What an amazing group of strong, lovely women. So glad I got to meet you. I got home at half eight, and was awake until midnight re-reading your posts now I now what you look and sound like! Campo's spa is a little different with a Scottish accent.
What a long journey we have all been on together.
No one told toddler the clocks went back so we were all up nice and early, still tomorrow morning we will probably get woken up by the tambourine!
Pixie and Southpool, thank you so much for Bunnyfeste
Dear dear bunnies,
Thank you so much for the most wonderful afternoon of bunnyfeste. Like GMT said it was fabulous to put faces to names and now that it's over I have had a little cry to myself. I was so worried that my expectationsmight have been a bit high and that I might have built it up in to something that couldnot deliver. I was soooooo wrong and now I feel an even bigger connection than before.
Those staying have a good night.
Pixie thank you so much for organinsing with your trusty assistant southpool. Have a wonderful holiday and try to have a rest.
Bye ladies and thank you all for being there for me
Thanks to everyone at Bunnyfeste for making it a wonderful, memorable day. It was so lovely to meet you all and put faces to names. Those of you staying tonight have a good evening and safe journeys home. Pixie, have a lovely holiday. And those missing, do try to make it next time.
Just putting my feet up, watching Strictly and think I'll have glass of wine!
I am sitting in the lobby of the hotel whilst waiting for 12 o'clock for BUNNYFESTE!!!!!!!!!! Have had breakfast and kept looking around for ladies with bunny ears or hair like mine but so far not spotted anyone.
Gadget Gal - Penny so pleased to hear that your sight problem was nothing to worry about - you mst of been terrified.
RachelP - Pleased to hear that the little one is okay - what a nightmare!
Chrisp1e - Again sorry we are not going to meet you tomorrow or Penny but hopefully we will do soon.
Okay scouring the place again for more bunny ears & stylish short hair.
Thanks Penny. I've been so set on everything returning to normal after all this stuff this year. Up until this month I wouldn't have considered stopping work but I'm too physically and mentally exhausted now. Now that I have taken off the brave face I was wearing for everyone else I'm beginning to look at myself as I am and deciding for myself what I can and can't do.
I had to cancel my visit to bunnyfest so I'll be online at some point.
pixie - slow down!
Thanks for the replies, it's good to know others can empathise with these things. I have a few weeks gap between the surgery and radiotherapy, I've booked myself a few days in Lille. I thought, a small city with things in relative walking distance would be good. Oh, and a, 5* hotel, because I neeeed it. cos y'know I had cancer, dammit!! this is pretty much this year's holiday as I cancelled my summer hold when I got the diagnosis and then couldn't take the time odd work anyway.
RachelP, it's amazing how toddlers bounce back when they've been really ill. Then they're all happy and playing happily when the adult is still exhausted from all the angst and dealing with doctors and nurses!
sarabee2012, I stopped wearing my scarves and wraps when I had barely a centimetre. (ok, in part I was bored iwth the scarves and fed up with the "you don't look sick to me" attitude I sometimes get.) But regardless, no one stared at me and now it's no big deal to me.
Big M, I won't be at the bunnyfeste this weekend. Because of my hiatus earlier on, I was told I couldn't join. I would have loved to meet you as we had a quite a few SEs in common. I might have posted my name once or twice I can't remember, but it's Penny
chrisp1e, congratulations on your decision. I think a lot of people chose retirement just for their well-being, over their income. My mother did it for her blood pressure and other things, even before she qualified for her "official" pension.
For those of you who won't be on-line over the weekend, have a good one.
Back from Lisbon now and thinking about tomorrow- lots of posts from you all to catch up on! Pixie, everyone has given good advice- try to STOP doing so much, just for a while. You have had so many issues with all your treatment, and have worked, and done Happy Bags, and organised us all magnificently, you must now take some time to breathe. Your holiday will give you and OH a chance to have some quality time to regroup a bit.
I think some of us feel the same about our appearance- it was hard sometimes being away with my best friend:she's very glam and even the passport control man in Lisbon told her that she looked nowhere near her age! He didn't say that to me... and I admit I was a bit miffed. ( I know, it's ridiculous!)
I havent worn the wig for ages now, so will be sporting a grey crop that's not a crop, more like a silver smear all over my scalp.
Gadget Gal- really empathised with you when I read your post about panicking. I had a bit of a scare while I was away- not to put too fine a point on it, I thought my poo contained blood. (Sorry, but none of us are squeamish are we?) I came out of the loo and didnt want to say anything but then broke down. I was really really frightened that the cancer had spread very fast, the chemo was a complete waste of time, and this was it, crunch time, bowel cancer. My friend was shocked but brilliant- we had a cry together and decided to wait and see if there was some other explanation....and it seems that I am ok now. It was the first time in ages that I felt that kind of panic again and it vividly brought back all that has happened.
Anyway, it is wonderful never to be afraid to share stuff. Thanks Bunnies. really looking forward to meeting those of you who are coming to Birmingham and sending lots of love to those who can't be there.
Percussion instrument!!!! just off to do a Saisnbury's shop so will look in the " Percussive Instruments" section.
See you tomorrow. Very excited.
Vanns - have just read about your terrier. I'm so sorry. It's the worst thing ever when your pet's time comes. I had to put my little X whippet down last year and I was so distraught I think the vet didn't know what to do or how she was going to get rid of me!
Regards to those attending bunnyfest.
I also have pins & needles in my hands and fingers especially during the night.
Haven't been too good this week although cancerwise everything is OK. I think the emotions of the whole thing have caught up with me now and knocked me down. Having taken the decision to retire at the end of the year, I'm really looking forward to it and I never thought I'd hear myself say that! I don't even care anymore how skint I might be.
Haven't read all the posts so regards to all of you. Hope the weekend is good for you.
Hello all - just about to go and pack for Bunnyfeste!!!! No idea about a percussion instrument - can I use the spoons on the table?
Will probably arrive with the wig and ditch it. Am almost at the point where I can go without so am using this weekend as a tester - try not to faint when you see my short hair and round head lol!!
Tears - have shed a few this week and I think we are all going through a bit of a wobble. It's nice to know that you're all there and we're all wobby together.
Gadget-girl - have had floaters in my left eye for years (due to a nasty incident with a mascara brush) and am used to them now but you were right to get them checked. I too have been prodding and poking at my arm for the last few weeks to try and work out why it is still so painful after the rads have ended. My OH reminded me yesterday that it's only been a couple of weeks since I stopped and I should take things easy for a bit longer.
Finally, Big M - if you need a lift, let me know - seriously!!! We can always come and get you rather than you miss out.
Looking forward to meeting everyone face to face at last!
Elaine - I also have a stuffed up nose and ears. Got up yesterday morning and found myself staggering around like a drunk! Today it was worse - I was bashing into furniture and doorways - so I went to the GP. I have rotational vertigo caused by all the "snot" (doctor's term) that is in my head. I have taken to my bed and am praying constantly that I will be well enough to drive to Birmingham tomorrow. I will be devastated if I can't come.
Percussion - I asked 17 year old son where the maracas are and he told me they got sent to a charity shop at least 5 years ago. I will drag my stumbling body in to Egham this afternoon, where we have 10 charity shops (also 4 opticians and 4 chemists, but nowhere to buy shoes!) and search the shelves for discarded tambourines or similar.
Gadget-Gal - my heart goes out to you with all the cumulative problems you have been going through. Lookign forward to meeting you, and finding out your real name! I don't think you have ever revealed it.
I will be wearing my wig but will probably take it off early in the proceedings as your company creates confidence. I have a bit of greyish-white fluff on my head but not enough to earn the description "hair style".
Oh gadget gal, really glad to hear your eyes aren't serious. I completely know what you mean about panicking. I have always been a hypochondriac and having bc really hasn't helped!!!!!! I keep thinking every ache, pain, lump or bump is a spread or a new cancer, and I cry every time I have to talk to a surgeon or onc. Then I get the head tilt and the offer of seeing bcn, which just makes me sob more.
All of which not helped by real life. Had a terrifying Tuesday night with toddler. OH away with work, toddler went from going to bed fine, to being sick at 11, to vomiting blood by 2am. Had the hospital bag packed and travel plan arranged. A couple of phone calls to emergency doctor and toddler sleeping and drinking some water saw us staying at home. She woke up weds bright and bubbly thank goodness, so all I had to do was find someone to sit with her while I went for a boob check at the hospital. Hence the tears.
I am going to raid toddlers birthday present for a bunnyfeste instrument, as have got her a little music set. OH says this is mean as she hasn't even had it yet and should take my trumpet. I say this is not a percussion instrument. OH says it is if you hit it on the table.
Am really looking forward to meeting everyone on Saturday. Not sure how I am getting there yet (clutch failed on car on way home from hospital his week!) but I will be there.
Sarah,very impressed at your lightning speed thinking to burn your good arm, well done.
I too have ditched the wig. I even went for a interview last week with my very very short crop. I just figured no one would ever dare ask why my hair is so short, and they didn't! Keep getting told by my friends it really suits me and I should keep it short. Maybe... But not this short.
Southpool, I can just imagine your hissy fit and the old folk being nice to you now. I just think you are awesome for working through this.
I have a confesson - soemthing else Ive been bottling up and couldnt post about, or admit to a single soul.
a few weeks ago, during chemi I began to see floaters in my vision. I have early stage glaucoma (no sight lost) that is controlled by drugs. however, chemo SEs gave me sore eyes and I stopped taking them untill my -supposedly- urgent check -up was brougth forward. the eye doctors gave me new meds and that was that.
then i started to get some black spots in my vision. I pretended I was imagining them, I was just stired, etc, etc. I had beenwarned if they could control the pressure but not reverse anyh sight loss. so, Ive been petrified and somewhat resigned:
-lymphoedma will kick in anyday now, shall have arm the size of a blimp for evah
-I'll be single and barren - (fertillty or none, wholl sleep with me )
-oh, and Ill be blind anway so let the cancer do its worse.
I've been hiding this for ages.
now I dont know why, but since I saw my surgeon and got the histoology update, I decide to put on my big girl's panties and admit the floaters. I called my consultant's office who told me to go to Eye Hospital A&E.
They treated me as a priority, after having the mx recenltly, I even got a quiet waiting room and a recliner chair! When the doctor looked at my eyes he said there was no glaucoma-related deterioration and that floaters can occur with anyone, especially as I'm short-sighted.
so he reassured me that all was good at the moment, just take eye drops etc. and "go home and rest".
Normally I would google this stuff and check but I was too scared to. it was only then that I looked up the difference between glaucoma vision and floater vision and realised the two things and very different.
Sending you sympathetic virtual hugs Ambarose. I ended up sobbing hysterically in the rads unit last Wednesday for exactly the reasons you have described stressful work followed by long waits. Although I wouldn't recommend public meltdowns to anyone it has meant my appointments are now sorted. Basically I go an hour late everyday & if by any chance they finish on time they wait for me. Out of my last 8 appointments that has happened twice. It is so much better because I now feel I have a bit of control. A bye product of meltdown is all the old folk are really concerned for my welfare and chat to me whilst I'm waiting!!
Pixie hope you manage to get everything packed and anyway the states is great for shopping, you can just buy stuff there.
Elaine stick to the sofa and conserve your energy for Saturday. I was very tired this morning so decided to work from home, as I have to be sure I'm fighting fit for Saturday. It is the social event of the year!
I will be au natural as well, Susie was ditched a month ago and I am now rather fond of my new short hair. The old folk keep admiring it but I don't know if that is just because they feel so sorry for the poor sobbing woman!
For anyone who is having percussion problems, table tapping/banging will be allowed.
Ambarose - if you look at Bunnyfest programme, you will see slot for tears has been scheduled! I too am longing to be with those who really do understand the absolute crap we have and are continuing to go through..
Well, we are all having fiascos it seems- have had delays all week at Rads - 2 hours usually so spend till 6-7pm at hospital after work, totally tired and on verge of tears all the time especially at work which i feel I cannot cope with- boss with vision wanting to put it into practice now now now and then today have call from hospital to say all computer down so no one is being done and they will reschedule for Saturday when I go tomorrow. This is despite me saying yesterday that if there were any more problems I COULD NOT DO SATURDAY as have special special day I just cannot miss. So I am not doing Saturday no matter what they say-they can put me in next saturday.
The emotions are raw at the moment-do you think it is the Tamoxifen or just generally?
I just want to meet you all at Bunnyfeste and have a good cry-that sounds pathetic but I am sure it will do me good.
Sorry for the rant
See you Saturday and I ditched my wig last Friday so will be au natural.
Elaine... hope you are feeling perkier bunny... you stick to that sofa like glue 🙂
Well it may suprise you to know that I continue to go through my days at 100mph.... (mother says you can't die if you keep moving..)
I believe I now have everything prepared for Bunnyfeste - included home-made and home-decorated percussion instrument - shove over valerie Singleton.
Started working at 7am this morning and am still at it as have a humongous pile of management assignments to mark, well pile a lot less nw, just 17 more to go. Am teaching 9am - 2pm tomorrow then need to come home and think about packing as of course I am packing for 10 days.... and do you know, its okay. My perspective has completely changed since having cancer.
i used to spend ages writing clothes and accessory lists and a weeks holiday would need at least 6 pairs of shoes and handbags.
This time its comfy trousers, t-shirts, fleeces (breathable ones) and my wonderful Paramo coat. (serious outdoor pursuits coat - beacause I used to be a serious walker... now I hobble around like an old lady) and my wonderful Vibram soled walking shoes. Oh and a couple of warm hats. Of course this is largely due to me now being a portly size 14 pixie rather than a svelte size 10 pixie who could totter on glacial hees and wear fitted clothes. There's something to be said for being fat and bald, it Don't have cut down your grooming time!
Spent more time getting together my painting stuff, binoculars and camera....
So is anyone wearing a wig this weeekend? Mine have been stuck in the box for a month now and never think about wearing them any more, got really comfortable wth the GI jane look - albeit a bit parky round the ears when the wind is blowing!
Anyway, last posting from me as we are off to Birmingham tomorrow.... so much love to all and I will see 13 of you at Bunnyfeste. Wheeeeeee......
Oh, better tell you my latest bloody fiasco, well 2 of them actually.
1) Onc sent me for an MRI becasue of nerve damage I have. Got appointment and an information leaflet. It asked of you have metal implants advise us. so i did. told them i have a portacath. Radiographers said they had never heard of it. 9 this is the crowd who inserted the botched up one) Explained it is titanium. Told we can't do an MRI on titanium as MRI is magnetic. Explained that Titanium isn't attracted. Told me they will cancel appointment until they do some research. I wanted to beat them to death - with a big wet lump of cod. Rang my BCN (first time i spoke to her since february) Said i can't cope with this any more.... she said she would get it sorted. well this morning at 9am she rings me. My Onc has created merry hell apparently, faxed over an information sheet about titanium portals and i await another appointment as first one has nw been taken by someone else so my next onc appt will be without MRI results.....
Oncology hospital is a separate hospital to the general one. the oncology hospital is wonderful. the general is a perfect model of mismanagement and incomeptence.
2) Flu jab. Told i am high risk as still on herceptin so must have flu jab especially as am going on a long-haul flight. Booked 3 apts at my GP only to have it cancelled each time as they have no vaccines. Cancelled it for 3rd time yesterday - straight after MRI fiasco. OH went storming down to surgery and got to see my GP - think he terrified the receptionsist as he is good at cold anger 9being a copper i suppose)... anyway turn out, one of the pharmacy assistants forgot to put flu vaccines in fridge 3 weeeks ago so they had to be thrown out and they can't get hold of anymore. So at 4pm yesterday, we get in car and drive to tesco where i pay for pharmacist to give me flu jab.
So you can sneeze on me all you want - i am immune....
Elaine, get well soon. You have to be fit and in fine voice for bunnyfest karaoke. Seriously, hope you are feeling better soon.
I am sooooooo much looking forward to Saturday. What a long way we have all come from when our warren was first inhabited back at the end of march. Has this summer been real or are we going to wake up and find it has all been make believe? If only! but we have come through it and have helped one another through it. Saturday is certainly going to be very real and I can't wait!!!
right, now to make that percussion instrument ....
Morning all, well woke up yesterday with sore throat, earache, and a cold great!!.Then managed to slice my hand open while washing the dishes , a glass had broken in the bowl, so not feeling too good. I have instructed everyone today that i am staying on the couch to make sure I am fit for Saturday , you will have to put me in the corner when I arrive so I won't spread germs. Have not got a instrument as yet, but will phone a few friend today and see what I can do. Pixie so sorry things are tough, just make sure you are looking after you, and you must rest. Hilary have a safe flight and see you all on Saturday. Will try and post later if I can lift my head off the pillow, feel rotten. Love to all Elainexxxx
Thank you for all your lovely messages, can't wait to meet you all.
Things still tough here. OH is really down, a proper Eeyore, and so things get all out of proportion. His dark moods are quite palpable and today the 2 rescue dogs ran off when he was walking them after rabbits. So immediately he goes off on one about them and it has lasted all day... And i get anxious.... Reckon we are both ready for this holiday.
Mother, auntie, Madge and a few others are now knitting blankets for Paul O'Grady. This is not because he hasn't got a duvet but rather his recent activity with Battersea dogs home. They noticed all the blankets the dogs had and Madge, who has rescued a deaf 3 legged cocker spaniel ( it had 4 legs but didn't hear the car coming) felt great empathy for all the 'ugly' dogs nobody wants so they decided to knit blankets for them. So bunnies, if any of you has odd balls of chunky wool at the backs of your cupboards, please bring them to bunnyfeste and i will send them on to mother et al.
Everone stay safe and I will see many of you this weekend.
Just hopping in as this is probably my last posting before Bunny Feste, as I fly on Friday!!!!!!!!! Got Bunny Ears - tick, bunny presi - tick, percussion instrument(s) - tick (Ambarose if you don't have time don't worry, as you can have one of mine). So if there is any more shopping to be done for Bunnyfeste, let me know as I only have one more shopping day left.
Sooooo looking forward to it. Having enough trouble sleeping with pins & needles, hot flushes (read that as totally drenched) and now excitement for Bunnyfeste!!!!!!!!!!!!
Now better go and round up the punkawallahs and make sure they have got their passports & punkas in working order.
Just a quick update from me. I had three appointments back to back on Friday. The BC wing was heaving because there were at least 3 clinics going on but thankfully my BCN sent me a text to forewarn me in case I needed to go to my appointments in a different order. I love her pragmatism!!
So in in the end, I went for my drainage where they used ultrasound to check for a "pocket" to stick the needle in and drain. Thankfully the area they used most was still numb from surgery! They took 180ml if fluid, which apparently was quite a lot.
Next stop was the med oncologist to discuss ratiotherapy. She said I'll need 25 sessions because of the no. of affected lymph nodes. They will target the chest all the way to tge collar bone and the armpit I will have to wear that jelly thing throughout the whole time. makes me wonder what state my chest will be in afterward!! I have also been warned that because I'm black I may have permanent dis-colouring. So bring on the rose-hip oil afterwards
They are leaving the tamoxifen discussion until they have checked that I can take it - certain drugs make me severely anaemic. Though I dont feel too worried knowing that I can come off after two years, say, if I wanted to start a family.
Then physio for my cording: they were impressed with my range of motion despite the surgery and cording. I have some extra stretches to for the cording. I also pointed out the tight vein from chemo, so she'll work on those next session when the hypersensitive pain should have gone.
My radiotherapy planning won't be Untill mid-November, so it'll be almost Christmas by the time it's over. Given that I worked full time through chemo, I decided to stay off work after the surgery till radiotherapy was over.
Guess I was optimistic when I said "see you at the end of November" to me colleagues!
Someone asked about lifting but I cant remember who. I noticed a tiny hump on some of my nails, near the cuticle end. Then when the nail came away there was some nail tissue underneath, about half the length or a proper nail. Not painful but sensitive as if I’d cut them too short. What I did was to wear plasters on the nails until the sensitivity went away.
Re: pins and needles: I had them after the first dose of tax along with lots of pain in my hands and feet. I was prescribed a high dose of paroxetine (bit B6 I think) for a a week and it cleared up. Any other problems were mild but sod’s law, my nails started to fall off 6 weeks after my last chemo!!
Margie – congratulations on finishing the active treatment! Do you have any meds to take? Have fun in the gym, I can’t wait to get back to the weights myself.
Vanns, I did the dark nail polish and they still dropped off. You didn’t make them fall off by stopping – don’t think that.
Pixie – I can empathise with the idea that your mind is screaming at you to be active while your body is struggling. Does it help to plan your act ivies and limit yourself to those? Or would you be tempted to do more? I joined a support group for young women with BC and we talked about ability and getting back to normal. Someone said the trick is to imagine what you think you can do…then do half!! Something I did must after the mastectomy was to spend a day out and about (within reason) then spend the next day at home. That way I didn’t feel completely idle but still got some rest. Is that feasible?
Southpool – I was really angry on your behalf regarding the appointment timing so I’m pleased they are taking you seriously now. If they start slipping though, you have to call them on it. Hopefully they’ll make sure they don’t do it to anyone else either.
Well, what can I say except Pixie, we all love you and are wishing you well- we are so lucky to have such a great group of bunnies led by chief bunny so look after yourself and listen to us. Rest if you need it and on holiday just go with the beautiful scenery and the sheer indulgence of seeing somewhere new whilst being driven!!.
Percussion instument! well thats a challenge- I am so busy st work this week that I have no time for anything especially as every afternoon I am having rads and yesterday had 2 hour wait so did not get home till 8pm. I did feel so sorry for the staff who had been there since 7am and had machines breakdown etc.
rachel, have just had boiling oil splash onto my hand whi;st cooking. Carefully, I made sure it was the one that cannot get lymphodaema so feel vvery pleased with self!! Actually it was obviously just luck!.
Love to all others
I forgot to moan, reading some info on trying to avoid lymphodaema yesterday, try to avoid cuts burns or insect bites on the affected arm.
Seriously, when did you last think "I am going to burn my hand, shall burn the left or the right"? And I'm not sure how to communicate this to the insects.....
apologies for being awol again. I seem to struggle to find the time to get on here now I am not welded to the sofa anymore. Apologies also for moaning about my split boob, I know I am lucky to still have them, at least hopefully lucky, these things can be dangerous. If anyone is finishing rads my split was about a week after I had finished and was soooo much more comfortable after being bandaged. Not glamorous, but comfortable!
Vanns, so so sorry about your little terrier. It is os hard to say goodbye when they have helped you through so much. Your post about premature babies made me think how much I have been through. Toddler was a prem baby, only 5 weeks early but less than 4 pounds and needing intensive care, and that was less than two years ago. Since then I have had cancer, cancer treatment and lost a fantastic job that I loved. You are right about the end of treatment feeling like getting a prem baby home, very scary.
Campo, no pins and needles, but my ribs ache on the rads side, and my hips ache. The hot flushes are waking me up about twice a night. I either seem to be boiling hot or freezing cold. There is no inbetween!
Pixie, I would tell you to have a rest, but you didn't even do that while you were having chemo, so I am fairly certain you won't now!! You should do though.
Margie-well done on getting through the rads
Southpool - well done on getting your appointments sorted. I think you have been amazing to carry on working throughout. I held my bunny paws up long ago and used to take a coffee and my kindle to the waiting room. On the few occasions I didn't get a chance to sit down I missed my quiet sit. I am not sure at all a man would have been treated any differently, I am pretty sure we are all cancer patients together, although I have never felt like one!
To all those I haven't mentioned by name waving my paws at you, and looking forward to Saturday
thanks for the info about the nails. It's reassuring. S far it just seems to be my right thumb nail, though I'm sore half way down my left index nail and can't quite tell if something is happening there too. Last Christmas I had beautiful long talons in a gorgeous sparkly red varnish helped along with gelish polish, but still all my own nails. This year .... Mmmmm. No comment.
Like you, also like Pixie and probably all of us, I hate the way I look right now. I had to go shopping yesterday because none of my trousers fit comfortably any more. I bought two pairs of M&S stretchy pull ups. Comfort not style is the order of the day right now, as you'll see on Saturday. I do think what the heck when it comes to my bald head though. I got so hot in M&S yesterday, also in John Lewis, that I whipped my woolly hat off and went commando, staring everyone straight in the eye in case they dared to stare back at me. Stupidly, I'm actually more concerned that my baldness might upset other people rather than that it might upset me!
Sara your feet sound very much as if you also have palmar plantar, like me, the glass, the weird sensation behind the toes which I think you'll find is probably caused by swelling of the soles, all typical symptoms.
Hilary, I don't have pins and needles exactly but the soles of my feet just feel 'peculiar' - especially the area just behind my toes. Also one of my heels gets sore if I stand/walk for any length of time - as if I'm standing on glass.
Margie - sounds like your nails are splitting the way mine did, I only have one fingernail left now and that will split soon as well. They seem to split at the point where the TAX 'lifting off' meets any new growth... for me that meant being left with about a third of a nail - and even that is ridged and flaky. With my nails I found that there was a microscopically thin bit of new nail growth underneath the bit that comes off - but it doesn't give a lot of protection. There's no breaks in the skin, but obviously my fingers are very sensitive and I've been taping them up to protect them - and also to cover them up as they look frightful. My hair is also growing extremely slowly - it seems to have got stuck at 1/4" and is pretty patchy - looks moth-eaten!
Pixie, with my excess weight, appalling nails, lack of hair, extra wrinkles, no eyelashes etc I am also pretty fed up with seeing a decrepid alien in the mirror in the mornings! However, just as the memories of the horrors of chemo are beginning to fade, I'm sure that on the anniversary of our first bunnyfeste we'll all be looking and feeling so much better and will find it hard to remember just how weird some of us felt we looked. All this will pass, but I know it's not a lot of fun going through it, especially as you've had more complications than most - I think I can safely assume that 'patience' is not your middle name?!
Pixie, I echo what everyone else has said. It is a slog, but you will get there and we will be with you every step of the way. I was just thinking yesterday, before I saw your message, that I your journey must seem never ending when you read postings from those of us who have now finished with active treatment, but keep those bunny ears up, wiggle your bunny tail and above all keep smiling. Well, try to anyway. I am sure you will enjoy your holiday comes you get there. What a wonderful time to be going to New England. I am so envious .... Except that I don't 'do' envy. It isn't in my personality mix! Can't wait to hear all about it when you are back. And definitely it will be so much better for you than Lytham St Annes .... Say no more about that particular suggestion except to say your mother obviously cares very much about you even if she does get it so wrong on what would do you good!!
Southpool, the mind boggles as to the amount of noise we are likely to make with our percussion instruments! I hope the hotel is well prepared for this raucous bunch of mad bunny ladies who are going to descend upon them this weekend. Hope the room is well out of the way for everyone else's sake. Actually I don't really care if we disturb others .... We deserve this weekend. I will get my thinking cap on and decide whether to go home made or bought.
Can anyone tell me what the skin - or flesh - is like underneath finger and toe nails??? I think I am definitely going to lose my thumb nail as it has cracked widthways across the centre and I can't imagine what it is going to feel like .... Maybe it is best that way as maybe the imagining is better than the reality.
I've no spots on my scalp .... You watch, they'll all appear on Saturday .... But I have very vry very slow growth. I long for a time when there is no shiny scalp catching the light all the time when I have no hat on. The hairs on my arms and legs seems to be growing quicker!
I'm racking my brains on things people have said on recent postings that I wanted to be responding to, but as we have flipped over onto a new page of postings I can't check back without losing everything I have written so, as usual, I send everyone big hugs and can't wait for Saturday.
It might seem a long haul but we will be with you every step of the way. You might have had a busy social life and looked great but now you have a group of friends that would practically give up their lives for you ( and the twins) not many people can boast that !!
I am working from home this morning, so am having a lovely lie in and a Internet catch up. Pixie you poor myxi bunny, as others have said focus on your holiday it will make you feel better I promise. On our holiday I felt like the old me for 2 weeks and even got my mojo back ! It will be the best tonic.
My taking control of rads timing seems to be working and last night they were running 2 hours late so I didn't leave the house until 1/2 HR before I was due to go in & waltzed past all the people who had been sitting there for 2 hours and was in and out within 1/2 hr. I am now more relaxed on the table & drifted off o Campos spa last night & neatly nodded off!!
Hilary I don't get pins & needles but do have terrible restless legs & my fingers are still very sore so assume it is the dreaded tax working it's way out my system. My hair is growing back very nicely but I do seem to have lots of spot/bite type things on my scalp. Has anyone else had this or have I just been savaged by an over enthusiastic mossie?
I have volunteered to organise Bunnyfest Karaoke or community singing as a better description. In order to make this as cheesy & loud as possible (I love a bit if cheese) we need percussion.
So Bunnies please can you bring a percussion item with you, homemade or otherwise!!! I am out on the hunt for a tambourine as I fancy a bit of shaking along to the music, but anything that makes a noise will be good. I know we are going to be laden down with ears, bunny presents & boxes of tissues but please make a space for a little something noisy! Thanks.
Thanks to Patchit & Kathbury for nipping in to wish us well, it is a lovely thought.
Ditto everything Sara12 has said - take it easy - your body is telling you to slow down - SLOW DOWN!!!!!! or else us bunnies will come and sit on you. REST! After Bunnyfeste enjoy your holiday, rest when you need too and as Sarah said drink in the scenery and do nothing else. Otherwise we shall ask your Mother and Aunty to book you in. Big Hugs & kisses to you xxxxxxxx
Thanks for the info on the pins & needles, suffered again with numb fingers and hands on both sides last night but nice to know I am not the only one - you know what I mean.
Cant wait to meeet you all - going to be some day!
Thanks to Patchit & Kathbury for popping in to wish us a good time.
Oh help....... Just after i wrote my last moaning post, mother rang. Back from Blackpool and lights were lovely, best for years, and how do I feel about having a fortnight in a convalescent home in Lytham St Annes?
It should be me putting the gruesome twosome in a home not them putting me in one. They don't think i am up to america (they haven't seen mr for 4 weeks)....
Is this what it has come to I ask you? This time last year I was in Venice, weighed 9 and a half stone, fabulous clothes, busy social life, had more energy than anyone I knew. now, my mother wants to put me in a home and oh keeps telling me he wants back the woman he married, his sexy vibrant pixie.
Shall run off and join the circus if they don't watch it. I may be physically frail but me brain is as quich and sharp as ever.... Evil giggle..
Pins and needles. I have them in my thumb and outside of my hand due to nerve damage from portacath mess... And that bloody thing started oozing again today ascwell....
I can understand those of you finishing active treatment feeling a bit abandoned, but can't help envying you. I have another 14 cycles of herceptin to go and it feels like for ever. Like many bunnies, i have never been properly poorly before and can't bear not being able to do all i want so i keep fighting and pushing myself. Need to listen to Sara and have a look into this putting me paws up stuff.
I too have pins and needles in both feet and hands and very sore ends of fingers. The nails on myhands are also trashed. I definately think it's to do with TAX but mine only started when I removed the dark nail polish. Stupid me.
Margie, well done ! It's feels great but also quite scary doesn't it. I have likened the end of active treatment as a bit like women who have premature babies. They long for the day they can take their babies home. But when that day comes they realise that they are now all alone with no doctors or nurses to help. We have longed for the end of treatment but it feels strange not to be under the watchful eye of the chemo unit or rads dept everyday. You just sort of get used to them being ther all the time.
Pixie I know you are struggling at the moment and it's mostly because you have been so myxi but you have to keep going. Please try to take a step back from things that aren't essential. Stick to things that give you pleasure or that you enjoy as they are much less tiring. Failing that I'm sure the twins would say something like "buck up or bugger" off
Got ears and gift now so bring on the feste!!!!!!!!!!
Hi bunnies. Just dropping in from the June thread to wish you all a wonderful weekend away - complete with your bunny ears. I have been regularly reading your threads - Pixie thank you especially for keeping my spirits up with your amusing posts, you really have cheered me up on days when I certainly needed it! Hope you feel better soon, and to all of you have a great time. XX
Pixie, sorry to hear you're having such a hard time and feeling down. Pointless probably, asking you to slow down this week, but when you go on your holiday you have the perfect opportunity. Let your OH do the driving - if you need to sleep in, do it, and don't think you are 'wasting' your holiday, by doing so. Don't try to do long hikes - it's OK to park up somewhere and relax and drink in the scenery. And from what you said in a previous post your OH just needs you to be 'present' - in the moment, with him, not thinking about anything else - and there's no need to rush about to do that. If you keep pushing yourself the way you do it will only prolong the period of feeling ill - please just 'give in' occasionally!
Elaine, Hilary and Margie, I have the pins and needles still too, in my fingers and my feet, I am not on any hormone pills, and Dr, says shes had loads of people whose had Docetaxol with the same complaint, I also have the hot red feet still. My Dr. has increased my Lyrica (pregabalin) to see if it helps as was on a low dose, so we will see if it helps (only got the higher dose today so early days yet,) if it works I will let you girlies know.
Pixie, never heard you so down, you are the most upbeat person on here, sorry you feel this way and I sincerely hope you feel better soon and get out of the doldrums. Maybe you are and have been doing too much, you certainly sound like you have been. Take it easier and rest, this maybe all you need to feel a bit better.
I got another sick note from Dr. today, so not going back to work for at least another month. I just dont feel like work, although if I pushed myself I know I could, but sod it ! another month on SSP will be fine ! after all its only 2 months that Ive been on it as did return to work somedays whilst on chemo, but now, I feel just too lazy !!! (and me feet and fingers are sore too of course!)
Have a great weekend next week bunnies, and have a drink for me ! xxx
Just popping in from the March thread to wish you a lovely time at your bunnyfest next weekend. Hope you all have a fantastic time and its the first meet up of many for you. You will probably know that the marvellous marchies will be hot on your heels, we are meeting up in November, also in Birmingham.
Sorry to read how some of you are still struggling, I wish you good health and sending positive vibes your way.
WEll done Margie on having it all over and done with and just before Bunnyfest too, how fantastic is that?
You kow i can't believe how niaive I was. i really thought that after surgery x4, chemo and rads, I would be well again. I never considered i could be poorly still and just sort of thought a daily pill and the 3 weekly Herceptin would be a breeze. So much so, we booked this holiday in America flying out day after Bunnyfeste.
Well to be honest, and this is the only place i can be this open, I feel worse now than I did on chemo. My onc pulled me off letrozole 2 weeks ago so at the moment am on no hormone therapy (scary as I am 8/8 ER+) so am ust doing the herceptin. But have just finished another 7 days of anti-biotics becasue of toothe and jaw infection - still very sore - and i just feel about as pants as i have ever felt in my life.
I am not sleeping at all well, i have what feels like constant hot flushes, my weight has spiralled until i feel like Pixie the pudding and nothing fits at all, the fatigue is now chronic, i ache, am stiff and the nerve damage in my right arm means i can't even dress and undress myself. I just don't feel at all enthused about going off on a touring holiday to America for 10 days. I would rather go to bed for 10 days - no OH, no dogs, and more than anything no blooming work. (teaching all day tomorrow and not looking forward to it as am doing effective Presentation Skills teaching and as me mother would say you can't make a silk purse out of a sows ear. In this case i can't make Tevor McDonal out of Bill and frigging ben!)
Gosh, bet you can't wait to meet little miss bundle of joy here this weekend....
Oh, I will pull up, push myself onwards and upwards, I always do but sometimes life is just too blooming full to fit al this cancer malarky in.
there will bugger off now to back of the burrow and pull me ears over me eyes.
Well lovely bunnies, I'm done! No more surgery, no more chemo and now no more rads. Last one was this afternoon. I cannot believe it! OH and I fell into each others arms and hugged and hugged when we left the hospital. It's strange. I feel elated, yet I feel almost deflated.
My boob is red and sore, but hopefully won't split. Fingers crossed. I was told today that I will have another appt with the radiology onc - in about 5 weeks, just to check everything is ok. Then I see the clinical trial team, including the chemo onc or registrar, just before Christmas, then back to the surgical team who manage the follow up over the next few years.
Hilary, I still have some pins and needles in my hands - I've assumed it is part of the palmar plantar syndrome. I also have stiff wrists and ankles which I've been told is probably due to the anastrazole and this should lessen as time goes on. So awful to feel old and stiff, but like Little Chick I'm sure exercise helps so I'm off to the gym again tomorrow. No matter if I dont do much, it is all in the right direction. I've been told that there is research that shows those who exercise do better in recovery than those that don't ..... so come on, get to it bunnies, get hopping!!!!
No time right now to mention everyone except to send love and best wishes. Saturday is almost upon us!!! Fab. Can't wait.
Hi everyone, Hilary I also get pins and needles on both sides, but mainly on the side where the chemo was infused. I am also suffering achy shoulders and top of arms are sore, I spoke to the doctor about this and he did say that the pins and needles could be because of the cording I have from the chemo, I am seeing physio on Wednesday so will be looking hopefully to have this sorted out, as its painful, and waking me up in the night. My joints are also sore and I feel about 80. Only four days to go before we finally meet up really looking forward to meeting you all, what a day its going to be!!! Try and pop back later Love Elainexxxx
Does any one else suffer from pins & needles in their hands/arms. Last night bad pins & needles which then moved into hand and became more of an ache, then moved into lower arm on the affected arm ie. lymph nodes removed or is this an se of Letrozole. Suffer from pins & needles in both hands/fingers on occassion but last night was bad and was really quite uncomfortable. Hope you are having a good day bunnies.
Hi Everyone, just off to Heathrow, but needed to share this:
I used some depilatory cream on my face, to get rid of my angora beard. It did work, but now have designer angora stubble. All the rage in Portugal, so I hear!
Love to all, see you soon!
Southpool - so pleased you got your rads sorted out - as you said, you shouldn't have had to complain to get a reasonable solution. Hope the stress decreases now - especially after your relaxing weekend in Wales. The icecream sounds lovely - I'm a rhubarb fan too!
Hadn't realised that rads could cause you to feel hot in general rather than just around the target site. Two more weeks to go, then I'm done.
You're very lucky with the weather. We had a lovely day yesterday, but this morning was woken by one of my cats landing on me with very muddy paws and once I'd managed to open my eyes all I could see outside was grey and drizzle. Hope it clears up later, but there's no wind, so that may take some time.
They're interviewing Bob Champion on R4 at the moment about his cancer and he's been saying how horrendous his chemo treatment was, and how at one time he felt like giving up.... nice to hear someone being honest about it ....
Anyway, have a good day everyone, whether in sunshine or drizzle.
Sara I am also warm from rads & my hot flushes have increased, but think that maybe stress related. I also have bad indigestion which I never normally suffer from so assume that is related.
Friday was the first of the new rad regime & I arrived at 5.45 as agreed and was the only person in the unit so was seen straight away & everyone was very pleasant. it shouldn't need me to complain or offer the solution to get a change, but at least it seems to have worked. My work regime seems to have caused problems with all the healthcare professionals I have dealt with. I can't help but wonder if I were a 48 year old man in a business suit there would be some recognition that the nature of my job makes it hard for me to be flexible and solutions would be discussed from the outset. The only exception has been my wonderful onc
who gets it completely and worked with me to help make it work, but then
she is a woman with a very senior job who loves her work so it is normal to her.
Both me & OH have been very stressed this week so luckily have been able to come down to Wales. The sun is shining and it is absolutely stunning at the moment with the autumn colours & light, so we are off or a walk along our favourite beach shortly and may just have another ice cream! Yesterdays icecream was a scoop of rhubarb combined with a
scoop of custard, it was fabulous, today it maybe strawberry combined with White choclate. The shop closes for the winter next week so it would
be rude not to have another one.
This time next week we will all have met each other! I am so excited to finally be meeting you all.
Hi all - did anyone else feel hotter than usual during your rads weeks? I'm finding I'm needing to keep the car windows open and turn down/off the heating at home. I'm post-menopausal and not on any other anti-cancer drugs, so don't know what else would be causing it.
Met up with a friend this week who reminded me that I had stayed at the Hilton Metropole before. Talk about chemo brain - I had completely forgotten that I'd attended a conference there about 6 years ago. That means I've probably been in the Norfolk suite before too, since we had various breakout sessions. From what I remember it was all very nice and my only gripe was the price of coffee in the bar! While I was on the website looking at the photos to jog my memory, I noticed they were fully booked next weekend, so there may be some quite big events on at the same time as ours.... I doubt they'll be wearing bunny ears though. Last time I was there we had to wear Halloween fancy dress for the evening do.... I have to say that I'm normally 'allergic' to fancy dress, but can just about manage the ears!
The clocks change next weekend - so those of us staying over and coming by train can either have an extra hour in bed, or get up and catch an earlier train home than we might otherwise have done. Will depend on how late the night is before, I think!
Anyway, I'm really looking forward to meeting everyone.
Just popping in to say sorry to hear about your terrier Vanns. You have been very brave and Im semding you a big hug xxx
Had a fab meet up with Big M and think it might become a regular occurrence! Was nice to meet a friend for coffee like normal And it really was like meeting a good friend. Cant wait for bunnyfeste next week! Got my gift and a snazzy pair of bunny ears too so all set!
Hilary - yes it's me that's the dog trainer. Had to scale back a lot this year but hoping to launch properly next year. Part of my life change lol!
Congrats to all our NEDs! And Pixie try and put your feet up this week at least!!
Hugs to all