Angie - I also experienced the prickly bum sensation!!! Really wierd feeling especially when your not ready for it Hope yout veins feel better soon, it must be really frustrating when you try everything and nothing works. xx
Lily - I will be sending big hugs to you and your family on the 1st of September. Big congratulations to your son for doing so well in his exams. I was in tears yesterday for my son. He didnāt get the grades he wanted to do media studies level 3. We had a long chat and he as decided to resit the grades he needs and do the Media studies level 2 instead.
I did get some good news todayā¦When i was first diagnosed with BC my BCN came to see me at home. She wanted to reccommend me to the Willow Foundation for a special day out. The Willow Foundation is a charity, which arranges days out for young people(40 and under), who are battlling illnesses. I asked for a day out to Wimbledon with my OH and son. The reason i choose this is my OH and i are both tennis players and where we met. Anyway the foundation phoned me yesterday and said they have approved the application. I am over the moon and be able to say thank you to my OH and son for standing by me.
defo have the prikly bum sensation, but was told about it beforehand (not quite as nice a terms as us - my chemo nurses are fab) its from the steroids. Also sometimes get the sensation of swimming pool nose - this is from one of the drugs in FEC. Must say Im picking up now a bit and back in work and off to see a girl I met who was diagnosed just after me, bit worried might get on downer from talking about it but going to try not too as a good weekend planned - what you all up to!
Friday - tea, and wine with new friend
Saturday - Carlilse Live, concert with X factor sytel comp, Boyzone, Andrew Johnstone - fun day out im a saddo and excited to see boyzone
Sunday - night out in local town, first for a while with a friend
Monday - sponsored leg waxign with my dad and uncles
Whooo- might have to chill all next week before final one (sorry!) - will have to pace myself. All have a fab weekend and hereās to lots lots more
xxx
So glad your son did well Lily, hope you enjoy the bank holiday despite the sadness around.
Kirsty. Your son will be fine with the media studies level 2, Iāve worked in media for 15 years and qualification mean nada here (donāt tell him that though, at least not yet Whatās he want to do longer term ?
Enjoy the weekend and donāt do too much or youāll make the mistake I;ve made which is to absolutely exhaust myself when my periods due. I am such an emotional wreck today, Iām going to have a nice hot bath and see what the afternoon bringsā¦ rain by the looks of it. Itāll pass though and itās good for the courgettes, or should I say marrows. I think Iām just finally starting to accept that the woman I was last year has gone and I rather miss her.
You and me both. I have been on a emotional rollercoaster and keep looking in the mirror and saying āwhere are you, i know your in there somewhereā.
Thank you for the encouragement for my son, he was upset. I keep telling him he is still young(16), plenty of time to try and succeed. I know he will get there in the end. He wants to go on and do sound and light engineering.
Hereās a ((((((BIG HUG))))))) for the weekend.
Lily - well done to your son, there was (and is) so much going on whilst doing his exams so he deserves to party. My daughter celebrated her ASās and managed to come home still drunk - thank goodness sheās not passed her driving test yet. Had a very interesting conversation with her at 10.30am as she swayed around - donāt expect sheāll remember it all but I will
Kirsty - well done to your son as well, all in all theyāve had a very difficult time so itās not surprising that something has to give. Great news about the Willow Foundation - something to look forward to after this is over.
Lisa - canāt believe it - you beat me to it! Big hooray for coming up to the last one and hope all goes well, let us know what life is like on the other side Hope to join you the following week but I bet my neuts have other ideas! Sounds like youāve got a good weekend planned, just hope youāve got lots of sympathy and aloe vera for Monday! Are you going to make something out of the collected hair? I bet theyāll be loads, at least enough to make a door mat.
I also get the tingly bit with the steroids (I think) I must have looked really shocked last time when the girl next to me called it the prickly bush I thought, Wow, thatās personal, but she meant as if youād landed on a prickly bush, guess both ways describe it well Also get the swimming pool bit but only noticeable with my last FEC, hadnāt really noticed it before but I bet I will next time now itās been pointed out to me.
To all have a great weekend and hope youāre all on āupsā rather than ādownsā
next chemo is week on Wed - aaarrgghh, well hopefully so anyhow!!!
Nicky - no sympahy at all from me on monday and yuk the mat making sounds creepy!!!
Angie - hope you pick up soon! The mirror thing is awful isnt it - i catch myself in shop windowns and cant believe its me, put about 2 stone on, wig isnt me and now that my stupid lashes have left me I look tired and ill - boo hooo! Trying not to tire out, period time was last week and wiped me but thought they had stopeed,. wish they would!!
God do I know why this chemo lark is bad Ive had the worse time of it since my first CMF/ Sick as a pig for 3 days despite anti sickness pills which I havent taken though out my Epiās even had to get stronger ones as the ones that hospital gave me didnt stop it. I havent eaten anything for 3 days but no appetite what so ever suppose all the weight I put on will now come off so not all badā¦ Iām really not looking forward to second dose on wednesday and hoping that the side effects are only down to the change in chemo. Dont think I could take much more if this was going to be like this all the time. I HATE BEING SICK.
Hi.
OOh Joanne I am so sorry to hear that. I hope I have not jinxed you, calling you superwoman! Did you start the anti sickness tablets that night, because I know they say it is much harder to stop it once it has started? Sorry to rub it in but I have been much better on this one, although the horrible mouth started yesterday as usual. I am glad not to be in a bubble and emotional like I was on epi though. Still time to go so I anxiously wait to see how I will wake up each morning. Hope the sickness has stopped now and you feel better. You moan your head off, I always do.
Julia, thank you for your kind thoughts. I have to have 15 rads and I think it will start 3 weeks after chemo 8 as you say. I got referred before chemo as there was an 11 week wait in this area, so already have a letter saying call us if you have not had a planning date by Oct. I think they do the planning and tatoos before/during the last chemo cycle. Not sure though.Your drugs sound the same as I get another 1000 C and 1000 F next time on Tuesday. I have passed out thinking about the things you are doing. This slug cannot manage much at all! Well done you.
Kirsty, I am sorry your son did not get what he wanted but so good that he can join at another level and work his way up. Sometimes it makes them more determined I think. I cried when I tried to tell my OH the results, no idea why. Brilliant news about Wimbledon, is that for next year. You deserve it.
Lisa, hey twin, are you sure it is not me looking back, 2 stone heavier, fat pale face, old!!! What will I do when you are finished you lucky devil!!! Well done for getting so far on and pat on the back to ratty too. What will you do with it afterwards? Concert and weekend sounds fab. Have a great time, then rest for the last one.
Angie, we all know about the women we were and I really think after chemo we can regain a lot of ourselves. Well that is the plan to hit the waist line. i think it is the hair that really changes us and the look in our eyes. I know you eill bounce back, its the rotten epi talking to you.
Nicky, loved the story of your daughter and the bush one! Get eating to get those neuts upor you will be keeping me company for longer. I really want to see you all fly through the final part, even though I seem to be on the relay team and have gone back for my baton!!
I tried to go and but a new outfit today and whn I got to the shops, realised I was not as good as I thought, so tired I canāt walk round the shops hardly these days. I still have the rotten snail, I bet it is his fault!!
Enjoy the weekend if you can
Lily x
sorry to hear some of you are feeling awful and glad to hear others have picked up a bit. I have been away for a few days to cornwall which was bliss I was really worried about going so far away from home but the sea air was wonderful and we saw baby seals!! I managed to do a few cliff tops walks which I was really pleased with as I felt fine. Unfortunately my other half was really poorly though with an upset stomach and I have now been paranoid about picking it up as my next chemo session is this coming wednesday aghhhhh! (like you lisa!) and I feel really flat now coming home to the realisation that I am in this horror story and still have a long way to go. I had a few dodgy moments with wiggie like being out in the high winds and realising that I looked like Elvis Presley on a bad day! Anyway love to you all.
Lisa - Good luck for next Wednesday, my thoughts will be with you
Joanne - So sorry to here that your feeling sick with the Chemo. Are you manageing to drink fluids? Hope you feel better soon
Lily - Thank you for the kind thoughts for my son, i know deep down he will do well with the course. Hopefully will be going to Wimbledon next year. As tennis players my OH and i have dreamed of going and to watch the professionals.
Just waiting now for my sister-in-law and her other half to turn up, then we are going for a pub lunch and a few drinks. Enjoy the rest of the weekend:-)
Bevy get some vicks first defence hand foam ASAP and plaster it on you and OHās hands. Itās lasts for 3 hours and is brill protection from those kind of bugs. Sorry the horror story feeling has caught up with you. That was me yesterdayā¦
Turns out part of it was hormonal. Iāve been on the pill for years and always get my period 3 days after I take the last pill. not this time ooh no. 6 days in this case so I guess chemically induced menopause may be around the corner.
Hmmm I wonder if large amounts of toxic drugs, exhaustion and hormones could be making me feel cr@ppyā¦ Duh of courseā¦ why can you never see it at the time eh?
Joanne. Sorry this oneās being so cruel to you. I was very sick for a couple of years and on those days when I really couldnāt face food I actually found farleys rusks kept me going, you can just nibble at them like biscuits, they are a bit sweet but theyāre mostly inoffensive and do have some energy in themā¦ also on the really really bad days I used to drink complan but I canāt even look at the stuff now the smell still makes me feel queasyā¦ but that is what happens with those kind of associations I guess and I really donāt mind if I never need it again Itās not like Iāve gone of champagne or something is it?
not going camping this weekend despite it being the good weekendā¦ bank holiday weekend in the Lakes. we decided weād rather sneak to a hidden spot and picnic instead.
well done for continuing to be chirppy through this ordeal. but hey we gotta live life aint we.
Lily 2000
i will think of you next monday, i have a 2nd cat scan to see whats happening now they finished first lot of treatment. not looking forward to it, but got to be done,
it must be so hard at times for you, and poor hubby dealing with loss of his mum, and trying to be brave for you. i hope you both continue to have the amazing strength youve shown so far. but mother in law is at peace now and no more pain. and you know you where there for her, which helps. what a horrible time with treatment too, things can only get better (as the song goes) how old are you lily, if you dont mind me asking i am 46, anyway try to remain positive, youre doing so well, even though i know you probably are still shedding secret tears like we all do.
Nicky 08
just to let you know, im not too bad after 6th one, even been ice-cream farm with grandaughter today. But i never touched one( but i will confess to the muffin and milkshake). just starting with the indigestion, heartburn,which tries to trick your brain into thinking its hungry, so you eat something, and guess what? its still there. aghhhhhhhhhhhhhhhhh! another inch on the hips.
like i said to lily i have scan next monday, but had so many shocks im trying not to think of it.
take care everyone, try and have some enjoyable moments through the weekend.
Hi lovely ladies,
I am on a normal sort of day as I have my Grandson for an overnight stay, which is always a big positive thing for me. Nothing like chubby little knees and cuddles to forget your woes! We are watching Pinnochio to see who falls asleep first, I have nipped out to type this as it definitely looks like I will get bored first! He has his Iggle Piggle PJs on ready so he can slide into sleep on the sofa. Lorraine I am 48 so not a youngster like you!! To be honest I have to think as I still imagine I am in my 30s, where did they go? I was a Nanna at 45, which was a surprise but great to be able to do so much with him. I better stop now, as I will go on forever about that little charmer. Is your scan on that same day? I will be thinking of you as you wait to hear the next results and we will all be praying for the best news. Please let me know which day it is.
Bevy glad you had a nice break and follow Angieās expert advice to avoid that bug. Lots of discinfectant down the loo or separate loos if you have 2 I would say. Fingers crossed you stay clear of it. Kirsty, hope the lunch was enjoyable. I am struggling to know what to eat with my taste a bit off, all jacket potatoes at the moment. Cannot face my favourite eggs right now. Angie enjoy the picnic, I feel like you have been having a tough time just recently. You are so kind thinking of others but donāt forget to save a bit of time and fuss for you too. Nicky No doubt you are riding round the streets with your daughter at the concert, like I was last wee. Such a worry but they have to do these things! Lisa
I am thinking of you singing your head off right now, have a scream for me. Joanne hope you are starting to improve as I know how you will be feeling about next week. Yuuk. I might go on strike!!
Hugs to anyone I forgot but trying to type fast. Am I the oldy of the group then???
Lily x
Hi girlies (we are girlies by the way whatever our age!)
I have definitely twinned with Lorraine as Iām 46 as well. Do have to try to remember that sometimes as I donāt really act it! You 2 must have been child brides to be such young āgranniesā (sorry, I bet thatās not a word you particularly like). I could be one as well but Iād rather not be as my daughterās are both still in their teens and thatās not a road either of them need to go down right now so I guess Iāll have to wait.
Thanks for the notes about No 6 - well done for getting it done and not feeling too bad after. I do know what you mean about eating but it not helping the indigestion etc. However a muffin and milkshake sound like good medical advice! Hope scan gives some really good results to show after all the chemo and then youāll have a plan on moving forward. Hopefully not involving chemo either straight way or for a long time at least. I canāt remember if you are hormone +ve and what your HER status is as these will be taken into account. Fingers crossed for Monday week and please let us know how things go, but enjoy your good days in between.
Iāve avoided any picking up from Reading so far as daughter No 2 has stayed there since Weds eve - I bet she smells by now but the overnight rain may have washed some of it away Iām hoping one of her friends will give her a lift out of Reading and then we can meet up to bring the bedraggled rat home, hoping of course that she can un-pop her pop up tent so it fits back in itās bag rather than filling the car up! As Lily has said, they have to do these things donāt they?
Nice to see everyone on the board and good wishes and hugs and luck to all of you - Iām being very lazy and not going through everyone but I do love catching up with any news or things weāre all doing. Hope all illnesses are kept at bay and you are all feeling perkier by the day. A short story - when my youngest was very young she had heard us use the āperkierā word and one day asked if I felt āperchierā, so we often use that instead along with āstuddingā instead of āstunningā - as in āDo I look studding?ā - all this at the age of 2-3yrs old! Luckily her grasp of the English Language has improved since then!
Well, the Olympics are nearly finished, what a great Games for us. But what am I going to do for the next chemo when I become Lilyās land snail, with nothing to watch? Looking forward to the ending ceremony today and the hand over to the UK.
Have a good weekend and hope all goes well for any of you having treatment next week.
Hi,
Nicky I just know I am going to be the oldest!!! Someone will have to pretend to be older to pacify me! It is funny , I have never been the oldest in anything, being a middle child and marrying someone older, also at work, just the way it happened I guess. Still I look older than everybody in the world at the moment from what I can see in the mirror!
Anyone like to challenge me that they look worse? I am most definitely not a perchier studding catch!
Rotten snail is still here weighing me down. Actually managed to trick my younger daughter into picking him up out of the water bowl, by saying he is a land snail I think heās drowning!!! She is the only person I know with a fish tank containing one snail (not land type). I had not realised I have such a weird family!!! Look out for snails and slugs in the tent, they creep in everywhere and hope the washing is not too bad. Mine is still trying to heal his blisteres from wearing flip flops to a weekend concert!
Has anyone who has changed drugs started wanting to eat different things? I just want to eat red meat, fish and potato all the time. The meringues are definitely off at the moment. I am also drinking ribena non-stop. Weird
Have a nice weekend, who is in next week? I have a dose on Tuesday so have to have blood tests and wait for them, which is annoying. Take care
Lily x
Oooh Lily your eating habits are interestingā¦ you slightly anaemic per chance? Iāve been taking these spa tone things that are basically naturally iron enriched water from a spring in wales. I just take them around my period as I know that Iām prone to it but I do get insatiable cravings for beef and pate. I know pate is off the menu but I have made beef wellington twice and been fine. I use really good quality pate and make sure it hits and stays about 72 deg c for at least 10 mins, but I almost cried I enjoyed it that much.
But yeah sounds like oyuāre craving protein and iron to me. try some watercress soup I bet it makes you feel a million times better.
Anyway must get on with the day, chemo tomorrow. Itās so strange being on day 21 without another dose going in. Itās lovely I feel human, the bellyās gone down and Mumās popping in for a flying visit on her way down from scotland to watford via yorkshire (sheās gonne be tired tomorrow).
Lots of love
Angie
xXx
And Lily Iāll challenge you to who looks worst competion in about 8 days
Sorry have been on but been really ill on this CMF havent had anything to eat since last wed and have lost 6Lbs got onc tomorrow and want to stop this I feel as if iām fading fast on this its like alien is trying to get out my stomach not atol pleasent. Had a feeling thought that the easy one was gonna get me.
Lily think I can beat you my oldest grand daughter is 11 and iām 48 lol
Hope everyone else is dealing with this better than i am and dont let it put you off I always have strange reations to meds
even co codamol make me stoned and sick.
Oh Joanne, not fair how much youāre getting side effects. Iām getting survivor guilt for you lot, ie how Iām not suffering as much, wish I could help I really do. I hope the onc can do something about it. Which anti sickness pills are you on? Mine are the ondanestron which seem to be brill but Iām not sure everyone everywhere gets them so if not please do ask about them thereās quite a few different newer ones.
That is too much weight to lose too soon. Ask the onc about maybe getting some supplements to help build you up again. They must have access to them. My mum got me a tub of this powder that you just add to normal foods to add energy as a just in case, and of course thereās the old lucozade or other energy drinksā¦ build up is good I seem to recall but bland as hell which may be exactly what you want.
Iām getting pre chemo nerves and not helped by paranoia as I have a little lump in my cheek and research has indicated itās probably a lymph node so Iād better say something. thereās also a weather change and my period ending which is giving me a headache. Considering al lthe grief my mouth has had from the chemo itās nu suprise a lymph node is a little swollen but of course the paranoid part of me is going headacheā¦ swollen lymphā¦ oh ****.
I really hope Iām not going to be this paranoid forever. Iām thinking not having the side effects should help with that right.
Hope you all had a great weekend. See you when I get back from the rabbit hole tomorrow.
Hi,
well Angie we are in the bunker together, due to me going to a 4 week cycle now, so will be thinking of you. What a pain to have to wait for the bloods or do you always do that. I normally pop in locally on the Monday and then it is all ready to go on the Tuesday. I have not heard anyone mention nodes in the cheek being something to look out for, so hoping that will be nothing else to worry any more about after tomorrow. Please let us know, I will be wondering how you are, while I am in there. I was interested in your diet theories, I tend to believe my body craves what it needs. That has been my excuse for many years of abusive eating! My haemoglobin has slid down from over 14 but is still only just under 13, so pretty good for a woman I am told. I have still got to find out what the CMF has done to my counts and I am going back in for more on day 8 so I donāt think they will be very good, do you? I love pate but have not tried it since chemo, partly as told no way and also as donāt want to go off it for the future. I look at the cheap ones in tubes and think they canāt be dangerous but have not succumbed yet. Wafer thin beef and cod are the yummy things right now. Tried spaghetti bolognaise at lunchtime and spent the next hour in the loo regretting it, so being very careful now. Had hard boiled eggs and toast for tea, like a convelescent! Good luck tomorrow and just remember there is fighting and there is nurturing, have a bit of each.
Joanne, ooh poor you I cannot believe you have had such a bad reaction after doing so well before. Did you take everything they said? If so you must ask for something else and if you didnāt then you will have to take lots more care of yourself on this one as it does not suit you so well. I get ondansetron and other anti sick tablets to have at home just in case. My friend takes 2 different types for a week each time and has now got it sorted. Please donāt give up too quickly, try to have the next one on Wed with more drugs to help you. My onc said the big dose of epi will have ādone itā already and that every CMF I can put up with will push my % up higher. You know what you have been worrying about. We get another 3 different drugs and that is 3 chances that they are the one that will do it for us. I am so scared of going back in tomorrow in case I get the reaction or a worse one. If I do it will you, please? Give them a chance to sort it out and donāt drive take someone with you.
Hugs to everyone here and those I have not mentioned but are still in my thoughts
Lily x
Hope yout veins feel better soon, it must be really frustrating when you try everything and nothing works. xx
Whatās he want to do longer term ?