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Anyone due to start chemo April 14??

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Re: Anyone due to start chemo April 14??

Haven't managed to post for a couple of days, been out enjoying last days of freedom before TAX on Friday. After all the kerfuffle with the health centre about getting my bloods done it was fine and actually very productive in that there were two other women there with breast cancer-and I guess I was pretty visible with my bald head. We exchanged phone nos. and the district nurse agreed to offer my phone number to the other women she knew of. In addition, the day before I met someone at a funeral who said she knew of 5 women recently diagnosed so again I said I was happy for her to pass on my contact details. So maybe we will be able to set up an informal support network.

JJ. i love your idea of a booklet with tips on treatment. I made a similar suggestion quite recently although I was thinking initially more of collating all the ideas that had come up on the various threads and maybe setting up a separate thread with sub threads on particular issues eg sore mouth. You seem to have thought it out more. Anyway I would love to help you with this. I have never used Facebook though, so can you tell me what to do?

Damn, battery running out on I-pad , will have to respond to other posts later.
Member

Re: Anyone due to start chemo April 14??

Hi Rachel, I haven't tried antihistamines for the aches and pains, but I did take one paracetamol and one 200mg ibruprophen at the same time which I found was enough to make it all very tolerable. I had one day when I was completely floored and just sat on the sofa watching daytime tv, but otherwise have found the Tax much more manageable than the FEC. Although, for the first tax I was given Emend and was not nauseous at all, so now they have not given me Enend for my next cycle. I hope I don't end up feeling sick again, especially as it's my son's end of year school play next Thursday and Friday. He's in his last year of his school so he has quite a big part. I'll be gutted if I can't watch him, as he fancies himself as a bit of a thespian. Had bloods done today, all good to go on Tuesday.
Hope all those having treatment today/tomorrow goes well, without any delays or too many side effects.
Member

Re: Anyone due to start chemo April 14??

jos glad to hear that you are doing so well know and being well enough to enjoy time with your lovely daughter!
Bookandwine glad you have been well enough to enjoy so many activities I wish I had something to go to, no in between chemo support here! Sorry to hear you had a fall it does hurt when we are older!
rolicapit the journey there wasn't too bad but it was very hot on the way back. I had to get DH to stop for more water my tongue was getting stuck to the roof of my mouth I was so dry.
I had to wait nearly 2 hrs for the infusion to start! Thank goodness bloods yesterday were fine. I did arrive rather hyper due to steroids but I have come back zapped next 3 day with steroids so I will be on the ceiling on Sunday night and sleep most of Monday!
I had the same reaction in the first 5 mins to the Tax but the nurse rushed at me quickly when he saw my face going red and I was clearing my throat as I felt a constriction in my throat, with the 2 needles and managed to avoid the acute pain. So only a 20 min dlelay here. Then half way through I needed the toilet and the blood usuall moves into the tube with the way in which you have to use you hand in the toilet!! Well mine went down the tube a metre!!! So of course it caused a blockage and had to be cleared, another 15 min delay! So started out at 7.20am and returned home at 5.40pm!! Maybe I will sleep a little longer tonight??? Anyway I was very happy to see the final appointment on the card July 10th!!!! So relived this first part of my journey is nearly over!
Sheba56 I am glad you have posted! We all experience different side effects and not all of them and the medications we take control most things so don't fret too much.I am having chemo first so have surgery, rads etc to go. I would agree the chemo is like a separate issue
and what makes cancer worse BUT we must remember it is our medicine to keep us alive and so we have to approach it like a woman, as opposed to a man!!!!!! Good luck and keep posting about your ups and downs there is always someone to respond to you.
Lovewine its good to enjoy a burst of energy! Good luck tomorrow tick another one off!
Thanks Jackie hope you enjoyed a good day today?
Rachel glad you are finding forum and internet info useful. I am sure by the weekend you will be feeling easier and antway the fact of seeing your brother you haven't seen in 5 years will take your mind off it and you can enjoy a special time with him!
Hope I have caught up with everybody apologies if I haven't and also if I have missed anyone having chemo tomorrow.
I am just off to have a shower my head is sweating under my scarf and I have my chef back tonight yeh! have a good evening all! xxxxxx

Member

Re: Anyone due to start chemo April 14??

Hi Guys!! Thanks for your advice re: tax. I am on day three and feeling much better than i have done with fec. Much less tired. Managing with naps,rather than long periods of bedrest. Finding myself waiting for se's like with first fec.. Did anyone use antihistamines for aches/pains?? Have read alot about them being helpful. Am hoping pains will be minimal as i have my brother visiting who i haven't seen for about 5 years and i want to make the most of this weekend.
hope everyone is doing well. Am finding myself thinking about surgery phase now, how about you???? xx
Member

Re: Anyone due to start chemo April 14??

Just wanted to wish those ladies having treatment today good luck - I'll be thinking about you x x
Member

Re: Anyone due to start chemo April 14??

Morning All

 

Well, my surge of energy yesterday was great and I'm not knocking it but at 2am I was still wide awake and willing myself to get sleepy!!  i can't even say it was the steroids as have been off those for over a week.  So, not much sleep but pleased to say still feeling ok this morning.

 

booksandwine, you have been busy and great to find good support and lovely people.  I hope your SEs are minimal this time round.

 

Lisa - last one!  Good luck!

 

Lovewine - your garden is benefitting from the steroids!  Sadly I have given up on mine this year.  If i'd had some regular help I could have done it but too big a task on my own.  I've had a very productive veg garden for the past few years but this year just settling for my old belfast sink planted with herbs.

 

Hello Sheba.  I can't comment on the sore veins as I have a PICC line.  It has felt a bit more tender there this past week which I should probably ask about.  Yes, I do understand your comments about the chemo.  Like you, I felt absolutely fine before I detected my lump.  In fact, I was the fittest I had been for a while and remember thinking I hadn't even had a cold all winter so my immune system must be in good shape.  I still have times when I just sit and think how unreal all this seems. 

 

Well I'm off to wait for the district nurse to come and do her weekly PICC line clean.  This morning I will not get frustrated by the wait.  I'm going to crack on with some pilates and housework and if she arrives in the middle then so be it.  I usually can't settle to anything and get frustrated but i've had enough of that!  All being well, in just over 4 weeks this thing will be coming out of my arm.  I shall celebrate my fully immersing myself in a very deep bath for a very long time, probably with a glass of wine next to me!

 

Good luck with today everyone, whether it's chemo, SEs or making the most of the bits in between.

 

x

Member

Re: Anyone due to start chemo April 14??

Hi sheba56

Yes my arms were very sore also after 3rd FEC to the extent I ended up phoning the helpline as I was convinced my veins had broken. I was reassured that it's perfectly normal and that the FEC is particularly harsh on veins ... I think it's the epirubicin that is worse. I've now had 2 TAX and although my arms are still a bit tender they are much better... I think it lasted about 10 days for me ... Some ladies have said that something like voltarol gel or just moisturing your arms can help ... It will get better

Lisa
Member

Re: Anyone due to start chemo April 14??

Hi Sheba! Yes I too get a sore arm after chemo and usually two or three weeks afterwards too, sometimes it hurts to even rub moisturiser into it! And yes I agree that chemo seems to be a seperate illness, as I too didn't feel ill in before it started!
And I think we are all entitled to feel self pity , it's an awful time with many worries and anxieties, I find this forum a great source of information and support from a lovely group of ladies, welcome and good luck!
Member

Re: Anyone due to start chemo April 14??

Morning everyone, Also like you rolicarpit had hardly any sleep!! Drinking tea and eating biscuits in the middle of the night! Good luck with your last chemo this afternoon- fingers crossed there will be no dramas!
Everyone else with chemo today and tomorrow a smooth ride for you I hope , Rosie good luck with yours today!
Just walked dogs , ready to Hoover up and have done some digging, gardening and watering and it's still only 9.00 a.m! Oh the joys of steroids!!
Member

Re: Anyone due to start chemo April 14??

Hi to everyone


I only come on every couple of weeks mainly cos I am still frightened of what I'm going to read as I am a bit of an ostrich and don't want to know too much about the bad things. I had my third chemo on Friday and was actually sick for the first time so not great but I took the extra sickness tabs that I have been given and was ok on the weekend. Still feeling a bit yucky but managed to run coffee morning yesterday as usual so can't be too bad. Does anyone have a really sore arm/veins where the Fec goes in. I could hardly straighten mine yesterday and it is very tender all the way up from my wrist but especially aroung the elbow joint.

My breast cancer clinic nurse phoned me on monday as I was worried that the site of the lumpectomy (12 weeks since surgery) was still lumpy and hard. The surgeon had said it takes a few months to go. The nurse told me it is still early days and that it can take up to 18months to all be reabsorbed and healed internally. This was very reassuring as I had convinced myself that they had missed the tumour and it was growing still.

Does anyone else feel that the chemo is almost like a seperate illness and almost nothing to do with having breast cancer. I think because I was unaware of my lump and didn't feel ill and that luckily they got the lump and it hadn't affected my lymph nodes that I don't feel as though I have or have had cancer most of the time. The preventative treatment feels overwhelming at times and I keep having to remind myself that I am lucky to be able to get such thourough treatment just don't feel all that lucky!!!! Sorry for the self pity maybe its the medication.

Member

Re: Anyone due to start chemo April 14??

Morning all

Well after precisely 43.5 minutes sleep ( I know because I counted them !) it appears to be morning ... Oh well, no different for the night before TAX from the last 2 cycles, in fact 43.5 minutes was quite an achievement lol.

Good luck to everyone having treatment today, hope it goes well with no surprises. For the first time ever I have felt quite panicky about this one, I think that I'm going to get every possible SE and thing that could go wrong during this last one ... Kind of like chemo having the last word, I know it's just my brain and probably being awake a lot last night ( things do seem more out of proportion at night ) but am going to need to find something to take my mind off it until I head off this afternoon, I was looking forward to this but not now !

Jos glad you have turned the corner, I find I never really realise how rough I have felt until I start to feel better if that makes sense but hopefully you will continue to improve and have a good few days now.

Jackie .. I managed to get some fluconazole prescribed for this cycle so will pick it up later, I'm going to use it as a preventive thing ... Can't hurt so thanks for the advice

Cassie .. Sorry your appt was a waste of time especially when it sounds like you could have done without the hassle of going, a holiday sounds great, I'm trying to book something too between chemo and rads, just trying to find the right thing

Lovewine, like the others are saying if the Onc thought there was a problem they would say but I know that doesn't stop you worrying but try not to worry too much. Hope it goes well today, another one down, shame we are at different times today but maybe catch up again soon

Rosie .. Hope the journey to and from your appt is swift, I'm lucky I don't have to go far but appreciate some of you a have a much longer journey which can't be easy. Good luck today

Wildpurl ... I think that going through this stuff puts things into perspective a bit ... Work, friendships, lifestyle how people react and behave etc, all useful information to keep hold of but yes maybe not best time to make decisions ... Maybe you could reduce your office time if it's giving you stress. I've found that I have been able to maintain working but mainly from home, seeing only people I need to see and not having to deal with the day to day work politics and stupidity which is the stuff I struggle to cope with partly due to my intolerance of people and their behaviour ( although I know this is a difference in my reactions to things rather than them being different) if anyone else gives me the "oh bless you, you're doing so well look" I'm gonna sock em one haha !

Nellie ... I'm quite jealous of your one dose injection shot, sounds much better than every day for 5 days, I have to wait around for district nurse cos I'm too wimpy to do it myself

Booksandwine ... Hope your ok?

Going to watch some rubbish TV to take my mind off later ... although I am proud of myself that I still have not turned on Jeremy Kyle once since this while thing began... Some catch ups of Friday Night Dinner I think.

Catch you soon

Lisa

Member

Re: Anyone due to start chemo April 14??

Hi all. Lots to catch up on I promise to read more fully later. Been busy three days Monday went to cancer coffee am really nice ladies then found maggies in charing cross and found haven in fulham as had a course there wed. Tuesday counselling and chemo and we actually had lunch out before no taste and sore mouth. Yesterday reflexology at cancer place from Monday bliss then raced to haven for acre inventing image talk. Fun group of ladies then rushed to meet oh dinner and play at local theatre which was rubbish no intermission or we would have left laughed about it sfter

Sleep still a pain crash 9 or 10 awake 12 then crash again awake 4 then doze.

So far apart from real wobbles managed to fall over graze knee like a five year old on wait for Friday se kick in like last tax hoping won't be as bad with fec out of system.

Cassie so sorry to hear about you. Not good hope you have lots of support around you.

Re haven I know only a few locations in uk but in case anyone is in retested they have haven at home DVDs and CDs. Www.thehaven.org.uk. Might be of use to some of you. Cassie I'm booked on an into day. 8 July if you feel up to a treck across town or 22 July or 5 or 19 august. NB postponed from April when I literally could not get out of bed !!!

Best to all going to try to catch more. Zzzzz
Member

Re: Anyone due to start chemo April 14??

Evening Ladies

 

Louise, Rosie and Lovewine - good luck tomorrow!  Lovewine, sorry you were disappointed by the news but I agree with the others that if your onc didn't seem overly concerned, then it's probably just one of those things.  Great news that the lump has shrunk though - hold that thought!

 

Wildpurl - good news about the bloods and good luck for Friday.

 

Nellie - sorry to hear about your stomach pains and that you had to go in to hospital.  I hope you'll be feeling much better soon.  What day are you now?  I am day 10 and feel almost back to "normal" after a grim few days. Energy just reappeared over night and the aches pretty much disappeared.   I think you're right about nothing being as bad as the chemo.  At the moment, the thought of surgery and rads is not really bothering me too much (which of course may change nearer the time!) - I just want this part out of the way.

 

Cassie - sorry your appointment was a waste of time.  How annoying.  Planning an end of chemo holiday sounds a great idea.  I don't think I'll be able to get away after chemo for various reasons but I am thinking I'm going to have a party when this is all over!

 

I had a good day today.  My energy levels kept up all day, the sun was shining and I had a lovely afternoon and evening with my daughter.  It was great to feel well enough to give her all my attention rather than send her off on another playdate (not that I think she minds that!).

 

Sleep well everyone. 

 

x

Member

Re: Anyone due to start chemo April 14??

Thankyou Wildpurl. , I think you start to feel quite positive as chemo goes on and then it throws you when you hear something you were not expecting!! Good luck for Friday too! X
Member

Re: Anyone due to start chemo April 14??

Lovewine, I agree with Rosie, my oncologist said that nowadays if there is bad news they will tell us straight away and also what can be done about it. If the oncologist isn't bothered then I don't think you need to be. It seems highly unlikely to me that spread to the lymph nodes would occur in the middle of chemo, but Tax is very toxic and the job of the lymph nodes is to get that sort of thing out of the body, lymph nodes get enlarged when you have a cold or flu so it is a normal process. If the lump is just a thickening now that is great news!
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Re: Anyone due to start chemo April 14??

Thanks Rosie, and good luck for your chemo too!! Hope we get some sleep tonight !!x
Member

Re: Anyone due to start chemo April 14??

Lovewine the fact that the oncologist said that it wasn't horrible news and it could be a reaction to Tax and also that your lump has shrunk, I would see as being positive! Good luck tomorrow and lets chalk another down! x
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Re: Anyone due to start chemo April 14??

Jj

Id love to contribute, and have a very good friend who is a year ahead of us all who has kept me going with her funny stories. Let us know how we can join/find you on facebook. I agree totally I spent 4 months at sea until i forund this forum. It does not seem fair to keep it to ourselves.

Member

Re: Anyone due to start chemo April 14??

Hi ladies, had my onc pre chemo assessment and feel of boob and chest etc! Must admit to now feeling very deflated, during my examination he said my lump had shrunk and was now just a ""thickening" and was going to plan, but I now have a new enlarged lymph node appeared in the last 2 weeks! This is after my sentinel lymph node biopsy at the beginning came back clear, I am now really worried as why this has happened on chemo, onc didn't seem over concerned and said he would send me back to see my breast surgeon to see what's going on, he did mention it could be a reaction to the Tax and I did ask if it was horrible news he was giving but he said no not at all- so now feel like I have taken a step backwards now! Anyway chemo tomorrow, good luck to you all facing the same this week, quite agree with you all saying how intolerant you are with people etc, yes I feel the same, I could poke some people in the eye at some comments particularly " you are so brave" as if we have a bloody choice!! Wildpurl and Rosie, I too get very stressed about blood results and wait anxiously for the phone to ring to summon me to hospital and yes it gets worse each time!
Nellie and cassie hope things are improving now?
Jj, what a good idea to compile a help sheet, well done for getting it started.
Member

Re: Anyone due to start chemo April 14??

Wildpurl I too get very stressed about the blood, I really couldn't stand a delay at this stage.I have just taken 2 steroids in preparation for tomorrow 2 to take in the morning. I wouldn't make a decision about the job until you are through chemo it makes us irrational. Good luck for Friday!
Cassie you brave lady going by yourself!
I agree a holiday would do you good something to discuss with the nurse and hopefully plan around it. I am glad you are feeling so much better but I wouldn't rush into the office because we do tire very quickly! xx

Member

Feeling better

Hello Ladies,

 

I attended the radiology appointment today (on my own Rosie14) I could not ask my daughter to attend because of her work commitments and she, bless her attends every chemo session with me. plus she had been running up and down to the hospital over the weekend to see me and bring in my injection for the bone marrow problem at 11pm. (Don't ask me why the hospital could not sort it out, different depts I guess.)

I was told the oncologist had referred me a little early, the registrar was younger than my daughter she is 25 but looks 15 !!! The appointment was a bit of a waste of time in my opinion it seems my McMillan Nurse will contact them, UCLH when my chemo is finished, then we will have a planning meeting (I thought that was what today was going to be, I was armed with dates for a possible holiday at the end of the chemo). My eldest daughter, grandson and her partrner have booked a holiday in Devon for a week and have kindly invited me to join them if I am well enough, I am sure it would do me a world of good, a change of outlook, I love London but the sea air would be great. 

 

Nellie, I know what you mean about the pain its been abdominal pain, chest pain and joint pain for me the chest pain and abdo pain only started with the start of TAX, I am not one to complain to the doctors but had two babies with no pain relief but this feels worse. Nails still stripy but intact the almond oil sems to be doing the trick. The hair is still thining but not too bad the comb over and hairspray still doing the job.

 

I must say I am feeling much better on day 8 of 1st TAX I am very tired, but this to be expected but most of the other symptoms seem to be improving, long may it last.....I might even be able to go into the office for a few hours tomorrow or Friday, we will see.

 

X C

Member

Re: Anyone due to start chemo April 14??

Im putting together a booklet on tips during treatments for breast cancer. There is so much good advice out there but no one place to get it. Once booklet is designed i will contact the charities and ask them to put on their sites. Im just going through chemo so have surgery rads and hormone therapy to come so would be great to have tips and hints ready.
This is such a big job and impossible to do on my own. I have create a facebook group called tip and hints for bc which is a closed group to get all the tips on and then document can be designed. I have too much time on my hands but please let me know if i am trying to create the wheel but as far as i can tell there isn't an existing document or if someone else trying to do we could join forces.

I also want to do a section on funny stories that have happened to people to give people a laugh and any positive things to cheer people up. I had a bird poo on my hairless head yesterday and it actually really hurt because i had no hair to soften the blow and even though its disgusting it made me laugh after i was having such a crappy day.

Also maybe a page of useful websites and facebook groups as its took me two months to get where i am and still finding new things everyday. Some facebook groups i have come by, by chance and they are so helpful.

If you have anything to contribute or suggestions on a section please reply or pm me, or even if you want to help. Also mention if you are happy to have your name added or if you want to be kept anon.

Please share this with as many people as you can
Member

Re: Anyone due to start chemo April 14??

Hi everyone, back from bloods and oncologist, I am good to go for no 5 on Friday so it's the dreaded steroids tomorrow! It is strange how I have become increasingly stressed as I have gone through this as to whether my bloods will be OK each cycle!

Nellie what a dreadful experience, I do hope next time will be better for you.

Louise, what you say about being intolerant of people who are wasting my life is so true! I just cannot be doing with it any more. Not that I was super patient before if I'm honest...

I have had a stressful week in the office this time, and I am wondering if a) I want to carry on working full time after the chemo and b) whether I really want to continue doing this job or want to look for something else. I guess now is not the moment to be making that sort of decision LOL

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Re: Anyone due to start chemo April 14??

Hi Louise glad your blood is ok, they don't let me know I spend the whole day hoping they won't phone to say otherwise. No news good news so I am off for number 7 chemo, number 3 Tax tomorrow.
I like your joke Louise!!!!
Hi Nellie sorry to hear what a bad time you are having with pain, fancy giving you gas and air!!!! How awful to suffer such severe stomach ache I do hope that you ladies that have had so much pain this time will have an easier next session. Take each day at a time ladies and remember its not for ever although it certainly feels like it at the time! x

Member

.

Hi all,

Cassie you sound as if you have had a real time of it.  I am glad you have been allowed home and hope the thyroid issues are resolved quickly.  I don’t envy you more tests though. I think you are incredibly brave attending your radiology appointment I honestly don’t think I could have managed that soon after treatment.  My chemo brain certainly would not have remembered a word that was said!

Now someone else has had to call an ambulance I will admit to doing the same on day 4 (feel v embarrassed I could not manage the pain!?) - I was in such agony in my stomach - perhaps the same sort of spasms as Jacki is suffering? I could barely breathe and as I did admit to - had a high temperature. They could not find a vein for any morphine so gave me gas and air - very reminiscent of child birth but hurt more! I was kept in for obs and the pains and temperature subsided a little so they sent me home with tramadol and zopiclone.  Unfortunately my oncologist called later in the day to say my bloods were unusually low for day 4 and that I should not take any meds other than paracetmol so had to suffer the back and leg pain the rest of the week! 

Jackie I am sorry to hear your pain is bad - I found I too was scared to take the pain killers just in case it masked an infection.  Now I know others have reported their temperature rises over those first days I think I will be a little more relaxed about it next time and take the pills.  Here in Wales we don’t get the GSCF but an alternative single injection of Neulaster, 24 hours after chemo.  Does the same thing with same type of side effects ie bone pain. They teach you how to give it to yourself so you don’t have to have the nurse coming round each time!  My taxotare comes in a clear drip bag the same as the saline and took an hour to infuse - don’t know why we all have different things?

Lovewine I hope the panic does not overtake you. I grew up with a medical family and even worked in a hospital for a while so have always found them a comfortable place to be - until now - my heart rate shoots up on arriving in the car park (could be anxiety about finding a parking space…..!)  It is not a nice feeling. 

Joan I think you did incredibly well to deal with the sitting down comment so calmly my temper seems to be so short at the moment I think I would have been rather rude!

I am muddling through the days still incredibly tired I don’t know how some of you are managing to work.  Settling in to a bit of a routine of a 3 hour lunchtime nap followed by 8 hours sleep in the night.  Either my body needs to rest or it’s trying to make up for 10 days of virtually no sleep at all!

Good luck for your treatments Rosie and Lovewine, after this have you both got only one more to go?  I can’t believe we are all nearly there. Nothing can be as bad as the chemo!

Cheers Nellie

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Re: Anyone due to start chemo April 14??

Hi ladies blood all ok so fecing tomorrow that will be 4 of 6. I have been given tranquiliser to take before chemotherapy as I was sick last time.
People are very funny with the comments they make. Your outlook changes when you have had a life threatening disease your tolerance level is very low when you feel people are wasting your life.

Well ladies here's a joke for you

What's the difference between God and a Consultant ?

God knows he's not a Consultant !


Member

Re: Back after a few days

Oh dear silly me jos I completely missed read. I must visit the optician when this chemo is over! Indeed Breast Cancer is not a lite cancer, no cancer is lite! But I agree people do seem to be relieved when they know it is breast cancer I have. Mine is grade 3 invasive ductile but I also have Paget's disease aswell so I have to have a full mastectomy!!!!
Have a good evening! x

Member

Re: Back after a few days

Hi Rosie

 

The phrase was "cancer-liTe" rather than "cancer-liFe", implying my cancer was not as serious as others so I have got off lightly!  Some people really need to think before opening their mouths.  I am realising that a lot of people think of breast cancer as something that is just treatable nowadays and then you get on with your life.  Oh were it that simple!

 

I can imagine why you would be firm with your daughter.  I totally understand that everyday life goes on with all its minor frustrations but cancer really has changed my outlook on a lot of things and has put things in to perspective.  Sometimes i just want to say "really, is that all that you have to worry about?".

 

Hey ho.

 

x

Member

Re: Back after a few days

Hi jos my you have turned the corner all that walking! I think maybe you should have a rest don't overdo it!
What an extremely unpleasant turn of phrase saying you have a cancer life! I think I would have taken her to task over to comment even if she has been supportive. I am afraid having cancer has made me speak my mind I find I am even being firm with my grown up daughter on Skype. She is a teacher and the last few weeks are always challenging when the children are getting tired and teachers have spent hours writing reports. To add to this she is spending 5 weeks moving around classrooms with a Year2 class due to the fact she has had to give her room up for Reception who are having their room refurbished. She gives me a blow by blow account of some of the behaviours of the children and then starts repeating it all. I am finding myself saying right I have heard all that so lets put that to bed!! Oh dear!!!! x
Member

Re: Back after a few days

Morning All

 

Day 10 and I have definitely turned a corner.  Felt much brighter on waking, walked my daughter to school and then walked to town and back to do an errand.  Feel I should probably spend some time resting now but when you suddenly feel better and have more energy you just want to be active after what seems like ages just lying on the bed.

 

Rosie - wow you were up early!  That's quite a drive to Nicosia and an early start you've got ahead of you.  I'm very lucky to live within walking distance of the hospital (not that I always walk!).  My Tax was one hour only.  Your neice sounds such a sweetie - that made me smile.  Yes, I find myself a bit sensitive with people's choice of words.  A very good and supportive friend said to me the other day "I guess you could say you have cancer-lite".  Well, I know there is always someone worse off and I know I would rather have a grade 2 breast cancer than a grade 4 lung cancer but, still, I would really rather not have cancer at all thank you!!!  And it certainly doesn't feel very "lite" right now and regardless of what type of cancer it is, it is hard to deal with right now and I have to come to terms with living with the fear of it coming back for the rest of my life.  I just kind of ignored it at the time but felt quite cross by her choice of words later.  I'm sure she'd be horrified if she thought she'd upset me.  In all other respects, she's been very supportive.

 

Lovewine - good luck with your pre-chemo onc appointment.

 

Jackie - glad you had a better night's sleep and your temperature is stable.  I think I'm not very good at taking my temperature.  I have a digital one that goes in the ear and although I try and do it exactly the same each time, I can get very different readings within seconds of each other!  Tbh I haven't given much thought to the side effects of the gcsf.  On my second cylce I got a pelvic ache for about half a day which I think was due to the injections but everything else I've attributed to the chemo, steroids or antiemetics.  I'm now thinking that perhaps the gcsf might be responsible for some things too!

 

I hope everyone else is feeling as ok as can be expected today.

 

x

Member

Re: Back after a few days

Goodmorning Jackie I am glad that your temperature has goen down and its likely to be the injections that is causing it at least you are not about to go down with something!!! Less than 3 hours? Am I getting more or is it being put through more slowly?
Do you know Jackie I did forget all about the cream good job you reminded me! Yes I have been up early and it will be much the same now until the steroids have finished and I can take the sleeping pills again! Glad you had a better night's sleep and woke up feeling better for it! x
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Re: Anyone due to start chemo April 14??

Sorry Lovewine - I cross posted! Good luck with hospital today and steroids! Don't do too much, although that my take your mind off everything. The steroids didn't make me have an energy boost - I was waiting for it to happen and it just never did! X x
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Re: Back after a few days

Good morning all,

Cassie - I'm so very sorry you were feeling unwell - as if we haven't got enough to deal with. I hope you are over the worst. As for your scans - I so sorry they have showed something else. Hopefully the appointment will come through when you are feeling better. It never ceases to amaze me that they seem to book appts regardless of where you are in the cycle. I have been given flucolozole as a preventative measure for fungal infections and a lot of ladies are given it to treat theses. I hope it clears up soon. My bottom has been irritable too - I didn't put two and two together until you mentioned it - I've been putting sudacrem on. Hope you are feeling well enough for your appointment today x x

Rolicarpet - sorry you are suffering with your mouth - it must be so diwn- heartening. I hope the flucolozole helps. I don't want to contradict your onc, but it does say in the leaflet it can be given as a preventative med. I was going to say ask for it for your next cycle - but you won't need it! How great is that?

Jos - great that you're turning a corner and SEs are subsiding - that's a great feeling. For me, it's hard to remember when I'm in the middle of things that they will improve - I must think that more. Each morning, i wake feeling that much better, but think the gcsf injections each day put me back a few steps as they are giving me aches and pains like never before. They are also brining my temp right up so much so we rang the unit last night as it reached 37.6. However, it came back down to 37.4 before bed, so that was good enough for me. Back to 36.9 this morning. The nurse at the unit said it's prob the injections raising my temp so that has out me mind at rest (well a little!!).

Wildpurl - my tax is in a red bag. I've asked my onc about the painted nails thing and she hadn't heard of it! I think my thumb nail might be feeling a little tender :(. Rosie - sure it was less than 3 hours for the tax to go through.

I think the comment re sitting not helping was incredibly out of turn to say the least - I wonder what goes through peoples' minds when they think of them? You were right to take her to task over it.

I've had a much better night's sleep last night and woke up not too achy at all (touch wood). I'm glad someone posted about muscle spasms as I'm having them in my tummy and have been watching it contract! I've only had back ache for 2 days previously with these injections but think they must be reacting with the tax as have had it pretty much constant since they began - hard to know what is the tax and wht is the gscf. I've not taken anything for the pain as was worried about me temp. Hopefully today will be a bit easier - day 7.
Rosie you have been up,early - hopefully a good sleep tonight? Good luck with the bloods and don't forget to ask them about the Emla cream

Love to all x x



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Re: Anyone due to start chemo April 14??

Goodmorning Lovewine I am back from bloods she just shoved them in a bag with the form and I was on my way. I have to take 2 steroids after my supper and 2 in the morning after breakfast. We have to be in Nicosia for 9.10am tomorrow and its a 2 hour trip! On the up side we should be home earlier! They were so busy 2 weeks ago and I had to wait over an hour to get a cannula inserted!
I will be cooking on gas the 3 days following chemo when I have to take the steroids. Then my poor body will collapse in a tired heap for a few days ! Good luck at you pre chemo appointment! x
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Re: Anyone due to start chemo April 14??

Morning Rosie and ladies! Good luck with bloods Rosie, I am at the hospital this morning for pre chemo oncologist appointment and have just taken my first steroids, I can feel the panic rising again at the thought of walking into the hospital, it seems to get worse , not better the more I go!!
Good luck everyone else with all your procedures and cassie sorry to hear you ended up in hospital, hope you are doing better now! Must have been very worrying for you.
Regarding nails, so far, so good! I have cut them very short and painted them a pale pink , they are quite tender but as yet seem fairly ok, sure that will change after next dose!
Have just taken my first steroid dose, so I will probably be cutting the grass, cleaning house top to bottom and awake all night!! X
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Re: Back after a few days

Another good very early morning from Cyprus! Didn't take sleeping pill as having blood taken this morning and don't want anything extra in it!!!! So 4.37 I got up. I could hear the bin men emptying the big bins at the bottom of the road they start work early! I opened up the patio door to let some air in, the early morning air is lush and the dog could hear the bin men and started her rumblings. I said, "No you musn't bark!" I was worried she would wake up DH who came to bed at 1.38am! He watched the match and then had work to do! Well the dog has gone back to sleep, DH is still asleep and I have just enjoyed a cup of tea.
Cassie I do hope that you are feeling a little more comfortable this morning.
Jos I too have had chest pains and thought I was having a heart attack! Especially as I have some heart problem found from my heart trace before I was going to be given Herceptin, which I now can't have until at least after surgery and only then if heart has repaired.
Lovewine I hope you have a good day. I think we are all guilty of drinking during early pregnancy before we know we are pregnant especiall with the first baby!
Wildpurl it is good to know that our whole group have the end of chemo in sight. I know it is only a relatively short timescale in our lives, but it certainly doesn't feel like it when we are going through it! What a journey we have all had. We should write a joint book, Our Chemo Journeys!
rolicarpit hope all is well with you good luck for tomorrow. I am in tomorrow, bloods willing!
Jackie hope you are feeling stronger as each day goes by!

Hope Nellie is feeling better and bookandwine you ar ok?
Oh Joan what a faff you have to get your blood done! Like most of the ladies on here have said we are desperately trying to control our lives and really can't cope with what seems like inefficiency. I find I can't stand sarcastic comments either and I flew at a work colleague at the talent show last Friday when she said, " It's all right for you Mrs Watts sitting down while the rest of us are having to put everything away!" I told her I didn't like her sarcasm and she said it was only a joke but I really didn't appreciate it! Does anyone else find they are hyper sensitive? I am feeling very sorry for myself at the moment also as DH is so busy with staffing issues for next term and is always on his mobile or the computer. It's a good job I have had a manageable week as I have cooked all the meals and washed up. Won't be able to do that next week! It's a good job my daughter Skypes me 3 times a week at the moment so I can have a good chat with someone! The boys Skype once a week too.
Well my friend is going to sort out my finger nails later today. They are breaking big time and peeling off, even with nail varnish on. I have had to cut them down, they were just getting to a good length too.
My sister in law said that my 16 year old niece has been researching make up for cancer patients and would like to help me by doing my make up for our son's wedding! How sweet is she?
Well it nearly 6.00am here and I have gone from sitting in the dark to sunrise so almost time to make a noise in the kitchen to wake up DH!
Hope you all have a good day! x

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Re: Back after a few days

Hi Cassie

 

So sorry to hear you have had such a bad time of it and that you now have more problems to deal with.

 

I have had chest pain with the Tax but as my oncologist had said "don't worry you won't be having a heart attack, it's just muscle pain" I tried to ignore it although it's such a horrible feeling it's hard to do.  I didn't have a temperature though so didn't have that extra factor.

 

How annoying that you have to go to an appointment when you are not feeling well.  Good luck with it and I hope you get a decent night's sleep in the meantime.

 

x

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Re: Back after a few days

Cassie I am so sorry you are having such a dreadful time and ended up in hospital and now you have other complications. Have you get someone that can take you to the radiology meeting? I do hope that you manage to sleep and wake up more comfortable in the morning. Do let us know how you are. xxxxxx
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Back after a few days

Hello Ladies,

 

Nice to hear that most of you are faring well and have been able to get out and about.

 

I have not posted for a few days, I ended up in hospital day 4 of my first TAX, I slept most of the day and not until the evening realised I must have a temperature, I promptly phoned the chemo hotline and was told to phone an ambulance! The hospital were worried that I may have septic shock or pulmonary embolism, because of my chest pain, thank god I had neither. Musculoskeletal pain and not sure why the temparature. I  really feel like I have gone throught the mill though, the CT scan has now incidentally found another problem.......an enlarged multinodular thyroid with a deviated trachea, I have phoned my GP as I am not well enough to go out at present and they have referred me to endocrinology, I should hear in a few weeks. I am now suffering with thrush in my mouth and down below and also red raw b crack, I know charming. I have some meds but it will take a few days for them to kick in I am told.

I have a radiology meeting tomorrow at a different hospital as the hospital I attend for chemo does not have a radiology dept, I am not sure I am really up to it but feel I definately do not want to delay anything, the sooner its all over and done with the better.

 

 

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Re: Anyone due to start chemo April 14??

Hi, blackberry wine, how delicious!! I remember my other half making wine about 26 years ago and he made some lovely blackberry wine, drank loads of it until I found out I was already 12 weeks pregnant with my eldest son- felt really guilty, but he has a first history degree, very well balanced and intelligent and is married to a beautiful Chinese girl who I love like a daughter!!
Rolicarpit well done in reaching last stage of chemo!! Hope it goes well on Thursday, and of course you haven't spoken out of turn I am a very controlling person!! Sounds like a lot of you other ladies are too, yes it is very difficult not to be in control of our own bodies anymore, or how we spend our tome without various restrictions, jos and rolicarpit I am really bored of it all now too!!
Rosie, hope you have survived the heat today, it will be hard for you after your op too.i agree with Joan and jos that Tax is worse than Fec, but as others have said it seems such a difference in side effects with us all, my Tax has a black bag !! Take care everyone.
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Re: Anyone due to start chemo April 14??

Now Blackberry wine sounds like just what we all need Wilpurl we will be round when it is ready! My Tax is in a clear bag and it says 3hours on it! Yuk yuk yuk!!!! Does anybody else have it quicker than this?
I've just been out in the car to get some milk from the local Kiosk and the steerning wheel and gear stick were burning my hands I kept crunching into 5th gear instead of 3rd!!!
Hope your new laptop arrives soon.
Enjoy Pilates!

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Re: Anyone due to start chemo April 14??

Rolicarpit I am jealous too that you are about to have your last chemo! But I know that I will soon be there too, and it is good that our group is starting to reach the end of chemo 🙂

I'm glad that some of you have found my chatter about my garden enjoyable. I am very fortunate that OH also loves gardening and has taken on more of the work this year as otherwise I would have had to give it a miss for this season. As it is we agreed not to make elderflower wine this year because it is so labour intensive. We are thinking of trying blackberry wine in October instead.

It is interesting that some of you have Tax in an opaque bag. Mine was in a clear bag just like the saline (it definitely said docetaxol on the bag though).
When I went walking on Sunday I wore my walking sandals so I painted my toenails dark purple to protect them from the light although come to think of it my hands are constantly exposed to light and I've used clear strengthener on them. Not very logical thinking on my part!
I'm at work again today and am getting a new laptop, my old one has been handed in and I don't get the new one for three hours so can't do much at the moment. I work on the second floor of 4 floors so walk up and down stairs a lot during the day, I do find that harder than I should but can still manage at the moment. I have Pilates this evening, looking forward to that.

Rosie I'm glad your appointment got sorted out. I too am not very tolerant at the moment of people wasting my time or creating more difficulties. The District nurses are lovely but I so hate having to stay in and wait and not knowing when they will come. I ant settle to anything. I've managed to get my practice nurses to do them except for the Sunday one because then I have an appointment and I know when it will be. Yes, my name is Carol and I too am a control freak LOL

Good luck everyone with bloods and treatment and I wish a good recovery to all those who have just had chemo.
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Re: Anyone due to start chemo April 14??

Jackie I am sat inside with most of the sun blinds down and the ceiling fan going! I am not going in the pool until I have finished chemo I don't want anything else to go wrong!!!
roilcarpit you lucky duck I am so jealous! I still have another one 2 weeks after this Thursday's! I am glad your blood is ok its always a worry!
Thanks for the tip about the cream I will have a look in the local chemist.

jos sorry you had such a bad night I do sympatisie with you as I find sleeping difficult. I took a sleeping tablet last night and I was out twice to the toilet and then got up at 5.30am! Glad you are feeling a little better. I love the comment your daughter said she does sound a sensible child!

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Re: Anyone due to start chemo April 14??

Morning All

 

Had a terrible night - unconfortable, too hot (but too cold with fan) and not enough sleep.  I was on the verge of calling the hospital for advice/reassurance this morning as still feeling bad and then, whilst waiting for my supermarket delivery to arrive first, realised i was actually feeling a etter!  The headache has shifted and other aches and pains seem to be subsiding.  I still had nausea but remembered i have a whole bag of anti-sickness pills so took one (it does say as necessary on my med card).  At last, light at the end of the tunnel, for this cycle anyway.

 

Jackie - glad it went well and you've been doing ok. 

 

Lovewine - thanks for the headache tip.  i am a bit headache prone in general and tbh a couple of paracetamol extra usually do the job but it's great to know about this one for future reference.

 

Wildpurl - a day's work and then gardening.  Hats off to you.  I usually grow a lot of veg in my garden but just gave up on the idea this year as I was starting to feel stressed about not getting prep done and seeds in in time.

 

Booksandwine - thanks for the NZ tips, will check them out.

 

Rosie - how frustrating!  I know that everything seems even more frustratiing at the moment.  We're going through so much we just want some basic things to run smoothly.  I get frustrated every Thursday morning waiting for the district nurse to do my PICC.  "Any time between 10 and 1" (messes up the whole day sometimes).  Or on one occasion "I can't make it until 3,30".  Does it not occur to them that I may have cancer but I still have a life and responsibilities and school pick ups to do!  Grrrr.

 

Rachel - good luck for your first Tax.  The only thing I can say with any certainty is that everyone is different.  I know others have found Tax preferable but I'd rather have FEC back.  I was only ever sick on the day of treatment itself and then functioning pretty well after that.  Tax last week brought aches and pains on day 4 which are only just improving now, day 9.  I've had paracetamol and ibuprofen.  I was also given tramadol but it made me throw up!  I've had nausea for a few days, worse than the FEC, when everyone else seems nausea-free with Tax.  I do wonder though if this is more a result of achy stomach muscles combined with a residual cough and a horrible dry throat with a horrible taste in my mouth.  Not a great combination.  I do agree with the others though that the tiredness can knock you for six.  I have never felt lethargy like it.  Can I reach over for that glass of water on my bedside table?  Errr, no, I'll do in later.  As for the nails, i've painted mine a dark colour (currently black).  My understanding of the "dark" polish advice is that Tax is light sensitive (you'll see it's in an opaque bag in the hospital) and so the dark polish helps to block out the light from getting to the nails and therefore lessens the damage.  tbh, i highly suspect it's just the luck of the draw but i'm willing to give it a go.

 

Lisa - your "bored of this now" comment just about sums up how i'm feeling.  It's my most overused phrase.  I said to my 7-year old last night "It's really boring being ill you know" and she replied "yes, i know Mummy, you say it so often it must be true"!

 

Have good days if you can.

 

x

 

 

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Re: Anyone due to start chemo April 14??

Hi Jackie

Yes I have Difflam but I can only use it for a few days as then its too harsh. I also have something called Nystan that is a solution you drop onto your tongue when the thrush appears and a cream for the corners of my mouth as they get impetigo in them .... but following this morning Im going to have a course of fluconazole too, although the oncologist said it was more for when you got thrush rather than prevention but anything is worth a try .... I know it seems a small thing to cope with but it's the thing that knocks me the most.

 

Bloods fine this morning, a little aneamic but not enought to stop treatment on Thurs ... so it's all go for the last bout... you'll all be there soon too 

 

Have a good day 

Lisa

 

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Re: Anyone due to start chemo April 14??

PS - Rosie - I use Emla cream - it's an anaesthetic cream and it's great for reducing my stress re finding a vein as I can't really feel it. I wonder if you could get some? X x
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Re: Anyone due to start chemo April 14??

Good morning ladies,

The sun is shining here but I'm viewing it from indoors! Thank you for your wise words again Rosie - it's so easy to let the little voices run away with you and blow everything out of proportion. That's one of the things I like going to treatment - talking to others and sapharing experiences. I can't imagine the heat in Cyprus - well I can, I was there one year when it hit the 40s - but I'm imagining you sitting with your kegs dangling in the pool to keep cool!

Wikdpurl - those strawberries sounded delicious and wanted some immediately I read your post - unfortunately I have a little boy who us rather partial to them and beats me to them!


Hi Rachel and welcome back. I hope your cycle goes well today. I was dreading mine too, but as ever, wasn't as bad as I was imagining. I wasn't given any pain medication, but my onc suggested paracetamol, codeine, then co-codamol. Some ladies have sore mouths/oral thrush and I was given meds to prevent this, as well as a 10 day course if anti-biotics. I'm on a reduced dose - and think that has made a big difference to the severity of aches and pains.

Hi Nellie - I find at the moment I'm much better at planning to do things rather than actually carrying them out! I think I've forgotten how to fall asleep at the moment. I've found my temp has risen on tax - but your 38.2 must have been so alarming. What did your unit say? I've got some moo goo too, but being ER+ haven't wanted to try it - but have seen it recommended many times over.

Rolicarpet - have you tried difflam? It's a mouth wash with anesthetic and others have said it provides good relief - I've got some too. It's great news that it's your last cycle this week - a great boost that one of us on the April thread is nearing the chemo finish line. I completely agree re car parking - we always end up several streets away. Good luck with bloods today x x

Joan - hope you got your bloods done smoothly. I'm sure everyone does their best, but I'm not sure some people on the end of a phone realise how stressful and frustrating being a patient really is.

Love to all x x









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Re: Anyone due to start chemo April 14??

Joan they had all my details as I had blood taken there last time that's what annoyed me more than ever. When you try to explain they pretend they don't understand but unfortunately I am far from fluent in Greek! Good luck with your bloods hope they are expecting you!
rolicarpit I hope you managed to find a car parking space that's another frustration! I definitely like to be in control and that has been the hardest thing with all these appointments and still no word from the surgeon re surgery! Hope bloods went ok.
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Re: Anyone due to start chemo April 14??

Good morning all

Hi Rachel, I'm just about to have my third TAX this Thursday, I've found TAX better than FEC, mainly because it hasn't given me any nausea and the first few days after FEC I would feel very unclear and fuzzy where I couldn't really think straight which I absolutely hated but I haven't felt like that after TAX. Like everyone else the SE a kick in a few days later, aches and pains have been manageable with over the counter medication. It seems that some ladies have experienced sore mouth symptoms more with TAX but for me this hasn't changed, it's been my worst symptom as it's there all the time in one way or another ( ulcers, thrush, rubbish taste and tingling ) but I had the same with FEC so it's been no different. I find the week after chemo when I'm having the injections the hardest but I then have a good week and a half. I didn't paint my nails at all and maybe should have done as a few days after the first TAX my fingertips were incredibly sensitive and I found it hard to do much for two or three days. After the second TAX my nails have started to go yellow and lift which I now manage with v short nails and it's not been a problem, I can see the new growth coming quite quickly and the fingertips have not been sensitive and sore this time. It sounds like those who have painted their nails have not had the same problem. It's a scary time changing from FEC to TAX ... Back into the unknown, but listen to your body and go with the flow and it will soon be over

Lovewine.... It was interesting to read your post about headaches ... I could have written that. I have suffered with headaches for years too and was also prescribed sumatriptan a number of years ago and also think they are a wonder drug, giving me days of my life back where previously I had to go to bed for a couple of days, now I can be functioning again in an hour. I don't usually use them much, maybe once every couple of months but I have found them very useful at the moment as the TAX also gives me horrible headaches for a couple of days that no paracetamol can shift but the sumatriptan works.

Jackie ... Thanks for the oral thrush medication name, it was me that asked and I'm going to ask the Onc when I see him this morning to see if they are different to what I already have. even though I'm gearing up for treatment on Thursday I still have a nasty tingling tongue, this is the first time that it hasn't got back to normal before my next treatment

Rosie ... Glad you got your appointment sorted, it is annoying when things don't go how you expect, when lovewine and I met, we decided we were both control freaks and that was why we sometimes found it difficult to deal with certain things that were out of our hands ( hope I'm not speaking out of turn there Lovewine ?) I know that those unexpected things can cause a minor meltdown for me too so completely understand your reaction

I really do feel that the fatigue builds up, I feel like I have climbed Mount Everest when I go upstairs, my legs are far tireder than they should be. I wouldn't be surprised if my blood count is a bit lower than it normally is at this point in the cycle when I see the Onc today as I don't quite feel properly physically recovered but hopefully it will be ok and I can get on with last one on Thursday ... Not that I want to ... Bored of this now !

Anyway, sorry about the length of this post and hope that everyone is doing OK ... Booksandwine, Nellie, jos and Joan too wishing you all a good day. Time to set out to track down a car parking space at the hospital !

See you later

Lisa
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Re: Anyone due to start chemo April 14??

Rosie, I had a similar experience this time re bloods. Because I have a PICC line it can't be done by the nurses in our local treatment room at the surgery, it has to be a district nurse. So you have to send the GP a letter from the hospital and be then passes it on. I did that immediately after my last treatment but heard nothing so had to chase it up. Put through to the treatment room who wanted me to have the bloods done in the normal way. Had to convince her that wasn't on. Then through to district nurses office, where went through same thing with receptionist. She wanted to know why the hospital/treatment centre couldn't do it. Managed to convince her I thought, only to have to go through the same thing with an unhelpful district nurse. I do eventually have an appointment for this morning so hope it will be OK. The bizarre thing is that I have had bloods taken from the line by a district nurse at least twice before. Why do some people make things so difficult? I must say, though, that this is exceptional; I have found most health service personnel to be very caring and helpful.

Nellie, sorry to hear your feet are sore and cracking. Try soaking them in water to which you have added E-45 bath oil.

Rachel, good to hear from you. I hope the chemo sent ahead today; how awful having it cancelled. The experience of TAX even in this group has. Been very varied with some people finding it easier than FEC, others, like me, more difficult. On the plus side, for me, the nausea was less, I didn't get mouth ulcers and the jelly legs effect wasn't so pronounced. You also get 1-3 good days at the start, with the steroids providing quite a burst of energy. But I struggled with aches and pains and restless legs, lost my sense of taste and felt completely exhausted. My hands and feet have been sore and the skin on my hands is now peeling off. With FEC I started to feel more normal by day 6, with TAX it took longer. I am one of the painted nails group and so far OK. Splashed out on having them done professionally every week. Also careful when outside to cover my toes with a towel.

Jackie, good that the process of having TAX went OK this time; good luck with the rest. Like you, and others, I have had sleeping problems all the way through. A good night is when I wake up every couple of hours but manage to get off again quickly. Then there are the nights, especially around chemo, when one gets no sleep at all.

Jos, great your sister is coming over. I have been told that manuka honey is good for a sore mouth.

Must rush off now to get the bloods done.