Ann and Aly I’ve got those Jasmine silk pillowcases - got them on a tip from you Aly I think- best value I could find- they are lush but they are a little larger than my pillows- must be made for a different market? But in makes no difference- I can always put two old beaten down pillows in if I decide it will be better. Silk pillowcases - little bit of luxury I’m loving already. Might as well enjoy something in all this mess and chaos.
Ann- glad if our naughty George was a Catalyst for your sense of humour (sorry, pun, probably not the last I will ever come up with). The saga goes on; My OH tried groping under the floorboards with BBQ tongs for about half an hour this am after breakfast. We think maybe we could send a boy down? We will have 4 tiny grandsons visiting this weekend but their parents are not keen for some reason…
Aly- threadworms or any infestation really throws a household into uproar. We had carpet moth when we were on holiday and had people looking after the house who left a bedroom window open and in they flew(the moth not the guests!) We caught it just in time but I had to fumigate the room with fleaspray and wash or clean and freeze all our clothes and bedclothes and curtains. Then my daughter’s kids had threadworm right in the middle of her MIL’s cancer treatment and it was quite a palaver. Once they sorted it (she had 4 under 7) they slept a lot better. Why is it these things happen when something else is going on?
Emma- some people just don’t get it and I guess never will. I must live a sheltered life- I’m surrounded by BC survivors-many of my friends are older than me and have had it. So I’ve been blessed by a BC-wise peer group. My friends at church have been great, and we’ve been able to talk plainly about my condition but then we have seen so many fellow parishioners through cancer and other long-winded treatment, talking about it and knowing how to ask when you don’t know seems second nature to them. I feel really blessed. And now I’ve got you lot! But then if I venture out of my little world I hit snags. I’ve got 3 friends at work whose lives have been affected by BC in a relative, and one who is a survivor, but the rest are rather non-interested. I guess that’s partly because we deal a lot with trauma in our job and there is only so much you can take. In a way it is good because I can take a break from being a cancer patient while I’m there. What a contrast to my family and neighbours and friends! I wish I could spread this understanding they are showing me around a little - blow some of it your way maybe. BTW thanks for the compliment. Not sure how easy it’ll be to care for- need to see how badly it frizzes in the wet weather. Well the forecast is for showers this weekend and there is a little black growly cloud outside my window right now!
Marie - Sounds like quite a few of us need a good night’s sleep. I struggle with it myself but lately have been putting lavender oil between my toes to ward off athlete’s foot and it sends me off to sleep in 20 minutes! I wonder if I’ll be able to carry on with this when I’m having chemo. (Note to self, add Lavender to list of questions for nurses on Tuesday.) Just had my Heart scan appt through, so it’s to be 24 hours before first chemo Yikes that’s cutting it fine! So we will have a lovely day out at the hospital with appts from 10 to 4. This will work out expensive on the parking!
Karen thanks for the heads up about the cold cap. I think I’ll stick my head in the freezer tonight and see if I can hack it.
Really looking forward to the weekend with the family, last get-together for a while as one of the families is spending the summer in France, and MD is starting Teach First training. And then off to work on Sunday for something completely different. All of this a real distraction for next week when I take the plunge with 3-4 of you. This time next week …we’ll feel different?
Oh god just got off the phone having had a very tearful row with my mum - my start date for chemo is now the 23rd May which clashes with something she has in her diary and she was umming and ahhing about not coming to stay, I was already on the defensive as one of my 8yr old daughters closest friends father passed away today (Hodgkins) and I think that along with the little delay in the start date tipped me over the edge. Now feel TERRIBLE as I basically have made her feel like I think she doesn’t care when I know that this is tearing her apart. Oh god families its so hard isn’t it??? I think we’d made up by the end of the conversation but I know she’ll stew on what I said for days and now feel totally crap 
So here is the updated Moonbeams list, apologies in advance for anyone I’ve left out and any dates I’ve got wrong please feel free to amend accordingly - there’s over 30 of us now (OMG) and 7 of us starting next week.
I’m going to start calling us 'The Darling Buds of May"
Lexi 42 - Alex - 30/4/13
Panacea - Deborah - 30/4/13
JaneyW - Jane - 1/5/13
Zuzy - 1/5/13
Dodo14 - 1/5/13
Nanniereeree - Marie - 2/5/13
Sunshine Parasoles - Jill 2/5/13
Barbara2013 - Barbara 3/5/13
Sooz - 9/5/13
Rara - Rachel 9/5/13
Littlescoot - 10/5/13
Lilyluoise’s mum - 10/5/13
Caz D - Caz - 14/5/13
Badbambi - 15/5/13
Mchales 21 - 16/5/13
Namaste - 20/5/13
Ellydog - Angela 20/5/13
Marleypop - 21/5/13
JessieBearsMummy - Karen 21/5/13
Penny47 - Penny - 22/5/13
Penash - 22/5/13
Aly1971 - 23/5/13
Mills1 - Sarah - 27/5/13
Jan34 - Jane - 29/5/13
March13 - Ann 30/5/13
Katebill
Redcap - Janet
Pammyx
MarthaSOS
SueH
R.hands
Melrose 15 - Emma (June)
Beeny (not chemo but honorary member!!)
Aly - can’t you ring the onc secretary and try to get another date? It seems hard them doing this to you on a Friday. Great list but I think Katebil is an “auntie” from another month. (?)
Also I think Darling Buds has already been tried…I’ve got quite fond of Moonbeams.
I was so sorry to hear about your daughter’s friend’s dad. How is she taking it bearing in mind your treatment?
It’s hard when you get into misunderstandings with your nearest/dearest - when we have disagreements half of me wants special treatment and half of me wants things not to be different. But of course they are. I do hope you sort it out - she obviously is willing! It must be hard for her because our children aren’t supposed to get cancerbefore we do!
Big Hugs Aly. xx
Huge hugs Aly xxxxx
aww big hugs Aly
wow what a list you have compiled - so many of us this week coming too
Karen x
Aly so sorry you have had a row with your mum. I know exactly how you feel as I am struggling with my mum. I feel that she is treating me like a child and whilst I really appreciate all the support she has given me I sometimes wish she would give me some space too. Of course it is hard for them - they are our mums and we both know how we would feel if it was our child. I don’t hink those feelings change and I guess for my mum I still am her baby even though I am 42 and a mother myself. Rest assured that she knows how much you love and need her no matter what. Take care. Jo x
Thanks everyone. It’s fine the clash is not a big one, it’s a regular thing that she goes to so it’s not a biggie to miss it hence the reason I lost the plot. As soon as I said I really wanted/needed her she of course said she’d be up but by that point the damage was done. We’ll be fine and I’m so aware of how hard this is for her, we lost my dad to kidney cancer 6 years ago and I think this is bringing it all back although he didn’t have chemo.
I’m choosing my moment to speak to my daughter about her friends dad. It’s her birthday tomorrow so will wait until Sunday and choose my words carefully. The school are waiting till Monday to tell the class, but called to give us the heads up as they are close friends. It’s really shaken me, a little too close to home for comfort and I can’t imagine what they’re going through.
To be honest I’m glad I’ve been given a couple of extra days before chemo, really don’t feel emotionally ready after today.
Aly
I know its difficult when you have an arguement with someone at the moment everything feels so much worse. I would fall out with my mum all the time but that was just the way we were. We always made up and I loved her and she loved me. She passed away last year(in her seventies and peacefully) and I am sure she is now looking down on me helping me to cope with everything I am going through at the moment. So dont feel bad your mum will be there for you whatever because that is what mums do. Lots of hugs
Angela xx
Aly well done the school letting you know. It shows someone is thinking about you as a family. Good for them. Meanwhile great love because just now we need to be solid with the people who care for us.
Ally know how you feel about your dad I lost both my parents to cancer mum in 94 dad 2010 it brings it all back 
Marie
Evening everyone and hello to all new moonies hope you are all doing ok marie would have loved a bit of that bread and butter pudding today Ha I’m back in the land of the living thank you life is good again the sun has shone I’ve walked my dogs and sssshhhh even cut the grass know I shouldn’t have but felt such an invalid over last wk that I just wanted normality and it’s not a big garden
Did have breakdown when post arrived as my 18 yr old needs complex surgery in London ,letter came through today with no date as yet but i wont be going and find that frustrating
and along with everything this wk and probably my last period ever arriving as well it just became all too much sat down and had good old cry.Which I now feel better for ,had lovely lunch with mum and sis they are so pleased to see me on the mend my hubby said today he was so proud of me for the way I had handled the last wk ( basically just got on with it as we do ladies)and I’m proud of the way he handled the vomit bowls with minimal gagging lol as I was passed caring should maybe train the dog up for that next time
I have sensitive stomach folks so please for everyone starting its not a sure bet that sickness will happen ,the hosp gave me a pre 24 hr dosage as well of ondansetron and steroids as i had said i had sensitive stomach but the rumblings started pretty early once home
just think that at that stage my stomach couldnt absorb anything so tablets were useless but there are a lot of other ways of getting sorted for next time and have faith that next time will be much better take care moonies lots of love caz xx
Hi Moonies
Aly I have just got off the phone to my mum and dad too- sometimes every conversation has potential for upset or misunderstanding on both sides. My mum also sounded very upset about my hair being short- as if I had any choice! Daren’t show her the wig- actaully it’s me- can’t yet get it out of the box! Good to have an updated list- I’m two weeks post first FEC now and I am so tired!! Best wishes for a restful weekend- specially to thise who have had sickness, tonsilitis, stress etc and to those starting soon- please believe those of us who found the reality much better than the fear we’d built up.
Barbara x
Hi Moonies
Aly I have just got off the phone to my mum and dad too- sometimes every conversation has potential for upset or misunderstanding on both sides. My mum also sounded very upset about my hair being short- as if I had any choice! Daren’t show her the wig- actaully it’s me- can’t yet get it out of the box! Good to have an updated list- I’m two weeks post first FEC now and I am so tired!! Best wishes for a restful weekend- specially to thise who have had sickness, tonsilitis, stress etc and to those starting soon- please believe those of us who found the reality much better than the fear we’d built up.
Barbara x
Can i ask some more questions please. My mind is at warp factor speed again !
Everyone is talking about the tiredness. Can someone explain what sort of tiredness it is. Is it the weary, climb into bed and snuggle down comfortably out like a light, restful sleep and wake up whenever. Or is it the agitated tossing and turning panicky, mind doing horrid things - ie, what I have had since my diagnosis.
I have been told to stock up on imodium and constipation meds. What type of meds should I buy and is it a good idea to start eating much more fibre and take the meds for the few days before the 30th ? I had constipation after the surgery and all but fainted in the bathroom, pain beyond belief and something I have never suffered from before and have no wish to revisit.
Which mouthwash is best for a sore mouth and which shampoo for hair that is going to be frozen at minus 27. has anyone had any success with the cold cap ? my hospital have a new design and tell me it has been succesful with some ladies.
I think I will be able to drink plenty of water/juice but I understand sometimes the taste may be odd, what do you all drink please.
Thank you
Ann
Hi Ann I wonder if we’re the only two still up-I’ve only had hormone therapy for 6 months (starting chemo on Wednes so I’m really new here) and wondering how much better or worse I’ll be on Chemo (I’ll have to come off the tablets while I’m having chemo). The tiredness has been really hard. I need to take a nap 5 days out of 7. I need to explain that I have two jobs and there is a lot of hard physical work involved with one and a lot of driving and stress with the other. So I have re-learned how to take naps. These are like crawling into bed for relative comfort (I’m not averse to a hot water bottle) and removing myself from all situations for 20-30 minutes. I have a set pattern of things I do before hand and I always sleep better after a light meal. The rambunctious lying in bed tossing and turning when you are really tired thing – I’ve been there and looking back to it just before or after some kind of non-expected event like a biopsy. There’s a very good introduction to sleep hygiene on NHS direct (Sleep and tiredness - NHS) Basically we find our own level and for me it’s a book in bed by torchlight and drinking lots of water. In fact drinking water is the clue to a lot of digestive problems (to answer the next question) and I’ve got in the habit of following Janey’s brilliant idea of having a full 2 ltr bottle and emptying it out as you have glasses of fluid/cups of tea coffee, a no-brainer way of boosting your intake to 2-3 ltrs a day. I thought I was up there and I wasn’t- no wonder I was suffering. Mouthwash- for me with a slightly sore mouth all the time and a slightly raised chance of cold sores a sodium bicarb solution is the best (1 tsp per pint of boiled water, although some take it stronger) This is cause I hate the taste of the commercial kinds. I’ve taken the advice in this forum about overcoming taste problems and my cupboard is like a strange barkeepers cupboard with ginger and other fruit extracts and tonic water. I hope you start to find some answers as time goes on and I’ll try to update my experience as I get into Chemo. Meanwhile rest well and stay well if you can!
Caz- thinking of you- hard to take bad news when we are feeling down. Sounds like you have a brilliant Plan B for SE’s and can’t wait to hear how you get on top of the sickness. I’ve got all of this to look forward to…keep fighting we will win!
x
Hi Ann, there’s a brilliant thread on the BCC website called preparing for chemo or something like that the first post on that has a brilliant list of essentials and then in following threads there’s Some additions. The basics seem to be:
immodium & senna as you never know which way it’s going to go. Someone also suggested madjool dates as they are delicious but also very good at shifting the digestive system
Ginger - crystallised, cakes, biscuits, tea all to help with nausea
soft toothbrush, mouthwash - difflam & corsydol daily both recommended, igloo ulcer gel
icepops, boiled sweets, pineapple all to help sore mouth
in the drink front i think its trial and error, ginger beer. Ginger and lime cordial, tonic water and fizzy water all seem to be favourites, and green tea with lemon.
oh and plastic cutlery & straws can help with the weird taste in mouth.
theres loads more tips but these seem to be the main ones along with drinking 2-3ltrs of fluid a day especially just before / after chemo
thanks so much again for your lovely comments yesterday, I had a long chat with mum last night and a good cry, I think she didn’t realise how anxious I was about chemo and didn’t want to get in the way, we both agreed we need to be more open with each other about how we are feeling, so feeling much happier today.
on with the sleepover preparations I have 4 x 8 year old girls descending in a few hours, if I can get through this chemo’s going to be a breeze! 
Ann - I start to feel droopy eyed at some point in the afternoon/early evening but I don’t take naps - have never been able to in the middle of the day. When it happens I just sit quietly and watch a film rather than do other things. I am sometimes in bed by 8 o clock but usually manage to last until 10ish. I found the clock watching through the night, tossing and turning stopped for me once I started my treatment as I finally knew what was happening and felt something was being done. It is far easier to deal with the known than the unknown I find.
I had terrible indigestion on day 5 of my cycle, this was probably my fault as I ate too much take away pizza the night before but as I was also constipated at the time due to the anti-sickness meds it wasn’t much fun. Since then I have learned to eat light and try to keep liquid intake, mainly water and herbal teas for me, and fibre/fruit/vegetables high at all times. It improved very quickly. The hospital advised me to take Gaviscon for indigestion but try dietary changes for constipation as a first point of call.
Zuzy - Are you ok? Haven’t heard from you for a few days. Hope all is well and you have just been busy.
Have ordered a silk pillowcase, burts beeswax cuticle cream and a crystal deoderant from Amazon - thanks to all of you for these tips.
Ann. It’s hard to describe the tiredness but I just couldn’t be arsed and just sat and watched telly for about 3 days ( days 11 and 12 I think) but feel better since then.
I never had any problems with constipation and was supplied with 3 bottles of mouthwash 2 to use every day and one to use if I got a really sore mouth ( which I didn’t this time). I also got 3different anti sickness tablets one lot to take 4 times a day and then if they didn’t work stronger ones then if still sick even stronger ones. Now been told if I’m sick I will have to be admitted as I’m on steroids for adrenal problem and that will make me more poorly :-(.
Hope this helps.
Marie