was thinking about last time i went through this at the age of 34 and with a 4 year old i thought i might night see grow up. I worked and made life as normal as i could for everyone elsse. This time as a 54 year old with a 23 year old daughter i feel more exhausted but less worried about the future.

 

Sorry i seem to be waffling on today. Enjoy your holdiay Dorabel. Cornwal was where i had most of my childhood holidays and i am sure you will have a lovely break.

 

Hope all is ok with you Gygi. 

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Re: April 2018 Chemo Starters

Sorry Fiona forgot to ask how did the second cycle go? It’s odd to think you will have done your third round before I do mine on Friday! It must feel like it goes around quickly. Do you know why some have weekly and some 3 weekly? I know Christine said every week is different for side effects are you finding the same or is it too early to say? I hope it is going ok for you xx
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Re: April 2018 Chemo Starters

Great news Dorabel that all is progressing well, that is the important thing after all. I often feel so ungrateful whilst having this treatment, moaning all of the time but really it is a good thing. I think I’ll order that book too, a wall of glass between me and the world really resonates with me as does keeping a lid on how I really feel, “ yeah great thanks” is my stock reply and it’s usually followed by “well you’re looking well’ end of conversation. They have done their bit asking and have heard what they want to hear. I do wonder how I would have been if this had happened to a friend of mine and not me, probably exactly the same!! Hope today goes well Dorabel, is this your first docetaxol? I’m sure your varnishing skills will improve! X

Christine, I can’t remember did you cold cap? I do feel a bit like I obsess about hair on this chat, I must come across as so vain, I’m not, I promise! If you did cold cap I would be really interested to know how long after your last chemo your hair stops falling out.

I have had a very busy few days. It was my birthday on Thursday so went out for lunch with my family. The restaurant itself was slightly disappointing but the occasion was lovely. I also went for lunch on Saturday to a beautiful restaurant right on the beach and that was amazing. I haven’t been out much since starting chemo and it does feel weird. It’s like you are almost living a normal life but the almost is actually massive. I feel so self conscious of how I look, I wore a scarf for the first time on Saturday. I also worry about what I’m eating, food poisoning and hygiene. This is so not (normal) me. Although now I am getting closer to the finish line I can feel rebellious me coming out and I am not as careful as I was in the first few cycles. Maybe I was too careful then, hopefully I won’t come to harm with my new more blase attitude. I will be careful again for my next round on Friday.

Gigi how is your first week of docetaxol and herceptin? I hope you have coped ok. For me I found the first cycle had worse SE than the second.

At least we all have this beautiful sunny weather and our gardens to ease us through this rubbish time! Keep well everyone xx
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Re: April 2018 Chemo Starters

Hi Christine

 

I’m really grateful for your post - thought I was going bonkers with the way hospital wears me down, even when the news is positive.  Re. the holiday, I’m off to Cornwall for just over a week.  It will be ok if I can get easily to the nearest A&E, I take my thermometer and my picc line has been removed.  I can see why sun in Cyprus could be a problem but it’s horrible having to cancel or put plans on hold.  I hope you do get a lovely holiday with your daughter in the spring.  Tennis and home-baked rock cakes sounds great for now.

 

 

 

A slim book, ”Emotional Support Through Breast Cancer”, arrived from amazon today.  It’s not much bigger than the booklets you get from the hospital and I read it straight through in one go.  It describes things that were true for me, like the wall of glass that was suddenly between me and the world after I was diagnosed.  I recognisd feeling obliged to “put a lid” on my true feelings when I am asked how I am.  Only my opinion but I think I am going to go on finding this book useful.

 

Hope it goes well for all of us next week.  I now have a gruesome dark-blue (diy) mani/pedi to keep the sun out when I get docetaxel tomorrow.  Guess I need to get more practice with nail varnish.

 

 

 

 

 

 

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Re: April 2018 Chemo Starters

Hi Dorabel

Glad you had good news from the oncologist and yes hospitals are a nightmare. You think you have all the information you need and they know what they are doing and you when you get there nothing ever goes to plan. If we are told we are going for a blood test they don't say what they taking for unless you ask and when they can't read the consultants writing and ask what it is I have never have a clue. 

 

Where are you off to on your holiday? I was warned to still keep my skin covered and be wary of the sun so my plan on going back to Cyprus are put on holed for now. Will probably wait until the spring and go somewhere with my daughter.

 

Feeling ok today so i have just baked some rock cakes that i have made with dried apricots. Smell gorgeous but haven't tried one yet.  A day watching the tennis and eating rock cakes for me i think.

 

And thanks Michelle. I will still be around keeping you all updated on the recovery from chemo and also how the Herceptin and Zoladex injections go. Herceptin every three weeks and Zoladex every 4 is going to an interesting one so my fridays will still not be completely mine. 

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Re: April 2018 Chemo Starters

 You got to the end of it, Christine, and that’s great.  Chemo is a taxing experience, so I’m not surprised you are feeling unexpected emotions.  You may well have different emotions in the coming days.  I hope everything goes well with the DIEP.  I’m glad the CCS cream is helping.

 

I saw the oncologist today for pre-chemo checks.  He was running the clinic on his own, so there were long delays.  Hospital infantilises me  I wander round looking for where I am supposed to be, unable to answer questions like “is your blood being tested for vitamin D?” (how should I know?).  I came home exhausted after hours of sitting about waiting and worrying.  All this obscured the fact that the news about my progress is good.  Whatever emotions I felt today, this is what really matters.

 

Best of all, the holiday I’ve booked between last chemo and first radiotherapy got the ok.

 

Second best: earlier in the week I got shown how to put on my wig properly so it doesn’t look like a busby perched on the top of my head.  They don’t make fine flat wigs, so mine is quite bushy but at least it looks like hair.

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Re: April 2018 Chemo Starters

Congratulations Christine! I think the mixed emotions are quite normal. What we are undertaking here is no mean feat and there is generally so little understanding of it from others who have not been through it. I hope all goes well with the DIEP and I hope you are going to keep in contact here and update us on how you are getting on. I think at some point in time I will have a reconstruction, although I have to have surgery first! So would love to hear how it all goes for you.
I hope the side effects are minimal this round and that you get taste, dry skin and hair etc back to normal soon.
Keep in touch
Michelle xx
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Re: April 2018 Chemo Starters

Well that was my last chemo and i am no feeling as elated as i was expecting. Not sure why. I have felt very emotional and even started crying just before the infusion  finished. Perhaps it will just take a few days to sink in. i did speak to a lady a few weeks ago leading up to her last chemo and she was talking about it as feeling like being desperate for a wee then finally being allowed to go. I assume she was talking about the relief she felt. I am glad it is finished and grateful to have got to the end despite the side effects. I am pleased by most of the support i have had from friends and those on here and i will say thank you now for all your support. It has been such a help talking to those with the same problems.

 

I am looking forward to getting some parts of my life back to normal even though i now have the thought of the DIEP looming over me too. Determined to start cooking again in the hope my taste will return quickly and to start on gentle walks now my feet are much improved, thanks to the ccs cream. 

 

I hope the day and weekend goes well for everyone.

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Re: April 2018 Chemo Starters

Sounds as though you've had a rough ride over the last few days so it's great to hear you've had a good day Christine. Your experience is really helpful to know - thanks. Sounds like my plan for routine is misplaced and I will just take it as it comes... Though to be fair, I'm not sure what else we can do!!
Your comment about putting things back in the right place resonates Michelle... There are a few things that have a new home on the basis of me not wanting to battle with the cleaner any longer!

Good evening all x
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Re: April 2018 Chemo Starters

Hi Everyone

The problem i have with weekly paclataxel is that no two weeks are the same. i do seem ok on the day of treatment and the following day and then all the side effects kick in to various degrees. This week it knocked me for 6 on monday and for the first time since school days i had to give in and spend the day in bed. It started with diarrhoea for half an hour to the extent i couldn't leave the loo but the worse bit was i was completely drained and felt queasy. I hadn't taken any anti sickness drugs before yesterday as they weren't needed but every time i sat up i felt dreadful. On the plus side i have had it confirmirmed that that was number 10 of 11 weekly infusions so only this friday to go. Then on three weekly herceptin injections which hopefully wont be a problem. Also will be on Zoladex and a tablet hormone treatment Letrozole but i think that will wait until after DIEP.

 Feeling so much better today. A good day after a bad one does make you feel so much better.

 

Great your counts were back to normal Gygi and you got the chemo.  Observation times do go down dramatically after the first one. I felt like i was pasing the room like a caged Tiger by the time they finally let me home after that first one. My fourth infusion of herceptin etc was a half hour for each and a 10 minute flush inbetween.

 

All the best to everyone and hope you all have a good week.  

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Re: April 2018 Chemo Starters

Hi Fiona, glad things are going well. I was wondering how the side effects work with weekly doses. It’s great that you feel 100% for a few days, it makes all the difference. My swallowing g is fine now, back to normal. It seems to start up about day 3 and go about day 10, but I have a new plan of action for next time. As well as taking the fastab with the steroids I am going to avoid all acidic food and drink before it even starts. I think having a plan gives me hope that i can make an improvecnext for time,
My cleaner has been this morning so I will spend the next half hour moving things back to where they belong!
Hope everyone is ok x
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Re: April 2018 Chemo Starters

Michelle, how's your swallowing and heartburn going? Even though I have tablets of renitidine and omaprazole as have a hernia and usually have really bad reflux without chemo, I was given intravenous renitidine with the Taxol that seems to have helped as was suffering quite badly in EC. Do you have something that's helping at all? I hope it's eased as It's quite miserable x
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Re: April 2018 Chemo Starters

That's great news Gigi that you were able to get on with the chemo... Hope you're feeling OK today and made it to watch the footie.

My first Paclitaxel went well and so 1 down and 11 to go.... Though I'm slightly struggling to get my head around the fact I'm doing it all again in 2 days! It was fine on the day and on Friday though sat and sun I didnt feel great but yesterday was almost back to normal and today Im 100%.... Let's see how long that continues for, but Im determined to try get into a routine so I'm going to the pottery studio today and tomorrow and will borrow our neighbours dog for a walk this afternoon and tomorrow.

Someone had mentioned about having a cleaner ; it's definitely made a difference to us though we've been very lucky to have found ours as the previous 3 we had were terrible and caused more stress! After the DIEP there was no way I could have done it and though my husband is very good, he has so much else to do looking after me and still working that it really has helped very much.

Wishing you all a good day x fiona
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Re: April 2018 Chemo Starters

It will be shorter for you next time, I went from 8hrs first time to 5 hours 2nd. I had Perjeta aswell.
All good here thanks x
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Re: April 2018 Chemo Starters

Thanks Michelle they say I can leave at 6pm. Long day! My daughter is on her way. Hope you are feeling fine x
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Re: April 2018 Chemo Starters

Have been thinking about you today, so pleased it has worked out and you can crack on. Hope you make the match!! xx
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Re: April 2018 Chemo Starters

So hi everyone. Blood count has gone from 0.5 to 9.8! So thunderbirds are go. Had herceptin now have to wait 2 hours then having D. should get he in time for the footy. Just!
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Re: April 2018 Chemo Starters

Oh no sorry to hear that. I've been watching the world cup all weekend although feeling quite weak so not able to do much. Had 8 steroids so don't know if will sleep tonight. Wildshell hope you are getting over your chemo now. Will see if I get mine tomorrow.
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Re: April 2018 Chemo Starters

Everything outdoors cancelled, miserable weather here today! Makes me very grateful for the nice weather we have had so far as it’s much easier and nicer way to fill time! X
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Re: April 2018 Chemo Starters

Thanks Michelle how did the trees come down? Hope you all had a good weekend xxx
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Re: April 2018 Chemo Starters

Good luck for tomorrow morning Gigi x
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Re: April 2018 Chemo Starters

Good to hear you are doing ok Wildshell. I still have surgery to go as well as radiotherapy but everyday is a step closer and we are ticking off the days x
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Re: April 2018 Chemo Starters

hi Michelle I’m doing ok. I had chemo Thursday half way through yipeeee been told have to have 25 radiotherapy sessions after.Im suffering with smells this time .Every month is a step closer to this being over.christne I would get a cleaner mine is my son bless him I have two fantastic kids who look after me so well 

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Re: April 2018 Chemo Starters

That must be annoying Christinehavinf to chase around to find out what is going on with your treatment. Don’t these people think that we would like to know what is going on? It is our body and our life after all. I hope you are feeling ok today and get it sorted easy enough on Monday x
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Re: April 2018 Chemo Starters

Hi

Sorry to hear about the blood counts Gygi. I think we are all looking for an end goal so any delay is such a mental thing. Any thing that doesn't go to plan puts us all in a spin.

 

I was told by the oncologist that my 12th paclataxel would be dropped and she discounted dropping the dosage of the chemo. I have just thought about todays chemo and realise the dosage was dropped. I wasn't in the right mind to process and question it at the time, having been filled with pre meds and tolerating the cold hat. Now i am wondering if she changed her mind and i am doing the 12th dose but just a reduced dose on the last three. Can't do anything until monday when i will be chasing around to see if i can find what my records have on them. Feeling totaly out of it tonight when usualy straight after chemo i seem well due to the steroids etc of the pre meds but crash sunday evening. All a bit odd.

 

 I have also realised i need a cleaner for after the DIEP. I was brought up to do it all myself but have been warned that if i do too much i will end up having to have more surgery. My husband never notices mess and is always puting things off so i think a cleaner is needed.    

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Re: April 2018 Chemo Starters

Sorry to hear your blood count is still low Gigi, I’ll keep my fingers crossed for you. 🤞I suppose you want to get on with the docetaxol now, having had to hang around. I’ve never been a fan of rollercoasters but this must be the worst one I’ve ever been on! Your cleaner sounds great, I got one in when I started chemo too but have to say they are pretty rubbish and have never turned up with flowers or chocolates!
Put your feet up and enjoy your weekend x