I will need to send a cheque for various reasons.
Is it okay if I don't stay over? If I have to for everyone to get the deal I will but would prefer to go home. I would prefer a double room - would anyone share?
Are you prepared to give me an address to send a cheque to, maybe on a personal email rather than broadcast?
And it's 27th October, isn't it?
I posted a lovely long post from the big chair & then bloody lost it. I danced into the chemo unit today & bumped into my surgeon who said she could tell it was my last one by the big smile on my face! Saw the onc & she has given the final ok for our holiday so the planning starts in earnest.
Chemo confession time - the nurses have got my cannula in on 1st attempt for each one of my treatments. I am impressed with those of you who have had multiple attempts - even 1 traumatises me.
The St Edriods are doing their work and I am completely wired, awake at 4am planning strategy workshops for my first week back in work. OH is sick of my endless chatter, but admits it is preferable to my doom & gloom of a couple of days ago.
Thanks for the messages for Bunnyfeste, I will check banking shortly.
Echoing Vanns thank you all for your love & support I couldn't have done it without you all. Bring on Bunnyfeste.
Much love & Virtual Hugs
Ps Just can't let it go but my drug ringer bloods were great again:
HB 11.2 ( the diet of steak & black pudding!)
Hi again everyone, just to say that I still havent rung the radiography dept yet as spoke to soon regrding feeling that tax 2 was much better,and i felt reasonably ok, then, went down with the dreaded TAX trots, and spent all day yesterday and all night between bed and loo!!! Totally washed out today, but forced getting up and a shower and dressed, still a bit woozy though! Me and my big mouth thinking I was going to be fine!!!! I still dont have any pains though, but now Ive said it, on email,will probably get them !!!! No please ................ !!!!
So, Campo, thanks for explaining what happens in Rads, I may have to quiz you occasionally, when I start !Will ring hospital tomorrw when I feel better, cant be bothered now, just want to lay on sofa!
Oh, yes, Big M, Pepihorse was the name of my very first horse, when I was 14 years old, I had him from when he was 6 years old until he was put down with surgical colic at the age of 34, so I had him a long long time, and although he was a very naughty horse, with alot of character, out of all my horses I ever had after him, he was my favourite, even though, we hardly won any competitions, and he would charge at low hanging branches, so he could get under them, but no room for me! leaving me hanging on the branch and other very naughty things too long to list !!! If there was a way of removing me from the saddle, he knew everyone of them!! still was good fun though!!
I dont know why I chose it as a password, just sort of came to me!!maybe because I was feeling low when I joined this site and Pepi was the love of my life for many years !!! Thinking about it, he wasnt really a horse, he was 1 inch smaller than a horse, so more of a pony really, so I should be Pepipony !!!
Back to sofa now, excercised enough, and blinking fingers are peeling and sore!
Take Care everyone, and hope you all feel a bit better soon ...........................
Canula first time. Chemo finished, hopefully for ever.
Thanks for your love and support completing this first phase of treatment. Couldn't have done it without you all.
Looking forward to bunnyfeste
Off now to baracade the drive up to stop the truck. I'm armed with morphine !
Hyzenthlay glad you have reappeared - quick or you will miss the boat.
Just about to head off for no. 3 rad. (read that as I am getting the boat ready to swim with the dolphins, with the bunnies who are able and all other bunnies are in their hammocks or lounging on the cushions on the decks of the boat under the shade). Those in the chairs today - hammocks ready - check, cold drinks - check, punkawallahs - check. Margietee - Hammock ready - check!
Well, I'm in the big chair at 1pm for my last tax and I feel very stragely apprehensive today. I dont know why. Perhaps something to do with the fact that my lovely 'best cannula' chemo nurse said we only have a couple of week veins to try for in my right hand today. Hope I get him from the get-go today and don't have one of the others 'having a go' first. They usually end up calling the best vampire after about 4 attempts by others. Also I am so unbelievably tired today hving had very little sleep last night and washing machine head going round and round. No doubt due to x6 prednisolone and x8 dexamethason yesterday. Mega double-double up dose of steroids. I'm holding hands with all today's other bunnies in the big chair.
Vanns, you have such a wonderful turn of ideas. I love the idea that we are just the same as Olympic athletes. Just different goals. Brilliant!
Gadget--gal - welcome back. I have mentioned you in a n umber of posts saying I wondered what had happened to you.
Little Chick, are you OK?
Christine, pleased your Dad is OK.
Hilary, pleased to hear rads have started OK. I will need my hammock in a quiet and peaceful spot for the next few days - mind you, all the pitches are perfect.
I know I have lots lurking in my head that I intended to say. but my mind always goes blank once I've set up the laptop or the ipad. How I wish BCC would sort out posting direct from Android mobiles again. I like to respond in the moment when there is something to say. Ah well, cant have everything.
Sounds like a few of us have been feeling really down recently. I don't think it's surprising. Yes, we are strong capable women, but we have also been through a lot with this awful chemo - we'd have to be superhuman not to have a reaction to it - and I. for one. am not superwoman! I wouldn't wish the type of chemo we've had on my worst enemy.
Anyway, mentally I'm feeling a lot brighter now - but physically I am still really weak and get breathless at the slightest exertion, so I guess I have to be patient. I had a long chat with my BCN yesterday - haven't really spoken to her much before, but the clinic was quiet for once so she had time. Couple of interesting things came up. She said that it can take a year to recover fully from Tax - apparently you can be fine for a while and then get episodes of extreme fatigue cropping up again from time to time so I guess we'll just have to be patient and take care of ourselves.
She also confirmed that the sparse covering of blonde hair that I have is 'chemo hair', not proper hair and that it's likely to take 6 - 8 weeks for proper hair to start growing. She agreed that when I can see signs of proper hair regrowth, (which she said would feel very different from the chemo hair), it would be best to shave the chemo hair off. She also said it can sometimes take quite a while for your taste buds to get back to normal, unfortunately - I'm so looking forward to having some lovely fresh food that doesn't taste 'tainted'.
Found out yesterday that tooth where filling fell out can't be saved as it has split vertically (how can that happen?) Have temp filling because dentist said I needed to be fully recovered from chemo before extraction as it's likely to be difficult - just what I wanted to hear, not - I'm such a wuss when it comes to dentists. I already had a wobbly tooth that needs to come out so at this rate I'll end up seriously depleted. Hope chemo doesn't cause any more wobbly teeth - can't afford to lose any more.
Went to hospital yesterday only to find my surgeon was on holiday. However, saw someone else who said tumour had shrunk again, which was a relief, so will definitely have WLE now and op has been brought forward to 29th August - only 3 weeks away. They said it was small enough now not to make a significant difference to my shape when they operate, although apparently the rads afterwards can cause the breast to shrink, so could still end up a bit lopsided I suppose.
Anyway, good luck to all the bunnies having their last chemo this week. Hopefully by October we'll all be feeling considerably brighter!
Coming out of lurkerdom to say hello and Hilary, I would like to join the dolphins today as I have help from St. Eroids.
Good luck to everyone today, especially if you are on your last chemo - yay, you made it! I had tax yesterday, 2 more to go (combination of starting late in April and 4 x fec, 4 x tax) so hope to hear tales of recovering from chemo. I have rads after that, starting sometime in Oct, but I don't know any details, plus tamoxifen.
Like other bunnies, I found the tax truck just would not leave, in fact I have tiredness pretty much the whole three weeks, so I have to pace myself if I want to go out and do anything eg day of rest means I can go out for a few hours in the evening even on week three.
I have some some downy hair growing back on my head!
Just a quick hop in to wish Pixie all the best with your first Herceptin.xxx I started mine with my first tax..so had no 3 last week and not noticed any side effect other than usual truck but will be interested to hear your views. Am sure you will sail through.
Update on the garden bunnies.....they are being very naughty.........seems like they are excited about something...caught a bit of whisper and they'd like to come to you Bunnyfeste...lolol though how you'd manage 8 naughty baby bunnies I do not know....
Morning Bunnies - well done Pixie at getting organising the hotel etc. I have pmd Southpool. Sooty as the other bunnies have said listen to your body. Gadget-Gal welcome back.
Had my 2nd session of rads yesterday - still dont like machine but feel not too bad today.
About to walk dog and have busy day ahead so will pop in later.
Lovely to see the warren busy again. For all those in the big chair -good luck for today. For all those at the back of the warren not feeling so good the team and I are on our way to get rid of all those nasty SEs, this also includes those who are low and trying to hide from us - you cannot hide from the "healing paws".
Quick role call for the gentle exercises on the beach this morning and you can also let me know who needs a hammock and who would like to join the dolphins today. The chefs are also waiting to find out what delights you would like today.
Pestering Pixie, Chrisp1e, Little Chick, Southpool, Big M, Vanns, Sara 12, Libby 12, Sameelee3, teabelly, Namar82, Sarabee2012, Pepihorse, Ambarose, Rachel1P, Margietee, GMT, Kittyqueen, Gadget-Gal & Me. Okay who have I missed because we are not starting without you.
Got to go as dog is waiting to go for her run on the beach.
Very big hugs & kisses to you all.
Hilary xxx PS Weather sorted - good weather on its way.
pixie - thanks for all your work for Bunnyfest. The hotel sounds great.
southpool - will be in touch with you re: money.
Thanks to everyone for wishes re: my dad. He is home from hospital now and feeling much better.
Am now on 3rd week after my final TAX. Starting to feel like my old self again. Have a metallic taste in my mouth at times but not as bad as it's been and not as tired either. My nails on my right hand are awful though with ridges and lines. They haven't lifted off the nail bed though.
Regards to everyone especially those of you who are working their way through SEs.
Vanns just popping in before bed and would say definitely speak to your local Macmillan team. They have been brilliant for me more so than the BCNs who are lovely too but I just clicked with my Macmillan lady and she's been a tower of strength. Hope you find someone to help and listen.
Night night all
Its me in the big chair for the last time tomorrow. Virtual hugs to everyonefeeling low. I have been having strange reoccurrence thoughts and have been quite wobbly since being back from london. I tried to contact my BCN ( the rubbish one) but she was off sick for eiget weeks. Tried the good ones secretary but she is still not back from her sick leave. I think I might need a bit of councilling so might try Macmillan (the group not the 3) does anyone have any experience of this?
Southpool I will be in touch rearrangements and money ASAP.
All those that are struggling looking at the fantastically fit athletes and feeling a bit jealous, don't. We have so much in common with them. For years they put up with pain, injury, sacrifice, no life, sleeping in oxygen tents so no sex life. All in pursuit of a single goal. Our goals are just different. Ours is life but the battle and courage is the same. If only we had known howstrong we could be we would probably be Olympic athletes too. Incidentely we have enough bunnies to make an Olympic hockey team or two teams of Eights rowers !
Good luck to my virtual chums tomorrow
Dig in, let's just get it done
I feel like the Prodigal Bunny as I don't think I posted since I had my second chemo. There were lots of things goivng on and I think (she says!) I subconsciously withdrew in some areas of my life.
So... The cold cap failed after FEC 2 becauone the agency nurse didn't give me time to wet my hair. I remembered about 30 seconds after she put the cap on but then she said it was fine because my hair was cornrowed and the scalp was exposed enough...and I believed her. By the weekend I'd lost 50% thickness and had had a huge Friar Tuck bald patch. Of course, given that the cold cap only has 50% success rate, the most I could do was tell the Ward Sister in a light "FYI" conversation. (and i havent seen that agency nurse since) So I got my head shaved, and felt fine about it after that, like I'd confronted the evil baldness.
THen there was the building work that my mum insisted on starting the week before my chemo. Well that upheaval caused me many upsets, particularly with my chemo brain, that I was crying some mornings before leaving for work. Things not being where I left them and me scared I was losing my mind. Dust everywhere made me paranoid i was looking like a mess and a "victim". Lliving out of boxes. Yeah, good times!
Luckily the builders cleared out just as things got a bit harder: I got a painful sensitivity to cold, so bad that if i caught a draught anywhere, that area wpuld ache terribly like joint pain or rheumatic pain. So, I've had to avoid anywhere that's air conditioned. in other words, most public places and public transport. I also cut my work hours to 4 hours a day. They can't control the air conditioning, so I had to spend less time in the building. One good thing was, that with my sore feet and fatigue I got a parking permit for the offce car park, so I could still drive to work during the Olympics.
Re side effects, I had the normal things: fatigue, phlebitis, hand/foot syndrome, stomach aches. FEC also caused me hyperpigmentatn on my face, hands and feet though it's peeling off now. I don't know if that's more prevalent in black people(?)
Plus, I don't know of its because im 33 but I did get a little of the "you don't look sick to me" treatment from people who work with the public. Not for special favours: just things readily available to, people that need them. Like a wheelchair, in a hospital!
Now that I've finished Tax last Thursday I'm looking forward to getting my strength back and being more active. I'll see the surgeon early September and theN They'll tell me which surgery I'll have. I'm praying it'll be just a Lumpectomy though I've had time so consider the possbiltiy of the other.
I have PM'd everyone who said they wanted to come to Bunnyfeste with the payment details, it is a bit if a bossy note so apologise in advance. If possible can people let me know within 48hrs so Pixie can confirm numbers & the send me the money ASAP (se allowing).
Today I have felt much better combination of cold easing off, St Eriods, Lee's post allowing me to put things in perspective & spending time at Campos spa. I have had a successful day working from home & am pleased with myself for not putting pressure on myself to be in the office! Properly got my positive head back on thank god.
Final tax tomorrow & I have ordered lovely cupcakes for the chemo unit & have happy bags for the lovely WRVS ladies who have kept my OH plied with tea. Have lots of questions for my ONC, but MarGie has answered a couple for me on eyes & teeth!
I have loved the Olympics and am now looking forward to the Paralympics although my eyes can't take much more watering & tears at medal ceremonies.
Virtual hugs to everyone in the big chair tomorrow, we are mob handed this week - me, Vanns, pixie, Rachel & MarGie.
Sooty, like pixie said you need to listen to your body. I have been on a tailing off dose of steroids over three days, so tend to sleep a lot when they have finished. After my first fec I was awake a lot the first couple of nights, really waiting to see if anything bad happened? It didn't and I have slept a lot better on the subsequent ones.
Even if you are awake, as long as you are resting it will do you good. My advice, give in to how you feel, sleep whenever you need to, andhave either a telly or a book around for the small hours when you just can't sleep. The other problem we have had with sleeping is things going round in your mind, we call it washing machine head.
Pixie, Hilton sounds great, thanks for doing that. I am going in for final fec tomorrow (fingers crossed for bloods) so will be hunkering down for a few days. Book me in if you can't get hold of me.
Southpool and pixie, will be with you in the big chair tomorrow. Lee, are you in tomorrow as well?
Sara, Sameelee, Margie - thank you for generous comments, i think its quite a good deal too as its a real plush hotel where we shall be very comfortable and looked after.
Wonderful Southpool has offered to co-ordinate and do the finance part of bunnyfeste - and as she said in her post, will pm all of us and we will be sending monies to her. It really is exciting isn't it? Everyone must remeber bunny ears and the £10 bunny-themed pressie for lucky dip. I will bring the badges and also have one or two other suprises under my cotton tail.
Hi Sootie.... well done on first FEC 🙂 How we react to this stuff varies greatly from person to person. You will probably find that your sleep is broken for at least a week. This is becasue of the steroids you will be taking and also you are likely to be very hot and feel sweaty. Try to take in as many fluids as possible but avoide acid-based things like citrus juices.
Sleep when you feel tired. Golden rule is listen to your body, it will never lie to you. If it is saying sleep, then give into it. Make sure you have a good book by the bed and even when you can't sleep, try and rest for at least the first week. Once the steroids leave us we often experince a crash - this varies dependent on whether you are on a tail off dose or just the 4 a day for 2 days.
With your first one, it really is a matter of making note of how it affects you and then plan around that for subsequent ones. If you are sick or feel otherwise very unwell, do contact your chemo team they will do everyhting they can to help.
First herceptin for me tomorrow so will be holding virtual paws with Southpool having her last chemo - and is it Teabelly or little chick having their last?
Hi Pixie, thank you so much for doing all this- brilliant! I'd like a single room,if poss. Can do a bank transfer if you want, or have we decided on a different way of paying? . I will do whatever is easiest for you. Not sure whether to pm or to keep on the thread so that we all know what is going on. Will pop back in a little while.Will check pms as well.
Hi ladies....I'm a newbie from the August thread. I wonder if I could call on your expereience so far with a question How well do you sleep at night? Can I expect to get a good few hours or will it be a mixed bag? I had my 1st Chemo (Fec )today and Im exhausted tonight but I feel thats more from the lack of sleep last light and the build up to this morning. I would like to sleep now but worried I will be awake all night then. I tried lying down this afternoon but felt a bit sickly so couldn't relax. I'm not sure wither just to give into it and risk being up during the night or hang on in the hope that I get a nights sleep. Any thoughts would be greatly appreciated. Soots...xx
Pixie - that sounds great to me. I'd like a single room please. Could get a room a bit cheaper nearby but the convenience definitely outweighs the additional cost for me. As Margie suggested, if you PM your bank details (sort code and a/c number) I can get the money to your account the same day.
Pixie, you are a star. That sounds brilliant to me and I'm happy to be paying upfront and soon - don't want you out of pocket for more than the shortest possible of times or better, not at all. Are you set up for Internet banking so some of us can do online transfers?
Will post properly later. Too engrossed in Olympics right now ....
A business post.... have been beavering away trying to get best deal, discounts etc at a hotel for Bunnyfeste.
The Hilton Metroploe, 5 minutes from NEC, 10 inutes from railway staion and airport, have offered me a 25% discount because of who we are and why we are meeting. This is the deal:
The Norfolk Room. A private room, large enough for 25 people, in a quieter part of hotel and nicely appointed. To hire it from 12.30 - 5.30 is £300 + VAT
A finger buffet and mineral water at £15 per head + VAT
Afternoon cream tea £9 per head + VAT
Based on 15 of us attending, that works out at £51.70 each. If there are 16 of us, it's just under £50 each.
They will also give us a 40% discount on rooms if we book as part of the same contract. All rooms are doubles.
Single occupancy is £74 plus full english
Double occupancy is £94 plus full english
They will only secure the booking against a credit card - won't accept a partial deposit. This means whatever is booked will be charged for as its done as a contract.
If bunnies are okay with this, can I suggest we sort the money out asap - Southpool , will need your help bunny as best way to do this.
I have previously stayed at this hotel on business and found it very good.
Also tried the Crowne Plaza and they wouldn't give us any discount 😞
They are provisionally holding this for 48 hours.....
Hope you all manage to tear yourself away from Olympics to get back to me.....
MarGie: will be thinking of you on Friday. Hope everyone else's parents are okay too. I lost my dad a couple of years ago and my father-in-law a couple before that. Still got the mother around (nearly 80 and still ignoring my illness) and my mother-in-law (70s and a bc survivor of nearly 40 years) who are both fiercely independent so am blessed that they are in reasonable health.
Hugs, Sarabee xxx
Well I am on my good day... rather than a good week! Have been more like myself mentally so catching up on emails and calls and everything else. I was awake last night worrying that I was moaning too much on here last week but Sammeelee and Southpool have written exactly what I was thinking so thank you bunnies for making me feel that I am actually "normal" and not a big fat balding whinger! Can we go through post-traumatic stress? I have been worrying about my OH, my kids, my job, my health, my future... all in big chunks, which is not good.
Anyway, on with the motley. Hello to Southpool, Sammeelee, Campo, Vanns, GMT, Ambarose, Libby12, Nat, Christine, Big M, Wendy and Pixie. If I've forgotten anyone - it's the poor memory... I really need a list lol!!! Big M, have sent you a message about our meet up on Monday - thank goodness you reminded me lol!!! Not sure I'll cheer you up but we'll have a laugh trying. I'll be the one wearing a wig and carrying a pink i-phone... you won't miss me!!
Campo - thank you for your post today. Am always channeling your lovely posts about sea breezes and punkha wallahs and fruit juice especially when they are scrabbling round to find a vein. Also thanks for the heads up on the rads.
I had my first meeting at the Royal Marsden Sutton yesterday for my rads information. Was a big shock to see so many people in the outpatients knowing that they had cancer related illnesses. Anyway, had a good meeting with the consultants registrar who has asked me to go on a trial that they are doing to see if rads can be speeded up. Basically there are three groups, the ones who have 15 sessions and two groups who have 5 sessions with larger and smaller doses. If you get on the 5 sessions group, they will give you top up sessions so you won't lose out but the idea is that initial tests have shown that higher doses and shorter treatment times is as effective as the normal 15 sessions which helps with recovery times and less stress for the patient. I'm happy to do it especially as it might mean that I get my rads done faster. But the positive is that I know now that my rads will start mid September (3 weeks after my last chemo) and that at the very worst I'll be done with the treatment by end September latest. My OH was so pleased he kept smiling and squeezing my bad hand - I didn't have the heart to stop him! He has been brilliant but very worried over the last few weeks as I got more and more tired. Now we have a date to work towards and it's much easier all round.
Olympics - it's been brilliant and I'm watching the sailing as we speak. Not quite as warm as the Spa del Campo, but still a seaview. I have tickets to the athletics paralympics in early September (already told the hospital about it and they said that's fine) and I can't wait to go and see the Olympic park and the buildings. Super Saturday turned into Super Sunday as my OH brought me my own gold medal. Tears in the lounge as he made me stand up on a footstool and then officially presented me with my medal. Okay, was wearing pjs and a beanie hat and the picture he took of me with a shining round face was funny but for a moment we felt our normal silly selves!!!
Pixie: your post also caught a vein (I wish) with me. I don't think life is ever going to be the same again for me or my OH. In fact, he's talking about lifestyle changes and getting me fit again. I have always worked hard, brought up the kids, did school things, chaired the PTA for some years, raised money for charity and generally rushed around non-stop. We've never had much money but we've been relatively okay until now. And do you know what? I suddenly don't care. The world hasn't stopped turning and although I know I have to go back to work of some kind, I'm not prepared to put myself through the stress and agony of recent years. It simply isn't an option now. When I first got diagnosed a friend said that this was my body's way of saying that enough was enough. I had been so stressed for three years working all the hours I could that I didn't see any way off the treadmill. Not quite what I would have wanted but maybe, just maybe bc will turn out to be a big positive for me and my OH.
A long while back on the posts I said that I wanted to get involved in helping people through this sort of thing in the same way that we have helped each other. I really do want to get involved in the Macmillan work because my contact at Kingston has been wonderful. If they are starting a practical help drive - to help out people who don't have the support or family around them - then I'd love to get involved in that too. I can't think of a better way of giving something back. So there's a new door opening up for me too.
Right, that's it for now. Still watching the surfboarding from Weymouth. Campo - can you sort out the weather?
Bunnies - stay positive and good luck to those of you on your last chemo session. Can you believe how far we've come? Gold medals all round I think...!!!
I have not posted for ages because the second TAX was so awful I just hid in a quiet corner of the warren munching bits of grass and keeping a watch on all of you. My nails are lifting off my fingers which feels absolutely horrrible. Everthing tastes nasty, my stomach is windy and has a sharp pain. I have a sore throat and heartburn. I know - we ALL have horrible SEs but as someone said recently, this group understands best the sheer despair of it month after month.
Lee - I recognise that feeling of being jealous of people having a good time and I do not feel proud of myself! For me, it's the athletes at the pinnacle of fitness and health at the Olympics. ANd people in magazines who are all smily and motivated and achieving things. They obviously look forward to waking up each morning - I just think, here we go again, another crap day. Yesterday was the second anniversary of my brother's sudden death from pancreatic cancer so all the memories also laid me low.
Still, by this FRiday I should be starting week 3 and if last time is a model, things will start to improve
One good thing - I have never admitted this before but guess what - I have a hammock in my garden!! It's a bit weather-beaten and the prickly roses grow through it a bit, but it is lovely to swing in on a warm afternoon.
I am meeting Sarabee next Monday and that will really cheer me up.
Pepihorse - I have been meaning to ask - how did you choose that name?
Sameelee3 & Southpool. Huge big hugs to both of you. I have an idea of what you are gong through because I have also being having same sort of feelings but no where near as bad. I think we could be dealing with post trauma. Lee calling the the nurse is a very good idea. What about you Southpool? Just know that you are not on your own and you will never be with us bunnies around. Bigger hugs here.
Hammocks are waiting and the team are ready to pamper you and provide you with everything you wish. Be kind to yourselves, do something that makes you happy, give yourself a treat whatever it takes to be kind to yourself because you both deserve it. We have all been through hell & back and we deserve kindness to ourselves.
Hi just a quickie to say Lee I could have written your post. I am feeling exactly the same & had a meltdown moment last night. It is so helpful to realise I am not alone in feeling so fed up when I should be chuffed chemo is nearly over. Thank you for sharing it has made me feel better.
Hilary, I so need to really be at the spa and have some nice thoughts. OH has been away for 4 nights now, and has had a lovely time in London with our son, and I have been here feeling s...t.
Usual side effects are getting to me, think i might have a thyroid problem now, as the fleshy bit on my neck seems to suggest, but add to this a horrible self-pity, which isn't like me, and I feel like I'm losing the plot. Was just in the shower and found myself weeping uncontrollably. Think it might be a kind of post traumatic stress going on here. I have spent the last 16 weeks with my life on hold, trying to stay well, not risking infection, and just dealing with it in thebest way I could!
For some reason today, the hugeness of it all has hit me with all it's force. Everything, from the diagnosis, the mastectomy, the foul chemicals and all those SE's, has come back to me because I've been on my own and had too much time to think probably. Just feel so, so miserable that I have had to go through all this and still it's not over. More surgery, hormone tablets, possible risk reduction surgery......
Forgive me, bunnies, I know that you know how this feels, but no- one else does. When friends ring and say, how are you, they really don't want to hear how it really is, so I say I am ok and getting there. I know I will feel better when my body starts to heal, but just at the moment I am so envious of other people who seem to be having a good time. Where has my sense of humour gone?
Might ring the breast care nurse ( havent done this at all, so far!) and talk to someone,
Love to all,
Just written a massive post about the Olympics and what a wonderful time I had and then lost the lot! Typical. Needless to say it was amazing and I am now exhausted from a weekend in London. I was ther on super Saturday,need I say more.
Back to reality though I have a stinking cold and swollen ankles so not sure if Iwill get chemo tomorrow. Anyway back to the Olympics. Hope everyone has a good day. Catch up soon.
Margie sorry to hear about your mum. I only just caught up with a week of posts today.
Margietee so glad you enjoyed the Olympics and your medical team have are looking after you. I will be thinking of you on Friday - it will be a diffult day.
Southpool - Hope you are feeling better soon - holding your paws, stroking your ears, mopping your brow and trying my natural cold remedies but however, the hot toddies appear to be the favourite! Mmmmmm.
GMT - Sorry to hear about the infections and you are also feeling crap - sending the beautician round to give you a face pack to try and change the colour of your face from putty (not a good look) to pink - hoping it helps.
Sarabee12 - Team Bunny sounds good at Bunny Fest. I have visions of us hopping over the furniture in a race with the waiters standing by looking absolutely shocked as these bald headed pumped up rabbits jumping over their furniture.
Libby12 - Re memory so far I have managed to miss two appointments I made as I had completely forgotten them. Resorted to using my phone to remind me I have to do something. Writing this is a nightmare as I cannot retain details of names and contents just after reading someones blog. Very frustrating.
Sameelee3 - hope you are getting some rest during the Olympics - dont over do it it.
Pixie - I have a better cure for snoring - clothes peg - only joking - have herbal remedy for you at the spa which will be applied by one of the hunkiest punkawallahs who will also give you a head massage to hopefully ease the pressure. Enjoy.
Had my first radiotherapy treatment yesterday. Only reaction appears to be slight redness this morning of wound area of half boob. But bunnies I have got to say I hate machines, I was terrified and I am hoping that today it will be easier as I know what to expect. I am a big woose I know - as the thing does not even touch you it just moves around you fairly quietly and you feel nothing but I dont trust machines. Tried visualising I was on the beach with dog during procedure but it was difficult was almost shouting at myself "I am on the beach, I am on the beach". Only lasted about 10 mins. Plus the technician asked me if I speak Spanish which I always reply in Spanish a small amount but if someone talks to me in Spanish I can normally understand and respond fairly well. However this technician just told me that this was bad - so then had nightmares of technician deliberately giving radiotherapy incorrectly so as to give me problems in the future. Yeah I know woose!
So I am now taking myself off to the spa to relax in the flotation pool with lovely music and calm my nerves. Anyone coming to join me?
Hello to all other Bunnies - those of you who are quiet - you know who you are! Pop in and say hello to the rest of us as we are missing you.
Morning Bunnies, well, Tax truck still here, but I must confess I am finding it not as bad as the first one, still feel a bit woozy and stabby pains but the Orimorph has sorted that out alot, and its much more bearable, so maybe after the first one, it feels a bit better? Its 6 days today, so should have been at my worst by now and Im not, have eveb got up each day showered and dressedm whcih I didnt last time, had a day and a half in bed !
So heres hoping they get better each time ! if any of you are getting the stabbing pains I reccomend Orimorph... brilliant stuff!!
Going to ring about my Rads today, wish me luck........ !!!
never snored till i started this merryground but Hilary has sussed me, I snore like a piglet now as cyclophosphamoide has buggered me sinuses and i cannot remeber what it feels like to be pain free anymore....
margie, so pleased you enjoyed the Olympics, I am very envious and watching lots on TV and just loving it all. Already today 2 golds and a bronze..... just keeps getting better.
Today I have been working at a company where i have gone for the last 5 years. haven't been there since january and when I got there today they had this enormous basket of flowers for me, a lovely card and had 3 cheers for Pixie! well, I just stood and cried. As I was leaving, one of the receptionists came to me and told me she was diagnosed last week and is waiting a date for surgery. She said that seeing me look so well was an inspiration for her. Blimey, this LGFB goody bag sure does the trick!
Gaynore sorry you have infections again, I empathise as i have had an infection with every chemo even though i am fastidious about what i do and where i go, seems the infections just seek me out. And Margie, my teeth went odd after chemo one and several have their wobbly moments. I never knew beforehand how hard chemo is on your teeth.
Southpool sorry you are all snotty but you are doing the right thing, we have to look after ourselves so carefully. (listen to me... little miss myxi pixie...) You need to be okay for wednesday bunny - and i shall be listening for that cheer. One of the companies i do a lot of work for on their behalf keep pushing me all the time, asking when i am going to be doing more, can they 'provisionally' book me for so and so. makes me feel quite under siege. It is hard when people are used to you working flat out - and i mean 60+ hours week in week out then all of a sudden you say, er, i will do four half days every 3 weeks. But you know, my income is now only a quarter of what it was yet the bailiffs haven't turned up, the world hasn't fallen apart. we aren't starving, selling the silver..... makes me wonder why I have worked the way i have for so many years... will never ever go back to that again. So another positive of bc.
Right, off to see a bit more of the olympics and put together happy bags as had lots of orders today.....
I cannot believe 5 days have passed since I last posted. So much to say - but will my chemo brain remember it all? I doubt it!
First, thanks to everyone for the lovely messages about my Mum. Her funeral is on Friday down in Hampshire. My lovely onc is giving me extra steroids to help me through it. It is a long drive and will be an emotionally very stressful time, but we must all remember the good times with her. After all, she was 91 and had enjoyed her life.
I had my pre-chemo meeting with my onc last wednesday. She is fantastic. Aside from the extra steroids for the funeral, I also discussed with her the breathlessness, pain in my trachea and cough that I'd developed, and also the exertion of going to the Olympics. First she sent me to have a different kind of CT scan - this one to rule out the possibility of a blood clot .... apparently another possible side effect of tax. The most skilled chemo nurse - most skilled at getting cannulas in - did my cannula before I went down for the scan. The radiography team said they wanted a pink cannula - big - but the nurse refused and used a turquoise one. That led to a big debate among the radiographers who said it wasnt big enough .... I went into melt down, after all it was only 15 hours after hearing my mother had died. I was in no state for any of it. Anyway, in the end they used the turquoise cannula and it worked. Luckily, no blood clot. However there was a 'patch' on my lung of a 'non-sinister' nature. Probably inflammation. The upshot was a prescription for some antibiotics and a different kind of steroids, both to eliminate the cough etc and to help me through the journey to London. Cough has now pretty well gone, as has the pain in trachea. Still breathless, but that goes with the chemo.
So, we made it to the Olympics on friday. Magic! The atmosphere was amazing, both in the stadium and in the park itself. We had tickets for both the morning and evening sessions so saw 4 of Jess Ennis's heptathlon disciplines. I slept on the grass by the river for an hour and a half in between the two sessions!!! It was totally exhausting but I wouldn't have missed it for anything. I slept on the train coming home on Saturday, then slept for 10 hours on Saturday night! I wonder if different steroids have different effects in terms of sleeping. The usual ones around chemo are dexamethasone, but the ones to help me with the chest and the Olympics are prednisolone. Like other bunnies, I am enjoying the Olympics SOOO much. So much choice of what to watch. I'm glued! I thought of Vanns over the weekend and hope she enjoyed it all as much as I did.
Campo, I loved your post to Pixie telling her off for snoring. She's a terror, isn't she!!!!
Christine, I hope your Dad is better now.
I am so pleased for all the bunnies who have had their last chemo, even though we know there are still all the SEs to be got through. That will be me after this Wednesday. Yippee.
Teeth - I've noticed a change in my gums through chemo. I am a serial tooth grinder and have to wear a tooth guard at night. I am aware that this is fitting differently now to how it was before chemo started. Also I have two side by side crowned molars which I know have moved apart because I get something stuck between them every single time I eat anything. I also lost a big, big filling from another molar right at the start of chemo but decided I had no option but to ignore it till after chemo. I'm pleased to say I've had no probs with it, but cannot wait to get it sorted out. My onc said to leave it 4 weeks after the last chemo. I also asked her about eye tests and she said to leave that for 4 months after last chemo to let things settle down.
Hair - definitely growing, albeit sparsely, but the chemo nurse advised to shave it off once it reaches half an inch to get rid of what she called chemo hair. I'm a long way off the half inch right now. Can't wait for the LG hair to grow again. There is something so wrong in being totally smooth and hairless down there!!!!
Have I said I have my rads planning on Aug 22? Wendy, I can't believe they are reckoning to start your rads so soon after final tax. That shows very little regard to your personal well being. I hope you are managing to change it.
Pixie, hope portacath ooze is improving.
Must end to watch GB's equestrian jump off for gold/silver ...
Just spent 4 hours at my chemo unit as yet again got high temp. As I've being taking the white blood cell injections all week so wasn't too worried about bloods but phoned to be on safe side. Didn't want to be admitted again. After various tests and waiting for bloods, I was sent home with antibiotics as have another urine infection. I've never had one before but like buses 2 have come along with the last 2 chemos. Feel really tired and no energy, face is the colour of putty!
Re hair or lack of. I decided at the weekend to embrace my baldness. Went to a friends private view of art work at Wolverhampton Art gallery au natural and have worn nothing since unless I'm cold. I've found people look less at me than if I wear a scarf. It's almost as if they don't want to catch your eye in case you think they are looking at you. Been very liberating, no wig headache, no scarf faffing or coordinating.
Think I'll go for a lie down. Hope everyone feeling as well as they can be.
Hi everyone, am almost too tired to post, so just a quick one to say that I might be a bit olympic'd out now. Been watching it all day and all evening: sofa has a big dent in it. But totally agree that it has been inspirational.Makes me long for a decent healthy body! ( I mean my own being healthy, of course, not that I am longing for someone else's! ) I clearly wouldnt have the energy anyway.
Last steroids today, so usually crash a bit afterwards, but at least I know what to expect tomorrow. Sorry to hear about the next instalment of the portocath drama, Pixie, it is a complete nightmare and should never have been allowed to happen. Hope it doesn't get as bad as before.
Will catch up again tomorrow, but meanwhile, sleep,well bunnies.xxxxx We will have Olympicdreams.
Hi all hope everyone is ok, Pixie, Southpool my memory has got worse over the last two weeks, and its worrying me. I am now resorting to writing everything down in case I forget somthing. I buy things in the supermarket then go out and buy them again, do you think this is normal. No side effects I think from the Herceptin ( I think) but its early days. I have got those horrible kind of burn marks again from my last tax , so using the ointment from the docs again as it is quite sore. Anyway pff to watch the 100 metres. Love to all Elainexxx
I am in need of a spell in Campo Spa, have come down with a cold & am feeling very sorry for myself. Now feel absolutely crap no energy & aching, so feel like I am missing out on my good days and I am fed up. Not going into work tomorrow to make sure I rest & I had lots of stuff planned, but as OH says it can wait! Like Pixie my memory is shocking, everything takes me so much longer & because I am on a daily rate feel guilty for not delivering to my usual standards.
However I am enjoying the Olympics and was jumping up & down last night at the gold medalists. It has made me very proud to be British and the athletes have all been so inspirational. I really hope the women become the new role models for girls rather than airhead celebrities.
MarGie & Vanns hope you have been able to enjoy your tickets, I am very jealous.
Now getting ready for the 100m final.
Love & virtual hugs.
Sarah - I also thought about doing the au natural look in honour of the cycling team. Would be much nicer than wearing the wig. Am now reduced to wearing a hat in bed to keep my head warm. Obviously am following on from the dad who was wearing his long johns. My dad always wore a vest summer and winter lol! Thank heavens we haven't had a heat wave so far lol! xxx
Evening bunnies - feeling a little better today having spent the afternoon at the spa! Am so loving the spirit of Team GB and definitely think we should have a Team Bunny at Bunnyfest. Hope all of you are feeling chilled and inspired.
Hugs bunnies here's to another good week!!!
Sorry to wake you Pixie, hope you enjoyed the freshly squeezed manjo juice, lobster salad and creme bruelle . But the other bunnies asked me to wake you up as you are snoring too loud they cant hear the sea.
Aren't the Olympics just fantastic? I so wish I was perky enough to travel to the Olympic park, even without tickets it must be a fabulous atmosphere in the park watching on the big screens. 3 golds last evening and 6 throughout the day.... just absolutely wonderful.
My news... same old, same old... wound from portacath one botch up has split open again and is oozing. This is really getting me down now and likelihood of skin graft is becoming stronger. Every time it splits the phlebitis in my jugular flares up again and today i feel exhausted and like a soggy dish rag. Portactah two, done by a surgeon hasn't given me a moments bother and the scar is so tiny and neat. Feel really let down by having number one put in by a radiographer, local anaesthetic and no sedation. everything about it was and continues to be horrible. This one thing has caused me more trouble than the surgery and chemo put together. Grumble, grumble....
Like other bunnies, I am just so fed up of feeling poorly all the time, even my good days aren't that good as my cognitive functions are really poor. Normally I am sharp and have very good recall, now I find if i don't make myself idiot lists, I forget things.... I get up off the sofa to do something and within seconds forget what i got up to do. Am teaching again tomorrow and have gone all through my lesson plans with highlighter pens to keep me focussed.
Last night we had a salad for tea. i washed all the ingredients and made up the salad. After we had finished, I went into the kitchen to see the bowl of grated carrot and a red pepper still sitting on the work surface.... I mean I know this is not big stuff, but it really upsets me and at low moments worry i am getting dementia!
So am taking myself off to Hilary's spa where I am going to have Indian head massage to restore my woolly brain back to full health. I also would like freshly squeezed mango juice, lobster salad followed by a big bowl of creme brulle. Then I am going to recline in my hammock and go to sleep with a gentle breeze blowing and the sounds of the sea. see, told you I believe in this 100%
Gentle days lovely bunnies