Storm Riders/A Town Called Determination

Hi All
This is a thread started by a few of us who were posting under Newly Devastated Bury St Edmunds in the Diagnosis category. Some of us are doing chemo then rad then drugs, some of us are doing rad then drugs, some of us are still waiting for op and results. What we’re all doing, is moving steadfastly through this thing together. We thought we’d move over here now that we’re moving into the treatment part.

We’ve got a wee story/analogy thing going for fun and to help us focus our determination to get out the other end of this with the all clear. We’re imagining a Town Called Determination, where the Storm Riders are headed. Kind of a western theme. Determination is the part of all of this that is treatment. The Storm is the whole cancer thing that we have to get through. We’re Storm Riders, riding it out because we can. We’re going to ride into Determination and kick out the bad guys (aka all the bad side effects of treatment and those days when we just feel down).

Please feel free to join in with us. No, you don’t have to pretend to be a Storm Rider. We do ordinary chat too! :smiley:

I’m here, with me poncho and apples for me horse and lookin’ for a coffee…any going??..

Found you…

Well, went to the breakthrough centre yesterday and had a chat with one of the therapist, about the eight week positive thinking course. Sounds really good and you get a complimentary therapy each week so should be quite relaxing. I’ve signed up to start first week in March. Its free and extra ammo to fight this thing.

Busy weekend ahead for me. Oldest and her boyfriend are coming over tonight, then mother in law tomorrow day and over to step mums in evening for a meal out. Just hope I can stay awake for it all. lol

Sal, is it the 12th for your op? my memories getting really bad theese days.

Right to make some smoke signals, so the rest of the gang can find us. Steel keep taking it easy and you too kitten, not too long since your op and you need to rest up by the fire.

Take care

Well I like the look of the new surroundings. I need a bit of backbone today, feeling much sorry for myself as I had to have yet more cauterising of my tedious wound yesterday and feel as if it will never mend. I was looking at it in a hand mirror this morning and ended up in tears it’s such a mess and yes, still about 1cm of it open at the top. It’s 7 weeks on Monday.

I also had a letter this morning (sent 2nd class post) telling me my portacath appointment had been moved from Wednesday 18th Feb to this Wednesday. Nobody bothers to call and tell me, just a letter and I’m supposed to drop everything and show up when they decree at 4 days notice. The fact I’m a bit scared about it doesn’t help really.

This will mean I now have appointments to do with this vile thing on Tues, Weds and Thurs of this week and then the Monday after. The week after that I may or may not start chemo. Who knows? Whenever it is I’m sure I’ll be the last to be informed. I hate, hate HATE how my entire life is being yanked about by this as if I don’t exist as a person with a life to live any more.

Aaaaaaaaaaaaaand breathe. Ignore me, I’m having a bad day.

The breakthrough thing sounds fantastic Jane. There’s nothing like that around here that I know of, but I could certainly do with it right now!

Gen, my bc nurse put me in touch with breakthrough. I’m so sorry your having a bad day. We won’t ignore you!!! Thats what were here for. To listen and understand, like no one else can.

Its really hard to focus on anything else when you get upset. My happy pills have been a god send. There only mild ones, nothing like diazipam. They don’t space me out or anything and after about two weeks of taking them I’m starting to notice a differance. Hopefully after my possitive thinking course I’ll be off them.

Your wound will heal Gen, it just needs a bit of extra looking after. Have you thought about using manuka honey? Ask your bc nurse but I have read some where its very good for putting on wounds and they even use it in some hospitals.

What about some cuddly time with the children. I bet they keep you really strong and determined. We will all get to the other other side of this town Gen, am sure of it. This time next year we will all have control back of our lives. Just slight dissruptions now and again for check ups but I’m sure that will be more structured. I’ve said before its going to be a short year for a long life. Keep that in mind if you can.

Take care
(((((((((((((((((((((BIG HUGS)))))))))))))))))))

Gen, you go ahead and rant away. We’ve all got broad shoulders:) It must be awful for you to still be worrying about the wound at this stage. I think one of the hardest things we’ve all got to do in this situation is to accept what is happening, deal with it and move on. It’s important to focus on the positives of each situation, like “they’ve changed my appointment for the portacath, so now I don’t have to wait (and worry) so long”. Personally, I’m still in the “this isn’t real” state of mind, but I’m sure that will all change on Thursday:(

I think we have to remember that whilst this situation is all-consuming to each of us, to the people at the hospital, it’s just normal. They are dealing with this sort of thing all the time and I’m sure some of them forget from time to time that we are all individuals. BUT on the other hand, they are doing all this for us: for our health and wellbeing. And don’t forget - we won’t ignore you:) Even if you tell us to. And don’t forget, you went back to work this week. With a young family, that’s not easy when you’re fit! Be kind to yourself. And get that hubby of yours to give you a treat. You deserve it.

Jane the breakthrough thing sounds great. Can we all come? And yes, the 12th is the day:)

I’ve lit the fire, the bedrolls are laid out and there’s chocolate in the saddlebag for us all. Oh, and kittenkat, there’s coffee brewing. I think we need to have a “be nice to ourselves week”


Wow, it’s like moving house! A bit different over here.

For you Riviera:

Determination lay under winter and shored up against the blizzard that raged through as though hell was on its tail. Snow piled up against buildings and lay heavy on the rooftops. Wagon tracks dug deep furrows through the streets, and the townsfolk battled through the stinging snow to warm hearths and doors shut tight against the freeze.

A mile outside, two figures hunched over their horses pushed forward. Steel and Riviera had left the other storm riders 5 miles out on the edge of the blizzard. Casey, Mule, Blackjack, and Kat were headed round the mountain ridge looking for an easier route, but that looked like taking them a wide sweep out and another day’s ride. Steel looked across at Riviera. She needed Determination, and fast. Two days back they’d hit the mountains. They knew the fastest route through was the mountain pass and headed in. Determinaton was only 3 days away, and they could rest up there. All of them had taken a beating in the desert crossing and could surely do with some time to heal. The horses were just as tired, and they’d taken to walking as often as they could to spare the animals. The pass seemed easy enough to start with. The mountain slopes angled up to each side, dry, hard, unforgiving, but the track was clear and easy to negotiate. Then on the second day they had to climb. They hit the snows early morning, and the first snow fall in the early afternoon. The track kept winding through the mountains, and wasn’t getting any easier. Visibility started to drop, but there was nowhere to stop and make camp. Mule shouted back, her voice whipped by the wind “We either go back, or keep going and take the chance, but this snow isn’t letting up and we’ve got another 4 hours before we get out of the pass”. “I say keep going,” said Riviera. “We turn back now and the pass might close.” The others agreed, and walking two abreast, riders and horses muffled against the cold, they pushed on, the wind picking up as they went turning snow fall into blizzard.

Three long hours later Steel yelled back against the wind, “I can see the end of the pass. Not long, but this blizzard looks like it keeps coming once we get out.” The others indicated acknowledgement and Steel turned back. Suddenly, the edge of the track started to move. “Back! Get back!” shouted Steel. BlackJack, Casey, Mule, and Kat pushed their horses back and into the mountain side, but Riviera’s horse lost a foot to the edge, and in panic reared up. It’s hoof sliced across Riviera’s chest and threw her backwards. Steel leapt forward and grabbed the horse, pulling it in. Blackjack edged round and took the horse to quiet it while Steel moved to Riviera. “I’m fine” said Riviera, but winced hard and couldn’t help the groan that escaped. Steel pushed aside Riveria’s coat and scarf and sure enough there was a gash in her chest starting to ooze blood. She took her bandana and pushed it inside Riviera’s shirt, fastening everything back down. “Up you get kiddo. We need to get you out of here and into Determination.” “Just point me in the right direction” said Riviera, and leaning on Steel she stood up , and started moving on. Blackjack followed leading her horse and Riviera’s.

Two hours later, they were out of the pass and looking down the mountain side towards Determination. The blizzard was fierce and there was nothing to see except white. Casey looked over at Riviera, whose face was about the same shade. She nudged Mule. Mule took a look at the wound. The shirt was drenched in blood. “We’ve got to get her inside, fast. She needs that stitched up, and she needs warm.” They stood huddled between the horses. There was a ridge on the right and it looked like the snow was lighter that way. They considered taking that, but Kat pointed out that the map indicated a long route that way. Steel looked out towards Determination again. “Ok, this is how we’re doing it. You four take the ridge. Find a path that way and stay out of the blizzard. It shouldn’t take you more than a day. I’ll take Riviera down here. We’re not more than 6 miles from Determination and as long as I keep the ridge on my right I can’t miss it.”

They helped Riviera onto her horse, Steel took the reins, then nudged her horse forward and down the mountainside. “Hey Steel,” shouted Riviera, “When we get in, I want a martini before they start stitching this up.” “I’ll get you a bucketful, kiddo. Hang on.”

And so two hours later, half frozen, their horses near exhaustion, two Storm Riders rode into Determination. The streets were deserted except for the howling blizzard, but the farrier and blacksmith was still at work with the furnace raging. He looked up as the doors blew open and two horses and their riders walked in, one rider holding the other up.

“What the ……!”, as he ran forward and slammed the doors shut. “Where in all darnation did you two come from?” He grabbed Riviera and helped her to a stool. “Can you stable the horses? “ asked Steel, teeth chattering. “I need to get her to a doctor”.

“Sure, go on” said the blacksmith. “I’ll take care of them. The doc’s four buildings down. I don’t know who you two are, but you’re hard as steel coming through that. Go on, get going.” Steel couldn’t help a wry smile as she helped Riviera up and moved for the side door.

Ten minutes and a lot of door pounding later, Riviera was lying on the doc’s table, and Steel was trying to get some warmth back into her hands at the small stove.

“She’ll be fine,” said the Doc. “I’ll clean this up, stitch it, then the two of you are going to eat with me and my wife, get warm, and tell us whatever story you’ve got about how you ended up here tonight.” Riviera tried to sit up. “No you don’t young lady. You lie right there. After you’ve eaten, you’re going to bed, and staying there till I tell you otherwise.”

“But…” said Riviera.

“Don’t worry, kiddo, I’m on it.” said Steel. “Where’s the saloon Doc? I need to fetch a martini.”

And the journey through Determination begins.

Kittenkat, or can we say Kat? Kind of goes with the poncho don’t you think? Take it easy post op. Go rummage through Mule’s saddlebags for that chocolate and rest up.

Jane - Breakthrough sounds excellent. I am definitely asking my nurse about our equivalent again.

Gen - I’m feeling for you big time. Breathe and keep telling yourself this is just a year, a bad one, but just a year. It will be over, and this particularly bad few months will be over very soon, it really will. I think the problem is that we all have to live it one day at a time. We think about it so much, we can’t get a break, think into the future, it’s each long day one after the other. I feel like I’ve lived a year already. But it will end.

Sal, hope you don’t mind me integrating your blizzard and ridge thing into that bit of story line? That “this isn’t real” feeling kind of stays. :frowning: I’m sitting here waiting for my hair to drop out, and thinking “but it looks great, how can this be really happening!”. Had the wig appointment on Friday - oh and I look so cr@p in short wigs. Pooh! I was really looking forward to a fantastic short style. But you need a good jawline, so that’s me on the celery sticks now. “I’m so rumbly in my tumbly, in my tumbly, I’m so rumbly, I’m so rumbly in my tumbly, and I don’t know the rest of the words…”

But, the wigs are great! Really natural looking. So I’ve got myself a medium length angled bob and a shoulder length one ordered in the colours we reckoned worked for me, and I can decide once they arrive which one to go for. Cool!

Meanwhile I also realised that the best scarves for tying are probably scarves used by people who wear scarves a lot, so I bought a couple of shemaghs, and they tie brilliantly, and give you some size and shape to the head. And, you can tie the wee fringes so that they come round your face a bit like hair. Who needs hair! I’m quite looking forward to this, in a can’t avoid it anyway so better make the best of it kind of way! Actually, losing my hair sucks, but Steel looks great in a long bandana under her black leather hat, so she’s happy. :smiley:

Oh eck you made me cry with that scene. I LOVE it, weepy in a good way definitely. Just having an emotional day.

I’ve just been round to a friend’s house and had a couple of glasses of wine - she’s been having a moody day too so we’ve ranted and whinged at each other and I feel a bit better. That’s the other thing about this whole business - she was saying what a rotten day she’d had and then brought herself up short because she remembered what I’m dealing with and felt guilty. I think we all have our individual burden to bear and it’s no less burden for any of us because it might be packaged differently to someone else’s.

Steel - re the hair loss and other side effects, that’s something I can’t quite get my head around (if you’ll forgive the pun). I ordered some pre-tied scarves and a couple of buffs which arrived on Thursday. My daughter and I were trying them on and she was telling me which ones she thought looked nicest. She’s 9, bless her, and she’s giving her mummy advice on which headscarf to wear in chemo. But I can’t quite imagine it will happen to me. All these side effects - I feel fine physically right now (mentally wobbly, but physically fine) and my hair’s firmly attached. I can’t quite believe that it will just drop out in a few weeks. How does it happen? Will I sit up in bed and find my hair on the pillow? Will my pubes all suddenly break free and end up in my socks? Eyebrows in my porridge? Eek!!

Sal - you’re absolutely right. I need to aaaaaaaaaaaccentuate the positive (op happening quicker, less time to stress) and eeeeeeeeeeliminate the negative (grumpiness at short notice and method of notification). Thou art indeed wise.

This martini is warming my extremities Steel, I think I’ll be back to fight another day tomorrow. I can hear the flamenco guitars in the distance… :slight_smile:

Here’s a nice box of balm enriched tissues. Weep away.

Y’know, that’s exactly what I think about life’s burdens. We’re often made to feel guilty for grumping about something, when all over the world there are people worse off than we are. Of course, we need to acknowledge that, but like you say, your individual bad thing is still yours to have to deal with, and it doesn’t go away just because the next person is worse off. I suppose it’s about keeping an intelligent perspective and being able to recognise when you have a way to help someone else, whatever difficulties you are personally in. I’m generalising there, not being specific about cancer. But back to hair…

I know, even having felt the chemo effects, I still can’t believe it’s going to start dropping out (although I could do with the eyebrows coming out - dyed them yesterday and got a tad over enthusiastic. Hmmm, Joan Crawford is not a good modern look. Where are the tweezers?). That’s me at Day 12 and there’s no sign of movement. I keep hearing you wake up and there’s a big clump on the bed. I doubt the follicles are sitting there waiting for the moon to rise. Allegedly on Epi it comes out in clumps, but I reckon it’ll start anytime, probably the shower, or bed, or brushing, sometime when you apply a bit of pressure, and bingo, there’s the first clump. I was wondering about the pubes too. LOL. Maybe we need to invest in those old fashioned bloomers that tie above the knee. Shake 'em out at night then tie them back in again for the next shedding!

There’s a thread somewhere with ladies on E-CMF. Confirms what the nurse told me. Pretty much as soon as you finish the Epi and start the CMF your hair starts coming back. Bum fluff and a bit patchy at first, so you shave it once or twice to thicken it up, but by the time we finish chemo we’ll have a GI Jane look going. Excellent! My birthday’s in Nov, so I’m going to plan for my first hairdresser appointment, and my first glass of champagne in 10 months!

Ok, WEIRDSVILLE!!! Check the time of my last post. I went for a shower after writing, and my hair started coming out! How’s that for spoooookkkkyyyyy!

I can now confirm Gen, the clump thing isn’t how it goes, well not for me, or the overnight. There was definitely no hair on the pillow this morning, and definitely no hair coming out when I put my hair up for my hat for walking the dogs just after nine. Now I’m shedding quicker than my dogs. :smiley: This is definitely going to be a strange day. I’ll update this evening. Right now I have an appointment with the mirror and a pair of scissors. And here’s me wondering if the chemo was working… :slight_smile:

Thought I’d better take a picture of moi with hair before I take the scissors to it. So that’s me, over there. Haven’t quite worked up the courage to use the scissors yet. There’s so much hair still there, I suppose I’m hoping it’ll stop. As if! Maybe I’ll try channelling Steel later on. Now she’d just get on with it and tell me to stop snivelling. Snivel.

EDIT: That over there is now me in a wig. Just thought I’d adjust for continuity. :smiley:

EDIT: That over there is now me growing back.

Ah ha! So that’s what you look like! What a goyjus bunch we all are!

Well, that’s what you looked like earlier today I guess, I hope the hair was just having a mini-shed not an exodus. How scary - that’s not a day I’m looking forward to.

Jez and my boys all have their hair done with clippers and we have a pair here. I’m thinking I might just go for it and shave it once it starts to go, but then I don’t know, I suspect I will cling on to it for as long as I can.

My lovely brother said he will shave his head when mine goes, as a gesture of solidarity, but he’s just got a new job so it might not go down well!!

Hair or no hair. We’re all still “us”, hair is just packaging, and this is only for a few weeks remember. Get that bandana on under your jaunty hat and count this another stride forwards towards the other side. Short term rotten for long term gain (to paraphrase Jane).

Remind me I said that when I’m bleating about my own bad hair day in a few weeks! :smiley:

LOL. I won’t let you forget! Took a couple of inches off the length there, basically to see what it would have looked like if I’d kept my appointment for a trim at the end of December. I’m liking it. See it again in 18 months I suppose. :smiley:

It’s coming out pretty consistently, but not in hunks. If I don’t shave it now (and stop pulling it out!) and let it just come out by itself I think it will probably be wearable for another 2 or 3 days. I can’t face doing it yet, so I’m going to hold on to my slighter shorter version till it’s thin enough that there’s no denying it has to go. This is very strange, but I’m not anywhere near crying yet. I think it helps to have your hats and scarves already handy, and have tried them on. It lessens the impact. Oh, the grey is coming out quicker than the non-grey. I’ve got a lot of grey. If you’ve not turned too much yet, you might get a few extra days.

My Hubby and work colleague were both suggesting shaving their heads too. Sweet, but entirely unnecessary. I heard H in the bathroom with a razor this morning after I told him it had started. Thankfully he didn’t do it. I mean, really, they shave it off mid winter. How daft is that. And it’s not like they’d get to see me bald. No way! With a bit of luck and a bit more scarf tying practice facing away from the mirror, even I’m not expecting to see me bald! So I told him solidarity to that extent is definitely not required or wanted, although the thought is much appreciated.

Steel - hoorah, you have a face :slight_smile: and I’m loving that last chapter. And you’re welcome to run with the blizzard analogy; this story is for and by all of us, if you get what I mean. I also love the bloomers picture you implanted in my head. LOL. My grandmother used to wear pink, sort of shiny ones - I really think that’s what you need :slight_smile: They’ll also keep you warm up that mountain of yours.

I’m glad to see you’re feeling a bit better Riviera. There’s nothing like a good moan and a glass of wine to make things feel better. I’ve had lots of cr@p thrown at me over the years and I think my way of dealing with it is to enjoy the good times and when bad times come, I just grit my teeth, put my head down and get on with it. The bad times don’t last forever. I always think of the time when my son was born. He just didn’t sleep at all! And I was really anaemic; I was so tired I was like a zombie. I remember someone saying “Don’t worry, the first 6 weeks are the worst” and I thought “I’ll never last 6 weeks”. But, somehow, I blinked and he’s now 29!!! (And he could sleep for Britain:D). So let’s all sing again… “Always look on the bright side of life…”

They say that adversity is character-building, so we’ll all have loads of character by the end of this :slight_smile: And anyway, it feels like we’ve gained friends from all this, so it can’t all be bad.

Hi - well i’ve just ploughed through the 19 pages of the old thread - imagine my surprise for a second when i finally got to page 19 and it just finished… lol And now feel like i know all of you…

Well i am at the other end of the treatment… infact i finally finish my rads on Thursday of this week.
I was diagnosed on May 27th last year with a very rare form of BC called Inflammatory Breast Cancer (IBC) - called that because instead of a lump you actually develop a red/pink breast with dimpled skin… So my past year has been 6 months of chemo (4 x AC then 4 x docetaxol) then my mastectomy on Nov 27th and now just finishing the four weeks of rads… My tumour was 5.5cm at diagnosis - had shrunk to 2.1cm when i had the op, stage 3b, grade 3 they got 6 lymph nodes, cancer in 1, er+ pr+ her -

I just wanted to wish you all luck over the coming months… I found i got more tired as the chemo went on, oh and all of my hair fell out in a day…

The one thing that really struck me in the last thread and i just want to check if you did anything about it… Gen - you mentioned perhaps you should have your coil removed… Have you done anything about that? I was really shocked that it hadn’t been removed as soon as you were diagnosed as we are meant to not have anything with oestrogen or the other one pr+ (sorry can’t think - chemo brain strikes again…)

It’s weird in a way as i am just finishing all this - seems hard to believe that after thursday i just need “to keep taking the tablets”


Just a quick note to one of the points above,when I got my diagnosis I told my consultant that I had had the mirena coil fitted four years ago(low level dose of synthetic progesterone) he said that it was fine and I wouldnt have to have it removed. Would be interested to hear what others have been advised.Sorry for hijacking your thread with this.

Hi Theresa

Nice to hear from somebody who has got out the other side of this place. Gives us all hope! Oh roll on the happy day when I get to say my last rads are this week. *sigh*

I spoke to my Oncologist about the coil and she said that the amount of hormone produced by it is minute and I should keep it in. The risk of pregnancy is far higher than any theretical risk from the hormone (progesterone) in the coil. Maybe it’s because I was predominantly ER+ and there is no oestrogen in the coil, I don’t know. I said I thought I might have it removed anyway as it’s due to come out later this year in any case, and she was quite adamant that I shouldn’t and even went on to say that it would be fine to just have it replaced when it runs out. I was surprised, I must say and I don’t think I will. She did say that since I’ve had it 4 1/2 years the amount of hormone coming out of it by now would be negligible.

However, bc being the passion killer it is I must say that the risk of pregnancy itself is purely theoretical at present so it’s all moot. :smiley:

Hey Sal, considered blinking faster? 28 1/2 years. Zowie! Actually, to you and all of you with kids, I envy the strength you gather from them, I really do.

Oops, back shortly, can smell a pizza burning…

Just want to say that I love your thread .I wont intrude but as you storm into Determination look out for an old lady rocking on the porch.She was a Storm Rider once and now looks back on the ride so glad to have arrived and urging you all on.Together through the blizzards and sandstorms,crossing the white water and getting lost in the forest you will prevail.xx