69.2K members
1.2M posts
cancel
Showing results for 
Search instead for 
Did you mean: 

Marvellous Marchies 2012 Moving on

Ceej
Member

Re: Marvellous Marchies 2012 Moving on

Wish I could help Angie - you've got me on alert now - am now day 6 and my pain started to subside - i have a good thermometer with me always but it's good to be on the ball - I too have slightly sore mouth - am hoping the fact the ONC gave me antibiotics to start taking on day 8 will stop this happening ! They have to be aware! My Tax has not been reduced even tho I can't have GCSF - I did ask and he just said no - made me think as if my chemo is precautionary why bother if it can't be reduced even!

I do think we are all treated as the same and we are different people who will react differently every time - our fears are not taken seriously and I'm not sure what we do about it! i
I am doing 3 days of registration at events with my OH but will be vigilant - first sign of anything and well be off .:)
Let us know Angie - so thinking of you and if I'm near enough I'll have your pets your son and anything else!

Xxxxx

Bettie
Member

Re: Marvellous Marchies 2012 Moving on

Angelhearts
I am so sorry about all the stress you are having and being in hospital. My heart goes out to you. It is bad enough having bc but with all the treatment and its side effects as well its awful. I hope you and your family will all be ok and I am thinking about you as I'm sure everyone else on this forum will be as well.
I hit the wall after FEC 3 and really felt like I didn't want anymore but mine has been no where as bad as yours. I was just feeling awful with the dreaded nausea which wouldn't go away but I know I am lucky compared to a lot of you other ladies.
Hang in there and big hugs
Bettie xx

Guest user
Not applicable

Re: Marvellous Marchies 2012 Moving on

Gawd Angie what a shocking time you are having...
I have just had the doc out to me...and he has given me antibiotics for another chest infection...and if i make it without going in the night..to go tomorrow for bloods...he also asked what cancer i had...and shook his head.....well if my chemo doesnt work...i'm stopping it...i will have had enough....i will go for surgery then..thats it....what also makes me sick as the main hospitals pass the book to the oncology who then can pass it to your doc...then your lucky to get in the chemo ward at all at the weekend....!!!!
I am at the end of my tether tonight and now family problems....son again...
Take care Angie xx home soon...
Dulcie xxxx
Guest user
Not applicable

Re: Marvellous Marchies 2012 Moving on

Hi All,

Anyone miss me

Well I have joined the "NEUTROPENIA'S" and have been in hospital since midnight on Thursday night / Friday morning. I am climbing the walls in frustration and desperately unhappy

I just want to warn any ladies that are about to start Docetaxotere and who are NOT receiving a GSF injection of some kind (white blood count boosting jab) that they shouldn't even think about going away for weekends or trips until they have reached day 14 (at least) - just to be safe !

I did NOT feel ILL and I am quite terrified at how I very nearly didn't bother at all and how even at the hospital I asked if I could leave as they had WRONGLY taken my temp showing a lower reading that my own thermometer - had I received that reading at home then I would of never even bothered calling the hospital.

Turns out he didn't push it into my ear properly - but thankfully even with the lower reading the doctor that assessed me said that my pulse was too high and with the symptons I did have (throbbing gums /cheek & diahorrea) that he was sure I was neutropenic and if I left the hospital I WOULD DIE !

He didn't pull any punches and said that in front of my 15yr old son

I was put on anti biotics at 1am Friday morning - my poor son was taken home by a friend around 2am and I was finally in a ward at 2:30am - where another temp reading was done and this time it was 38.1

Next morning the bloods came back and I have "acute neutropenia" with my Neuts at only 0.39

24hrs later they were 0.49 and then 24 again (the last results) they are still only 0.5

This TAX is a totally different ball game. My bloods bounced back each time on their own with FEC even though I was on a high dose and not having any GSF injections. This TAX is a reduced dose of 80% of the normal dose and it's killed my White Blood Count.

I can't stress enough that you don't get a big bloody sign warning you something is wrong. You have to trust your gut instinct. My temp was hovering around 37.2 - 37.7 for 2 days. It NEVER hit 38 at home. The house was boiling hot - I was hot and bothered and having flushes and it was really hard to decide if this was a temperature or not. My cheek became very painful to touch and I noticed a very very mild soreness when I swallowed but took some honey in boiling water and it felt better. My energy was coming back and I had had a brilliant day getting stuff done at last with the Tax Truck gone. It was one of my "best" days after Tax - it was DAY 9 /10 (Friday was day 10) and I really thought I'd passed the worst.
I am now a prisoner in a hospital side room and not even allowed to have the door open to allow a breeze as the risk is too high apparently and likely to be here for 5 days as can't leave until Neuts reach "1".

Trust me you wouldn't want to be stuck in a hospital away from home and you wouldn't want to risk a long drive home either as you need the anti biotics in you within an hour of becoming Neutropenic.

The good news is that they are finally taking my sore gums VERY seriously and I've already had an ENT specialist look at them and found a 1cm wide ulcer which he's very concerned about and now have to see some special facial team on Monday as they want to check it's nothing sinister. I can stick my tongue right into it - like a hole.

Watch your gums ladies. I told my ONC CONSTANTLY that I was worried about them, I asked every time I went if there was anything more I could do than just Difflam and Cordysol and told there wasn't. I ASKED for anti biotics to take as a precaution and told NO.

In fact I was told to stop worrying about things that will never happen - well they did happen and 5 days in hospital and the stress of having to find people to look after my son and the 2 dogs and 2 cats is stress I really didn't need if it could of at all been avoided. And my poor son has GCSE modules and trying to revise so we are all feeling the strain - poor mum is having to take unpaid time off work now as well.

I am seriously considering not having the last 2 sessions as they can't offer any reassurances that it won't happen again next time - which would be right in the week my son has 4 gcse's. There's just no way I can have 5 days in hospital again, especially when we hear of ladies that are having scans and finding the chemo hasn't even shrunk the cancers !!

It does all this damage and yet doesn't necessarily work on the cancer anyway.
Angie
Parsnip
Member

Re: Marvellous Marchies 2012 Moving on

Gabbylamb, I'm on paclitaxel not docetaxal but many of the SEs seem to be the same, just wanted to say that I have had terrible pains in my nails from the start of PAC. I have had two doses so far, first just over three weeks ago now. So far i haven't lost any nails although my two thumb nails have some discolouration on them. Keeping nails as short as possible helps relieve some of the pain, so if you have longer nails it may help to cut them off. I've been rubbing nail oil into them from the start of chemo (when I remember and have the energy!)) whether that helps or not I don't know but it makes me feel better 🙂
One thing my onc did say about the pain from the taxane family was to mention to your team if it doesn't disappear before your next dose. There is the possibility of permanent nerve damage and they may adjust dose or knock off the last dose if it looks like the nerves are being damaged and not recovering. Quite a scary thought, So keep an eye on yourself
Xx

Guest user
Not applicable

Re: Marvellous Marchies 2012 Moving on

thank you so much for the support KC and Ceej 🙂 means a awful lot to not be alone
Kitcat
Member

Re: Marvellous Marchies 2012 Moving on

Hi Gabby,
Sorry I rarely post on the forum these days, I find it hugely irritating that each time I try to reply to someone the response form flashes back to February 17, it means I can't see the recent posts.
Sounds like you are about to start filgrastim and I wanted to say that I am on my second dose intense treatment of docetaxel and on my second round of filgrastim, which has been reasonably OK.
I did the jabs myself in my tummy, last course and this one, and they don't hurt at all. In the first course I had sharp pains in my joints and bones after three or four days but after I phoned the oncology helpline I was prescribed an anti-inflammatory Dicoflex to take twice a day and also a high level of Co-Dydramol, it might be 60/1000mg. I had my second course of docetaxel last Thursday and started taking the Dicoflex the following day and so far I'm not getting such uncomfortable pain as I did last time so that seems to be a way forward.
Last time I did take some of the painkillers but found them so strong they made me feel sick so I'm trying to manage on a lower level of them for now. Not sure if the side effects I had were from the docetaxel but I have found the extreme lethargy difficult, I had it for about 12 days last course so I was only able to work for a few days at the end of the cycle.
This is my fifth course of treatment, the first three were EC so it's possible you may get different side effects depending on what else you have been taking.
Hope that helps!
KC

Ceej
Member

Re: Marvellous Marchies 2012 Moving on

Hi Gabby - am suffering too - day 5 post tax and the pains running around my body are getting me down - sore throat - I keep making myself walk around but feel like an old lady! Start taking antibiotics in wed as precaution as no injection for me 😞
Not sure I wanna do this tax thng again - I can deal with nausea and other stuff but not being able to move quickly, well, and it feels like someone's pulling at my teeth ! Ridiculous! Yep I guess it's like flu aches all over but keeps moving!

Georgie - I've had one lymph node out but no one said about alummium free stuff so I've been using sure as usual ! I actually bought some diclofenic today for pains but like you am ending up with more stomach ache 😞 not had the bad runs the Bcn warned me of tho !
Anyway - battery going - check in later xx hugs to all us brave suffering gals x

Guest user
Not applicable

Re: Marvellous Marchies 2012 Moving on

First of all I must apologise for no personals today. After congratulating myself on getting through first TAX so much better than FEC, the exhaustion hit today and my fingers are hurting 😞 throat a bit sore, and generally achy. I so dont want to lose my nails as well as everything else, why does this all have to be so hard? I want to enjoy this weather so much but today I just slept on the settee with the patio door open, and thats the closest I got to sunshine 😞 Did I remember someone said TAX is like having the flu?

Sorry to be all 'me' today , I do think about those of you who are having such a rotton time, pleased to see Rae is home, and sorry to hear Dulcie poorly. Glad you had a good day Lydia.

I start Fili injections tomorrow, wonder what they hold?
Guest user
Not applicable

Re: Marvellous Marchies 2012 Moving on

Evening Ladies

Had a lovely Sunday lunch out and to top it off we only had to pay for one meal because the other one was free, which we won when they pull a diners name from the booking list. Never win anything so that was great. Had a walk down to the sea front and it was packed with visitors and the biker brigade. So many different types of bikes which are so lovingly looked after by their owners. On the whole I've done a bit more walking today and have paced myself and rested where I can. Be glad when I get some stamina back and don't have to think about stopping and starting but it will probably be a while yet.

GeorgieB - Sorry to hear that you are having a rough time of it and hope that things start to improve soon. I/we know just how you feel and can't wait for the good days to come. I switched my deodorant to one from Holland & Barrett (may be able to get if from somewhere else) it's called Salt of the Earth and has no fragrance, aluminium chlorohydrate, alcohol or parabens. It's effective and lasts a long time. Can't remember were I heard about it but was told to use a paraben free one. I only had one lymph node removed and so far I've not felt any irritations at all. They have told me that I can't wear deodorant when I go for my radiation treatment. Thankfully, I'm not a sweaty person so hope that it all works out OK but at leat one arm pit will get some. Hope that this is helpful to you? Some of our other ladies may have some other products to recommend as well. BT engineers probably come across far more than you presented so I wouldn't get to worried or concerned about it, nice one though and well done you. You take care now XX.

KQ - Glad your friend sent an apology which was thoroughly deserved and will hopefully put her behaviour behind you. Like the story of 'Ellen' and I know what you mean about the wind and the thought of it flying off etc. Glad you managed to get out for lunch and hope you had a nice time XX.

Dulcie - Sorry to hear that you are not feeling very well again. Hope the temperature is behaving itself and you are not being dragged off to hospital again. Please let us know as soon as you can how things are going. Also sorry to hear about your son - sometimes children can be so thoughtless and lets hope he comes to his senses soon for both your sakes. Don't know if they have Tesco's in NZ so can't help you there but the only other thing I can think of is a money transfer via respective banks. Doubt you are going to be able to sort that out for a while until you are feeling up to dealing with it. Thinking of you and take care XX.

Mary (Peanut) - Your daughter and little Ava should have arrived by now and I do hope you are having a nice time together. The weather is brilliant and it will be nice to get out and about to enjoy yourselves over the weekend XX

Marie (Jane) - Hope your rash has settled down and the cream's done its job. No doubt you are enjoying this good weather as well because you are a day in front of me for treatment. Thinking of you and take care XX.

Twinky - I'm glad that you are finding TAX more manageable than FEC and you seem to be coping with it quite well. Good for you and it all sounds very positive in a funny sort of way, if you know what I mean. I'm sure that we would all rather not be having any of it but it's a necessary evil isin't it? Keep enjoying your music and thinking of you XX.

Carabel - Sounds like the Tax truck's arrived so you make sure that you just rest and ride the fatigue as best you can. I can relate to the twinges to armpit and boob scar area so I wouldn't worry too much about that. I just used to tell myself that it was getting to the spot/s and doing its job. I didn't get a sore throat but my mouth did get very tender. Couldn't eat/drink anything hot only warm and ice drinks/pops. Haven't had any skin peeling off of my feet or hands but have tried to elevate my feet (recliner chairs) whenever sitting down and have worn socks with my slippers/shoes to give an extra layer because of friction. Don't know if these have helped in any way but so far so good. I always do my feet whenever I have a shower (use a pumice and creams) to help keep them soft because I hate getting a cracked heel or hard skin. Hope this of some help but I'm sure some other ladies will advise as well. Thinking of you too XX.

Again, thinking of all our other ladies and hope that you have been able to get out for some of the time this weekend. Looking forward to hearing from you all soon and take care.

Best wishes Beryl XX.
Guest user
Not applicable

Re: Marvellous Marchies 2012 Moving on

Hello Lovely Marchies
What another fab day.
GEORGIE sorry you are having a tough time with TAX, I use Tom's of Maine deoderant, it is Aluminium free, was advised to use an aluminium free deoderant, I have had lumph node removal and will go onto to have rads. You can by most aluminium free deoderants in any supermarket.
RAECHI so glad you finally got home, hope you can manage to enjoy some of this lovely weather.
DULCIE, bless you and your suncream antics I have this image of you and orange stripes!!! Hope that you don't end up in hospital again with the chest infection. BIG HUG.
AMYLOU hope you have managed to enjoy your birthday.
TWINKY I agree much prefer the TAX to FEC, so much easier to deal with, my next one is on the 6th June so will know what to expect this time.
POPPY glad you got on ok with your heart tests, I to am a nurse and much prefer being the nurse that patient. Hope your son continues to make a recovery.
KQ you made me smile with this picture of your OH holding onto Ellen, glad your friend saw fit to appoligise.
HUbby said this morning it may be nice to go away over bank holiday as I am doing ok, (never mind the short notice!!!), He though we may want to go camping!!!!!!!!!!!!!!!!!!
May try a glass of wine tonight , as Guiness a bit hard going in the heat!!!!
Hugs to all have a good evening hope SE's behave
Jane
XXXXXXXX
Patchit
Member

Re: Marvellous Marchies 2012 Moving on

Tee Hee! Nice look Georgie!

Joan xx

GeorgieB
Member

Re: Marvellous Marchies 2012 Moving on

Hi all tax is horrible! Realise I was lucky with FEC s.e compared to now. I took the stronger pain killer and ended up with really bad stomach ache!
Anyone who had lymph node removal what do you use for a deodorant?
Those of you worried about going commando a Bt engineer came to check our line the other day and it was only as he was leaving did I remember not only was I bald but had a tight pyjama top on which very clearly showed I large boob on one side and nothing on the other!
Love Georgie xx

Kittyqueen
Member

Re: Marvellous Marchies 2012 Moving on

Afternoon All,
Am pleased to report my freind has sent a text to apologise so feel bit better about that now. Thank youa ll for your support.
Beautiful day again. Hugs to anyone feeling poorly. Glad you're home Raechi xxx
Will do longer post later as off out for lunch...but a quick fuuny for you. Walking down a road in Manchester and it turned into a wind tunnel, OH had to walk behind me and hold.Ellen' onto my head it she would've been off...we were roaring with laughter.
Catch up later
Love KQ


Guest user
Not applicable

Re: Marvellous Marchies 2012 Moving on

Oops....I read the postings on this thread backwards hence my response to Dulcie first! Raechi so glad you are finally home! Was beginning to think you'd never escape.

Injections - Neulasta is a one - off injection 24 hours after first chemo whilst the Fili one is a daily treatment for a week. I have the Neulasta which I self inject. I've been lucky enough not to get side effects from that ( been having it since my first FEC & now on Tax).

Onc says round 2 of Tax should be easier as body will have got over initial shock of the new drug. The tender nails do ease off during the cycle as do any aches & pains. The dead mouth does improve slightly towards the end of the cycle but I find the tiredness persists but I'd rather have that than the FEC nausea, fuzzy brain & tears! Good luck to you starting the Tax journey. Although it makes me worse for about 4-5 days I find it much more manageable than FEC.

Better stop being lazy & get outside!

Twinky x
Guest user
Not applicable

Re: Marvellous Marchies 2012 Moving on

Oh Dulcie....don't know whether to laugh (at the stripes) or cry ( possible chest infection & ignorant son) at your post. You're certainly having a rough time of it! Sending you a massive hug x x

Twinky x
Guest user
Not applicable

Re: Marvellous Marchies 2012 Moving on

Morning ladies ..i'm feeling really sorry for myself since last night..and i think i am on my way back to hospital again! I have a bad chest infection..again..even with the Neulasta jab! My temp is slowly going up!
My son has not bothered with me..i send him regular updated emails and get nothing back....even the 'belated' birthday present from April..didnt show up? what does that say...and its one of my grandsons birthdays next week and i havent been able to get him what he asked for..a first for me and i am so disappointed....i'm not sure what to do...dont Tesco do a card with money that you can send? Anyone know? (they are in NZ)
On a lighter note..i was throwing factor 15 all over my body ...feet etc...in gay abandion...NOT realising it was SELF TANNING.....WOW! Guess how i looked the next day....STRIPES everywhere...LOL
HAPPY BIRTHDAY AMYLOU XXXX HAVE A GOOD UN!
Dulcie xxxx
Carabel
Member

Re: Marvellous Marchies 2012 Moving on

Morning all
Well day 3 post tax and it is starting to take effect. Feeling a bit achy and throat sore. Scar from lymph node removal is throbbing - has anyone else had this? Have taken some paracetamol so hope that helps. Also noticed skin peeling off soles of feet last night.
Off to do clot injection and will check backmlater to see how everyone is doing.
Carabel xx

poppyD
Member

Re: Marvellous Marchies 2012 Moving on

Hi everyone
KQ cant beleive your friend, you are nicer than me. i am finding it increasingly hard to smile at people who think they are supportive by telling me it will all be alright. I find it patronising and am only spending time with my close friemds who are sincere and are keeping me going. a few times i have felt like shouting I have BC my son has a massive brain tumor dont tell me it will be alright walk in my shoes for a day and see if you would still feel the same. I think i would just drop friends who drain your energy unless it isnt like them and just a one off.
Joan My house is a mess just dont worry about it for now you are more important.
Chascat you did the right thing to seek advice and support I think it will help you to have the courage and strength to get through
raechi glad you are home
dulcie the filgastrin needs to be given everyday as a course there is another similar drug which can be given as a one off called neulasta. when I worked as a district nurse i gave loads of filgastrin and never gave neulasta I assume most trusts still use filgastrin due to cost implications. I have neulasta but am treated privatley.
I think all of you who inject yourselves are amazin, i have taught other people to inject themselves and administered so many injections but dread injecting myself thats crazy.
My son conttinues to recover from his Neuro surgery but is still having memory problems as you can imagine I am so proud of him and his lovley wife as I am off my other son and daughter.
The echo went well and the chemo doesnt appear to have affected my heart.Everytime the oncologist comes near me my blood pressure goes crazy and my pulse starts racing same thing happened with the cardiologist you would have thought i would be more relaxed after working with doctors for so long i told him that i was worried that he was going to tell me i have the heart of an 80 year old as thats what the flora website told me due to my diabetes, he laughed and reassured me it was fine.
I continue to admire all those who are going to work i just couldnt manage it at present, fortunatley they wont have me whilst i am having chemo too high risk of infections
Thanks for all your support eveyone
Love and hugs Poppy x

Guest user
Not applicable

Re: Marvellous Marchies 2012 Moving on

Morning ladies on this bright sunny day on the east coast

Raechi - Glad to hear that you are finally back home which must feel pretty good to you after you long stay in hospital. I do hope that you are feeling OK and they have everything sorted out for you now. Look forward to hearing from you asap XX.

Socks - Having had four sessions of TAX ten I can pretty much relate to everone elses experiences but I have 8 lots of Filg' injections starting from the 3rd day. I did get aches and pains with them but was given Diclofenic (anti-inflam) and told to also take 2 paracetamol. I only took these twice a day and that seems to do the trick. You do get tiingling in the hands and feet and the soles of my feet did get tender. I clipped my nails quite short and put clear nail strengthener on them. So far so good with nails on hands and feet but I can relate to my finger nails being very sensitive. My experience with regards to fatigue was that it was more so the further I went into the treatment. Onch said that was because of accumulation etc. I'm now day 13 post last TAX and feeling so much better but the tiredness is still there. Fingers tips are still sensitive but I'm sure it will slowly lessen and disappear. Thankfully, didn't have any mouth thrush problems or ulcers to deal with. I did use Codosyl mouth wash diluted with water 50/50 (find it too strong otherwise) and the good old ice pops. Should have shares in the damn things, especially the amount of times I've mentioned them in previous mesages! Anyway, we all know that we have to drink plenty of water and that is what I did, so perhaps that helped with the water works and flushing it out of the system. Also I managed to get through all of this without picking up a bug, touch wood, and bloods were OK for each session, which means the injections did the job. They showed me how to do them and after that it was fine and you don't have to hang around for someone to visit etc. I'm sure they are always glad when someone can do them themselves but if I'd wanted them to come in then it wasn't an issue. I stopped cold cap after 2nd session and my hair was starting to grow but now having had a further two sessions my hair has been coming out again. Because it is short it is not too alarming and once it has settled down again I know that the next lot of growth should stay on my head! Eyebrows and lashes have thinned but still have something to put eyeliner and mascara on. Have to wait and see what the final outcome is in a few weeks time. Blasted leg hairs have been growing back after I shaved them weeks ago. Thankfully, I don't have dark hairs so they are not too obvious. Found this a useful site which one of our March ladies gave us - www.youtube.com/user/EyelineHerBlog she's worth checking out for your eyebrows and other tips.

Got to go and get ready for a walk along the sea front. Will get back to you all again later.

Thinking of you all and send my best wishes, Beryl XX
chascat
Member

Re: Marvellous Marchies 2012 Moving on

Evening ladies,


Am struggling to get on the forum now as I can no longer post from my phone
since the forum has changed.


Raechi - so glad you're finally home, you've been in a long time, hope
you're feeling brighter x


Socks - I have the Filigristim injections starting the day after chemo and
for 7 days thereafter, my husband's doing them - with a maniacal grin on his
face! I've had a few bone aches but nothing that's bothered me and to be honest
were barely noticeable, my muscles also felt a bit sore and so did my skin to touch
but it was all fine.


Amylou - What an awful time you've had of it, I can only echo what
Wintersocks has said - I too feel great admiration for you x


KQ - Can't believe what you're so called friend said, I hope in time you're
in a position to have your say and put her in her place.


Sorry not doing too many personals, daren't scroll back for fear of losing
post!


I've been quite anxious lately and ending up emailing the Ask a nurse
service provided by BCC, I sent the email on Thursday night and she phoned me
on Friday morning, what a fab service. My anxiety has been based around the
fact that I had a micro met in one of my lymph nodes but no CT scan, i'm aware
many of you ladies have had them. She reassured me that a micro met has an
infinitesimal chance of spreading and that chemo would mop up anything anyway,
also that I didn't have enough node involvement to warrant one. She also said
that a CT scan will show everything, things that you could have had years but
not known about and that they would then have to be monitored for several
years, causing unnecessary upset and anxiety. I also wanted to know why I was
only on FEC and not FEC-T, again she explained my diagnosis of grade 2, small
lump, ER+ meant I would only need FEC75, I felt reassured after speaking to
her, she said in terms of BC I had a "good diagnosis". I have an
appointment with my BCN on Monday to help me with my anxiety - BC has a lot to
answer for!


Had a lovely day today, took my daughter to Plantasia, where they have 6
mazes, we did 5 of them but it was so hot with no shade and took us ages to
find our way out, couldn't face doing the last one, but they had a lovely children’s
play area and woodland walk which was nice and cool and hardly anyone there
considering the size of the place, we must of walked miles - obviously my hubby
had to come back and have a snooze whilst I plodded on!


Just watching Eurovision, it's really cheesy but we always find it
entertaining as it's so bad, every year it winds me up due to the bent voting
but I still watch it.


Am signing off for the night, still have another 17 countries to vote


Take care all





Love Lydia x

wintersocks
Member

Re: Marvellous Marchies 2012 Moving on

Maryland, Wow that's pretty informative - and some handy tips too. ooh the shock thing doesn't sound good with the nails! I think I will get them cut short. Thanks so much for taking the time to pop by and I do hope you are largely well.
Woolsty too, yes pretty much what I am expecting and remember white hair is better than no hair!!!. I am hoping to get a bit of growth back now on tax, will keep informed.
JoBCC, Thanks for that , I have read it and now feel better informed.
RAe, - so pleased you are on your way home.
Wintersocks. xxx

Maryland
Member

Re: Marvellous Marchies 2012 Moving on

Oops sorry forgot to mention one important thing that I wish someone had warned me about! From about day 5, the tips of my nails felt very uncomfortable, and when I touched anything with them it sernt a 'shock' down to my nail bed! Even made changing bedding difficult...so before next TAX I will. It them very short to try and mitigate this.

Before bc I was a very fit, healthy person who hadn't visited my GP for 7 years and barely took a dozen paras a year.......

raechi
Member

Re: Marvellous Marchies 2012 Moving on

hello ladies,
just to let you know i am finally home. 🙂
will post personals tomorrow as i have a lot of catching up on posts to do. its so good to be home.
lots of love to all,
rae
x

Maryland
Member

Re: Marvellous Marchies 2012 Moving on

Hi Wintersocks.....I'm a very infrequent poster on here, but hope my recent experience of TAX may help you. The BCC publication is spot on, and I do find the Onc plays down SEs a little!

I found FEC SEs fairly manageable, and each treatment they seemed to be less noticeable, assumed my body was getting used to the drugs! I have continued to work 2.5 to 4 days a week for normality (whatever that is anymore!)

On the basis that forewarned is forearmed, this is just MY personal experience......

Days 3 to 7 have Filgrastim injection, as I did on FEC. These made my bones ache, particularly breastbone.

Day 4 aches and pains started. Some fleeting and felt like electric shocks; others more acute, particularly in shoulder blades, lower back and feet. These gradually improved by day 7, and I took 4 hourly paracetamol and ibuprofen.

Day 7 got oral thrush, GP gave me Nystatin. I was already using Difflam as mouth had felt horrible since day 4.

Day 7 had flu like symptoms, shivery and temp of 38 degrees so was hospitalised for 2 days, given IV antibiotics and some to take home. Source of infection unidentified!!

Day 8 got some red patches in between fingers, moisturised loads, they have blistered and now clearing up. Not painful!

Day 11 heels and soles of feet are sore....bathing in cold water helps, as does light moisturising.

Day 12 (today) energy slowly returning, taste starting to reappear and feeling more human! Plan to return to work on Monday 🙂

Talked to Onc whilst in hospital who said we would have a chat when I see her or her team next week, but she felt that a) all SEs were pretty standard, and b) TAX 2 and 3 were likely to be easier!!!!

As I said entirely personal to me, but took me by surprise tbh....hope this helps, and your SEs are minimal/manageable xx

Wolsty
Member

Re: Marvellous Marchies 2012 Moving on

Hi Wintersocks

Re Docetaxel and SEs. For me they start on afternoon of day 3 and last for 5 ish days. I have one Neulasta injection 24 hours after chemo. Neulasta causes aches anyway and tax adds to them. Knees hurt, random shooting pains but it's not too bad and take ibriprofen and paracetamol. General just feel very tired and lacking in energy. Hope you deal with it OK. Also, my eyebrows are thinning but still here and still have some eyelashes. Only one more cycle to go so I am hoping that some will survive for an end of chemo photo!!!

My hair that is sprouting on my head appears to be white. OMG!!!

Jane x

Jo_BCC
Member

Re: Marvellous Marchies 2012 Moving on

Hi wintersocks
I have put for you below the link to BCC's publication on Docetaxel, I hope it helps. If it doesn't answer your questions please feel free to give the helpline here a ring, they're her to support you.
http://www2.breastcancercare.org.uk/publications/treatment-side-effects/docetaxel-taxotere-bcc35

Take care,
Jo, Facilitator

wintersocks
Member

Re: Marvellous Marchies 2012 Moving on

Ok. I have just a few queries about Docetaxol, that i had on Fri:
Does this one make the eye lashes and eyebrows fall out? If so does anyone know best way to draw eyebrows in?.
I have to have that Filigristim injection now for 7 days. The nurse will come back and do the 2nd one tomorrow. I am a bit surprised about how much I am getting it . I just thought it was 1 injection per cycle? What have others had?
I have now fleeting pains shooting across, the muscles and bones. but it is copeable with the nurse told me that if they worsen paracetomol and ibrufen should be enough to sort it. I am so glad to have taken the last of those steroids for this cycle. I really hate them, I do think they make more anxious.
I am really, really hoping for minimal se's here, and i want that sore throat to stay away too!
I do hope that everyone has had a lovely day n the sun. I sat in my rather overgrown garden reading the Sat papers with my OH, who has now gone home and I will probably not see him for 2 weeks now . He has been marvellous, came with me for all my appontments this week, sorted my tablets, cooked, etc. Now will live alone for interim, thank heavens my 14 yr old is back tomorrow night as I do miss him, but it will be noisy. He never stops talking!
Thanks All.
Socks xxx

Guest user
Not applicable

Re: Marvellous Marchies 2012 Moving on

Evening Ladies.
Well been enjoyning the lovely sunshine today, did manage to pop to Gt Yarmouth had a walk along seafront and bought some summer trousers clotes that fit!!!!
DULCIE sorry to hear about your friends son, I am sure she will understand you will be thinking of her, can just picture you having telling your other friend she's not coming to your funeral. Hope your OH doing ok. Glad I had not planned any visits to in laws as they all have chickenpox!!!!!!!!!!!!!!!
KQ people really surprise you sometimes with their attitudes, they are totally unaware of the consequences their germs could have on us. I hope she appoligises to you.
BETTIE glad you are feeling better.
PATCHIT glad you had a nice evening out, and have a few extra good days before your next treat.
POPPY hope all went ok with heart tests today. and you are feeling better.
PEANUT hope you have a lovely time with your daughter and grandaughter.
RAECHI are you home if so hope you are doing ok.
BERYL glad you are getting energy levels back, sounds like you have a nice meal planned.
TWINKY hope you are still doing ok with SE's
WOLTSY hope you managed to get some rest after your hosp apt.
Hope everyone else doing ok
Love Jane
XXXX
Guest user
Not applicable

Re: Marvellous Marchies 2012 Moving on

Hi Jane

Tax truck hasnt hit my yet as it's only day 2 bit I feel very tired already. Went to a market at lunchtime then back out to a garden centre this afternoon. Very glad to be flopping in front of the tv tonight.

Fed up that I won't be able to do much. So many things need doing in thd garden. Just wish I had the energy! I used to do so much. It's hard learning to be lazy to help the body get through this. Never mind. We've both just got one more to go!

Hugs to all you others too! So much to cope with, not just SE's but other people's reactions & ignorance. Such a hard journey.

Twinky x
Wolsty
Member

Re: Marvellous Marchies 2012 Moving on

Hi ladies6

Sorry brain just not up to personals. Got up this morning and felt quite good (day 6 post Tax 5). Had an appointment with my surgeon at hospital. Got dressed, put some make-up on - looking OK!! Surgeon normally says how well I am looking but this time said I looked tired - very true. Went downwhill as soon as I came out from appointment and have just been lazing between garden, sofa and bed again!! My daughters and OH are all out enjoying the weather which is good.

Knee joint on right leg has been a bit sore this time round, nails are a bit tender too. Also either have a cold or hay fever so am taking piriton us in case. It amazes me now how I just shove any old drugs in to deal with SEs!!

I'm bored!!!

Jane x

wintersocks
Member

Re: Marvellous Marchies 2012 Moving on

Hi all, Have had 1st Tax and Filigrastim (sp?) injection this morning from dn. so far so good but more of that later.

Della: (historygirl) - Ho nice to hear from you again! Yes we are indeed in a very similar positon. I am pleased you mentioned it as I do find it re-assuring. Dulcie is too. To that end it would be great if we could continue to compare notes, if you don't want to post on the forum, we can always pm. but thanks for taking the time to inform me.
Amylou: you have certainly had a real hard year that is for sure, what you have had to endure would have left lesser people unable to bear. your courage and fortitude through such terrible times shines through. I had a similar time to you when my children were smaller, I nearly didn't come through it. So please take the time to admire and respect yourself. Cos I do!
Megsmum: aw, thanks for your lovely words, I know you will wait for me if I am a bit later finishing than others. I would do the sam too. I am sorry TAX is making you feel a little anxious, perhaps a chat with your BCN might help?
Carabel: your kind words too. it means a lot: Yes, I agree life has sure changed for us.
Peanut: and your lovely words of support too, we may be finishing around the same time, My last is scheduled for July the 6th -so far , but may have to have extra. I agree with you about the scanning once we are done. I am thinking of paying too, I will let you know what my research throws up.
Bettie: Well, that is fab news about your scan, brilliant. It is so nice to know that we do sometimes get good news! and nice to be able to share it when it comes through.
Dulcie: i also have a friend who is a real hypochodriac, and she really is so robust and fit. I think she likes the attention. I do feel sorry for her GP, and she has not been a great deal of help to me. I can't help but feel irritated at times with her. I am avoiding if I can!
Kittyqueen: i met someone who I know well, and she just smiled briefly and put her head down. The cancer dx does make people behave in odd ways, nevertheless it is upsetting. I want to say I haven't got the plague. but is probably too energy draining.
Beryl: I am pleased you you seem to be coming through ok, on this your last session. what a relief that the tunnel light must be getting brighter.
Chascat: Hope you are ok?
Danigirl: you too, I have been in touch with you.
I am sure I have missed others (oH yes, Rae We are all windering where you are up to? but I am sure you will give us the story of what has gone on for you when you have more time)
I will post a little later and tell you where I am with all (as last 3 days non-stop medical. I also have a few questions re TAX. Beryl get your reading glasses on!)
Socks. xxxx

Guest user
Not applicable

Re: Marvellous Marchies 2012 Moving on

Hi Everyone
Been for my walk along the prom really hot today and was lovely to sit by the sea with a nice breeze coming in. Exhausted now, waiting for daughter to arrive, not due till about 6.30 this evening as coming on the train from London. Dulcie- you are not lazy, I feel exactly the same, my OH says the dust will be there tomorrow so why worry, hes right as well. This whole episode is exhausting so dont feel guilty about a bit of dust.
KQ-What a nasty thing your friend has done. Its hard enough to cope with BC without other people saying stupid things. We had a customer in the other week whos wife is having chemo for skin cancer and she has had none of the side effects we have had and he had the cheek to say that maybe I was being a bit soft about the whole thing!! Long story about what was said by OH to him and in the end he told him to leave using some strong language!! The thing is chemo strengths are different with other cancers and apparently she was told that because it was not too strong she wouldnt lose her hair or have any nausea. I was so upset at the time as he made me feel a fraud but OH is furious. Dont think we will see him again!!
Patchit- Makes you feel more normal doesnt it when OH goes to bed before you!! Great you enjoyed your meal. Bettie- You are an inspiration going commando and reading your posts is making me more determined to try and go out without wig/scarf. Well done you, I hope i get to that point as so hot with wig on!!
Carabel- Its a worry when they say we dont need scans but I would like to have one when I am finished as it would make me feel better. It seems each oncologist has a different approach so will wait and see.
Beryl- Lovely to hear you enjoyed your friends visit, hope the redness has subsided for you xx
Rae- Are you still in hospital, hope you ok? xx
To everyone else hope you doing ok? Thinking of you all
Mary xx
Guest user
Not applicable

Re: Marvellous Marchies 2012 Moving on

Afternoon lovely ladies

Been out and about in the town before it gets too hectic. The weather is lovely and a nice breeze to help with 'Frankie', so she's not been too uncomfortable.

Had a nice natter with my friend yesterday afternoon but after she had gone my face started to get hot and flushed and my right ear. Checked out how I was feeling same time last session and it was the same. I know it has happened virutally every session so wasn't too concerned. Kept checking my temp and the highest it got was 37.6 and then went down again. Woke up this morning with a slightly heavy head but took to Ibruffen and all OK now. Think the walk out did me the world of good, nice sea air etc.

Now day 12 post TAX and my energy levels starting rise but still nothing like before this BC experience. Still waiting for my rad mapping appointment to come through, but I did tell them that I would'nt be availbale to travel to Addenbrookes before 28 May, which will be in my so called good week and then BH starts. Have to wait and see what they throw at me. Looking forward to going out for a nice meal with hubby and friends next Tues evening and then gearing up for the Jubilee celebrations because there are lots of things going on in the town.

KQ - Sounds like your so called friend was having a right tantrum but you know what, I think she will be ashamed of herself when she calms down, or may be not because she may not be that kind of person. I know that must have hurt you a great deal considering what you have been through so far. I'd say don't dwell but that's not easy under the circumstances. Just as well you had your OH with you to give you the support you need/ed. Let's hope that the lady in question sees sence and contacts you to appologies but perhaps she's the type that wont. It's all very difficult. You take care now and I'm sure there are plenty of people/friends around to give you the support you need.

Ceej - Sorry can't answer your question ref Nystatin and Diflam as I've only ever used Codysyl mouth wash which I've diluted 50/50 because too strong otherwise. Fortunately for me it has worked and I've had not problems with thrush and ulcers. My mouth did get sore/tender and the awful taste etc. I also used toothpaste with bicarb in it but can't say if that was a particular help or not. Considering that I've very rarely had any tea/coffee and had only bitter lemon to drink when out and all the blasted water, I've found that my teeth have got stained. Don't know if all the chems that have been put inside us has contributed to that but it makes me wonder. I'm due a dental inspection in June which I will cancel until radiation is finished. Hate having my teeth cleaned but it will be a necessary evil when the time comes. Hope you are still TAX truck free and coping OK. Enjoy your weekend and take care.

Gabby - Lovely smiling photo of you and your daughter and well done you. Thought about going out today with nothing on my head but it is quite windy outside so put my wig on and we survived the trip. Went into a charity shop for a nose around and came out with a denim hat which will do for the garden or when we are away in the caravan. Don't think I would wear it in the town but you never know. It was only £1.50 and didn't look like it had ever been worn. Hope you are feeling OK today and can get out and about again XX.

Bettie - Good news about your other tumour not changing and I hope that the nausea has left you now. You are right that was a bizaar thing to happen with the hallucinations. Tell your hubby good luck with his studies because that must be quite tough to get through, especially with everything else that is going on, well done him. thinking of you XX.

PoppyD -- How did you get on at your appointmens? Hope everthing went well and you are feeling a little/much better today. Also how is your lovely son doing? Thinking of you XX.

Dulcie - How are you doing today? Hope you are coping OK post treatment and you are not suffering much in the way of s/e's. I can just imagine you telling the lady not to attend etc. How did she respond? Also hoping that your O/H is recovering with the medication he was given. Let us know how you are asap XX.

Marie (Jane) - I know what you mean about going out for clothes but I can't drum up the energy or enthusiasm yet. Perhaps next week I'll venture out to King's Lynn to see what they have. Hope you enjoyed your potter around the garden yesterday. I've only stuck my head out the door and watched hubby toil away. Love all the flowers and the lovely colours, don't they cheer you up?

Mary (Peanut) - No doubt you will be out in Blackpool somewhere today. These are your good days and why not. Enjoy your time with family and that lovely grand-daughter of yours XX.

Raechi - Are you still in hopital or have they finally let you out to come home? Thinking of you and I know you will let us know an update asap XX.

All our other beautiful ladies - I do hope you are all OK and are able to enjoy this lovely weather that we are having and look forward to hearing from you all very soon.

Love and best wishes, Beryl XX.
Carabel
Member

Re: Marvellous Marchies 2012 Moving on

Dulce not sure who else has lung nodes but I have a few. . They haven't stated how many and I haven't asked. I have been told that with the sensitivity of ct scans they can pick up all sorts of things that can turn out to be nothing. Could be old scarring but as they don't have scans from before bc they can't be sure They have told me that if they dragged 100 people off the street and scanned them 75 would like have some sort of nodes which are nothing but because we have cancer diagnosis they need to consider the possibility of spread. I have had three month follow up with no change so am hopefull that they will turn out to be nothing. Will get another scan after chemo finished ant then three monthly until oncologist satisfied. I am trying to put it to the back of my mind and not dwell on it for the time bing. Hope you can do this too. Xxxx

Patchit
Member

Re: Marvellous Marchies 2012 Moving on

Good morning ladies.

Another glorious day here, as I think it is for everyone? Hope the sun is shining for us all! We went out for a meal last night, which was really nice and the pub was packed. The weather had brought everyone out. OH was really tired though as he has been working very hard this week, so we were home again and he was in bed by 9.30! Makes a change for it to be him going to bed before me! I am feeling fine at the moment, which is great. Having to go through treatment has made me appreciate the days when I feel well, I am sure we all feel the same way.

Raechi, are you home yet? I keep thinking of you and really hope things have improved for you. Xxx

Poppy, good luck with the ECG today, I hope everything is ok.

Carolyn, Caren, Gabby, Wolsty, Bettie, Socks, Ceej, Carabel (anyone else?) I hope you are all feeling ok after your treats this week. I hope the SE’s are being well controlled.

Gabby, well done with the going commando! I know exactly how it made you feel as I felt the same. Now I don’t really think twice about going out commando and have been in to work, Tesco, M&S etc. I have also done it alone, which was a bit daunting at first, but fine really. I have a friend who doesn’t like the idea of me going out with nothing on my head. In fact, she hasn’t seen my baldy look yet and keeps trying to suggest things I could wear on my head! She doesn’t know that I also go out without my prosthesis too (I altered one of my bra’s so that I have a flat side)! Funny the things that I thought would really have bothered me have paled into insignificance.

Historygirl, good luck with your scan, do you have a date yet?

Amylou, what a year you had last year! Its awful how things seem to come along all at the same time. Its also good that we don’t know what the future holds for us or we would be nervous wrecks! You sound so positive, I have goosebumps reading how you feel now! I want to give you a big hug! I am sure we will arrange a meet up in the future, it will be lovely to see everyone face to face.

Ceej, I hope you manage to get away for a holiday. It would do you good to feel in control of your life again rather than dancing to BC’s tune. Are you thinking of going abroad or in UK?

Megsmum, my Onc has taken me off Tax and put me back on Fec after being in hospital after my first Tax (I was already on the reduced dose). I don’t know how they make their decisions about our treatments. The antibiotics do sound a good idea for you though, if you have to stay on Tax.

Carabel, like you I was hardly ill before BC. I found it really hard to give in to being unwell, mainly because I sort of didn’t really know how to be ill, if that makes sense? Its certainly changed me and made me realise that I am not indestructible! I am still not a good patient, actually I am not a patient patient!

Peanut, I hope you have a lovely time with your daughter and granddaughter.

Beryl, I hope you are feeling stronger again today and are able to enjoy the sunshine there in Sunny Hunny.

Bettie, that’s great news re your tumour! You must be so relieved. How lovely going to Bala. My OH and I went there a few years ago and had a great time. The weather was perfect, which helped of course, but it is such a lovely place. We are hoping to go to the Gower Peninsular soon, but I am waiting to see what the weather is going to do!

Dulcie, so sorry to hear about your friends son. I am sure your friend must know you are thinking of her even if you cannot be there physically for her. You need to look after yourself. I hope you have been managing the SE’s ok? No, I haven’t been out in the hat like the picture, I wouldn’t be able to see where I am going!!!!! I am sure you will slowly get your energy back soon. xxx

KQ, I hope you have a nice time out today and enjoy catching up with your kitty friends. I am sure you will have a purrfectly lovely time, lazing about in the sunshine, exactly what a feline lover should be doing! I cant believe your ‘friend’! What’s she on?! Don’t feel bad, she is totally out of order and just cant understand what you are going through.

Well, I am off to put another load of washing in. My house is a tip at the moment after having no attention for the last while! I don’t feel much like cleaning though, I just want to enjoy the good weather while I feel ok! Lazy lump, aren’t i?!!!

Enjoy the day ladies! Hope those with SE’s are able to at least sit outside for a while.

Joan xxx

Guest user
Not applicable

Re: Marvellous Marchies 2012 Moving on

Thanks Kitty morning ladies
Della you have had no change after your EC? i have had the2 now and then an op..but it was not going to be like that..i was having 4 TAX first! Please can you tell me how you get on ..thanks.
RAE are you feeling better now..i am not sure if you are home..i think you are xx
PARGAYAN hi to you i hope those ears of yours are not so red now?
POPPY i hope you are feeling better? i didnt know that EC can affect the heart...just thought Tax..as i have a heart problem!
Someone has 2 lung nodes i'm very interested as i have too!they are keeping mumabout them at the moment...but i'm not daft...
WOLSTY hi i hope you are keeping well?
CAROLYN i hope you are good too?
BETTIE i am so pleased for you that your problem thigh will be dealt with kindly bless you!
SOX i hope your sleep gets better on these warm nights....and i and possibly Amylou will be here for many months yet...me deffo...past end of year..so dont worry..i was worried but Beryls said everyone will wait and we have to all meet up yet!
GABBY i like your knew piccy go for it girl...
CEEJ i agree its nice to have something to look forward too..a nice break..
MEGSMUM so glad you have got through your really rough patch..
CARABEL brave you are doing your own jabs...and a few other peps are too! Not me...coward..
CLARE-N i hope you are well ..sorry my brain is going now.
EL HIBBO i hope your feeling better soon...
MARIE67-JANE how are you ? ever so cheerful your posts are....
BERYLS hi i'm so glad you are at the end of the first part of your treatment...we are all ears waiting to hear about the next..you have done so well ..i went to Holker Hall many years ago to day out when all the hot air ballons went up...we didnt go up in one though!
KITTY hi to you ..dont some people make you mad ..they just dont understand at all!!
PATCHIT JOAN another one that makes me laugh..do you go out in that hat like in the picture Joan...please say you did...? How are you?
AMYLOU things can only get better ...i will get some money in my phone ..this afternoon xx
PEANUT i wish i was in Blackpool and having a lovely walk on the front...but i havent any energy at all...i just stripped the winter bedding off and had to lie in a chair for an hour...it has taken me that long to post ....
Dulcie xxxx
Bettie
Member

Re: Marvellous Marchies 2012 Moving on

Kittyqueen, some people just don't get it do they, how serious BC is and how we have to protect ourselves from infection. It's your friends problem not yours and don't let it upset you. Your health is the most important thing. You should go commando, you look great. I went into our local shop this morning bald and noone batted an eyelid, or if they did I didn't notice. We shouldn't worry about other people.
Feel slightly better this morning after being up since 2 with the dreaded nausea still. Its eased off a bit now. Good job we have our good weeks or we'd never want the next chemo.
Envious of you who live by the sea. I'd love just to go and watch it now. In 2 weeks we are off to Bala with all the family (16 of us) my Dad treats us each year and we rent 5 cottages in the mountains. Its beautiful. I love North Wales, the scenery and the peace.
Gorgeous day today. Don't forget your high factors ladies. Enjoy...
Bettie xx

Kittyqueen
Member

Re: Marvellous Marchies 2012 Moving on

Contd prssed wrong button agagin!!!!
Peanut... I couldn't stand thought of coldcap again after first time...I'm sure it gave me a rotten headache for a few days too xxx
Dulcie... So sorry about your friends son xxxx But good on ya re the other friend xxxx
Carabel...Pleased you are feeling ok xxx
Marie67... I've just discovered On-line clothes shopping :)))))))))))))))))))))))))))) :))))))))) Naught me lololol
Gabbylamb... You look fab xxxx
BerylS.... Are you feeling more or less back to normal now? interesting re scans...my surgeon said I didn't need them before I had surgery and has only mentioned yearly mammograms after I've finished too and my treatment is actually private so I think they must be right...however think I agree re sticking with yearly if we got put on 3 year checks xxx
Ceej... Pleased you seem to be feeling well. Not sure about the Nystatin with difflam...maybe call the helpline today?
Hugs to everone I've missed...enjoy the sunshine xxx
Love KQ

Kittyqueen
Member

Re: Marvellous Marchies 2012 Moving on

Morning All,
Still beautiful here...OH and I are going out in manchester to today..am quite excited as going to meet 2 ladies for a drink from my kitty forum so can talk bengals for hours lololol.
Had a bit of a nasty last night, decided to call in and see a friend who I haven't been able to see as she's been in hospital with pleurasy and her hubby has had bad chest infections so been waiting till they were all clear obviously before going. Anyway she was walking up the road as we were about to turn into her road so wound window down and said oooh just coming to see you and got a huge mouthful...the gist was..............well about time, you've been to see everyone else except us (I haven't) and I've taken the huff...............!!!!!!!! OH made me drive off..............he's quite protective of me at the minute...I was sooooooooo upset though. I think she thinks I've got a cold not something where I have to take care of myself first.
Amy-Lou... I an so sorry you have had such a tough year but I think you are amazing and will come out of this a really strong person xxxxx
Bettie... I'm still not brave enough to g out commando so admire all f you who do. Have got to the stage where I will whip hat/wig off and show people my baldy bonce. Got 2 or 3 oh being bald suits you and oh don't you look cute. That made me giggle....don't think I've ever been cute in my life!!!
PoppyD... Pleased you are feeling better xxxx
Peanut...

Ceej
Member

Re: Marvellous Marchies 2012 Moving on

Question ladies - ONC gave me Nystatin to rinse around my mouth 4 times a day - do I carry on with the Difflam mouthwash first ? He also gave me some thrush tablets in case but am thinking about starting to take them now - what experiences has anyone else had ? Would rather prevent than cure 🙂 x

poppyD
Member

Re: Marvellous Marchies 2012 Moving on

Hi everyone,
well once i recoverd from being sick on wed I have been more settled.
Amyloo you are trying to be so positive I hope you get some better luck soon,and a good night sleep
Bettie are you changing to tax, I found the nauseau awfull after my 3rd FEC, they changed my antiemetics this time on my 4th and nauseau much better. Onco changed ondansetron to granestoron and kept emend and changed breakthrough to domperidone and it seemed to help.
Peanut i can see why you didnt continue with cold cap its`awful
Beryls i ammore settled now, but willbe glad to get cardiologist appt and ech over tommorow hopefully he will give results there and then, thanks for asking
Megsmum hope you are improving and will get lucky soon. For some reason us nurses seem to get everything when we are patients. I dont knowaboutyou but i much prefer nursing people than being a patient. One day we will get back to work
Marie thanks I am more settled
Gabby lamb what a nice photo of you andyour daughter, you look great, keep smiling

And to everyone else hope you g et a goodnight sleep, and side effects wellcontrolled, Big hug to you all

Love Poppy X

Guest user
Not applicable

Re: Marvellous Marchies 2012 Moving on

Evening ladies i am going to do a personal later...
I just had bad news an hour ago my friend has just lost her son this afternoon he would have been 45 next Wednesday..he had an accident nearly 5 years ago..and was left in a fairly bad way....he had been a mountineer..but did not have his accident that way...i feel i just haven't got it to be there for his mum..and my OH's when his mum goes too!
All these terrible things that can happen..
But i also told an 'old friend' who has turned her back on me......that she was NOT coming to my FUNERAl...as she sees them as 'social functions' for a good day..out! BOY i felt really good ..and she is a BIG hypocondriac that has been dying herself..for years....lol bloody lol
Sorry i am evil tonight...but all my senses are mixed up..i am so confused....
Will be back for a personal....Amylou sent you a PM and no money in my phone!! soz
Dulcie xxxx
Carabel
Member

Re: Marvellous Marchies 2012 Moving on

Evening everyone. Just an update to say still okay following yesterday's tax. Went out to park for a while, had a bit of retail therapy and then sat in my sister's garden for a fe hours this afternoon. The sun certainly cheers me up. Need to go and make some dinner for OS who is due in from work shortly (it's his birthday today). Really wish I could have a glass of wine with him but maybe not a good idea first day post tax. Maybe tomorrow.....
Hope everyone manages to have a good sleep tomorrow. Looking forward to more sunshine tomorrow.
Carabe xxxx

Bettie
Member

Re: Marvellous Marchies 2012 Moving on

Well done Gabbylamb you look beautiful!
Its just to flamin hot to wear wigs or scarves we just need to remember to put a high factor sunscreen on our baldy heads. I've decided to go commando whereever I am in this heat and actually you think people stare but I think most dont and if they do its their problem!!
Bettie xx

Guest user
Not applicable

Re: Marvellous Marchies 2012 Moving on

Hello Lovely Ladies,
Well what fab weather, pottered a bit indoors this morning then headed outdorrs to potter in garden this afternoon. With all this lovely weather am going to have to head to the shops soon as my summer clothes don't fit.
BERYL hope you had a nice time with your friend, would imagine you should soon have a date sent through to be marked out for rads.
BETTIE good news re your scan, even though a small op will be needed later. It must have been a bit scary seeing things, how you are felling better now.
PEANUT despite getting sunburnt hope you managed to enjoy your wine, have you decided about going away tyet over BH? Isn't it strange how different oncs do different things and give different reasons for doing them.
AMYLOU you have had a tough time for one so young, hopefully you seem to be coming through it ok and have 2 cute little ones. BIG HUG/
CEEJ you to have had a tough time. I to was given antibiotics by onc to take from day 7-13. Hope you managed to cope with the tiredness and are doing ok with other SE's folowing TAX.
CARABEL hope you are doing ok still with your SE's and injections.
MEGSMUM hope you are doing ok now you are home and managed to getr a bit of rest in the garden this afternoon to. Hope you have a lovely time with friends tomorrow.
GABBYLAMB hope you are doing ok after TAX.
WOLTSY yes the weariness is something else, hope that you had a lovely time with your mum.
POPPY what a day you had yesterday, hope things have settled down today and you have managed to get some rest.
GEORGIE hope you are doing ok with hte aches and extra painkillers have helped.
DULCIE how are you doing?
PARSNIP glad you are feeling more comfy with the aches, hope al goes well when you see surgeon next week.
TWINKY hope you got on ok today, and have been sorted with better meds.
CAROLYN hope you are still doing ok after TAX.
RAECHI are you home yet?
PARGAYAN, I remembered to plaster my skin in suncream whilst pottering outside.
Hope everyone else is doing ok and that SE's will be kind.
Love Jane.
XX

Guest user
Not applicable

Re: Marvellous Marchies 2012 Moving on

Been a good day! This is a picture of my daughter and I today , 2nd day going commando in town!
Bettie
Member

Re: Marvellous Marchies 2012 Moving on

Good afternoon Ladies I hope you're all managing to enjoy the sun and to those of suffering with SE's big hugs.
I feel awful today with nausea and even hallucinating that I could see clusters of insects on the bedroom ceiling. I thought I was dreaming but I wasn't. Thankfully after looking for the 4th time they were gone. Bizaar!!
Anyway had some good news today. Tumour 1 that I was really worried about hasn't grown and its a hernia giving me problems. Even though its my fifth one (caused by several major surgeries) in the scheme of things I am totally elated even though I will need a small op after all this treatment. It was a weight off my shoulders.
Hubby has been at home studying today. He's doing an honours degree in youth and criminal justice (he's a probation officer) I'm dead proud of him as I know how difficult he's finding it.
Going for another lie down
Enjoy your evening and to those of you who feel like drinking have one for me
Cheers

Bettie xx

Guest user
Not applicable

Re: Marvellous Marchies 2012 Moving on

Hello Ladies,
Been out and about this morning before it gets too warm here on the east coast. Lovely light breeze outside and everywhere looks cheerful.

Sorry to hear some of our ladies are not feeling too good at the moment and Rachie are you still in hospital?

Mary (Peanut) - I'm not getting a scan after my treatment has finished either. Even broached the subject of pay privately for a 6 month mam instead of waiting for 12 month one. That did go down well and my Onc said that to subject me with even more radiation and pressure was not a good thing. He said that the European.UK guidlines were to follow 12 month mams and there was no evidence to prove that doing them every 6 months was beneficial etc. I know that when/if if get to the 5 year mark and they put me on to 3 yearly again that will be looking at paying for annual ones. It will pay us all to be vigilant and investiage any persistent aches or pains and not to get fobbed off etc . Anyway, enough said about that.

Carabel - Well done getting through your first session of Tax yesterday and you are feeling OK today. I put my clip board away with all meds listed on it. It felt so good, especially no more WBC injections. Thinking of you and you will get there XX.

Ceej - Well done you as well and going into work day 3 post TAX. It certainly sounds like you had enough before all this BC stuff started. I think you should be very proud of yourself with the way you are dealing with things. If you have finished steroids now then your tiredness will start to kick in and you are going to have to take a step back a bit unless you are SUPERWOMAN! No, joking apart, I found late day 3 onwards the fatigue kicked in so please be kind to yourself. Thinking of you XX.

Aymlou, Bettie and WS - All up in the early hours of the morning and I can sympathise with you because it is horrible when you can't sleep and it throws you out for the next day. Socks I hope your first TAX goes well for you today and there are no problems etc. Thinking of you all XXX.

Megsmum - Pace yourself this afternoon and enjoy your visitors tomorrow. It looks like it's going to be another nice day for all XX.

Dulcie, Jayjay, Waiting too, KT23, Kojak, PoppyD, Care_n, Spacehopper, Wolsty, Pargayan, Gabby, Carolyn, Patchit, Marie (Jane) and any other ladies my brain won't bring to mind - how are you all doing this afternoon?

I have a friend coming to see me this afternoon for a natter so I have kept this message relatively brief. Keep looking out the garden and will probably get hubby to get the sun shade out so I have some shade to sit in (not a sun worshipper) put it down to me being/was a red head, which is not a bad thing as I don't want to get burnt. Every day is getting better but still get tired just pottering around.

Love to all and my thoughts are with you all.

Beryl XX.

Guest user
Not applicable

Re: Marvellous Marchies 2012 Moving on

Morning everyone from sunny Blackpool!! Have just been for a walk along the front, its so hot was exhausted when I got back but am trying to get my energy levels back up.
WS- my chemo finishes in July so will be here for a while and will continue to do so to support you till you finish so dont ever feel alone hon, we are all here with you till the bitter end xx
Rae- hope you are feeling better and get home soon, thinking of you xx
Pargayan- Went to the pub with OH yesterday evening and had a couple of glasses of wine but didnt realise how hot it was till got home and realised both arms very red!! Stupid of me not to put cream on!
Wolsty- Enjoy having your mum to stay, my daughter and grandaughter coming on Sat for 4 days, really looking forward to the company.
Amylou- What an awful year you have had hun. On the up now though, your partner is an idiot sorry! Thinking of you xx
Bettie- I found FEC 3 the worst to recover from, nausea managable but was there! Congrats on going commando, wish I had the nerve to do it especially now weather so hot!
Gabbylamb-Am with you on the sun and even the wine but sex!! Whats that!!
Ceej- Great to hear you feeling good, hope it continues and sorry to hear you have had a shit year also. My 27year old niece died last Sept from Cervical cancer which has been really tough as I nursed her for 3 months and looked after her 2 children who now live with their dad in Manchester.Miss them loads.
Megsmum- hope they get your dose sorted for you and the next one is more managablexx
Carabel- What a begger not noticing your blood clot, sometimes you wonder what they are doing!! Hope it gets sorted for you.xx
CareN-Thank you for your lovely words. I am hoping when I have first Tax that i manage it ok.
EBHippo-Flipping heck 2 stone lost, I agree they may have to look at your dose with this weight loss, I get weighed every time I go to see oncologist as he says chemo goes on BMI. Good luck for next time, thinking of you xx
KQ- My taste buds have changed dramatically also and am now eating food that I wouldnt normally eat such as yourself I find I need food with strong taste or spicy otherwise dont seem to taste food the same!
Marie67- My oncologist also told me because I have had surgery he wouldnt do any scans after treatment finishes. He also said if he did a scan and they found any other cancer that he would have failed with the treatment, doesnt make you feel very confident as I would like a scan doing to ensure I was clear so not sure what to do. My OH says we should may be pay privately for one but I really dont know what to do.
Carolyn- I am with you on the idea that I dont particularly want people to look at me and know I have cancer which is probably why I am loath to wear scarves/hats rather then my wig. Maybe its just me but I dont want pity!!
Patchit- Yes it was a shame about Blackpool losing the football because it would have meant a lot of money for the town but maybe next year!!
PoppyD- I fainted the 2nd time I wore the cold cap, made me feel really poorly which is why I stopped it. The nurse said it was possibly due to sudden drop in body temp due to the cold cap being so cold!! At least its cut down on time spent on unit.
Beryl- hope you are feeling more energetic today and managing to get out and about in the sun.xx
Thinking of everyone, if I havent mentioned you I am still thinking of you.
Best wishes
Mary xx