Storm Riders/A Town Called Determination

LOL! Must remember to ask the wig lady when I go back in, and remember to take the camera with me to capture the look on her face. :smiley:

i dont want to put a dampner on anyone in here cos we are all here to support one and other. but i just want to share some info that i think if anyone doesnt know they should.

ok its like this, i have been told i will have 18 weeks of chemo, thats a cycle of chemo every three weeks, but im afraid it doesnt always work out that way. after i get a dose of chemo, there is a period of time when you are really sustible to infection, if you do get an infection, you have to get intravenous antibiotics for at least 5 days (usually in hosp), therefore your cycle may be delayed by an extra week. also if they check your white cells and they are not high enough they give you an injection in the stomach to help bring them up then they wait for a couple of day and test them again. and once again your cycle may delayed. what i am trying to say here to anyone who isnt aware is that please just take each week as it comes. dont set your heart on a specific date that you will be finished because when it doesnt work out like that it only causes more stress.
i feel like a real prophet of doom here but honestly i am just trying to maybe save someone some heartache. these were things that they never told my daughter (maybe for a reason). but she wishes they had because instead of 6 months of chemo she ended up with nearly 8. if i am out of line telling you all this then i apologise its just that i would want to know this. i hope i havent offended anyone and i hope you dont think i am trying to make people feel even worse. but in my opinion knowing this makes you more prepared if it happens. of course none of us may encounter any of this, and i really hope so. tell me if you think i was wrong to give this info.

take care
martina

Never worry about telling us things you find out Martina. The more info we all have the better. We ride the storm after all, we never run from it! :0)

I knew that too. I’m already on 28 weeks (4 rounds of Epi, then 4 rounds of CMF which is delivered over two weeks), so no way I want it extended. Best I’m trying for is to avoid infections. The low blood count I can’t do anything about, so I’ve just got my fingers crossed there.

At last I found a reason for having a hoodie on my dressing gown. Toasty warm in the morning on a nearly bald bonce! Goonie is dark brown and ties like a sack in the middle, big hood - I’m doing the Order of the Epi monk look at the moment! (apologies to anybody actually in an Order or who is a monk…)

Morning all

Just been catching up on last night’s comments, and cackling my head off - good job I’m working from home today!

Have just noted the potential cost-saving aspect of chemo, that’s a ‘glass half full’ thought - watch out for a well known chain of hair salons going into liquidation, if I cease to be a customer for a while though :sunglasses:

Rosie (48 hours from now I’ll be having pre-op sedation…)

Carole - believe me is is also weird when the hair grows back… wink… lol actually my hair is growing back so weird… it is coming in patches although it is not quite so bad now… and after a lifetime of poker straight hair i seem to be getting the “chemo curl” :o unfortunatly it is coming back with a fair amount of grey though - so i guess you could call me Silver Streak…

At the moment I am having some final hiccups as I reach Determination… My skin is burning quite badly now that I am having the final few days of rads - so I had to see a Dr after yesterday’s treatment to get some painkillers and cool gel packs to place on my skin…

Oh and someone must have been shooting at us yesterday - we were on the way to the hospital on the A1 when suddenly one of the tyres shredded and we had to pull across into a layby! :o Luckily we were not going fast due to the snow etc… So my hubby had to stay with the car waiting for the repair truck and I phoned some of our old neighbours who took me to the hospital…

Hi gang,want to say thanks Martina for your post,knowledge is power,I dont know yet if will have to go down the chemo route but I would far rather be prepared for it if I do, so the more experiences that I can read about the better,it all helps.
Re the post chemo curly hair, my yougest asked me if that happens does that mean your eyebrows grow back curly too ! Ooh how we laughed at that scenario ,took it to the nth degree of course.
Good luck Rosie,I’m offski for a pedicure as a “me” treat,havent seen the beautician for a while, am awaiting that awkward silence after she asks how I am and what I’ve been up to…lol,should get an extra long foot massage for that .

Sandra x

Well chicks re martinas info which is excellent;it is vital to call your chem unit at once if your temp reaches 37.5 and stays up for 2 hours[dont take anything during that time].It happened to me and I had to be admitted for IV antibx but was only in for 48hrs.I had Neulasta injections after each chemo to keep wbc up but they had fallen by final tax and I had neutropenia which is why I was in hosp.
Come on girls ride on these obstacles can be negotiated and we are here to help you along if you falter.
The Old Onexx

howdy pardners im on my way into town. start my chemo next tuesday. so im packing up my saddlebags and giving my horse the lowdown on what i expect from him.

im glad that i dont seem to have offended anyone with the info i gave. and thankyou to everyone who said it helped.

as of yet havent decided on what i will get once the hair decides to abandon me. i got a “pin head” and hats always make me look like a match stick cos i am thin and the with a hat on its like the round top of the match. not sure about that analogy but im sure you get my drift. really dont want a wig either cos i tried my daughters on and boy was i ugly in it, looked like a drag queen. yes i know they can make all different styles but at the minute im jus looking for a small (prob a childs size) knitted cap. my youngest daughter is making her confirmation in april and thats the only thing i am thinking about. dont want everyone looking at the “poor” woman with no hair. my sister is a photographer so she has suggested that she takes some photos of me now and then photoshop me into the family pictures taken on the day.

enough of me now. carole when do you get your next chemo, you seem to handling it just fine. glad to be able to put a face to the name.

gennie, some people just dont have a clue do they, you tell him you have a friend in Bandit Country (South Armagh) who will be paying him a visit if he dont buck himself up. :-#. (thats supposed to be a scary face).

horace thank you for agreeing with me and for the temp info, didnt remember that.

wanna say hi also to a few others on here ,Sal, Sandra and Rosie, sorry if i left anyone out.

take care
martina

Just added a photo of me in my highly attractive NHS wig… :smiley: Actually i was given a voucher and went to the wig shop in the centre of newcastle - the staff in there were great… And they let you try on as many colours and styles as you like…

I’m just back from today’s treatment and saw my onc… i don’t have to see her now for 2 or 3 three months and she said that they don’t like to keep giving people unnecessary scans, blood tests etc so it will just be annual mammograms unless i actually have any symptoms anywhere else… I did try and get her to say what my prognosis is now - but she just refused to say - said that she doesn’t like to talk in % terms etc…

Rosie, what are you getting done? Are you feeling ok about the op? The Doc here in Determination is brilliant! (aka surgeons, onc, bc nurse etc).

Theresa, Whoop whoop! You’re done kiddo! Amazing. How does it feel? Do you have to do tamoxifen? Whatever you’re doing, don’t head for the Border yet Silver Streak, hang around in town for a while. When the rest of the Storm Riders ride in (they should be coming down off the ridge by now) we’ll head to the saloon and crack open a few bottles with you. You’ve still got that last stretch before the Border, so might as well rest up a while and gather your strength. Oh, the wig looks amazing! Hope mine looks that good.

In case anybody missed it on the last thread, the Border is about 20 miles outside of Determination. The land on the other side is where we’re all headed, the land of the future and opportunity. Unfortunately the Rancher who owns all the land in between and pretty much most of Determination makes it heck of a difficult for everybody to just ride through. So we all fight our bad guys in Determination (they’re all the negative things about treatment and how bad we feel), then still have to work our way past them for that last 20 miles (post treatment to getting the all clear), then we get to kick the Rancher up the bahookey as we each ride or stride across the Border. Oh, anybody already across the border can feel free to wander back and hang out anytime, like The Old One. Once you’ve been through it the Rancher loses all power, and you can come and go as you please.

Sandra, pedicure sounds like a brilliant idea. What are you getting at op time? We’ll be looking for the dust (or snow if this keeps up) kicking up as you gallop through to Determination. Careful of that pass though, it’s snowing out there. Storm Rider alter ego? Scotia? Just a suggestion. Doc here will probably need a name before he operates! :slight_smile:

Martina, what chemo are you getting? You’ll be hooked up at the same time as me. I’ve got the second one next Tuesday. I’m sure you don’t look nearly as bad in hats as you think, but I’m loving the matchstick image. Lol! Blackjack looks great in a hat. Next time you try stuff on think Blackjack. When I was cutting the hair off yesterday I kept imagining Steel doing it. Then I tried on my hats and scarves again and thought Steel, and suddenly there she was, confident, solid, determined, and daring me to go all weepy again at risk of getting a good whupping! Oddly enough I didn’t want the whupping, particularly not from Steel (although I think Mule might dish out an even better whupping…), so I started to think I actually look pretty cool with no hair (nearly) and in my new headwear.

Yes, yes, I know, the men in the white coats are on their way and you’ll all help with the straight jacket. :smiley:

Carole - I hope you had a better day today. It’s wierd isn’t it how it jumps you when you’re not expecting it. But we’re all here, willing you on and sending out virtual hugs for you.

My pre op yesterday shook me a bit I have to say. I was going to go alcohol free in the lead up to the op on Thursday, but I have to admit that I had to crack open a bottle of red wine last night. And then I watched Dispatches on the telly, which was all about ageism in the workplace. How depressing was that? Now I’m thinking I’ll never get a new job :frowning:

On the subject of pre op, did anyone have their feet groped by the doctor? After she had listened to my chest, she asked me to take off my shoes and socks and she felt my insteps. Wierd or what? I was going to ask her what she was doing, but she kept going on about my chest, and that she had to speak to the anaethetist, so I got distracted. She also wanted to feel my boobs. WHY? I’ve been groped and mammo-ed, mri-ed, ultrasounded,; what else does she think she’s going to find? I told her she wouldn’t be able to feel the lump, but she said yes, she could feel it. I didn’t like to tell her that that was probably scar tissue from the second biopsy and that she was feeling on the wrong side!!! Tee hee. I’m told I should be out the same day. That would be good, back in time for my ER fix :slight_smile:

Gen, if I was you, I would seriously consider leaving the Bob Cratchett role. You’ve got enough on your plate with a young family and chemo, without being beholden to a creep like that. Things like that can wear you down at the best of times and i would guess you don’t need it just now.

Martina, I know what you mean about hats. I’m short and if I wear anything with a wide brim a la Audrey Hepburn, I look like a mushroom! Wouldn’t it be great to do one of those really elaborate scarf thingies that African women do so well? Don’t know whether we Brits could carry that off though.

Carole, we were posting at the same time and you’ve answered my question. You definitely sound better today.

Hey Sal, I reckon you deserved the wine, particularly after a foot groping. One instep too far! Hope you finished the bottle. And you’ll waltz into a new job. You’ve got attitude, determination, and you look great. Relax over this next wee while and get through the treatment. The future will take care of itself and the future looks good. Psychic Steel provides another illuminating prediction!

Tips on how to get out of hospital the same day. Look relaxed and together. Eat the vile food they give you. Ask for lots of tea and in a casual way read all the magazines and books you’ve brought, even if like me you can’t remember a word you’ve read. Pretend to doze off so they think you’re well rested. Say Ouch in an non whingey fashion when you need more painkillers - makes them think you have great inner strength. On no account ask for a sick basin. Keep your mouth firmly shut till the green feeling passes! On no account use that portapotty. Ewwww, disgusting. Walk to the toilet and guffaw loudly when peeing blue. :smiley:

I’m doing fine today, thanks for asking. Bit itchy as the short hair comes out and falls down my neck, but definitely over the wee blip!

Wooops! We did it again!

Sal - no I didn’t have my feet or my boobs groped during my preop. Your pre-op person was clearly a pervert. :smiley:

I’m alcohol free now - my battle with the portacath is tomorrow and then I have loads of bloods to be done next Monday in preparation for the chemo. It would be rather embarrassing if it comes out neat Chardonnay!!

I could murder a glass of wine right now for my jitters though. Caffeine free diet coke just isn’t doing it for me.

Steel, you sound much more chipper today - long may it continue!!

On scarves. Must post a new avatar once the hair’s all out. I’m getting quite nifty at tying these shemagh thingies. Not quite the elegant african look you’re talking about Sal, but I’m getting there.

Gen, does that mean they’ve told you when?

If my reaction to anaesthetic is the same this time as before, I’ll still be asleep when they should be discharging me, so I’ll definitely be rested!! The stuff seems to knock me out big time. And it makes me really sick. Although when I had my MUA they gave me something beforehand, which seemed to do the trick.

What do you mean vile food? We’re used to grits and beans - it’ll be a piece of … Although I do seem to remember a particularly disgusting bowl of porridge the day after my shoulder op. euch. And blue pee - isn’t that what George III did? And they carried him off in a straight jacket.

You’re right, after grits and beans you can handle anything. In fact you should take some in with you. Anybody that can down that can be discharged. And the beans might hasten your discharge on their own!

Woah, didn’t know that about George III! Maybe I should keep quiet about that bit… And maybe the pink pee after chemo too… What do they do if you pee pink I wonder?

And I forgot, good luck for tomorrow Gen. I hope you told Scrooge you weren’t working afterwards. I’m sure it will be fine. I think these things are usually worse in our heads than in reality. It’s the unknown again isn’t it?

Do you think you could hook up a bottle of Chardonnay to the portacath thingy? You could get trashed without anyone knowing.

Carole - they put you on the gay ward if you pee pink.