I have read that the bone marrow boosting injections can be either a one off or 7 days so perhaps it is just that we have experienced different ways of getting this boost rather than some are and some aren’t? Not all hospitals do give them straight away though some see how things go so if you haven’t been given any, just ask.
Wow Zuzy you are keeping very active. I have spent a few hours cooking with my daughter today and am exhausted! How you can play tennis and go out for lunch too I don’t know. We are both on day 12 so it isn’t about where we are in the cycle. I would be concerned of doing those things because of catching germs -I really need advice on what I should and shouldn’t be doing.
The oncologist also told me most germs I would catch from myself and just to be sensible but the breast care nurse was far more conservative with her advice. I am confused and don’t know where the safe boundaries lie. Eating out for example - or going somewhere there are lots of people. What is everyone else doing?
hi to all moonies - our ever growing group
lovely to hear such positives from you all annd SE to the minimum and loving the gin bit, hope you didnt have a hangoever this morning
I still have no date for chemo to start as I was awaiting a heart scan which is now this Thursday so the chemo nurse said chemo would start immediately after that so watch this space
not much more happening with me, although I have got the horrid cording down the arm to almost the wrist, didnt even realise it was that til I mentioned to BCN how sensitive it was and she pressed under my arm and I almost cried with pain, she found just the spot! anyhow ibruprofen for a day or so and referral to physio, anyone got any tips for this, I am at times unable to straighten my arm
went for wig consultation on Friday and had a little giggle trying on some ones that obvioulsy weren’t right, keeping quiet on my final choice as I narrowed it down to about 3 which she is going to order in to try different length, colours etc as she only had a limited stock with her as she travels from Leeds to us. quiet pleased with shortlist alhtough I have to say none of them are like my style has ever been - something new and why not!
still doing race for life next Sunday unless they make me start chemo this week and I will have to assess nearer the time, still going to cheer on everyone though and my daughter
speaking of daughter, lovely child has developed a stinking cold, hope I dont get that, any tips for snotty 10 year olds please? however I have had join me on a clean up spree with the bribe of pocket money from it. Bit of time for me and her today. Anyone else had problems but my daughter has had some children in her class telling her that her mum was going to die, felt so awful for her and had warned her of this but never ready when someone actually does say it, of course we sat down and discussed the treatment and that I will be fine and that everything was going to be done to ensure I am healthy and live many years, doesnt stop you then thinking the worst yourself though, through the eyes of a 10 year old, my 14 year old unfortunately is being a typical selfish teenager and listening to his step mum saying she is sick of hearing about this cancer - how dare she?
anyhow enought of my anger, because I am not rising to it and using my energy to kick cancers ****
can I aks if any other drink is ok during chemo, does it have to be tonic water? not really that keen on that, I bought some lucazade is that any good, I too am trying to make a list of things that I need to buy, laterst purchase an electric razor seeing as the BCN nurse told me off lol
can I also ask (begining to get a list here too lol) has anyone used Bio Oil for the effected arm/wound - I have some but didnt dare use it yet
well best get some washing done and uniform ironed
keep smiling moonies
Karen
x
Just popping in from the February Valentines. Hope you don’t mind.
Any drinks will do. Tea, coffee, squash, ginger beer (good for nausea), fruit juices (Cranberry good for urine infections, Apple good for diarrohea), Lucozade, whatever you fancy as long as you drink 2 to 3 litres a day.
Vick’s First Defence spray is excellent to try to avoid colds when family members have one, followed by obsessive hand washing. (all family members, not just you!!)
A good thermometer is essential. You need one you can trust, and make sure you have spare batteries. The ear ones are recommended by doctors.
thanks for that, some very good tips there, I have one of those braun ear thermometers from years ago so will use that, if you think of anything else let us know very much appreciated
Hi Moonies
So many new additions since I last popped in. Marie we see to have lost Deborah too. I hope they are both ok. Let us know how you are girls xx
Good luck to all first timers this week. Hopefully your s/e’s will be minimal and you’ll sail through it.
Im back Wednesday to have wound checked, which finally seems to be healing. I will also confirm myself for the Optima trail. If this leads to women not having to go through chemo unnecessarily and the Oncotype test becomes readily available I will feel proud I lent myself to that research.
Its damp and cold outside so I’m snuggled on the sofa, cup of tea and rugby on. Very chilled. Enjoy your evenings xx
Aww Dodo you know how to make an old woman smile . About eating out and germs- We’ve got local restaurants with seats outdoors but the weather hasn’t been in our favour for so long we just haven’t used them- last week we went out with friends at lunchtime; it was showery so I chose the seats nearest to the door. I am definitely going to give this question a thorough airing with the nurse next week.
Thanks Lola for advice about Vick’s First Defence- got to check it out.
Karen- don’t forget most lucozade has caffeine in…not great if you’re worried about sleeping. I have to avoid caffeine cos the Letrozole can eat away at your bone density and so can caffeine. Lucozade tastes so good it’s hard to have to give it up though.
Hi all- rainy Sunday here on the south coast. Karen- I have used Bio Oil but only on the healed scars which my BCN said was ok- the area I have that remains unhealed I have to leave alone. For drinks I find sparkling mineral water the best and am hugely relieved to find tea is fine with me- prefering teas like Earl Grey at the moment- not too strong. I am also having a glass of wine when I fancy it. Dodo- my oncologist said the same thing about infections more likely within than from others but I am going to be cautious for the next few days (on day 10 first FEC) because I can’t bear the idea of ending up in hospital again- as far as I am cncerned this first cycle is to see how it goes and I may well be more confident on the next one. I am pretty tired tho- is anyone else? Tennis, blimey! Mind you I couldn’t play before BC…
mmm might give the lucazade up then, didnt think about the caff eine in it, oh well sure the kids will drink it and be super hyper, there are lots of other soft drinks I like
today here (Lincolnshire) is pretty miserable at the moment, liking your thought of snuggled on sofa, must give that a try - much better than trying to play tennis, much too ambitous for me even before BC !
anyone had this cording - stuggling to find out what I can do for it other than keep on stretching which is so so painful
must go make something to eat for the troops
catch you all soon
Karen
x
Dodo, I’m trying not to go over the top with germs but making small changes - am driving to work rather ththe getting the bus and went to lunch in my local (which doesn’t allow children) a bit later than usual when i knew it would be quieter, also have anti bacterial gel in my handbag and using it constantly!! I am now chilling on the sofa watching come dine with me! i just really don’t want to feel like cancer has taken over my life so am trying to be as normal as possible, I guess i’ll find out over the next few days if I’ve got the right balance , hopefully won’t get sick!
re drinks I’m really off hot drinks and bizarely water…but have just finished a bottle of squash in a week, my teeth will be rotten by the end of all this!
Xxx
Marie - I am just above Lincoln if that helps?
hope you are keeping ok at the moment, you will be on your 2nd one before I even get to the first I reckon !
Karen
x
Ooh the site just twitched and I lost my text! That will teach me not to compose in WORD.
Dodo I’ve just thought of something- most of the BCNs are female and have raised families. So they have hands on knowledge of germs! maybe that’s why your BCN is more conservative- I remember mine saying something about avoiding crowds of kids but I didn’t take it in at the time.
Karen the price of Braun thermometers must have doubled since I last looked at them! You did well to hang on to yours. I have never had one before. I know it’ll last because my daughters have them and they have gone through all the grandchildren. I spent half an hour in Boots shopping for my chemo bag, following all the tips I’ve picked up here! When I get home the house needs cleaning, the laundry is sitting in baskets so what do I do but just reorganize my bedside table as a place to retire when feeling ill- I empty the scarves out of the drawers and put them into a scarf box (got it for Xmas years ago and now I realize what it is. perfect for scarves) then I refill the drawers with Things a Poorly Chemo Lady might need in the wee hours. This is an ongoing project but the first thing that goes in is the new thermometer and my temp chart (once a nurse…). Very therapeutic!
The weather…not great but I love the sound of my water butts filling up. That’s a blessing. It’s just not very good walking weather. Brr. Keep warm all you moonies. Better must come!
yes my Braun is a little old but still working, my daughter is 10 now so its lasted. good investment but like you say not cheap
I think I will need to sort out the side of my bed although once I am up sorting daughter out for school I might just settle downstairs watching tv and before you all ask NO, not Jeremy Kyle lol !
Isnt the weather a change from this time last week? I am going to put fleecy pj’s on that I thought after last weekend they were going away, take this bra off and get a bit of freedom lol !
I bidded on some chemo hats from e bay (All new and sealed) so bargain - did manage to open them and have a look and some lovely ones with scarves around with flowers attached, very posh. I am going to give my wig a name, but depends on which one I go for as to what I will call it, so if I refer to going out with “…” You will understand its not an imaginery friend but my wig
my cording is really bad tonight, going to have to talk to the BCN, Im sure someone said you could massage it but you could not do it yourself, the last thing I want to do is cause problems, anyone any ideas, the exercis (particularly walking up the wall etc) are agony, I will persevere and carry on.
Karen x
Evening moonies ,hope everyone is keeping well it has poured here for most of the day i decided to go for beach walk this morning as it chucked down was hoping for bit of solitude, just me and the dogs ,but even in the pouring rain managed to bump into someone from my mums church who was wanting the lowdown on my medical exploits
My friend is making me breakfast tomorrow then doing my prechemo bloods and picc flushing then of to pick my Anne Wiggycombe that should be interesting,still not organised much of prechemo bag for tues will have to get a wriggle on.
Karen keep persevering with the exercises ,hopefully once you see the physio she will snap/pop it for you which isnt sore ,though its sore to have them massaging so deeply but well worth it to get results mine is all but gone now ,just wish i could get this lymphoedema sorted ,its a bit of a pain with a picc in one arm and this sleeve on the other but will keep going with it as i have seen some bad arms if its not dealt with quickly
Stay well moonies good luck to all of us starting this wk and for everyone already over their first one take care caz xx
Hi everyone. Sorry its been a while since I posted on here but had a busy weekend and been trying to keep things normal for the kids. Loving the naming of the wigs I am going to have to get my thinking cap on and think of a name for mine. I might be starting chemo tommorrow not sure because of my latest dx they are waiting for funding for a drug they want to give me so cant start till they gat that through. But they said it shouldnt take long for the funding so if I dont start tommorrow I should start this week. I just wish they would get on with it so they can just blast everything.Would feel better if it was my usual onc in charge but he is on holiday will feel more confident when he is back. I think I have nearly everything ready for chemo but I am sure I will of forgotten something. Anyway I think its time to go to bed as for once I actually feel tired enough to sleep. Good luck to everyone starting next week and I hope everyone is as well as can be. Lots of hugs.
Angela xxx
hi all
im having my first dose of chemo (fec t ) this wed. and am seriously freaking out about it! my oh and me went to the chemo suite last week and as soon as we came home i had a breakdown - i just found the whole thing horrific. i think it was the first time it really hit me that i was a cancer patient even though i have gone through a op and node biopsy. while we were waiting to speak to the breast cancer nurse my oh went to find me a cup of coffee and a lady decided to tell me all about her terminal diagnosis, then i had to be weighed in a public corridor ,which as a woman of rather generous proportions is a little offf putting! then the bc nurse couldnt find a vein for ages then to top it all of we were then told my oh couldnt stay with me throughout the chemo due to lack of space- which i can understand but was not expecting. so for the last week i have developed the head in the sand approach and decided that chemo was not happening. But i guess now is the time to put on my big girls pants and deal with it
jessie bears mum i have 2 kids around the same age son 11 daughter 13 and my daughterhas had kids tell her that she attention seeking because there is nothing wrong with me apparently i dont look like i have cancer she has also been told i will die horribly. i have informed her teachers but they say they cant do anything if she doesnt say anything which she wint becase she doesnt want any trouble. so lots of hugs and reassurance given. kids can be sooo nasty sometimes!
sorry for the long rant - im making up for lost time !
hugs to all
Bad Bambi and Karen - what is with these kids? I wonder what the parents are like. Personally I think this is bullying and your kids’ schools should have a bullying policy which includes “confidential disclosure” ie a gentle word with a teacher or head of house will be anonymous. When my kids were at school I heard all sorts of stories about horrid things said to children with seriously ill, disabled or elderly parents (like us for example!) and after stewing for years I finally took one incident to the head of house when the eldest was in - I think- year 9- I wish I had done it sooner! The Head of House took it very seriously although we agreed that a certain amount of this heavy teasing is part of growing up. The incident was nothing to do with us and strictly speaking it was none of our business but as I said to the bloke, I hated to think the school my kids went to would let the children sink so low. There was as far as I know no comeback either for us as parents or for the children. (I have to add that at that point we both were working full time so not spending much time at the school gate!)…and I heard no more reports of this thing happening again to the children involed. If it got back to me that my kids were doing this to other children I would be devastated. Apart from being hurtful it is so ignorant. I’m sure you each will find a way of dealing and I also think if you love and reassure your children continually they will withstand any amount of hurt. BTW full marks for them telling you about it in the first place- many would just suffer in silence! This must say something positive about your families if they can confide in you. There you are…I’ve had my rant for the day. Back to bed? (No! LOL I just got up! and the washing basket beckons…)
. About eating out and germs- We’ve got local restaurants with seats outdoors but the weather hasn’t been in our favour for so long we just haven’t used them- last week we went out with friends at lunchtime; it was showery so I chose the seats nearest to the door. I am definitely going to give this question a thorough airing with the nurse next week.