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Standing outside the dark, dark woods.

Re: Standing outside the dark, dark woods.

S2S I think we need to track down CMs mega bucket so there is room for all of us, I do warn you that my singing isnt great but it may scare off the grelims so that could be an advantage.
Ninja, 2 weeks is going some, at least you get to go away on holiday.

Re: Standing outside the dark, dark woods.

Jo - My Oncy says I'm having surgery *2* weeks after my chemo ends at end of Sept but as illness has prevented us from having a holiday since 2009 he has agreed to let us go away at October half-term first. But he won't entertain me having any chemo delays.

My LGFB is 2 weeks today.

Re: Standing outside the dark, dark woods.

Singing whilst your head is in the bucket really helps to fend off any stray thoughts. Actually is there room for me in there too? I know im being wussy but Im really not over enthusiastic aboutthe rads they are going to point in my direction tomorrow.

I went to a LGFB sesssion today and as everyone always says - it was good fun and the goodie bag is mega. I'm not sure how much I'll use most of the cosmetics but i had a larf.

I dont drive any more cos my eyesight is dodgy but the remote controlled wheelbarrow hasn't tipped me out more than twice a day so far - and maybe even that is due to my chemo brain. i can't remember! 🙂

hugs all

Re: Standing outside the dark, dark woods.

CM I need a bigger bucket please, been to seen onc tonight and he wants me to go for a mammogram and ultrasound on Friday to see how tumour is progressing before surgery. Wasn't really expecting this as I still have 2 lots of chemo to go. He then said they will operate within 3 weeks of the final chemo. Head really isn't in the right place for all this so I need a bigger bucket to shove it in form a few days while I try to ignore it all in best ostrich fashion.

Re: Standing outside the dark, dark woods.

I only had a bad dose of chemo brain after FEC5, the rest of the time my worst SEs were the stinky bum, burnt mouth and dormouse invasion. I am convinced the speed of administration and amount of saline that goes in with it are important, as is getting Emend to keep mega vomits away.

I drove the whole time, but didn't do long journeys in the first week because the exhaustion seriously affected my concentration, and I tried to avoid driving at all after FEC5 because my head wasn't on right, but there are a lot of people who have SEs as mild as I did, or even milder.

A lot of it must just be down to luck of the draw, and I am extremely thankful that I definitely drew a very long straw.

The Duvet Game is fun, isn't it! My cat doesn't like it if I'm at home as I end up throwing the duvet over him and he gets cross and then bites my ankle. I am trying to train him to learn that my left leg is NOT a squirrel, but he remains unconvinced...

Re: Standing outside the dark, dark woods.

My family banned me from driving on weeks 1 and 2 of chemo. Once I reversed into a bollard in the carpark. One time I forgot where I parked and had to ring family for assistance to look for my car. The list goes on... oh, and I left my car keys in the fridge. Happily I seem to be OK now the chemo fog has lifted. I did worry at one time that chemo brain might be permanent. ST I'm liking the suduko test:)
Tamoxifen has frightened the sleep fairies away at the moment. I'm playing the onoffduvet game every night. Anyone in Tam Towers tried evening primrose oil? I'm thinking I might give it a try.

Re: Standing outside the dark, dark woods.

Chemo head is a nightmare - I haven't been out in my car (EC 2 yesterday) as the day after EC 1 I managed to lock my car keys in the boot of my MGF and there is NO WAY you can get into the boot without the keys. I ended up having to get a taxi back home to get the spare keys. Then on the way back from getting my car I nearly ran a red light - if fact I am pretty sure I would have gone straight through if it hadn't been for my 25 year old son yelling at me. I do think they should warn you not to drive for a couple of days after chemo if you think you may be impaired in some way. My way of testing myself is to see if I can do a moderate suduko on my IPAD - took me 43 minutes this morning which is why I haven't been out in the car.

Re: Standing outside the dark, dark woods.

I reached a point where the sight of the pill organiser made me feel bilious. I don't even like to catch sight of it now, a few months on. I avoided most of the disasters by staying home and not going places on my own--I had to quit driving except for a few days and short distances each cycle after a while. But yes, walking off without credit card or shopping, not being able to remember names or anything else. At least I never made it out the door without being called back, but I occasionally came home with some items which were not what I thought I had bought.

The fear of going out alone once I had had some serious dizzy spells and had fainted really caught me by surprise.

My OH was brilliant about chauffering me, and he likes going round the shops just before they close to get bargains anyhow, but I was rather housebound by the end.

You have a better idea of what to expect in the second half, but that's not always a good thing. And you probably run through any natural resilience somewhere in the second half as well.

I don't want to be discouraging, but it really takes whatever stoicism and endurance you have and this is probably when family and friends can make the biggest difference. But at least you do reach a point when you can start marking off the days, blood counts permitting.

What about making a list for your husband, Wandy, with items like 'check car for essential medications etc left behind in chemo fog'?

Re: Standing outside the dark, dark woods.

Hello everyone,

Back from FEC3 hell! Can't talk about it but it was vile and I can barely think about the next 3 without feeling ill....Soooo get the chemo head, its unbelievable isn't it? I am a very control freak, organised person who has had a number of reasonable career responsibilities. I pride myself on my ability to handle anything. Since being on chemo I have left my passport in a shop, thereby missing my flight back home and having to get eurostar to PAris and have OH drive 400 ks to Paris to fetch me, walked out without major jewellery shopping items on another occasion, (having paid for them..., booked our eurotunnel crossing the wrong way round,and not realising till we get to checkin, left all my important antiemetics needed for the 3 days after chemo in the car as my husband drove off to go away 300 hundred miles.....and the list goes on!!!! It astonishes me!!! My husband will not let me drive for at least a week after chemo anymore in case I crash or abandon the car!!

And taste??!! Everything tastes like fillings that have gone bad in your mouth. HOWEVER it has not stopped me from eating!!! So on top of being bald (albeit with a beautiful head!!), I AM BECOMING VERY FAT.

BC the gift that keeps on giving!!

Have a good afternoon all.

Wandyx

Re: Standing outside the dark, dark woods.

Thanks PW. She'll be fine, as long as I can find the self-control to keep myself from strangling her.

Re: Standing outside the dark, dark woods.

Good news
1. no Tax Trots so far today
2. insurance are going to pay us out in full for our stolen mountain bikes!!

PW - GL with the terrapins/newts

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Re: Standing outside the dark, dark woods.

Crying when angry - oh I am so glad it isn't just me!!! This is a problem I have battled with all of my life, so can't blame it on the chemo.
I hope your daughter is OK Choccie, and you too - I often wondered if i was going to survive my lot through their teens, and I didn't have bc to deal with at the same time.
Just had blood test in the hope that WBCs have recovered enough for treatment this week, so fingers crossed that there will not be phone call later.

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Re: Standing outside the dark, dark woods.

J- my foul taste on tax was bitter aloes and is absolutely disgusting but unfortunately it didn't stop me eating.Think I was trying to find something that tasted ok!6 weeks later a few things taste a bit strange and I think I'm going to Slimming World on Sunday.
I never cry- actually wish I could because I just get more angry and make a total fool of myself anyway lol Think I've only cried twice in this whole thing and that was in front of my husband only.
Radiotherapy finished at end of this week but don't know if I'm ready to leave the woods completely just yet.
Margaret x x x

Re: Standing outside the dark, dark woods.

Ah thank you CM that's better, head firmly inserted inside bucket again.
I hate it when I burst into tears when I am angry, annoys me even more then I end up blubbing harder until I am one big mess of snot and tears. Not a good look!
I think you've hit on something with the WBCs, maybe NE is holding them ransom until we are nice to him again

Re: Standing outside the dark, dark woods.

I now have a pathological fear of toasted cheese sandwiches, as that was what I ate before I exploded after FEC1. Feel nauseous just at the thought of one, really would heave if someone put one on a plate in front of me!

JoC, I've got my bucket, thanks, so come on over and shove your head right in. It's a special bucket and grows to allow as many heads as possible, and the sand in it isn't all scratchy but feels like soft down or smooth fluffy fur.

I think all the sleep fairies in the wood descended on me last night, thank goodness, so although I missed out on a night's sleep on Sunday, I'm feeling bordering on human today.

Went into the school to administer further doses of terminal embarrassment to my daughter. Fell apart on them. Don't you just hate it when you're so angry you burst into tears? What IS that?!

Will be back wandering around the woods with a pointy stick, ferretting out any spare WBCs whenever I spot a burrow. I think they're getting sneaky now, as they tend to burrow near wherever NE happens to be, knowing that we won't deliberately go close if we don't have to. A bit like clown fish hiding in the stinging tentacles of anemones, I suppose.

Re: Standing outside the dark, dark woods.

My taste comes back about a week and a half after tax dosing but I seem to spend most of the time eating during that time trying to find something that tastes ok, so I've put on half a stone and I'm not impressed. Obviously I'm blaming it on the steroids and not my inability to stop putting food in my mouth!

Re: Standing outside the dark, dark woods.

Jeanette - I know what you mean about the breakfast. Since I started chemo, I have only managed to have a cooked breakfast once - and that was scrambled egg and one slice of bacon at home while I was on EC. Since I've been on tax, OH has done bacon a few times at the weekend and I haven't been able to face it.

Ninja refusing bacon butties! Whatever next?

Re: Standing outside the dark, dark woods.

Good morning campers. As expected I missed out on a visit from any of the sleep fairies. Instead I had the nowyourhotnowyourcold gremlin in my tent, so it was covers off, covers on most of the night. Funny mouth during the night, kept thinking I had bit my tongue but hadn't. Supposed to be going for a holistic neck shoulder and back massage today at StalagLuft II but I think I will delay it as I am knackered and still feeling a bit spacey after chemo 2 yesterday. Wiggie got an outing yesterday but gave me such a headache after only half a hour that I put him firmly back into his box yesterday and put on a soft head wrap which is so comfy. I might order another one in camouflage so that I can do flame thrower patrols with the rest of you. Had a call from work yesterday, the first contact I have had from them since dx a the end of May. They want me to come in for a meeting - I told them they would have to come to me which they have agreed to do in the first week of August. There is no way I would go into the centre - its a huge parcel delivery place - american run company and just full of, as you would expect, parcels from all over the world that need delivering. Contents can vary from mobile phones, second hand clothes to medical samples and blood/tissue samples. One of my jobs was to hand search some of these parcels so can't see me doing that job for a while.

Anyway, enough rambling. Going to tip myself out of bed and make myself comfy on the sofa - ring to cancel my treatment and hopefully set it for another day when I am feeling better.

Wishing you all a comfortable day with minimal SEs

Re: Standing outside the dark, dark woods.

p.s meant to say to GI Jane, I put the iron in the fridge in a chemo fog!!? Oh response...it'l cool down quick!!X

Re: Standing outside the dark, dark woods.

Hello and good morning all woodlanders, I hope all is as well as can be expected...I am surfacing after TAX2 and yep...got the sore mouth too, I don't know about anyone else but I am fed up of things tasting like a cross between cardboard( I don't know why we say that...do people really eat cardboard?) and metal ( thinking about it I don't eat metal either!) OH asked me to try and explain the taste, I said 'did you ever put batteries in your mouth as a kid well it's a bit like that!?*' I was really under the cancer clouds yesterday so he took me in to town as I needed to return some shorts I had bought, I said I was starving so he said he would treat me to a 'full english' as we walked in the bacon ect smelled FAB!... when waitress had served us I took a bite if the bacon....metal+ cardboard!!!!! It was at that point after months of being 'brave' (ahem!!!!****) I finally cracked and there in the cafe I sobbed all over my full english ( to the disconsolation of the chef... I think he was about to phone his suppliers!) when I could speak I looked at OH and said with even more blubbing...'even the tea tastes vile!!!!!!' now for those who don't know me...tea well most who do would say that tea, runs in my veins instead of the correct fluids! things are def at breaking point when you can't even enjoy a cuppa! however the chef/owner as one of OH's customers ( he cleans his windows!!) fully understood...phew! I bet he was glad the cafe was all but empty even so!!?, So this morning I have got up feeling much better & even though I have headache prob due to lack of food!!! Well that was my embarrasing story, I am now trying to give a good clean up everywhere as my kids finish school today!!!YEAH!! ( no ironing uniform & doing packed lunch)

Love to all, wishing you kind sise effects and visits from the fairies of your choice xxx Jeanette

Re: Standing outside the dark, dark woods.

Morning, I've got the sore mouth thing too but mine is centred around my wisdom tooth, feels like chronic tooth ache but I am sure it is a SE as it did it on the other side for the last lot of tax. I had to get up and take painkillers in the night as it was so bad. No gremlins in my tent today though well apart from the tooth ache one and I've given him a good kicking so he is currently limping off back to the woods. If Anyone sees him please give him another kick from me.
Still seem to have mislaid CMs bucket though, I wonder if one of the gremlins has run off with it, maybe I should have a tent clear out.

Re: Standing outside the dark, dark woods.

I stole a Sleep Fairy last night.

No Tax Trots yet today (phew) but mouth still sore so sounds like terrapins are still low. Hope I can have Tax tomorrow and not get delayed. Tomorrow's is 5/15 - a third of the way through Taxy-Waxy!

Re: Standing outside the dark, dark woods.

it's very quiet in the woods tonight. I've been patrolling with the flame throwers but haven't see any wayward gremlins lurking about. I'm going to have a hot chocolate and brandy (good practice for when I go to WOMAD) and then I'll resume patrol.

Re: Standing outside the dark, dark woods.

Been in StalagLuft II for 2nd poisoning. Ditched the cold cap as most of my hair vanished overnight - and I now have a shiny scalp glinting in the sunlight (what sun??) Wasn't prepared to put myself through the cap thing again and waste more hours than absolutely necessary so it was soft head wrap on and in for chemo and home within the hour. Hopefully will not develop a temperature like last time but I will be keeping a very careful eye on things and resting more than I did last time.

Going to crawl into my sleeping bag soon - not expecting the sleep fairy tonight after the steroid injection but had plenty of sleep over the weekend.

Re: Standing outside the dark, dark woods.

I don't blame you for kidnapping the sleep fairy, sounds like you deserve her tonight. Hope your daughter is ok, kids cause you worry like no other.

Re: Standing outside the dark, dark woods.

Before anyone objects I am kidnapping the sleep fairy tonight. Didn't even get to bed last night, and I don't mean I slept on the sofa either, because of the idiocy of my youngest. Long story, won't bore you with it and she's absolutely fine now, but it involved spending all last night and most of today at the local hospital. No bed, no sleep.

I know some of you have been really trying for kids and my heart goes out to you for BC messing things up for you, but you can now look at me, run ragged and worried to pieces, and feel smug.

Re: Standing outside the dark, dark woods.

Hips: " seem to have developed St Vitus Dance. I can't keep still. Constantly twitching arms and legs. What's that all about?"

I get that if I take codeine for a while and stop - no matter how slowly.

Re: Standing outside the dark, dark woods.

Thanks for all the comments about Ilfracombe - it seems to figure in a lot of peeps lives. CM - we got out to Woolacombe and really enjoyed it and we just beat the main school holiday rush.

i didn't notice any upgrading tho' Dancing girl. maybe thats to come?

Rads start on wed and I've just realised that my new comfy bras run right across where the main burny beams will be. I need to get a couple of soft crop tops i think - it's not going to compare favourably with your mega shopping trip SCACO.

Looking round rads rushes i saw a few tents i recognise and i trod on a gremlin (by accident 🙂 ) so thats one less to worry about. It didnt sqelch much so i dont think it was the poo grem.

hugs all

Re: Standing outside the dark, dark woods.

Poo fairy absent here too... today (week 3 and feeling good) I went into town shopping. Went into a different mobile phone shop and out came a string of words - right words, wrong order!!!! Chemo-fog or what?! So funny. Went and got nails revarnished... explained I was on chemo.... paint...paint... "You haven't lost your hair then?" "It's a wig" Never!!! Encouraging too..... Perhaps I should start a thread entitled "daft things we do in our chemo-fog"??

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Re: Standing outside the dark, dark woods.

HOoray, I'm joining the club. My poo fairy has paid a proper visit. I eat so much fibre I'm beginning to grind my teeth down but the Ondanstron makes sure it's in vain. Finally, normality. Off to yoga class tonight, first time for years. I seem to have developed St Vitus Dance. I can't keep still. Constantly twitching arms and legs. What's that all about?

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Re: Standing outside the dark, dark woods.

All that and the work gremlin has got me, I'm going back oh its scary to think of as only been a few times since chemo began and have worked from home but now this week going to the office first time since middle of May - like a new girl at school! Shar xx

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Re: Standing outside the dark, dark woods.

Hello campers, oh GI JAne, just read ur post re mobile phone shop and earrings, oh u have given me inspiration, I am updating my phone, dare i do the same............ im feeling not so brave cos tho my rads start next week, in 2 weeks i have my first check up with consultant, mammogramm scan etc and i am sooooooooooo scared, surely it has to be clear after all the posions i have had to endure these past 6 months!!!!!!! Shar x

Re: Standing outside the dark, dark woods.

Bev - you don't want my Poo Gremlin, his twin brother (joined at the hip) is OMGmystomachhurtsso muchImdoubled up.

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Re: Standing outside the dark, dark woods.

Wish the poo gremlin would visit my tent, his brother has been in residence for too long now and he really doesn't give a .... either.

I've dreamt of hauling up food to make room (like a clown pulling bunting out of his mouth) for the past two nights now - there just isn't any more room at the inn..........

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Re: Standing outside the dark, dark woods.

Happy Shopping SCACO! Enjoy!

Re: Standing outside the dark, dark woods.

Those work gremlins can be very hard to shift I've heard

Re: Standing outside the dark, dark woods.

The poo gremlin got me yesterday too, where was he when I needed him a few days ago?

Re: Standing outside the dark, dark woods.

Thank you for your invitation SCACO - Do you have a work gremlin in your woods? only if you do it's grabbed me and got me back to work part time.....

Re: Standing outside the dark, dark woods.

I'm harbouring the Yourenevergoingtogettotheendofchemo Gremlin as well. He won't begger off!

Poo Gremlin is also making herself known.

Had an interesting day yesterday at FlugTag. It was being held very near home so we walked over with DD and SiL for the day. Very tiring day and so the Sleep Fairy was in my tent last night.

Sore mouth yesterday and today so I guess my terrapins are getting low again.

Just grateful that Poo Gremlin wasn't around yesterday!

Re: Standing outside the dark, dark woods.

Happy anniversary June and glad S2S had a lovely week in Ilfracombe.

I've been to Ilf once but never stepped foot in it. We were on our (in)Competent Crew course...

...and we had just done a night sail from Cardiff. When we got to Ilf, the tide was in and suitable for sailing so after a cup of tea, we set straight off for Swansea without sleep.

It looked nice from sea level!

Re: Standing outside the dark, dark woods.

Thanks SCACO I hope you kicked his butt for him too! I can see a glimmer of light through the trees if I look really carefully but the 2 rather large tax gremlins seem to be doing their best to block it. I'm going to tackle one of them next week but they do seem to get bigger the further into the woods I get and it takes more effort each time to fight them off. Still I'm ready for them and the bringiton fairy told me she'd be back in time to help me next week. She's been AWOL lately so I can only assume she has been helping one of you, I hope so or I am going to have words with her when she reappears as if she's been skiving I won't be happy.
SCACO I'm quite excited for you , I hope you've warned the bank manager that some serious shopping is going to take place.

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Re: Standing outside the dark, dark woods.

Morning All

S2S - glad you've had a good time. We've aired your tent for you and kept the gremlins out.

JoC - i have lassoed said Gremlin and have dragged him kicking and screaming from your tent. I've also cleared the paths a little and lit some beacons to show the way. There is an end. x

Dee49 - wise words indeed. please feel free to pitch a tent and have the role as The Woods Oracle. x

Alls well at the Marsh. Me and Babs are off for an outing tomorrow where she'll get measured up for a bra. Very exciting as i threw ALL of my bras away in disgust when dx (This was no mean feat as i only had matching sets and there were at least 15 of them), which means i can begin the replenishment exercise. Be afraid bank account, be very afraid.
x

Re: Standing outside the dark, dark woods.

Can I just hop into your thread re the swimming thing? I was told def no for pools and the sea - but I did have some nasty burns and blisters and they explained to me that I could still pick up an infection/bacteria from the sea which led me to believe that if the skin wasn't broken then the sea would be ok.

Bc is a bummer isn't it 😞

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Re: Standing outside the dark, dark woods.

S2S - glad you had a lovely break! Ifracombe - haven't been there for a very long time - I think I mentioned when I was losing my hair that I have some bad scarring across my head as I went through a car windscreen as a teenager. That was my first ever camping trip with DH and a group of friends - to Ilfracombe!
Happy Anniversary Gypsy Lady, hope you managed to celebrate.
Wifely duties - now what are they exactly? Not sure that I remember now, it has been a while...
I had a bad-tempered day yesterday - no real idea why though, so DH was not very happy with me.
Hibernation sounds like a good plan Jo C - very tempting to just stay under the covers for a few months until this is all over, and only emerge if that bucket is handy to firmly hide underneath!

Re: Standing outside the dark, dark woods.

Oh and Happy Anniversary for yesterday Gypsy lady x

Re: Standing outside the dark, dark woods.

Well it's a miserable day here today so if it's ok with you all, I'm going back to hibernate in my tent for a bit. I seem to have the yournevergoingtogettotheendofchemo gremlin with me but I've shown him my flame thrower and he's backed off a bit. I have told him I'm not afraid to use it but at the moment he is sitting grumping in the corner and I am doing my best to ignore him. I do seem to have mislaid CMs bucket though so if anyone finds it please could they stick it outside my tent and I will reinsert my head when I wake up later. Thanks x

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Re: Standing outside the dark, dark woods.

This disease has a lot to answer for.

My head is so stuck in treatment mode that my OH had to remind me that it's our Wedding Anniversary today, DOH!

Lucky I had Church this morning, I was able to pop into Tesco's and pick him up a card.

June

Re: Standing outside the dark, dark woods.

Cm,

I was told its ok to swim in the sea, have also checked my leaflet from hospital & it says swimming pools are a no but the sea is fine.

Bev.xx

Re: Standing outside the dark, dark woods.

Not that I'm jealous, but I had hoped to get a week in North Devon but rads have put paid to that one. So I'll be heading down to Woolacombe for a weekend in the middle of rads and won't be able to go and play in the sea or sit in the sun. STILL very fed up at that. I don't think they realise just what it meant to me to have a break, not that it matters anyhow. I know the important thing is to get the treatment over, but the timing completely sucks.

Re: Standing outside the dark, dark woods.

Sky2sea, glad you enjoyed Ilfracombe. I hear they are spending lots of money on improving it. I hope so as we go there in a couple of weeks. Well done with four flights of stairs!
Good luck with rads on Wednesday.

Stella xx