Starting chemo in April 2012

[libby12]

Hi everyone last rad today, YIPEE , I know it sounds strange but I feel a little lost, and a bit scared, For months I have had doctors nurses etc looking out for me, and now it suddenly comes to a big stop, I know I have the Herceptin for 6 months but, no more daily appointments, or chemo sessions, am I mad saying this, perhaps the chemo has really fogged my brain. Anyhow seeing someone on the 23rd Oct about my cording, Little Chick how did they break one, it sounds terrible was it painful!! Also the cancer centre at Aintree is starting a Tai Chi class in October so I have put my name down, I have always wanted to do this but never got round to it. Anyhow going to bed as my daughter was sick all last night so was sitting up with her and never got a winks sleep. Love to all Elainexx

[sara12]

Lee - pretty sure NED = No Evidence of Disease.

[Sameelee3]

Little Chick,you are not alone- we have a water- rower at home and I thought that it might be time to get back on it again. I only managed five minutes. Pathetic, but good to know that this is normal for us!!! My feet are so stiff in the mornings it's ridiculous, but there seems to be no remedy to this one. Good to know you are feeling stronger Sara, and good luck with the final rads everyone who is on the last leg, so to speak.Thanks Pixie, for the message with all the arrangements for the 27th. Just out of interest how many of us are bringing partners? Have had an admin day today, catching up with emails and booking various things. Changed to Arimidex last night- no noticeable difference in SE"s yet! Is anyone else on this- how are you doing, if so?
Love to all suffering with rads soreness, etc.
Lee x
Seriously, can someone tell me what NED is, please. Am I being stupid? I am guessing it is obvious, but not to me with my chemo brain!!!!!
x

[Guest user]

Hi everyone. Was the first day of my rehab course today at the leisure centre. It's charity funded and we get three months free use of the gym, pool, etc. have been trying to convince oh to take out a membership and have a go too. Anyway, it was fun meeting the other ladies and i enjoyed it even though I couldn't do much. The exercise bikes have digital displays that are powered by dynamos and I couldn't pedal hard enough to bring the display up which was quite funny, but I'm proud that I managed to pedal albeit slowly for five minutes! It's a ten week course so hopefully may be able to walk by the end of it lol! Anyway, they said I can take part again in the Spring, so that will be good. It's great to be able to do this over the Winter, the weather here can be pretty tough this time of year.

One thing I've noticed is how much of the services here are charity funded. think I've told you that I make cards for a hobby. I've sorted out two boxes for a neighbour to sell at the Christmas fair for the hospice on her stall. When I'm feeling more like myself next year, I hope to do some more for other cancer charities. I wonder whether all the volunteering at the Olympics will encourage more voluntary work amongst people in general?

Too many posts to reply to everyone. Thanks for the info on cording, have seen the physio who was amazed by how much I could move my arm - all down to religiously doing the exercises every day, so it's nice to know that they were doing me good anyway! He managed to break one cord (ow!) and I'm going back again on Friday.

Chemo brain, muscle aches, 90 year old woman ses all still here, but I know things will improve with time. Good luck everyone. Congrats to Hilary on being our first NED - well done!

[sara12]

Hi all - hope everyone's aches and pains are subsiding. Having shaved my head, I can now feel some stubble - but worryingly only on the right side and back of my head - no signs of regrowth on the left hand side. Concerned because I already have alopecia at the front, and it looks as if it might have spread farther back on the left.... just have to wait and see I suppose, but I think I'll be wearing wigs for a long time yet.

Another nail snapped off half way down in the middle of the night - must have got tangled up in the bedclothes. Hurt enough to wake me up.... stuck it back on with nail glue this morning but, like my thumbnail, don't think that will work for long.

Had my rads planning today - all very straightforward. I'm lucky in that the onc centre is only 3 miles down the road, so I don't have the long journeys that some of you have. From what I saw today there's a lot of waiting around for the 5 min zapping though. Won't be starting until 16/10, so I guess I'll be one of tne last in the warren to finish - apart from Gadget-Gal possibly.

Lee - it's easy to get used to comfortable clothes isn't it? I used to do the suit/heels thing in my corporate days but changed my style when I went self-employed. Then changed it again on retirement. I only wear comfortable things now but I do try not to 'go beige' though! Your coffee cakes sound lovely - I really need to wean myself off carbs now.... they were the things that still tasted OK during chemo but I have no excuse now.

I'm slowly getting stronger - went for a short walk in the woods on Saturday as the weather was glorious, and sat in the sun watching some ducks on a pool - so lovely to be out of the city and to see some countryside.

Sun has just come out again after 36 hours of downpours, thank goodness - no sign of flooding on my side of the city though.

Sara x

[GMT]

At my planning meeting the radiographer who was doing the tattoos asked if I wanted butterflies, dolphins or perhaps just a dot! So I asked for butterflies and therefore have always seen my dots as butterflies too Margie. Ive never really wanted a tattoo but I have thought about having a v small butterfly when all this is done or perhaps it should be a bunny?
2 more rads to go, felt really tired this weekend and a bit wobbly emotionally. Boob not too sore but v spotty! Perhaps its all the aqueous cream. And my fingers, feet and knees also feel like they belong to a 90 year old woman.
Wonderful news Campo. I hope you are taking full advantage of your glorious spa.
Hope everyones aches and pains are manageable, though this cold, wet, windy weather is not going to help.
Love to all,
Gaynor xx

[sarabee2012]

Ooh a couple of things I forgot!

Well done Vanns on the gun dog comp!

Someone mentioned a rads trial where they got zapped for a week and then had a top up. I'm on the same but got 15 days (no time off for good behaviour lol!) and no top up. But has gone quickly and am now looking forward to getting my lie in back lol!

Finally have taken to drinking milk by the gallon for the past few weeks. Seems to be the one thing that tastes normal. And London Cheesecake. If I wanted to fit into my working clothes I might have a Bit of a job lol!

no idea about what my tattoos would be so something to think about tomorrow on the table lol

Have a good evening buns!
Sarabee xxx

[Sameelee3]

Hi All,
Just checked out the October thread as Vanns suggested and it made me laugh- so many of us have posted with lovely words of wisdom that there are more of us than there are October Pumpkins (aka Pixie)! just made me giggle, not sure why!! We are all experts at chemo now- will put on my CV. Actually, not sure I have a CV any longer....
OH has been up to London to visit his mum and also drop all of our son's stuff off at Uni, as he is finally back in the throes of year 2. Went all maternal domestic goddessy and sent him a batch of coffee cakes, just in case there is a cake shortage in the Big Smoke. I think all this time off is having a strange effect on me....the coffee cakes were sublime, I am signing up for pottery classes, and throwing out all my sharp suits and heels. Am I condemned to wear jogging pants forever without ever actually jogging in them? Will I ever wear mascara again? Is it wrong to enjoy cleaning out the fridge?
I am hoping that this split personality is only temporary and am relying on the Bunnyfest to release my old self. Bunny ears and a glass of champagne might do the trick, along with a touch of Gloria Gaynor.
Take care all, much love ( Who is NED? )
Lee
x

[margietee]

Hi bunnies

I've been meaning to post every day this last week but haven't found time. Been keeping up with reading posts on my mobile though and thinking of you all. There are so many of us with sore feet, hands, arms, boobs etc at the moment - good vibes and big hugs to everyone. We know it will all pass eventually, but it doesn't make it any easier while it's all going on. I am seeing my onc on Wednesday and have a list as long as my sore arms (Vanns, mine are also with indented veins) of Qs for her. Hope she has a lot of time!!!! In my case, feet continue to be the biggest on-going problem. I feel 100 years old most of the time when I try to walk.

I've read back over the last few pages of posts since I last contributed - so many topics have come up that I'm going to have to be a bit selective in replies. In no particular order .... Campo, well done you on getting the all-clear; Pixie, you know I'm thinking of you with your portacath probs; Gaynor, it's me going on the REACT trial - will start this following my onc appt on Wednesday; Ambarose, amazing you managed to climb Snowdon - well done you; Big M, good luck for getting the results of your MRI (tomorrow I think), let us know the outcome; Vanns, congrats on gun dog trials; Little Chick, hope the cording is better soon; Gadget-gal, hope the disclosure of bc had the right effect - how ever did you manage to keep it from your employees that you have bc, all the time you were going through chemo, hair loss etc??

Pixie, I thought your candle message at relay for life was truly wonderful - thank you.

Hair: mine is growing quite well now, but is so fine and fair that I still look bald as a coot. Nevertheless I am now very bold about whipping my cap or scarf off in public places! I seem to have stopped worrying about it so much. Pixie, I loved the story about someone saying how much she liked your short style. Pepihorse, Sarabee, so pleased you have started regrowth at last.

Nails: some of you seem to have awful problems with ridges and discoloration. I really feel for you. I just have different coloured rings beneath mine, different shades of red and pink. Some toenails are lifting but I am keeping everything crossed they don't come off. Sounds awful.

Now, here's a question with an explanation first .... my OH and I have decided my tattoos are really tiny butterflies, so small that no one else can tell but we know what they are!! OH even went online to see which were the best and most exotic dark blue butterflies and has decided my tattoos are actually 3 little tiger eye swallowtails. I mentioned my butterflies to Southpool and she says she will always think of her tattoos now as dolphins. So come on bunnies, let us know what your tattoos really are ....????

Rads are going OK. 5 down, 20 to go. Painfree but a chore having a 2 hour plus journey every afternoon for 5 mins of zapping, like so many other buns. Campo, I send thanks to you every day when I am lying there for enrolling me in the spa. As soon as I lie back and the big light comes on I transport myself to Spa del Campo. It is brilliant! Love it.

That's all for now - sorry to those I haven't mentioned but I send love to everyone. Not long now to bunnyfest ....!!

Lots of love, margiexxxx

[sarabee2012]

Campo - well done you little trailblazer! So pleased that you are clear now!
Gadgetgirl - are you okay? Wave a paw just to let us know you're still there!
Little Chick - reading back on the posts - love your thoughts for the day! Definitely won't be stealing your punkawallah!!

Well, this is my last week on rads with only 4 sessions to go. Boob is red and sore and my underarm feels like I've been punched in the side several times. Tearful at times going to the hospital every morning but am so glad that it will be over soon. The staff are brilliant (except one nurse who always seems a bit firm when turning me so that it hurts but she's so nice I don't want to upset her by mentioning it) and it has been an opportunity to concentrate on the banana boat when the machine moves. I have very large elbows apparently, as when they changed my machine allocation they had to remove a piece from the thing that moves so it wouldn't hit my elbow. Who knew??

One thing left over from chemo - chemo brain! I managed to miss my consultant appointment last Friday. I'd even been to my rads appointment but they'd written my consultant appointment on the card not the sheets of paper they've been giving me with my changes of times. OH was convinced I had an appointment so is now reminding me that I forgot to put it in my diary! Rearranging appointment tomorrow when at the unit and offering my apologies!

Actually, two things left over... my arm is still a bit swollen and I can see the vein marks where they were although they are less swollen now. Am not putting any cream on them, was told they will go down on their own without any help.

Good news though - I have some hair! My bald pate is now looking decidedly fuzzy and I reckon another few weeks and I will be able to ditch the wig. Never really got used to it and will be delighted to give it up. Even now, I have times where I wish I was brave enough to walk about without it on. No eyebrows yet but some stubby eyelashes! LOL!!

Am going to have to go back to my GP as I think the Tamoxifan is working against one of the tablets I already take. I did give the onc a full list of what I'm on and according to the leaflet one of the tablets I take is counteractive towards the benefits of Tamoxifan. All I know is that I have been a bit down this week - more so than usual - and the only change has been the addition of this new drug.

Finally, can I add my boss to Campo's special course. Sent off my latest sick cert signing me off for the whole of my rads treatment together with an email saying that my GP wanted to review my health before I go back to work even on a phased return. Had an email back from him saying that he's worked out that I will be back in the middle of October and he's looking forward to having me back in the office as soon as possible. What he thinks I'm going to be doing and how long I'm going to be in the office each day, I have no idea. So a bit of education might be a good thing!

Okay, buns, wet and windy here today so currently reclining watching the Grand Prix. Can't be bothered to do much else to be honest lol!!!

Hugs and well done to everyone for getting this far.
Sarabee xxx

[pepihorse]

Congrratulations Campo, wonderful news ! so pleased for you. Have a well deservered holiday !
Just noticed my bald head has sprouted, all over, and although its still early days, it does look like its still brown, was thinking at my age (57) it might go grey ! have been lucky that before chemo I only had a few grey hairs and they wasnt very noticable as they were underneath my hair at the temples, so heres hoping it continues to grow back brown and not badger like!!
Now want eyebrows and eyelashes please.................
Been prescribed Lyrica for the peripheal neuropathy and hip/knee pains, anyone else tried it? I think it helped yesterday (first dose) but still ache/sore feet this morning, just taken 2nd dose, will see what happens today. I will let you know my findings on this drug, after a week or 2, so if it works, it might help other ladies on here who are having the same problems.
Sorry Libby aboout your sore/red boob, hope it gets better soon.
Have a lovely Sunday everyone, back to radiotherapy everyday next week, groan..................
Best Wishes,
Wendy

[libby12]

two more boosters to go, I now have a lovely round red kind of sun burn mark on my right boob , my skin is quite sore and some of the skin has cracked so have been given antibiotic cream in case of infection. Also having physio on my arm, have really sore cording from the chemo, I think they are going to show me how to massage my viens, also having physio on my shoulder as thats playing up. Really looking forward to the meet up, must order ears and get present. Thanks for the message Pixie, and so sorry you are still having so many problems with the portacath, it must be awful. Anyway off out for tea. check in again soon. Love to all Elainexx

[libby12]

Sorry pressed button too early. Vanns I have had 2 boosters just one more to go,

[libby12]

Congratulations Campo so pleased for you, now its all onwards and upwards, well done. Vanns

[pesteringpixie]

Hi Bunnies

Congratulations Campo - first bunny in the warren to get the coveted NED 🙂

Have sent a private message to all bunnyfesters with details of the venue and everything. Any problems, please let me know.

Much love

pixie
xx

[Sameelee3]

Big Big congrats to you, Campo. That is such good news! Have a great holiday, Southpool.
xxxxx

[southpool]

Evening Bunnies

I was right packing 20kgs for 2 weeks was a challenge. OH has a
Very heavy carry on, cue meltdown from me when he didn't have room for my e reader!! Hit home how useless my left arm is when I can't carry anything with it in case I trigger lymphodema and I went off into another tamoxifen fueled rant. bc hurts in the strangest of ways, who would have thought not being able to carry luggage could be so upsetting!

Anyway enough moaning as I am off to sleep for my 4am start in the morning. You may not hear from me for a couple of weeks as there is no wi fi in the villa, but think of me at a real life Campo spa!

Turkey here I come.
Love to all.
Holiday S x

[pepihorse]

Had Rads number 2 today, its really weird as I know it doesnt hurt you, but, I get all panicky and palpitaions, like the beginning of a panic attack when I lay on the bed ! it sounds so stupid, after going through surgery, 6 chemos with noo panic, but Rads?? I just want to get up and run out of the room ! I havent done so yet, but cant understand why I go into panic mode, luckily its fairly a quick procedure, otherwise I would have had to run out !!
So weird...... well, got just 13 more to go, and hopefully without embarrassing myself by legging it, or fainting half way through !
Wendy xx

[sara12]

Afternoon all.

Hilary - loved your special training programme.... people keep telling me how well I look and are assuming treatment has finished now - but I still have rads to come in mid October. Congrats on being declared bc free - that must have been such a relief.

You mentioned Christchurch - the only one I know is in Dorset rather than Devon. Nice little place adjoining Bournemouth (where I lived for a while). Christchurch tends to have a lot of older retirees compared to B'mth, though. East Dorset is good for road/rail links and you're near the New Forest. West Dorset is prettier and is often overlooked as people drive by to go to Cornwall/Devon. Depends whether you want somewhere quiet or lively. Bridport is a pleasant coastal market town in W. Dorset with a bit of an 'arty' community and there's plenty of small villages dotted about in the hills as well. Here's a link that shows pics of the SW coast area: http://www.explorethesouthwestcoastpath.co.uk/abbotsbury_2_weymouth7.html

Southpool - my 'heavy legs' only really recovered 7 weeks after my last Tax - was really good when they got back to normal! My hair still not showing any real signs of growth, so decided to shave off the very sparse fluffy blond bits I had, so that if I see any hair now, I know that it's new growth. My onc thought it should be growing by now but said maybe it would take up to 12 weeks to start and I'm 8 weeks down the line now.

Congrats to those of you climbing mountains and going to festivals. I know I'm getting a little bit better every day, but not in greatly noticeable amounts. I can walk a bit faster now and don't get breathless quite so quickly - but still can't go far.

Vanns - your onc sounds really helpful - mine doesn't really volunteer info - you have to know the right questions to ask. I was offered the trial to have one week of stronger rads rather than 3 weeks of the usual strength but I decided to stick with the three week course as was concerned about the possible longer term side effects. Who knows if that was the right decision. I find it difficult when they spring things on you and then expect an instant decision before signing the consent form. Anyway, have planning CT scan on Monday and then start rads on 16th Oct.

Pixie - can't believe you have yet more portacath complications - what a trial. Hope the physio/treatment works for you.

Wendy, glad you enjoyed your LGFB. Your goodie bag sounds great - I think it varies according to area. I had some decent brands in mine, but quite a few cheaper ones too. Can't complain though because it's very nice of all the companies to donate stuff at all.

Anyway, have been out this morning, so will probably have a little nap now.

Sara x

[Guest user]

Pepihorse - 2 daughters duly booked in for the first course to begin tomorrow

Love

Hilary xxxx

[pepihorse]

Hi Campo, Love the spa Training programme, sending 2 daughters !!! one aged 29 and the other 26 !!! Youve got the description spot on ! love it !! its so perfect !!
Wendy x

[Guest user]

Morning Bunnies - Well yesterday was a red letter day for me. I had my first follow up appointment with Onco since finishing rads at the end of August and I am clear of bc! - signed off now until December/January Slept fully for 10 hours as have not slept properly for the past two weeks. I am a very positive person but I admit the nearer I got to this appointment I was feeling more stressed as I knew the blood test would show whether the bc cells were still there or not, or the worry that the c cells were else where. But they are not and I am doing a Happy Hippy Bunny Hop. I have however got high cholesterol and low bone density but you know what I DONT CARE!

Glad to see the warren busy but also sad to hear that so many of you are suffering from swollen joints etc. Your hammocks are waiting with the team ready to apply soothing creams & oils to reduce the swellings and ease away the pains.

For those with friends/family who do not fully understand our condition - send them across to the Spa as I have set up a Special training programme to educate them on our condition eg. tying weights to their legs which are full of water, putting blinds on their eyes giving them blurred vision, tying small electrical devices to give them small electric shocks in their muscles, placing small beds of nails on the soles of the feet and making them run a 26K marathon at the same time. What do you think?

For those bunnies going on holiday, restaurants, theatres have a wonderful, marvellous times.

Today is the beginning of the rest of my life - Onwards & Upwards for all of us - the end of the tunnel is now very close for all you - so looking forward to meeting your brave, talented wonderful bunnies in October.

Love & Hugs

Hilary xxxxxxxxxxxx

[Guest user]

sameelee I'm not going back till the spring term either and I'm buggered if I'm spending my time planning lessons. it's as much as I can do to get out of bed lol !!!!!

[Guest user]

hi bunnies,
i just popped into the October thread ( yes I know October!!!) to provide a bit of moral support and it struck me just how far we have come. They too are terrified and reaching out to virtual strangers to help soothe their inner turmoil just as we did in the beginning. I forgot just how awful it was before we started but now we are collectively re-discovering our old lives and drifting back to what used tobe normality. No doubt that we are forever changed but we are moving further away from the chemo chapter of our lives. It makes me chuckle when I think of all the stupid topics that we have covered from grammar schools and hobbies and books and families ( including mad senior citizens from Yorkshire. or was it Lancashire? ) and I wonder if they too will follow a similar journey. It's worth popping in to give them a quick message of support if you are able.
Today I got "marked up" by my ONC for my boost treatment of rads in the last week. it is ahigher dose directly at the tumor bed which is determined from the scans and then marked onto my breast with a felt tip! So not only do I have a shark attack of a scar ( 2x operations and an infection made a mess) on my right tit but it is now framed by its own felt tip box. Lovely! all this topped off by lashings of boob cream ( aqueus) applied 3 times a day. it's amazing what we get used to and as southpool said I too am regularly chatting to the rads team with no upper garments on without batting an eyelid!!
by the way I am sorry for a lack of capitals and poor spell check etc but the flipping auto correct does my head in and I can't be bothered to go back and edit/correct it all.
bye
vannsx

[Sameelee3]

Hello All,
Sorry I haven't posted much lately, but I have been following all your tax and rads stories. Can't believe how far some of you have to travel for treatment... Hope those of us still suffering from fatigue and painful joints feel better soon. I've been on Arimidex for 2 weeks now and so far have been ok. I have to do strange finger dancing exercises when I wake up, and my feet belong to an eighty year old woman for the first ten minutes of the day, and ankles are twice their normal size, but hey, it's not chemo! Early days yet, my GP says, in that knowing, sympathetic but brisk way she has.
Have been signed off work until January, and I know that I should be taking the time to plan amazingly brilliant lessons for when I go back, but seem to have no trouble filling the days with completely vacuous activity. Coffee with a friend today began at 11am and ended at 5.30! When I think about the amount I used to pack in to a typical day at work, I feel a bit embarrassed about how little I'm achieving. Just need to keep reminding myself that I probably have lots of chemicals lurking in my bod, so am not stressing too much. Am trying to walk a lot.
Southpool, am impressed that your hair is long enough to say goodbye to Susie. Mine is coming back, but it's a bit freaky seeing my brother wearing my clothes in the mirror, so maybe another week to go yet. Still at least half a stone overweight ( might be fluid retention?) and not shifting, but less bothered now, except that none of my clothes fit.
Am able to plan some good things, like many of us are able to do now: we have come such a long way.
Regarding the risk- reduction surgery, had a long chat with a BC nurse who unpicked all my worries one by one. Will probably go for an implant in the BC side first, and see how it ends up. I thought i had calcium deposits in the other breast as well, but apparently I don't, so that was very useful to discover!
Waiting to find out the stats for recurrence of BC in the other breast before I make a definite decision, though. i do feel happier about it now, despite being unable to talk to her without blubbing all the time. Was really strange and she observed that I was probably too emotional at the moment to make such a big decision.
Am off to catch up on sleep now- bad night last night, so bye for now, Bunnies. Also looking forward to Bunnyfest- need to order bunny ears soon!!
Love to all, keep posting as it's good to keep up with news.
Lee
x

[Guest user]

Hi Buns

There's a theme in recent posts about other people's expectations vs reality and it is a real problem. People think you have finished Chemo therefore you must be ok. I know I have said this before but will repeat it because it helps us - it's worth ordering the Moving Forward publication from breast cancer care - it describes so well how you feel at the end of this nightmare journey and helps you to come to terms with the fact that it takes ages to feel normal.

I am back at work for much of the time (I even gave a training course yesterday) but I suddenly get overwhelmed with fatigue and just have to take to my bed. It depressed me at first but now I am just grateful to be able to do anything and manage to accept that a point comes when I need to flop. I went to my WI book club yesterday for the first time in months (discussed Fifty Shades of Grey which was a laugh!) and have been to the theatre and to restaurants. Tomorrow I am going up to London to meet old work colleagues and even though I will conk out by 9:30 I am still excited about going.

I am really looking forward to Bunny fest - Pixie/Southpool - can you remind us of arrangements soon? My brain did not work at the time it was organised so I can't remember much.

Lots of love to all

Mary
xxxxx

[southpool]

Afternoon Bunnies

I have been for my rads planning this morning & now have 2 little dots on my side & in my cleavage (my lovely surgeon left me with a little cleavage after my mx). Am so blasé about flashing my body now, realised I had stood sharing my love of Vietnam with the radiographer (she was going there on holiday I wasn't just rambling vaguely!) for 10 mins with my upper body completely bare! I suspect she thought I was slightly mad. Have got my schedule now and it is 20 sessions starting the Thursday we return from holiday. I have got the 5pm appointment each day so I can still work until 2ish & get the train back for treatments. Hopefully I won't be too knackered.

Pixie the relay for Life sounds really lovely & it is fabulous to raise such a large amount for a great cause.

My legs are still really heavy & achy but I don't know if that is after effects of Tax or too much dancing at the weekend, probably a mix of both. Have also now got a stinking cold, my 2nd since I started chemo & I never had them previously so my immune system obviously isn't great. Glad I stopped myself from eating oysters at the weekend, probably too risky on my stomach.

Hair is growing back & I have started to go bare headed now there is some coverage on my extra brain & birthmark. Susie was worn for the last time yesterday which was my last day in work before holidays. I am going to be wig free for work when I return as my head should be slightly tanned.

Hopping off to start packing my bag and see if I can manage to keep it below 20kgs. Travelled for 6mths with a 25kg bag but suspect won't be able to manage 2weeks with 20 kilos!

Love & virtual hugs
S x

[pesteringpixie]

Hi bunnies

Sorry i am abit awol just incredibly busy on the work front and this last weekend we did the 24 hour relay for life which was truly wonderful. Will be loading pics onto my website and pixies happy bags face book pages.

Had herceptin at home for the first time today which was okay and only have 3 rads left. Driven myself to them all. Bit achy and tired, like i have artritis but i just push myself through it.... Don't know if its the letrozole or herceptin makimg me ache so much but do know its not the cancer so thats okay in my books.

News on the portacath perils.....after scans, physio assessments and lots of poking it seems thar some of my chemo drugs leaked from the portacath into my soft tissue and has caused nerve damage. So this is on top of my blocked jugular. Gets better eh bunnies? So now referred for weekly physio and accupuncture for nerve damage and we are on wait and see about surgery for jugular.

So what with this, daily rads, full on work, dog walking, fund raising like mad, organising my McMillan coffee morning and trying to fit a bit of tai chi in.... Life is blooming manic!

At the relay for life they have the candle of hope ceremony, very very emotional. People write messages on a tall white bag which is then weighted with sand and a lighted tea light put in. Hese then,line the track. On my bag, i drew a rabbit and wrote "for all the bunnies in my bc warren. All my love Pixie". Will load picture onto my facebook. Oh wrote "with loving gratitude for my wonderful Pixie, my wife juliana". Some of the other messages broke your heart.

Have done race for life several times but it doesn't compare to this..... Life affirming stuff.

Right, have 100 wedding bags to get done for tomorrow so will sign off now. Much love to all. Hilary, check out Cullompton and Sidmouth. Both beautiful.


Love to all

Pixie xxx

[libby12]

Hi everyone, Vanns I have indentations in my arm also, onc said its from the fec, he said they will get a little better but to keep massaging them everyday, it does help, but they do look awful. I had my last chemo on the 29th July, I still feel tired, but now not sure if this is because of the rads. Body aches as well but I think this is the Hercepten not sure, but I think one of the side effects is aches and pains, my legs are particularly bad. I just dont feel ready for work yet, still feel emotional, so was thinking of phased rtw at the end of December begining of Jan, Im sure work think that I am taking more time than necessary, they think that because treatment is coming to an end, I should be going back to work, I find it all a bit upsetting as I know right now I couldnt cope with it all, not sure what to do. Anyway rads not too bad, bit red and sore today so have been putting on the cream they gave me, have been keeping it in the fridge so its nice and cold.Talk about annoying things people say, I was asked when I would be starting my spinning classes again!!!!. I will stop moaning now sorry Just feeling a bit lost with everything. Pixie how are you finding the Herceptin, and is anyone else finding your bones ache with it, I feel 90. Anyhow love to all Elainexxxx

[Rattles]

I have popped in from the May thread to ask for your help.
I dont know how or why I have the feeling that you are all planning to meet up- is this right?
If so, I wanted to ask for your help.
Some of us from the May thread want to meet up, but we all live across the country. I am not a natural 'events organiser' and I thought I would be really cheeky and ask where you are meeting and if you like/liked hotel and would reccommend it? I have not stayed in a hotel for many, many years and would not really know how to go about organising and negotiating cost etc.
Would very much welcome any advice/tips if you dont mind sharing.
with love to all, Rattles x

[pepihorse]

Hi Vanns, 6 weeks till your beginning to feel a bit better?,....... groan,..... that means Ive another at least 3 weeks to go feeling like this.... more groans..... the bike ride offer sounds worse than my horse ride offer!!!!! lol!!! people just dont understand......
Glad to hear Rads arnt too bad, not looking forward to the 1 hour journey each way everyday though. I will be glad to get it over with now, that means in 3 weeks time, rads will be finished and hopefully my aches and pains will go at about the same time, fingers crossed !! Looking forward to that. I wont be having the Tamoxifan as Im triple negative -not caused by hormones, so they wouldnt help me, so rads are my last chance, lets hope it mops up anything left after MX and chemo.
Well, just walked/hobbled the dog for 3/4 hour, now knackered, sofa time again I think ! and a good book for a while!!
Take care,
Wendy x

[Guest user]

hi all,
pepihorse I know how annoying people can seem. I had a friend text me just after I finished chemo to ask if I wanted to do a 26 mile charity bike ride as it was for cancer!!!!!! I just couldn't believe that she thought I was well enough to leave the house letalone ride a bike. I am now 6 weeks post last TAX and I'm only just starting to feel like I'm getting to my good week. it has taken much much longer to recover than previously but ONC said that was the cummulative effect. I am also very tired this week, but I suppose I am now in week 3 of rads and the tamoxifen is making me very emotional too. the rads are fine by the way. it's only now. that I have a little reddening but nothing to shout home about. my fingers are more painful than that.
bye for now
vannsx

[Guest user]

Oh, meant to say I seem very swollen around tummy. Or is it just all the cake lol!

[Guest user]

Two weeks today since last TC. Still very acheyobit I can only take paracetamol so on max dose of that, plus versatis for underarm pain. I have found that a pillow between the knees ar night helps the back and hip Pain when lying on your side, and switch it to under your knees when lying on your back and it takes some of the strain off your spine. Thighs and stomach muscles are painful during the day, but trying to move around in the house a bit and build up some strength. Off for last blood counts this afternoon. Will be so good not to have needles stuck in me next week!

Nails ok, not brilliant but not too bad. Finally got hold of bcn re cording and they said they will sort it out with physio sooner rather than later.

Good to hear from everyone. We all have to be patient now! X

[pepihorse]

Hi Vanns, like you, I am still feeling very weak and aching hips, knees and ankles, also burning feet and peeling, like you Crispie. Its will be 3 weeks tomorrow since last Tax, so thought I would be better by now. I am still taking co-codomol for the pain, otherwise I would just be laying on the sofa or hobbling about. Starting Rads Thursday, Vanns so not far behind you. How are you feeling with the Rads? Ive heard it makes you tired, so far I havent had the tiredness with the chemo. am up at 6 a.m. each morning as by then my hip aches wake me up, and cant lay left or right side anymore, so get up, take pills, to get rid of the aches a bit. Such a nuisance,
My daughter has bought a couple of more horses, one of them is very quiet and asked me to fly over to Edinburgh for the weekend and we can go for a ride. ??????????????????? I would need a crane to even get me up on a horse, let alone have the energy, strength to actually ride it !!! I only saw my daughter 2 weeks ago, she saw how I was hobbling about, I cant believe she thinks Im better???? people just dont realise how chemo effects the body, and thinking about it, neither did I until I had it, its just something only the bearer knows how painful it can be.
I went to the Look Good Feel Better workshop thing at the Big C Centre in Norwich yesterday, if you havent been to one, ladies, do go, wonderful goody bag of expensive make up/skin care and even an Armani large bottle of perfume! all the bag contents were Chanel/L'Oreal/Clinique etc all very good makes, and everything you need all in a zip bag and all free, I was amazed, thought maybe would get samples, but these were all full size ! My make up bag at the moment consists of Boots No.7 stuff !! now Ive gone all posh !! lol! Shame I have no eyelashes, so couldnt uses the mascara, but they showed me how to make eyebrows !! as havent any of them either!! anyway I enjoyed it.
Have a good day Bunnies,
Wendy x

[Guest user]

Hi Vanns,
My nails are rubbish too. Have horrible ridges and bumps on them and also have black lines on them which look like dirt. Also the nails on my left hand appear to be growing faster than the right hand. And I wore the dark nail polish too. Now I wear it to cover up the mess.
Congrats on the gundog comp.Wish I could get my retriever to stop jumping at me.
Regards to all
Christine

[Guest user]

hi bunnies,
sorry I havent posted for a bit but I have caught up now. This is just a quick note but I will endeavour to write a longer post in the next few days. anyway I saw my ONC last Thursday as I'm half way through my rads now. I told him about trying to exercise etc and how low I felt when I realised how weak I was. he told me that my expectations were far too high for this stage in my recovery and that he did not expect me to be undertaking anything like normal activity levels for at least three months after chemo!!!!!! he also felt a return to my job should begin after Xmas on a 12 week phased programme. he said you cannot underestimate how much this treatment effects the body. This has made me feel much better and I'm going to find a Pilates class and just continue to build up stamina through walking the dog.
other news.
nails are rubbish and practically hanging off despite black nail varnish which incidentely my ONC insisted on
my legs are still very heavy and chemo vien has left a sort of indentation in my arm. Anyon else got?
completed my fiirst gundog competition of the year on Sunday and completed both events to a good standard. I was a very proud mummy!

[Guest user]

Hi everyone,

Soprry that brain is befuddled. Can't take things in. So good luck to everyone whatever is happening or about to happen or what has happened. What a load of twaddle I'm writing.

Still tired almost 9 weeks post chemo. Skin peelimg off my feet in sheets. OH taking care of me.

Going back to work for defo on 4th October for one day and then on annual leave for about 19 days to Somerset. Anyone live down that way?
Chrispie xxxxxxxxx

[Guest user]

Afternoon Bunnies - Just checking in. Hope all other bunnies are keeping well and it is so good to see other bunnies getting out & about. Shall read all the posts again and come back later. Just returned from a lovely trip to Yorkshire - really enjoyed the change of scenery, seeing green fields, sheep, cows etc, shopping and so many restaurants to chose from. Felt at one time during the trip rather tired and emotional for a few days but I think it was because of doing too much all at the one time ie. seeing friends, family, travelling etc. Managed to identify a couple of places for OHs parents to move to and be safe - the over 50s/60s type of apartment with a manager in situ. One is in Bingley and the other in Bedale - must admit like Bedale better than Bingley but the choice is OHs parents. As for us like both Skipton and Harrogate however as much as I like Harrogate it is so busy and OH is not so sure about the Yorkshire area at all as he is a Yorkishireman and remembers the bad weather so we are still looking. Now homing into Christchurch, Devon - anybody know that area?
So glad to hear that the Bannana boat is being used a lot more, remember the jet skis and paragliding are also available. Now that more of us are up and about we are ramping up the activities but dont worry for those of you who are still under the tax truck the team are still there to help you get through.

Talk to you later Bunnies.
Hugs & kisses to all Bunnies

Hilary xxxxxxxxxxxxxxxxxxx

[pepihorse]

Good luck Gadget-Gal, try not to get too stressed, easier said than done, I know, but sending you my best wishes for your forthcoming operation. Been there, its not nice, but another thing out of the way.
Wendy x

[southpool]

Evening Bunnies

Well done Amba, I am very impressed you made it to the summit. I would have problems managing that walk pre chemo.

I had a fabulous time at the festival, Portmeirion is really beautiful & was a great venue. Saw lots of great bands & DJ's and managed to do everything I would have done pre chemo which was fabulous even the rain didn't stop me from dancing at pop up raves in the woods. Little chick - festivals are very different these days most of them are enormous & very corporate however This was very small only 7000 people and curated by people who really knew their stuff. I like my home contorts so being able to stay in a hotel on site rather than camp was a real bonus, particularly because the rain & mud were relentless yesterday.

Lee I am also thinking of a risk reducing mx & my bcn is sorting out an appointment with the physiologist for me. Because the operation isn't urgent I will have to join the surgeons waiting list so it probably won't be until the new year.

Little chick I have had cording since my operation. I still do the exercises from the DVD, stretch my arm regularly and massage my armpit every night. The physio showed me how to massage, it feels like bubble wrap popping under your fingers. Weird but strangely satisfying. It clears & then
reappears on a regular basis, but stretching helps loosen it and it doesn't give me problems.

Three nights on the trot dancin until the early hours have left me a touch tired. So hopping off to bed for an early night.

Love & virtual hugs.
S x

[Guest user]

Hi,

this is a v. quick post. Ive been on lurk mode abd couldnt post because Ive been quite stressed and couldnt get anything down in writing. just as I was trying to wind down and arrange to take a few weeks off post-mastectomy, some work issues have cropped up. my department is being merged and Im trying to get senoirs and HR to accomodate me and try and get my circumstances dealth with *before* I go away. I ended up disclosing everything because "going away for and operation" apparently doesnt seem big enough. "CANCER" gets people listening though!

Im trying to keep calm but it's difficult, my eczema is flaring up and some other symptoms are cropping up.


I took the day off for my birthday so I spent the afternoon having cake and hanging out with friends, this has helped. Tomorrow I have my pre-op tests and prosthesis fittings, so it could be a long day. shall post properly later

GG

[GMT]

Sarah,
Well done, I can just about manage a couple of times round my park! V impressed.
Gaynor xx

[sarabee2012]

Well done Sarah!!!!
Sarabee xxx

[pepihorse]

Well done Sarah, what an achievement !! congratulations !
Wendy x

[ambarose]

Well, I did manage to get to the top of Snowdon but it was hard. Thick cloud up there, windy and freezing cold but it was like the high street of our nearest town, so many people. There must have been 200 or more at the top, actually i thought it was quite dangerous as evryone was going up or down with very little order about it. I was determined once we got to withing 300 feet of the top that no matter how many rests i had I was getting there so it was 20 steps up then rest etc etc.. My OH did it too and he hates heights so it was just as much a challenge for him.
Stayed in a lovely Holiday Inn afterwards and soaked in the steam room and pool so legs not too bad today. There were so many people doing charity climbs including people with heavy children in back packs doing it for Great Ormond Street Hospital so they had the challenge-I only had to drag my own body up ther. There were 5 year old doing it , don't know I would have evr got mine to persevere that long but maybe the Olympics has inspired them.
So nice to hear that others are getting out and about -there is hope for us bunnies, the energy does come back.

Love Sarah

[Guest user]

Hi Elaine, thanks for that. The versatis helped me get some sleep last night and I'm feeling a bit more like myself today - must ring the bcn back on Monday. We keptmissing each other on the phone yesterday. I guess that massage is what the physio will do. Thanks for replying. X

[libby12]

Hi all, well only 6 more rads to go, feeling tired and a bit sore underneath my arms , but nothing major. Had a good chat with one of the nurses at the rad centre who was checking up on how I was doing ect. I asked her about work, and she said to go back when I felt totally ready. Right now I dont feel ready, I still feel tired and very emotional so meeting with HR and doctor in a couple of weeks to discuss things re return to work. I think I might go back end of Decmeber early January, but I will see on how I feel. I was lucky to have escaped any damage to my nails, its sound horrible. Little chick I too have cording, nurse showed me how to massage my arm which does help, I also have neck pain, which nurse thinks is from the rads. Off out for lunch today so check in later. Love to all Elainexxxx Sarabee don't go back to work until you are ready, as it could set you back, we have all been through so much and its takes it toll on our bodies, also some people recover quicker than others, so look after you!!!xx

[pepihorse]

Hi Crisp1e, sorry to hear about your friends husband, so sad.... Im with you on the feet and hands, Palmar/Planter syndrome, I have it too, I am only 2 weeks from last TAX, but I know how uncomfortable it is, my feet are peeling now as well, hands just sore at the moment. Ive just started using "Udderly smooth with urea" moisturising cream, got it off Amazon, I was reccomended using it from one of the bunnies on here, and it feels nice on the feet ! not as greasy as aqueous cream, might be worth a try, about £8.00 inc delivery. Ive also read on internet that its good for this symptom, so maybe worth you trying it, as 8 weeks is a long time, treading on the hot coals ! well thats what it feels like to me!!
Best wishes,
Wendy x

[Guest user]

Hi everyone,
Haven't been able to post as I've been in Morecambe since Monday to take my parents for a break. i call it the annual endurance test. Sorry i haven't been able to concentrate on new posts and all the info/questions on them. So if you have finished chemo - congrats. If you're having rads good luck. If you've still to have surgery I hope everything goes well for you. I am 8 weeks post TAX and still have sore fingers and feet and skin is peeling off them. Fed up smothering myself with aqueous cream!
My friend's husband died last week and I'm going to the funeral tomorrow. He was a wonderful man, a true friend and a gentleman. Latterly he had Parkinson's disease.They went for a respite break a week past on Monday and he took a massive stroke on the Tuesday morning. So I'm going to sign off hoping that I can be everything I need to be to his widow. Having been widowed myself 15 years ago, I know it's not an easy road.
Regards to all of you.
Love
chrisp1e xxx