Gonna go and live on an island.........

I don’t know if it’s just me but people are beginning to get on my nerves!!!AAAAAAAAARGH!!! Since friends have known they either keep telling me of someone they know who’s ‘running around with bc - you would never know they were on chemo’ (yeah, right!!) or, ‘you’ll be alright’ (if i hear that one more time i swear i’ll stick my bald head …ooooohh!! sorry, but, i’m laying here with nothing on with a fan on my bum due to unbelievable soreness and a mouth that feels like the inside of a an athlete’s shoe!

I’ve decided that if i win the lottery i’m buying an island and done with it. Family are not much better either, i haven’t seen them hardly at all since diagnosis, just get the odd phone call, (to check i’m still alive) and some of them, quite honestly, feels like they got me in the grave already! I could scream. I hate cancer, hate it, hate it, and i hate the bloody awful side effects too, sick of feeling sick. It’s got to the point i feel like i’m not allowed to moan about being bald either, everyone just expects you to adjust to it and get on with it, i miss having hair and i miss feeling normal, accepted and treated like i’ve actually got some kind of control in my life.

Why do people feel that they can tell you what to do and how to cope with cancer when they have absolutely no idea what it’s like??? I usually put a smile on my face no matter how terrible i feel, but i’m getting to the point where i might just let it all show! Thank god for this site!!! I reckon i’d go mad if i couldn’t let off steam in here sometimes…any tips about the sore bum would be appreciated - driving me crazy!!! no sleep for 3 days now! too painful (had first taxotere this week - scared to go for the others now)

PS: i hope whoever reads this post has a good sense of humour xxx

Oh you poor thing - I really feel for you. Sounds bldy uncomfortable and i know what you mean about other people’s comments. It’s always the more peronal and demeaning symptoms we don’t talk about, so people assume they know what’s going on and that we’re coping with it. Well, you don’t want to tell the world about your sore bum, do you! And why are we always so blooming polite? why do we feel we have to smile and accept their thoughtless comments? it’s either about someone who’s had chemo and ‘didn’t miss a day of work’ or they tell me about people they knew who had BC and died! how’s that going to cheer me up!? I’m fed up of making allowances. Inside my head this reasonable voice says ‘they’re just trying to work it through for themselves, they’re upset for you, they’re grasping for something to say to make it all right’ but half of me, like you, wants to tell them to shut up. maybe you should have a good rant next time and see what happens.
I’m sorry your family aren’t rallying more. Again, I’m sure the truth of it is they’re scared witless and really upset for you, but it really doesn’t help when people back off, does it?
As for your poor nether end, you have to do something about it. Have you asked the doc for something? In the meantime, sudocrem always soothes my daughter’s sore areas - apply after a gentle wash with plain water and blow dry with the fan. Or do you need canesten - that’s really good for soothing thrush-type infections.
As for the island - just tell us where and when and we’ll all come and run away together. I’m going to sip an iced drink with a wedge of fresh pineapple on the edge of the glass. And eat chilled cream eclairs. What’s your plan?
Big hug
Jacks

Hello, I,m new here, I hope you don,t mind me joining in with the conversation.
I know what you mean about peoples"kind" comments. Until you experience your hair falling out people do NOT understand. I am fed up with being told “oh you look lovely in a scarf”. Well I don,t WANT to look lovely in a scarf. I WANT my hair back. I know it will grow again but in the meantime…
I have no support network where I live (in Turkey), you are just another patient, wheeled in wheeled out. No one answers your questions, you are told to just get on with it.
I have told friends that my sleep pattern is all over the place and that sometimes I don,t nod off until about 4 or 5am so why do they phone at 9am ish and then say “are you still sleeping?” Arggggghhhh.
Sorry to rant and I didn,t mean to highjack your thread.

AslansMum

p.s I started a thread saying I was new because I wanted to know if getting mouth ulcers whilst on chemo is normal. Is it do you know?

Dear Morgaina

It’s difficult trying to save everyone’s worry by not complaining. Especially about the more embarrassing aspects the treatment brings on. My friend said to me the other day that she was amazed how this is hardly affecting me at all… Of course it bloody is! It’s what I think about from the time I’m awake until I go to sleep and just because I’m not complaining doesn’t mean that there isn’t a mental aspect to this as well as physical. Mentally it’s torture sometimes. I can’t go out partying with my friends, I have to follow a diet, I get terrible mouth ulcers and my arm is aching. I have to wear a hot wig on a day like today, 30 degrees down here and I have no hair down below so i’ts like having nappy rash! I’m knackered sometimes frankly but no one sees that because I’m not complaining. Grrrr. maybe I should complain a bit more.

But that’s what you girls are for isn’t it? HAHA!

Cecelia. x

I am fed up with people telling me how well I look. My flippant remark is that they should see me without scarf and make up. But really, like the posters above, no-one can understand how it is really affecting us except us.

I found some factor 50 face sun cream that is really thick and leaves a white film on the skin. Perhaps I should cover myself in that and ask them how I look then?

It’s a bit like when I was waiting to hear my dx, I had people telling me that “so and so had a lump but she didn’t have cancer so you will be alright”. Hey, what’s that about. Someone else insisted that she knew someone who had chemo and didn’t lose their hair so I wouldn’t either. I told her that I had been told by several medical practioners that I would but she wouldn’t believe me. She almost didn’t believe me when I said I had actually lost my hair. GRRRR

When does the next boat leave for that island?

Sharon x

Hi Girls

I have come to the conclusion that I am telling it how it is now - I have done 6 weeks of ‘Ali is coping’ ‘Ali is great’ but I am cheesed off with the blasé attitude of some people, and I think that’s because we have been so upbeat and not moaning…well the gloves are off now, I can’t be a*sed to be nicey nicey, if I am having a c*ap day then whoever asks ‘How are you’ with the puppy dog eyes will get the lot thrown at them!!! 'Bout time they realised this ain’t no walk in the park!!!

I like your Island Morgaina - sounds great, perhaps we can buy it between al of us!!! xxx

Cheers
Ali

PS - Welcom to AslansMum, sorry you are not getting the support you need in Turkey, just use us instead!!! Yes I believe mouth ulcers are very common (although luckily I haven’t suffered yet). I heard alcohol free mouthwash, pinapple and honey
are good. xxxxx

Blimey girls!

I’m reading your posts and its like I’m reading about myself! Especially when Sharon mentioned about people commenting on how ‘well’ she looks. I get that all the time and I either say, ‘well I can assure I don’t feel well’ (when I’ve just had chemo) or ‘well, you wouldn’t say that if you saw my without the wig/scarf and no slap on’!

When first diagnosed I too had a million well wishers, and the names of people who’d had bc and were ‘ok now’ quickly rolled off their tongues. So, to name but a few: Kylie Minogue, Anastacia, Cheryl Crow, Deidre Barlow (Rachid, whatever her name is in real life!), Olivia Newton-John, Babs Windsor, big mo from eastenders… I wanted to say about how there are a million different types/grades etc of bc and so on but felt sure no one would really be listening. Woe betide the times when I dared to mention celebrities that had sadly succumed to the disease!

Anyhoo, enough of my ranting! ‘Welcome’ to Aslansmum. I’m sorry to hear you are lacking in the support dept out there in sunny Turkey but rest assured you’ll get plenty here. Mouth ulcers are v.v.common with certain types of chemo. Fortunately I have not suffered so far but my hosp gives me ‘Calcium Folinate’ tabs to take for a couple of days post chemo to prevent them and I also use an alcohol free mouthwash religiously,

Take care all,

Kelly
-x-

Island - how much do you want us all to chip in???

I echo everything everyone is saying. All the kind words and the ‘youll get thro it’ and the ’ o but your really strong’ jusst does your head in. I have been very good at ‘putting on a face’ in the past but dont think am gonna be able to carry on for the next god know how long. It is very very irritating and frustraing.

Morgaina - I have only had 1 treatment so have not got to stage of sore ‘bits’ yet (and hopefully wont). I know with kids I have nursed the kindest thing to clean the skin is good old olive oil on some cotton wool and air dry. There is also a very simple foam call Clinisan or Clinisept (cant remember exactly cos my brain is fried!) which is very gentle too - but think thats on prescription only. Also fresh pineapple is very good for the mouth (but am definately screwed if I need that cos it would make me vomit!!). Your hospital may have a tissue viability team who are the experts on skin products so it might be worth having a word with your bc nurse to see if yours has one.

Anyway, off for another day on the sofa I think by the way I am feeling.

Take care all
Sending hugs
FIona
xx

All

What a delightful thread, I have laughed reading so many of these posts it’s like a breath of fresh air. Thank heavens we can have a rant at each other without anyone being offended.

Just want to ditto all the above, getting sick & tired of hearing all the c*ap about “women sailing through chemo” - who are these women!!! And “so & so had grade 4 etc etc but 20yrs on is running a marathon”. My family are not a great deal of use either - I think because they live 45 minutes away (used to take me longer to get to school everyday on the bus!!) I’m the other side of the world and can’t help. I haven’t seen any of them since I started chemo (2 weeks ago) and if it wasn’t for my in-laws and fantastic friends I don’t know how I’d have coped with my 2 little ones on my bad days.

I too don’t want to look good in a scarf, or any other cancer disguise. My mum actually said (on the phone!) “Losing your hair’s not a big thing really” - WHAT? Since when did she go running for the clippers to sport a nice shiny head?

I saw a “friend” the other day who said that she had a client in who she hadn’t seen for ages. When he told her it was because he had cancer she said “I really admire him, he’s so brave” - not that she’s ever said she admires ME for what I’m going through - and I had to spit “people with cancer aren’t BRAVE, we are normal people just doing all we can to survive” - even that didn’t shut her up though, still kept going on about this chap.

Oh and my other rant that’s getting on my nerves. When people have asked how I’ve been on the chemo and I’ve told them I haven’t actually BEEN sick though I’ve felt like it etc etc… they say “oh, you haven’t been sick?” like that’s ok, it must be a breeze then. It’s like I have to try to explain how awful I feel otherwise they think I’m making it up. Anyone else had that?

I’m off to buy a sun lounger for the island…

Love n hugs,
xxx

P.S Morgiana - hope the bum’s better today x

Dear Morgaina

I presume you have bought a lottery ticket this week…because if you do buy this island I would like to come too.

The comments above are so true,

I had my first chemo last wednedsay and everyone’s jaw drops at how great I look, yeah but it was just 3 days ago!! What was i supposed to look like?? Uncle Fester??

And the next person who says “.just look at Kylie now…” AAAGGGHHHHHH

Soddit I’m gonna up the odds and buy a lottery ticket too

Jules

Wow I am so pleased I found this site. For the first time since April I am able to talk with people who understand!
I too am fed up with being told how strong I am. I live alone (except for a multitude of cats LOL) and believe me there are many a time I do not feel strong. People don,t understand how difficult it is coping with feeling nauseaous for days on end. Having to drag yourself out of bed just to go to the toilet etc. Like Mammabee has said, if you haven,t actually been sick then people think you aren,t really ill.
Thanks for the advice about the mouth ulcers - I can,t get fresh pineapple where I am but will try and track down some alcohol free mouthwash.
Morgiana - for a natural solution for your sore bum try infusing a camomile teabag, when cold add 5 drops of teatree oil. Then use as a swab - very soothing.
Thank you for the welcome Ladies.

AslansMum

p.s. Can you save me a place on the island please?!!

Hi all, just had to join in on this one, i too have given up the positive attitude for the sake of the well wishes, and even though i am lucky to be on tamoxifen and not had to have chemo or rads, you’d be amazed at how many people want me to have chemo!!! how will i ever get over it without they ask themselves!!! and boy, they don’t like it when i reply to their “oh you look so well, i’m amazed” with, yep, i might look well, but my head is totally Fxxxxd up, they don’t like that one bit, and if you dare to say that you’d like a little time on your own, you may as well be sticking a knife in them! anyway, back to the sore bum, maybe you have a pile there, have you had a lot of constipation? if so your dr should be able to give you something to ease it a little. as for the island, i’d like to book my place on it too

love to all

Alison xxxxxxxxxx

I believe there are two types of person in the world, those who’ve experienced cancer and those who haven’t. I also believe most of the latter type mean well and think they are being comforting when they tell you (unwanted) anecdotes about their aunt’s cousin’s neighbour’s sister-in-law’s experiences, good or otherwise.

We just have to grin and bear it as far as we are able. And if we’re not then walk away if at all possible.

(And to the person who had friends ringing up and asking if she was awake - well she is lucky to have friends who care about her.)

I suppose we are lucky that people care, but one kind soul was telling me about her partners mother, who had bc, how the tamoxifen had given her another 4yrs and wasn’t that great! i just agreed and didn’t tell her that i was on tamoxifen and only 4 years younger than the partners mum, i just could’nt have put up with the apologies, its a shame some folk don’t think a bit before they say anything about cancer, and sue, you are so right in what you say

Alison xxxxxx

SueBee - It was me who commented about friends phoning at 9am etc. I agree, if it were to find out how I am then I would truly feel blessed to have such friends, but unfortunately it has never been the case. It has always been because they need a favour or an errand that needs running as I,m not working and they are!!

I do appreciate that people care enough to ask how I am - don,t get me wrong - but like others have said, maybe I put on a brave face instead of telling it how it is.

At the end of the day, people don,t like to hear about how unwell your feeling.

AslansMum

Morgaina dear I had an awful sore bum on chemo sometimes I wanted to scream it was HORRID!!Finally went to gp who prescribed Canestan cream[usually for thrush]it worked almost at once and after 2 days had gone and didnt come back,its worth a try.lol horace

That’s it, it’s official, YOU’RE ALL COMING WITH ME ON THAT ISLAND LADIES!!!

I’m taking champagne, strawberries, belgian chocolates, a jacuzzi, a masseur (hehe) and a huge tub of sudocream…lol and we could send all those well wishing busy bodies a postcard!!! Seriously thanks for all your comments, was feeling so down and fed up this morning when i wrote that post, and read all your stuff and you all cheered me up no end, still have fan on the bum at the moment, haven’t really left the bedroom since tuesday, but am trying some of your suggestions to ease it! Hang in there all, we KNOW how it feels, and i don’t know about you but one day, yes, one day, when i pluck up the courage, i’ll let it all show and shock the buggers!! Take care xxx

PS The island is gonna be a wig-free, minogue-free, newton-john free, neighbour runing marathon with bc-free paradise! xxx

God -all these comments could be me talking
I want to come on the island too!

Jools

Hi All
Have to join in. Have spent an afternoon crying and this has cheered me up. My best story is of my mother in law telling me that a elderly gentleman from my church was wondering how my diarroea (spelt wrong ) was - how he knew I had it or why he thought he had the right to ask - I hate this cancer my boob has been stolen(albeit replaced by a muscle from my tummy), my hair is on its way, my dignity has been stolen - everyone thinks they have a right to know every last intimate detail of this illness.
And yes I too am fed up hearing of a cousins aunts brother sister who went to work every day during her chemo and didn’t loose a hair. Or the person who tells me of course I’ll get through it as ‘everyone does now’. Sorry about the rant but I know you all can empathise.
Any room on that island?

MuddyXX

hi girls, This thread is making me smile…I can’t tell you how many people have told me how great I look, at which I reply ‘It is all make up!’. I promise them that I don’t look that great at 4am when I’m having a hot flush, feeling nauseous and can’t sleep etc…So I think I will hop on the cruise to this island as well. BTW Morgaina, about your ‘down below’ problem…have you tried Anusol for it? It may help, otherwise there is a stronger cortizone cream you can get from the GP’s, hun.

Fuschia
xxx