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Starting chemo in April 2012

margietee
Member

Re: Starting chemo in April 2012

Morning bunnies.

Can't believe it is Friday already. Only three weeks to go to bunnyfest. Reminder to self - must get those bunerasers ..... Eh? That was supposed to be bunny ears .... Have stolen OH's iPad again, so into auto correcting.

Sara, belated happy birthday. Hope you had a great day with minimal SEs to spoil it (perhaps that is wishful thinking, but I can hope it for you, and for all of us.) I was so sorry to read about your uneven hair growth and worries about the alopecia, also about the ongoing probs with your nails.

Wendy, yes, your feet sound about as painful as mine tho I'm 'lucky' in that mine aren't peeling yet. Fingers crossed they don't ever, but I do wish the swelling would go down and the awful pain would go away. I am so sorry you can't come to BF. Little chick too. Wendy, I can understand that both the drive or the train would be out of the question for you right now. Perhaps we will have another BF in the spring when we are all feeling much better ....

Lee, are you sure your feet probs are due to the arimidex? The soreness you describe sounds similar to mine and Wendy's, so perhaps it is palmar plantar with you too? Is foot soreness indicated as a poss SE with air index? (Arimidex). I'm now just going into my 6th week of arimidex (now being called air idea by iPad) and am not aware of any SEs as yet. Lucky me.

Pixie myxi bunny, what can we say except so sorry to hear your probs continue. I really really feel for you. You must try and slow down a bit and give yourself some of that gentle time you are always telling others to have, but it just isn't in your psyche is it. I'm sorry you are having to keep contacting the Hilton, especially as I know I am one of the bunnies who changed things and gave you more work. Sorry! How exciting to be doing some work with Wilkins and sons. I am a great fan of their products, especially their marmalade. Hope you do get some to take home for you and OH.

Libby, hope you manage to have a good discussion with your onc about your herceptin trial and get a satisfactory outcome. Don't forget you can always opt out of any clinical trial. It is your right to do so. I have started my clinical trial - REACT, taking the NSAID celecoxib every day for two years, like Gaynor. So far so good. No probs. just take 2 tabs a day, at the same time. Just hope I haven't got the placebo!

Must get up and do something now. I'm still in bed! lazy so and so! I've got beds to make up and things - got our oldest son, dil and two grandsons coming tomorrow, overnight. can't wait for my 'cuggles' with my two lovely little boys.

all those buns that I haven't mentioned, I'm sending love and good vibes to all of you too. Have a fabulous weekend everyone, SEs permitting ... Chemo is now but a receding memory!

love, margiexxx

sara12
Member

Re: Starting chemo in April 2012

Many thanks to everyone for the birthday wishes - I had a very nice day. Received some beautiful flowers and went for lunch at a pub overlooking the Bristol Channel on a nice sunny day. Something relaxing being by water, even if it's somewhat muddy...!

Pixie, congratulations on your new jammy contract - but quite honestly, if what you described in your post is you taking things easier, all I can say is that I'm positively comatose by comparison!

Wendy, sorry to hear you're having so much trouble with your feet still - what a nuisance - hope you managed the drive to rads and back OK.

Off out to lunch again today for another belated birthday celebration. Have a good day everyone.

Sara x

pesteringpixie
Member

Re: Starting chemo in April 2012

Evening bunnies

Well, no other way to put it, I am well and truly myxi again...... most of it my own fault as I never blooming stop, sort of a deep inner refusal to give in to it all. So back to my usual patterns of over-loading on all fronts until I physically drop.
Not going into great detail, suffice to say the portacath mess is in there big time and I am now seeing the physiotherapist weekly to try to sort nerve damage in my shoulder but it looks like surgery is on the new year cards 😞

Bunyfeste... so looking forward to it all and doing lots of preparations but oh goodness, the numbers of alterations I keep having to make to my contract with the Hilton - 6 so far as people chop and change and each time i have to ring up, they amend the contract send it to me to sign, amend the credit card authorisation either up or down dependent on what the change is.... talk about rabbits hopping about...

Had a busy few days at work and just got a smashing new client - Wilkin & Sons - they of the marmalade and jam empire. They are based in Tiptree, about 10 miles from me and i shall be taking their middle managers through a leadership and management qualification over the next 18 months. Hoping to get lots of samples of jam to bring home - yummy 🙂

Tomorrow i am home all day and shall be making my Xmas pudding and Xmas cakes - earlier this year I didn't think I would get to this point so am really looking forward to doing that. Ipod on docking station and kitchen smelling of all those wonderful aromas of xmas.... mmmmmm.

My surgery only gives me letrozole on a monthly basis. I loathe the blooming stuff, feels like I have arthritis in every joint and it is compounded by the herceptin which is also bad on the joints. Am like the tin man in the wizard of Oz when he gets rained on.

3 weks from now I shall be in New England and not sure how much walking I shall manage - full of admiration for amberrose getting up snowdon. I can't get up our blooming driveway.

Righ, off into bath to try to stop me legs from singing...

much love

Pixie xx

pesteringpixie
Member

Re: Starting chemo in April 2012

oops.... happy belly button day sara!!! xxx

Sameelee3
Member

Re: Starting chemo in April 2012

Many Happy Returns, Sara! Hope you had a lovley day.
Lee
x

libby12
Member

Re: Starting chemo in April 2012

Happy birthday Sara, have a good onexxxx

pepihorse
Member

Re: Starting chemo in April 2012

Hi, I am in the same boat or warren as you Margietee, the feet....... Palmer/Plantar syndrome, I am left with that too, and you are right, its very painful, red/sore and hot soles of feet, and hurts to walk on them for long.
Ive been using Udderley smooth with urea on them morning and night, which has helped with the peeling, it was mainly hard skin that peeled off, but I am left with really soft smooth soles of feet, but boy are they sore ! I am also taking vitamin B6, which I got the information off the internet, supposed to help with this syndrome. (hasnt helped yet, but only been a couple of weeks since starting this B6 vitamin) so trying everything I can !
My dr. has put me on a pill called LYRECA to help, and they have helped with the hip pain I was getting, that seems to have gone now (only in the last couple of days, but heres hoping it doesnt come back) but if only this foot soreness would go, as you say its like walking on stones, they get so hot at night i have to keep them outside the duvet to cool them down. and during the day, I have to stand on the cold kitchen tiles to get a bit of relief from the burning feeling.
If you find any cure for this Margie, do let me know, and I will you if I do. Im so fed up with this, I really wanted to come to Bunnyfest, but there is no way I can face the long journey feeling like this, especially driving that far ! and even if I went by train I would need to catch 3 trains, my feet would have probably liquidated by then !!
Shame really as would loved to have met you all, and need cheering up a bit !
Hope you had a good birthday Sara !
Got to go for shower now, rads number 11 today ! going to attempt the 1 hour drive each way myself today, as run out of neighbours offers of lifts! hope feet will last out ! will be a challenge!
Have a nice day everyone......
Wendy x

Guest user
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Re: Starting chemo in April 2012

Happy Birthday Sara - have a lovely Day.

Big Hug & Kisses

Hilary xxx
southpool
Member

Re: Starting chemo in April 2012

Hi Bunnies

Just a quickie to wish Sara a Happy Birthday for tomorrow.

I am also planning on coming to Bunnyfest by train so would be great to meet at station. Not sure of train times yet.

Still loving my holiday.
Love & virtual hugs
S x

libby12
Member

Re: Starting chemo in April 2012

Hi again just read Pixies message, it is Bunny themed, will have to re lookxxx

libby12
Member

Re: Starting chemo in April 2012

Hi all hope everyone is ok, about the pressi for bunny feast does it have to be bunny themed!! !Had a meeting today with the breast cancer nurse, she gave me the Moving forward file, which I will have a read of tonight , it looks good.Seeing Onc next week with my list of questions re the trial I am on,so hopefully he will be able to reasure me. Sorry its a quick one but off to a new yoga class. Check in later. Love Elainexx

sara12
Member

Re: Starting chemo in April 2012

Hi all, nice to see a bit more activity after quite a quiet period. However, it's probably good news, meaning that many of you are back at work or well enough to be out and about. Sorry to hear about all the continuing aches and pains and lympoedema. I'm not on any further drug treatment, but one of my feet gets quite sore if I've been standing/walking for a while. Margie, I don't remember being warned about possible foot problems with FEC either. Fingers are still sensitive due to nail problem... I keep a pot of nail glue with me now to cope with nail emergencies!

What a pain that some of your GPs are only giving 1 month prescriptions. They know you're on a 5 year course for heaven's sake - you're hardly going to stop taking them and throw them away. With my normal prescription drugs, they give me three months' worth at a time which cuts down on the visits to the surgery or calls to Boots.

Glad that some of you have some good hair growth, but I am pretty upset about mine. I thought that the chemo hair loss might give my alopecia chance to spread and unfortunately it seems to have done. I do have some regrowth - about 1/4" so far, but really only limited to the crown of my head. At the moment I can't envisage ever being able to go out with my natural hair again, which is really depressing. I'm trying to convince myself that this is trivial (as many of my friends are telling me) but it doesn't feel trivial to me at the moment.

I seem to be feeling pretty restless. I keep wanting to do things and then realise I don't quite have all my energy back yet to be entirely back to normal. Still having afternoon naps.

I think I may travel to bunnyfeste by train as well. According to the hotel website you can call for a courtesy bus from Birmingham International, which is only 10 mins away. Perhaps we can co-ordinate calling for it? Or am happy to share taxi if preferred. If I go by train I should get there around 11:20am I think. Perhaps we can check plans nearer the time.

Lee - there's quite as lot of bunny pressies on line if you Google search on 'bunny(or rabbit) themed gifts - nothing fantastic, but it's just a bit of fun, isn't it?

Anyway, I need to brave the showery weather again to put a birthday card in the post. My cousin and I share a birth date (tomorrow) but 4 years apart - so I have no excuse for forgetting, do I?

Sara x

Sameelee3
Member

Re: Starting chemo in April 2012

Hi there everyone,
Sitting here with my only shot of good coffee for the day, but enjoying it loads. Just thinking bout those awful days of chemo when everything tasted horrible. Good riddance to that time.
Sorry I've been away for a while; I just caught up with posts and there is definitely a common theme of nasty aches and pains now. I' m on my fourth week on Arimidex and the SEs have hit me too. My feet are so so sensitive. Went for a walk into town yesterday in my comfy Ecco shoes and felt fine, but when I got home I could hardly stand up!My fingers are very stiff and sore, and i feel a bit like i have been in a fight. I am hoping that once my body gets used to the drugs the SEs will lessen, cos the thought of five years like this is a bit depRessing.
I was shopping in the hope of finding a bunny fest prezzie, but not much luck i'm afraid. Loads of Halloween gifts, but not a lot of bunny inspiration to be had.
Sarah, before I forget, I am also planning to go up by train, so am happy to share a taxi. I will check the train times and we can message before the day. Very Sorry that some of you won't be able to make it.
Elaine, hope you get some answers about the trial; you need to do what is right for you, but they need to be totally honest with you about the risks.
Southpool, enjoy the rest of yourholiday; sounds fabulously relaxing. Welcome back Tracy. Sympathies and supportive thoughts to all those with lymphoedema. Margietee, was very interested in your comments about the plantar syndrome. YoU are right- more information should be givenearlier if it's a real risk after FEC. Pixie, pointless to tell you to slow down, but ..... Slow down!!!! Just a bit?
Admiring all of you who are back awork now. I was beginning to feel a bit of a fraud, but no longer. The most recent SEs have made me realise that I'm not there yet. Have an aromatherapy secession this afternoon, So am looking forward to it as I respond very well to nice smells! How is everyone's hair doing? Mine is taking its time, but is dark grey and I am getting used to it now. Want to be brave enough to keep it natural, ideally! we'll see.
Anyway, buns, must go and do something. Coffee long gone, and jobs call. Be back soon, love to all, will be in the Campo Spa later if any of you fancy a stint in the sauna.
Lee
X

margietee
Member

Re: Starting chemo in April 2012

Hi bunnies

Where to start? The trouble with only posting once a week or so is that there always seems to be so much to say. I would post more often but - my usual moan - that I wish I could post direct from my phone and didn't have to get the laptop out every time (or steal OH's iPad). Wish BCC would sort out this particular glitch in the system. Ah well ..... The other glitch I'm having at the moment is that the forum is back to sending me two emails every time there is a post, one informing me there's been a post and the other giving me the full message. I don't think this is ever going to be properly sorted out.

Anyway, on with what is bound to be a long posting ....

First, Tracy so pleased to see you back.

Next, Gaynor, my GP surgery only prescribes one month at a time too. When questioned, they say it is down to guidelines to reduce wastage. Don't know if these are national or local guidelines, but they say if they prescribe 3 months and then the doc decides to change the scrip half way through then half the drugs on the original scrip are wasted. Crazy cos that certainly doesn't apply to our hormone treatments which aren'tgoing to change but it's a case of one rule for all. At my surgery you actually have to place an new order for the drugs EVERY SINGLE month. They wont do automatic repeat prescriptions. Luckily though my sainsbury pharmacy have a service whereby they order the drugs for me and I just have to go to the store to collect them every month. Much easier. Perhaps you could investigate that in your area.

Well done all those bunnies who are managing to go out walking, also well done those who are back working. I'm so pleased I'm no longer working, but wish I was more up to walking.

Mary, great news about your MRI. Little chick and Christine, I'm really sorry about the lymphoedema. Yet something else to put up with. I saw my chemo onc last week (registrar actually) who said he thought I had a very slight bit of it, but since then I have-discussed it withboth the rads onc who I saw this morning and with the rads info person at my hospital and both say they don't think I have. Fingers and everything crossed.

I cringed when I read about nails snapping in two across the width. Sounds horrendously painful and I really feel for anyone who is going through this. Isn't it weird how the chemo a) affects us all in different ways and b) still keeps on coming with side effects for so many weeks after the last infusion. I am 8 weeks on now and my feet are still a nightmare. The chemo onc looked at them last week and confirmed my self diagnosis of palmar plantar syndrome, aka hand and foot. I've no peeling, but feel I'm walking on stones and glass all the time. I've got corn plasters on the tips of some toes to buffer them. Trouble is, because everyone is different they can't say how long it will go on for. I googled (oops) and see that on a lot of American websites they give advice on ways to minimise risk of this syndrome - apparently the damage is done in the first week after each dose of the F part of FEC. One bit of advice is to avoid aerobic exercise, treadmills and the like which I was still able to do a bit of in the early FEC days of chemo. Also no hot baths, but resting feet when poss, relaxing with feet up when poss......wish I'd known these bits of advice when we were first starting out on chemo.

Southpool, so pleased you are having such a fab holiday. Your villa and its location sound wonderful. Pixie, I knew I could rely on you to come up with a description of what your tattoos are, that they are not just little black or grey dots! You sound extremely busy. You put me to shame! Mary, I think it was you that recommended the BCC moving on pack .... I ordered one and now I also recommend it. Everyone else, thinking of you and sorry if I've missed saying something I meant to say.

And finally, Hilary. I still send thanks to you daily when I am lying in my hammock having my rads,imagining myself on the beach in the spa .... But can you tell those naughty, naughty punkawallahs to stop fiddling with my left boob while I doze and definitely to stop drawing on it every day!!!! I pass the half way point of my rads tomorrow .... It will be 13 down, 12 to go ....

Lots of love to all bunnies. Back soon. Margggggiexxxxx

Guest user
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Re: Starting chemo in April 2012

Hi everyone, great to see so many faces again. I went to see the gp for my tamoxifen scrip - had to as didn't get any from the onc, just a letter to give to gp! Anyway I have 3 months of those on repeat so suggest you all ask about that.
Southpool, my lymphodema is very mild but glad its caught early. My upper left arm measures 1 - 2 cm larger in diameter than right one all the way from shoulder to elbow, but lower arm and hand ok. Should be smaller since I'm right handed. Main symptoms I noticed were heaviness and tightness in upper arm, but probablywouldn't havebothered if it hadn't been for the cording so I'm lucky to have it picked up. Apparently cording means you are at higher risk. If in doubt, get it checked, it's better to get it early. Other thing I noticed was that my fingers on left hand have all gone up one ring size, but it's not enough to be noticeable to anyone else.
southpool
Member

Re: Starting chemo in April 2012

Hi just quickly popping in to let Gaynor know I have also had a repeat prescription for my hormone tablets for 30days. Can't see why they can't at least give us 3 months, do they think we love hot flushes so much we are going to overdose! I am so looking forward to my monthly conversation with doctors receptionist about my prescription or maybe not.

S x

libby12
Member

Re: Starting chemo in April 2012

Hi all, hope everyone is ok, hugs to all that are suffering SEs. Well I had my fourth Herceptin today, and now I am worrying as I have just read the results of the Phare trial that was conducted in France, re 6 months Herceptin V 12 months. I am on the Persephone Trial, Herceptin for 6 months, the results of the Phare trial say that they failed to show that treatment for six months was effective as twelve months for treating early breast cancer. Not sure what to do now,and its stressing me out, I know Pixie is having Herceptin , is anyone else. Anyhow will make another appointment I think to discuss with onc, just worried that I am doing the right thing. Sorry to sound so depressing. . Any help on this would be great. Love to all Elaine. By the way Tracy great to hear from you glad your ok xxxx

ambarose
Member

Re: Starting chemo in April 2012

Hi Bunnies,
So sorry to hear about your lymphoedema Christine- it is the thing I dread and like Southpool, I too have peculiar sensation down my arm from shoulder to near elbow in bingo wings area. It gets a bit better if I stretch it out but its always there. I have done a bit of swimming in the last few days as will not be allowed to once reads start unless apparently its in the sea. So who lives near the coast and could you fancy a November chilly dip in the ocean. I feel a visit to campos spa coming on as it will be a blissful warm sea with warm sunshine to help.
Is anyone else going to Bunnyfste by train?. I thought I would and then get a taxi from the station so if there is anyone else perhaps we could share taxi. Let me know.
I haven't yet got my prescription from GP as still on 1st box of Tamoxifen from onc. I assume it will be month by month -at least we have free prescriptions.
Hope evryone elses sore feet, legs and other body parts are calming down.
Lots of love
Sarah

GMT
Volunteer
Volunteer

Re: Starting chemo in April 2012

Hi everyone,
Can anyone help? I was given my first month of Letrozole from onc at the hosp and was told to get further tablets from GP. I asked at surgery if I needed to see a doc or could I get them on repeat prescription. Answer was yes to repeat prescription so put in request. I went to fetch today and have only been given a months supply.is this normal? Will I have to do this every month? Just wondered what anyone else has had to do re hormone treatment.
Joints still aching and radiated boob still spotty. Radiographer did suggest hydrocortisone cream if didn't clear up, a week since last rads tomorrow so may give it a whirl.
Hope everyone ok apart from the aches and pains which seem to have got us all!
Gaynor xx

pesteringpixie
Member

Re: Starting chemo in April 2012

Well good morning bunnies

Back from a very wet weekon the isle of wight and don't feelas rested as i had hoped.

Had a lovely half hour catching up on everyones posts and will write a longer post later but for now i have washing to do, dogs to walk, a pile of assignments to mark, phone calls. To the hilton to make bunnyfeste changes, happy bags to post,groceries to order ..... and I ache like crazy, feels like i have awful arthritis. Teaching tomorrow morning then 2.30physio apt. Envious of bunnies who get reflexology, rehab programmes etc.nothing available here. Thinking of engaging a personal pilates. Instructor to try and get me moving better....

My tatoo os a fluffy bunnies tail.

Much love

Pixie xx

pepihorse
Member

Re: Starting chemo in April 2012

Hi everyone, sorry to hear about your lymphodema Christine, sounds horrid, yet another blinking after effect from all this surgery and chemo, and to think before BC was discovered in us we all felt well, and now look at us ! some of us are complete wrecks !
I managed an hours walk with the dog yesterday, managed a hill too, but had to stop every few minutes as thighs hurt! my muscles have gone soggy! feet were bright red when I got back and very hot, but got to try and get back to some normality ! at least the thigh pain is something that I know is just wasted muscle as not used them for a long while, been avoiding hills!! so unfit! and feet complaining this morning ! but strangely thighs are ok!!! if only my feet would stop feeling like theve been boiled !! I could get on better trying to get fit!
Off to take my pills now, have shower and get ready for rads, again.................... groan......... I must say its nice having Saturday and Sunday off going all that way to hospital! but here I go again ! such a long boring drive there and back !
have a nice day ladies, shame its pouring with rain here in East Anglia. hope its nicer where you are !
Wendy x

southpool
Member

Re: Starting chemo in April 2012

Hi Bunnies

Welcome back Teabelly you were missed. Little chick that is rubbish getting lymphodema, did you have any symptoms or was your arm just swollen? My arm is still numb down my bingo wing & feels heavy most of the time but isn't swollen. I am assuming that is the way it's going to be from now on in, but am very nervous about lymphodema.

We are into our second week now & I am even more chilled out. We have ventured into the nearby harbour town for supplies & I have purchased part of my bunnyfest present. Due to the wonders of the Internet, I am chilling on the terrace watching the sunset whilst listening to my fav radio show of the week on BBC radio 6. Biggest decision to make today is which of 2 restaurants to stroll to for tea & wether to have fish or calamari.

Love & virtual hugs to all in the very quiet warren.
Sunshine S x

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Re: Starting chemo in April 2012

Hi Hilary.
My lymphoedema has been especially bad lately and I'm now having to wear a combined sleeve and glove. Bit of a pest as it gets really warm. And when you want to wash your hands . . . . . But without it my arm gets really tight and swollen and becomes painful. So I suppose it works up to a point.

Hope everyone has a good weekend.
Christine xxx
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Re: Starting chemo in April 2012

Wendy, I'm not going either so we can meet up here and hold hands together that day lol! Hope your feet get better soon. X
pepihorse
Member

Re: Starting chemo in April 2012

Hi ladies, just popped in to see whats happening, quiet here at present, I now have a large pink oblong on my chest, from rads, had 7 so far and 8 more to go. Not sore yet but its pretty pink, so we will see after the 8 more !
Still aching all over,it does feel a bit better if I keep going, Littlechick, but the sore feet hinders it a bit as the more walking I do the redder and sorer feet get ! its a viscous cycle ! Popping co-codomols to get around better. Lyreca pills havent cured my neuopathy in feet yet and its 7 days since started them, but still hoping......
Hope all bunnies are feeling a bit better each day, and you all have a great time at Bunnyfest, I wanted to come too but I dont think Im up to the 3 1/2 hour drive yet or managing to get 3 trains, I will never get on the right ones ! so looks like I will not get to meet you lovely ladies after all, unless some miracle happens before then !
Have a great Sunday everyone,
Wendy xx

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Re: Starting chemo in April 2012

Teabelly welcome back - we have been calling for you for a while. Glad you are back on the road to recovery.

Hugs & kisses

Hilary xxx
teabelly
Member

Re: Starting chemo in April 2012

Hi Everyone im back i couldnt get on for a while then i had a bit of a melt down all treatment done now im feelingalot better sorry not been around hope i can hop back in the warren and catch up with everyone i need to try and catch up
i hope everyone doing well
Lots of love
Tracy xxxxxx

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Re: Starting chemo in April 2012

Sorry, didn't mean to ignore the last few posts - only saw them after I posted. The iPad keeps doing that for some reason. Anyway, hello!
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Re: Starting chemo in April 2012

Wendy, still have plenty of pain in my legs, but I find the stiffness eases a bit after I've been walking (hobbling!) for alittle while. We'll get there eventually, but I'm guessing it will take a few months.

Mary, so pleased to hear your MRIscan is good. The staff really don't understand what we've been through or they wouldn't inflict these stresses on us. Sorry to hear about your nails, that soundsreally painful. Have a good holiday!

Been to physio appointment and he says anything else they could do for the cording would hurt me more than it would help me. He measured my arms and Unfortunately, I also have lymphodema, just mild so far. Will have to wear a compression sleeve & glove. :-(. There's always something! So now I have no hair, one breast and a horrid sleeve on my arm. Very sexy not. Oh well, am still alive. Hubby says I am just the same inside and he loves me. Isn't he a sweetie?

Hope everyone else is doing ok and have a great weekend everyone. Xs
southpool
Member

Re: Starting chemo in April 2012

Hi Bunnies

Big M I was nervous about coming on ho,iday as well but it is the best thing I have done. The weather in tge eastern med is fab & it will be a great way to celebrate your MRI results.

My nails look like they are ready to split across the middle, I am coating them in nail envy and oiling them twice a day but my thumbnail is hanging in by a thread and several others look dodgy.

We are having the most fabulous holiday, this villa is truly like a real life campo spa. OH is a real muso and has created fabulous playlists on his I pod fir us to listen to on the terrace. Today I was floating in the sea as the choral music from the iPod merged with the call to pray drifting down from the hillside. It really was one of those moments you never forget and this holiday already has lots of those moments.

At the moment I am sitting on the terrace under the stars listening to the waves lapping on the shore combined with a gentle ambient playlist from OH, while the kittens fight with our crocs! For now bc seems like a distant memory.

Love & virtual hugs to you all.
Sunshine S x

sara12
Member

Re: Starting chemo in April 2012

Evening all.

Mary, that was good news about your MRI results. I can sympathise with the delay to get your results. When I went to see the surgeon for the first time for the biopsy results, I had been waiting 10 days in a state of high anxiety, and when I got there she thought I was a new referral and had no results to hand. She did dig them out 20 mins later, but it does nothing for your nerves does it?

My nails are like yours - splitting across half way down - and it is painful. When the nail comes off it all looks unsightly too. I bought some false nails today, to see if I can protect my own while they are so fragile, and to cover up the manky ones.

Wendy, I'm glad Alfie is getting better. Sorry to hear you are still in pain. My swollen legs/feet went down after 6 weeks or so from the last Tax - so I hope you'll be getting back to normal soon. My rads are going to be in the evenings too - bit of a nuisance now the nights are drawing in.

Rachel, we haven't heard from you for a while. Hope you've been able to come to terms with the redundancy and hope this means the opportunity for new beginnings for you.

Hilary, as always found your Spa descriptions very soothing!

Sarabee, hope your boss was OK about the extra time off work.

Have a good evening.

Sara x

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Re: Starting chemo in April 2012

Hi all
I went to the hospital for my MRI scan on Monday (issue was dodgy cells in the left breast identified in March, but they decided to leave them because the rampant cancer in the right side had to take priority. Had follow-up MRI for the left side 10 days before Monday appt). Breast surgeon pleased to see me, said I looked well (aaargggggggggggghhh!) and how quickly the lasy 6 months had gone (glad they had for him, but then he didn't have breast cancer). Then he said "when are you having your MRI?" I nearly had a seizure. I told him I was there to get the results of the MRI from him, to which he answered "there's nothing on the system". So I had been climbing the walls for the last 10 days for nothing. Anyway, the nurse went off somewhere and came back with a hard copy of the results which the doc hurriedly read, and the conclusion was that the March MRI was probably over-sensitive and there is no need for further surgery. I have a mammogram booked for February. So where I should have felt really excited about the results, the hiccup took away some of the pleasure.

So now I know, we have booked a holiday and are off to Cyprus (Paphos) on Saturday. Looking forward to it, but as it's such a long time since I went anywhere, I am nervous and anxious about it. You can't please some people!! I will report back on hammock quality, Hilary.

Will be in touch again when we get back, 7th October. In the meantime good luck to everyone and hope your nails are getting better. Mine are splitting one by one half way across the length - painful.

Mary xxxxxx
pepihorse
Member

Re: Starting chemo in April 2012

Hi Campo and Libby, thanks for the info, I have a small private pension, which I paid into for only about 7 years, but they still send me the details, so may look into this, if I dont manage to get back to work soon. I do have some savings that Ive put away when I downsized my house, so am starting to use that, so wouldnt be able to claim council tax, until it goes down a bit more, was hoping to use that to take an earlier retirement, but am needing it now, so will look into benefits when thats gone down more.
Campo, rottie (Alfie) is fine now with the pills hes on, cant believe the difference ! Im trying to stop him jumping up at the TV (its on the wall and its 42") and everytime he sees a dog or small animal on it he leaps ups at it barking, which isnt doing his leg any good, I have to keep switching the channels over! Hes always done it and its infuriating, but I dont know how to stop him doing it! Sometimes if Im watching a film and if anyone is fighting on it or has an animal in it, I have to put him outside the TV room! its strange really if he meets a dog on his walk he loves them, but not the TV ones !
Well, pain killers have kicked in a bit now, (my ones that is, not the dogs!) so off to take my shower and get dressed!
Have a nice day everyone, rads again tonight (7.06pm) just when I feel like flopping on sofa! dont like these late ones, would have preferred mornings, got a morning on tomorrow though, thinking about putting up a tent at hospital as got to be back for rads again tomorrow at 9 am! at least I wouldnt have the hour long journey ! but my friends have been very good so far and have taken me each day/evening, so thats lovely as driving still hurts my hips/knees/ankles/feet !!! When will that go???????????????
Wendy xx

libby12
Member

Re: Starting chemo in April 2012

Hi all ,Hilary your posts always have a calming effect on me and cheer me up, thank you, really looking forward to meeting you ( and everyone else of course). Well have been feeling a bit odd the last few days, ok in the morning then in the afternoon keep feeling cold and tired, as if I am getting flu or something. Had a word with nurse and she she that this could be one of the side effects of Herceptin, apparently it can give you flu like symptoms, great!!!. Seeing onc next week so i will discuss it with him. Heart scan in the morning at 8am so hoping that everything is ok. My team leader from work came to see me yesterday , she was really nice and told me to come back when I am ready and not to stress about anything. It really helps when you know your job is ok, I have been really lucky having such good back up from them, unlike Sara, she has been treated terribly. Back to boob problems I am also getting pains ,come and go all day, the nurse said it was something to do with scar tissue, carnt remember as brain still not too good, in fact its terrible, I still have to write everything that I have to do, there are lists everywere. Anyway I have ordered my ears ready for the big day, just the present to buy. Pop back tomorrow love to all Elainexxxx

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Re: Starting chemo in April 2012

Hi Bunnies

So many posts to follow so will do a roll call and I also need to talk to you about the Punkawallahs! Hmph!

First those without eyelashes. Have a look at Revitalash. My friend whose sister had bc a few years ago swears by this but check it out for yourselves. The story goes it was invented by a chemist/scientist when his wife experienced bc and lost her eyelashes so he developed the serum to help her.

Thanks to Pixie & Sara12 on the info of Christchurch within that area – have been doing a lot research on the internet. Then the weather hit the UK so took note of the areas under flood warnings! Hoping none of the bunnies are being flooded out of their part of the warren.

Southpool so glad you are enjoying your real Campo spa – sounds wonderful and just exactly what is required.

Chrisp1e – Wonderful here that you are also in the NED club especially as this is your 2nd time round.

Good luck to those who are under the rads smiley machine. Boobs area does end up red & the skin does peel off a bit like after sun tan burning. Plus it can feel tender. Also after rads is finished you may experience pains within the boob area, not too bad but definitely coming from within the boob area and according to my Onc may go on for a year!

Gaget Gal – good luck with the op and hope you get everthing sorted & I see the other bunnies have found some black bras for you.

Sarabee12 - Boss checked in for special training programme at Campo Spa – As your Boss is a bloke shall really lay a lot of weights on him and some extra electric charges. So sorry to hear that you have got another 8 rads to go. If your boss is not amused at you not going back to work I shall also add the diarrhea to his course!, as we can do anything at the Spa.

Vann – Congrats on the Dog competition. Hoping your swollen joints etc are a lot easier. Healing paws coming your way.

Pepihorse – Hoping your Rotti is feeling a lot more comfortable. We are all the same arn’t we when in pain we are bad tempered. Went out for lunch with OH and his parents today, to a very nice restaurant overlooking a beautiful bay not far from our house, lovely setting and very busy on the terrace. Had our lovely Amber with us – Amber is very excited at being with us and going to lunch – then she spots the resident cats and nearly up ends me down an embankment trying to say hello to cats. At least I provided some light entertainment for the rest of the patrons.

Ambarose – Congrats on being at work full time again. Hope the bunny ears were a success.

Libby12 – Hope the little one is better now and don’t worry about being scared without the medical staff – we have come to rely on our medical teams and trust them so understandable you feel a bit lost.

Littlechick – you sound like you were very brave getting the cording broken. Well done bunny.

Samelee3 - I am bring my OH with me as we have to fly in plus we are going to visit my OHs son in Bristol. I am so looking forward to meeting you and all the other bunnies.

GMT – hoping your pains are easing a bit. Can recognise the wobbly emotional bit with rads ditto for me also – but are you now finished? If you have congrats!.

Margietee – nice to see you back in the Warren. Re tattoos must admit to seeing them only as dots but now that you think of it I could think of them as ballons or something a bit more exotic like Blow Fish – yes mine are definitely Blow Fish.

Big M – Well done at giving a training course and getting out and about. I am with you just flopping. Have found that my stamina lasts for so long and then as it did last Saturday I am suddenly flat again. I think we have all learned to listen to our bodies and when it says rest – you rest. My sleeping pattern is restless but on Monday night I slept more or less 10 hours and could have slept more if the dog did not need walking!

Back to the Spa – Roll Call – Pestering Pixie, Chrisp1e, Little Chick, Southpost, Big M, Vanns, Sara12, Libb12, Samelee3, TEABELLY, Namar82, Sarabee2012, Pepihorse, Ambarose, RACHEL1P, Margietee, GMT, KITTY QUEEN, HYZENTHLAY, Gadget Gal, SPACEHOPPER. Those in capitals you have been missing for a while please can we have a wiggle of your ears please.

Okay The Punkawallahs – now I know some of you bunnies are feeling a lot better and I am very very pleased for that however please, please can you be gentle on the Punkawallahs – I have so many of them coming to work exhausted and well it is just not on Bunnies! Remember they still have to look after the bunnies that are not so well! Hmph!!!!!!!!!!!!

So the banana boat is now in full swing as are the jet skies, the pedalos, paragliding behind the speedboat, water skiing and horse riding. Once you have exhausted yourself the team are ready to massage your aches & pains away. The weather is now a lot more pleasant and the breeze from the sea is a lot stronger but still warm. The waves are also noisier & larger but wonderful to watch and listen too in the hammocks. The massage team are still busy but not as busy. The hairdressing team are getting a lot of requests & questions but early days yet. Saw my favourite hairdresser Mary this morning – now everyone around me has been saying how well my hair is doing and how it is darker apart from the side bits which are showing white bits. I have been saying to OH that the top bit is showing white but he says “no it is just the light.” See Mary today and her first words are “we need to get the Copper Colour out Hilary – how soon can we colour”. She is a gem – tells me the truth!

For those Bunnies still feeling pants I have found a lovely, peaceful quiet area in the Spa for you so you are not disturbed.

Enjoy my Darling Bunnies and see you soon.

Hugs & Kisses to All

Hilary xxxxxxxxxxxxxx
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Re: Starting chemo in April 2012

Hi southpool,
M&s was top of my list after Nicola Jane, the mastectomy shop. I saw the t-shirt bra, the type i'd normally pick, thing is, it was in a pack of 2 the other one being white. I was cheeky enough to ask if theyd sell me 2 black ones (and expalined why) but no dice 😉

The royce ones fit me really poorly. I tried on a few that the hospital fitter had a available.

There are some opitions online but i wanted to avoid the ordering, waiting and sending things back if they're no good. The Amoena and Abeceita brands look promising though 🙂

I think what really gets to me is that Ive have had to put up with so many limitations over the last few months, I like to make some choices when i can.


Congratulations to all of you who are NED so far. im really pleased for you all.
libby12
Member

Re: Starting chemo in April 2012

Hi Pepihorse, you can claim for council tax payments if you are on ssp , there is a form to fill in for this, call your local council office and they will sort it out for you. You are also entitled to disability living allowance in some cases. If you ask the Mcmillan advice centre they will help you fill in the form, if you have no other income.. Sorry such a quick one off to pick up daughter. Hope everyone is ok xxxx Elaine

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Re: Starting chemo in April 2012

Hi Pepihorse

Just been reading your post and wonder whether you have a private pension as well as your state pension. Might be worth looking at your retirememt terms & conditions etc. Southpool mentioned the fact if you let the pension people know about your bc which is considered a disability you can receive your pension without any deductions eg. I am taking my private pension at 55 which is next January but I have made an Application for early payment of a deferred pension on ill health grounds - still waiting for the result but it might be worth looking into.

Sorry to hear that you are so under the weather and you have got another 8 rads to do but hang in there bunny you will get through it.

Hugs & kisses

Hilary‏
pepihorse
Member

Re: Starting chemo in April 2012

Hi Sarabee, agree with you regarding rotties! I cannot believe the difference thos pills made since yesterday, hes bouncing about all over the place......... I want them!!! I want to be able to bounce all over the place too !!! Never mind, will have to stick with what Ive got I suppose....... and no bouncing for me!
Luckily my dog is insured so will have to pay the first £100 and hopefully when his treatment is finished will be able to claim back the rest, fingers crossed! Hes got a check up in 2 weeks time, so another bill then, so will claim after that one, I suppose, not sure how pet insurance works, as not had to claim before, have read policy, and have claim form, but thought it best to wait until he has had his check up. Thanks for the info on the charity though, must say Ive never heard of it.
I got my SSP through today, £257.55 plus a tax rebate of £72.60, total -£330.15 ! so that will cover the vet bill, savings will have to pay the council tax, electricity, and numerouos other direct debits for other bills ! car insurance just paid too !!! groan...... maybe I had better go back to work soon, dont want to though !
If the government hadnt changed all the retirement ages, I could have retired in 3 years (if I make it there!) now Ive got to wait till Im 67, another 10 years, I will never make that !!!! and all those years Ive been paying tax and national insurance, doesnt seem fair for the government to keep it if I dont make it ! I think they should let me have it now, just in case !!!!!! then I could retire !
Sorry to hear Sarabee that youve got to have another 8 sessions of rads, they havent said anything to me about extras either, hope I dont have to ! fed up already of the trip to hospital every day, and only having my 5th one later today ! Hope they do the trick !!
Have a good day everyone,
Wendy x

sarabee2012
Member

Re: Starting chemo in April 2012

Wendy - Rotties are lovely dogs but quite strong minded lol! Sounds like your boy was in a lot of pain but the tablets will really help. My mother was on Tramadol though and got hooked on it so had to be weaned off it like an addict!! Stick to the cocodamol!!
And if you need any help with the bills there's a charitcalled led Tailwaggers club Trust who offer grants to people who need help with vets bills. Used to be a trustee for them and they are very supportive!!
Went for my penultimate rads today only to be told they forgot to add my top up to my list so have another 8 sessions to go now. Means I won't be back at work now until November. Haven't told the boss yet not sure how he'll react!!!

hugs to all
Sarabee xxx

pepihorse
Member

Re: Starting chemo in April 2012

Well, 4 rads now done, another 11 to go. Got used to it now, so not embarrassing myself with the near panic attacks!!
So stupid of me, getting so worked up about it.
Feet still burning, red and painful, hips and legs still aching, but finding the Lyreka helping a bit, and co-codomol. If only the feet would go normal and I could wear normal shoes ! been wearing only spongy flip flops if I go out, and now its rainy, the only thing I can put on them fairly comfortably are sheepskin Ugg boots! but they do make them feel even hotter!!! so not going outdoors if I can help it!
Trouble all weekend with my dog, yelping and crying with lame front leg. He wouldnt let me touch it to investigate, and you dont argue with a rottweiler, so Monday no better, took him to vet, he wouldnt let them look at it either ! had to be sedated, still wouldnt let anyone near leg ! sent me home, had to use one of those awful strangling type dog catcher things before they could sedate him and even then decided it was best to anaethetise him completely before they could check out the lame leg ! My dog is usually the softest, soppiest thing, but its amazing how rottweilers change when they are in pain, really opened my eyes, and seeing all the bad press about them in the past, just thought they were like that because of the way they were brought up, but boy can they change from soft and soppy when they are in pain !!! He snapped at me and the vet, hes never done anything like it before, really shocked me. Anyway, collected him later in the day, really groggy dog, and apparently he has arthritis in front leg, hes not 7 years old yet, poor old boy, so hes now on numerous pills a day, anti-inflammatory and tramadol ! thought I wouldnt mind some of the tramadol ! I have already asked Drs for that as most people after chemo seem to be on that, but my drs dont prescribe it apparently, yet the vets do ! amazing ! Anyway £283 poorer, really needed that, now Im off work and on SSP !
So not only have I got to take my pills twice a day, got to get numerous pills into 60KG dog too !! hes also got to go on a diet,as hes put on weight lately due to shorter walks I suppose, so we will both be on a diet !!! I really dont need this at the moment !!
Well, its just me and the dog now at home as daughter gone back to work (in Spain but travels all over the place) so just got to get on with it!! Onwards and upwards I hope !!
Take care, sorry been rambling on, seems so quiet now, no ones here at home to talk to !!
Have a good day bunnies !
Wendy x

southpool
Member

Re: Starting chemo in April 2012

Hi GG just popping on to share my extensive experience of mx bra shopping!

M&S do at least 2 good black cotton mx bras. One has some White trim & the other is plain black with just some flowers on, the one with trim has knickers to match. They will be available on the M&S website if not in store just check post surgery bras. I also have a really nice one from Royce it is new out & is plain black with just a bit if lace at the bottom. Am a bit of an expert on mx bras as there isn't a massive choice of plain ones so have hunted high & low. Post surgery I wore the vest tops with bra inserts from M&S with my softie pinned inside, they are really comfortable & they do them in lots of colours. I am a c cup so found they gave enough support & wore them to work most days post surgery.

Hope that helps.
Sunshine S x

ambarose
Member

Re: Starting chemo in April 2012

Hi All,
So good to hear of Campo and Christine and anyone else who has finished rads and in NED Zone. I had Rads planning today and start on 10th October. It all seemed to be ok and I am grateful that the hospital is only 12 miles away so not too arduous.
I hope your holiday in Turkey gives you all the relaxation you deserve Southpool- it is so necessary I think, even a weekend away can be great just to try and think and do something different.
I have been working fulltime and more the past few weeks which has been ok-decided that I had no excuse really after Snowdon although mental effort is still more challenging I think than the physical stuff. Fuzzy grey/white hair beginning to show so will have to get used to that as have coloured hair for many years. perhaps I will look like Judi Dench!!..
Ears for bunnyfeste arrived today so going to have a practice this evening. (Am on my own tonight so no one will think there is a mad woman prancing round the house looking as if she should be in a nightclub serving cocktails!!.)

Love to all
Sarah

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Re: Starting chemo in April 2012

Thanks everyone for good wishes.

Today is actually the best I have felt in a long time. Was awake early and got up and organised myself as if I was going to work. Even did a work-based module and passed. So quite pleased with myself. And I haven't had to lie down for a sleep today. That's progress but tomorrow may tell on me as I'm looking after my grandsons all day. Will be good fun but I will probably be knackered afterwards.
Can't believe I'm goin back to work next Thursday. Where has all that time gone? Spent most of it in my bed I suppose.
Looking forward to GBBO tonight.
Regards to all.
Christine xx
sarabee2012
Member

Re: Starting chemo in April 2012

GG - saw loads of different colours and styles in M & S otherwise go to Asda and get a Brevia bra in black. They're like sleep bras but very comfortable!!

Congrats to all the NEDs I have my final appointment after my rads on Friday. I know all the bc was removed from my boob successfully but would be nice to know for sure.

The most pain I've had has been from my underarm and it still is. It's not cording but just a general tightness and numbness under the armpit. Am hoping it goes off but will check with the rads consultant.

That's all for now. Southpool have a lovely break!
sarabee xxx

sara12
Member

Re: Starting chemo in April 2012

Morning all.

Southpool - that sounds absolutely idyllic.... hope you continue to havr a wonderful relaxing time. The kittens sound fun too - they can't help making you smile, can they?

Elaine, I haven't got to the end of my treatment yet, but also feel that it might be like walking off a cliff - from lots of attention to nothing. I have ordered the 'Moving Forward' booklet that was recommended - I think that might help. Also in our area we're offered up to 6 free treatments such as reflexology, head massage etc. I ddn't make use of them during treatment so am going to make appointments for when I'm finished.... then I'll have some 'nice' attention to look forward to. Little Chick's fitness course sounds good too - is there anything similar available in your area?

Gadget-Gal, you sound very organised - I hope all goes well with your op. Sounds like a good idea to get your own bras adapted - I know what you mean about the choice/colour of mastectomy bras.

Christine, that's great news that you're now free of bc again - must be a particular relief to know that the treatment works effectively second time around. Under the circumstances it's not surprising that it's always on your mind.

I'm a bit concerned about my tattoos now. Having washed off all the pen marks from the planning session I can see a small dot on my left side, a surprisingly large and noticeable mark right in the middle of my cleavage - and the dot on the right side seems to have disappeared altogether. Ironic considering that the radiologist was training a student and explaining how to make sure the tattoo had worked properly before removing the pen marks! Hope it doesn't mean they have difficulty lining things up.

Talking about cording and soreness etc - I've been managing my post-op exercises OK - but right from the day of the op, most of the pain/discomfort has been deep in my armpit rather than in my boob, scars or shoulder - and it catches me unawares every so often with sharper pains. Was that other people's experience, and do you know what causes it?

Hope everyone's having a good day and gradually feeling better.

Sara x

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Re: Starting chemo in April 2012

hi,

another quickie: I'm still here! just been crazy busy *trying* to wind down from work and doing all sorts of things that I won't be able to manage after surgery like de-cluttering, unpacking more boxes since the building work in April. it's still painful on my back but my rationale is that I'll be resting by the end of the week whether I like it or not.

I have bought one bra. ONE!. as in, there was only one mastectomy bra available, in my size that I would wear out of choice in any stores I visited. It's all very well having lots of white and "flesh" toned bras. if you're dark-skinned they show under light clothes. I dont suppose the manufaturers thought of that....
all I want is a black t -shirt bra that'll afford me some support waaaah!
so, Im going to send my own ones to be altered for pockets later on. At least they're the ones I like and already fit 🙂
today, I have more errands to run after work. I will endeavour to post properly later.

GG
southpool
Member

Re: Starting chemo in April 2012

Morning Bunnies

Congratulations to Campo & Christine for being in the land of NED & may it continue for ever!

I am posting this morning from my own real life Campo spa. When we booked this holiday in January we thought we would need a couple of weeks chilling out after a busy holiday in Japan and a frantic few months at work. It turned out very differently but is the perfect recovery holiday.

I am writing this sat by the pool overlooking the sea, a fisherman is casting his line from our private swimming jetty about 6 steps away from our villa & the waves are lapping on the shore. The sun is shining & the fishing boats are chugging out of the tiny harbour. I am in paradise & am so lucky to be able to spend 2 weeks is such a perfect environment.

The villa is in a tiny fishing village, just 3 fish restaurants, a mini Market & a couple of villas. The food is fabulous fresh caught squid & fish and salads selected from the kitchen. I have eaten samphire every night so far it is truly fabulous. I have swum in the sea (my swim form is great), lay in the sun (slathered in factor 30) and finished my 1st trashy novel.it truly is campo spa in real life, there is even a hammock! Sadly no punkswallahs, but the villa owner has picked me pomegranates from the trees in his garden. Sara there is even a lovely family of kittens to entertain us, they have obviously been fed by previous villa residents & I immediately thought of you and how much you would love them.

Thinking of you all and am so looking forward to Bunnyfest (Lee there are 4 partners accompanying mainly people who have a long way to come).

Love & virtual hugs to all.
Sunshine Sx

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Re: Starting chemo in April 2012

Hi Everyone,
I'm also NED at present afetr my 3rd and then 6th Taxotere. Long may it continue although it's always on my mind.

Regards to all.

Christine xxx
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Re: Starting chemo in April 2012

Lee, I'm stiff too. I find it loosens a little as I move. Sorry to hear you only managed 5 mins too but glad toknow thisseems to be the norm for us!

Elaine, there's no getting away from it, it was painful but the pain doesn't last long. Easy enough to cope with after chemo! A lady on my course today told me she got some painkillers from the gp to take before her physio appointments, but I managed ok without anything and they are quick at it. They basically stretch the joint apart. Don't get too worked up, it's not as bad as it sounds. I had googled and had an idea what to expect so wasn't totally taken by surprise. The tai chi sounds like a great idea!