Just very quick as shoulder so painful.
Had chemo and had a lovely chair all day and will do next treatment as well.
Onc very nice to me today - I think he was so shocked to see me striding around John Lewis and meeting my son yesterday and my daughter today that he mellowed.
Will try to post later if can get pain under control
Kate
The chemo has shifted the pain so now back on voltarol and amytrpylline and occasional parecetamol and diazepam or lorazepam if getting spasms but heat tends to help just as well.
so constipated again - not sure if it is the gem/carbo or the ondantrason that does it. Started to take movical regularly from tuesday and yesterday increased it to 3x daily. Today have drank copiously like i did yesterday and have resorted to taking son’s picolax and a suppository and force feeding myself a chineses meal.
Swallowing better today and pain improvement in shoulder and hip remarkable.
Had a hectic morning as had too pack for children to stay with grandparents overnight but of course all the bags were up in the loft so with a lot of huffing and puffing on my part managed to get into the loft to get bags down and sleeping bags for cold caravan trip mon - thur.
Had a sleep this afternoon so that’s why I’m up now plus all that msg in the chinese and a feeling an explosion may occur if i try to settle!!
Any date for meeting then?
Kate
Hiya ladies
Quick un cause im knackered from ruuning round goin from the dump and charity shops im having a massive clear out cause ive got the masses decending on my flat once i start chemo to baby sit me. ive got soooo much crap!
My new car is lovely! Bit of a problem turning my neck at junctions cause i have shooting pains up and down my back a big swig of oramorph normally sorts that out 
Ill probly have to do a date after first chemo prob, is the 4th May any good?? i can show off my portacath and new bald patches…heres hoping its falls out the same way it did for FEC but got a feeling im gonna loose whole lot.
Oh kate its a bugger having to sort out money stuff on top of everything else i was saying in work the other day when you get stage 4 cancer you should recieve a nice fat cheque off the queen for a million so we can go blow the bloody lot on fun stuff what you reckon? Work are being good my end but HR have messed up my sick pay so i was panicking about that but my boss shouted at them which was a help.
Hiya Tracie too bloody right im going to festivals! I may be heading to V too depends how i feel defo catch up with you if you go im not camping dricing down everyday with mates.
Sammy, claire and our Debs be good to see you soon.
Night night my MSTs kicking in wooozy!
Love lynn xx
Lynn - glad you sound better and better for the MST by the sound of it. By the way my hair is dropping out with gem/carbo, I don’t think I’ll have any left either and that’s before I start any taxol/doxyrubicin or trtial drug!!!
Off to IoW now. Be back thur/fri
Love Kate
Lynn my hair thinned on the tax, actually started to grow back after finishing the a/c and thinned from the front, was very wierd, but never lost it completly.
With you on the queen thing she can spare it surely.
Cant believe you get so much done Kate when you are ill, I suppose you dont have much choice (although lying on the sofa saying NO is always an option) Have a great holiday
I just managed to pour milk in my gin rather than tonic still drinking it mind 
I am so do-lally
take care girls and meet on the 4 th sounds good but have to check when my nephew’s b.day is as cant remember
xxsam
Hi all
Lynn good to hear from you and sounding upbeat, I am going to be the awkward bugger, sorry cant make 4th as in butlins again for football tournament, but If its suiting you others escpecially around treatments go ahead without me, I’ll catch up another time… Tax didn’t like my hair, thinned much more than the FEC, but I still got away with no wigs, scarves or hats. Is it next week you are starting, remember dark nail varnish, good strong mouth wash and pain killers and rest, the first one had me neutrophenic because its a sly one, it takes a couple of days to kick in so I carried on as if it was my good week, went out to sons football presentation and got a soaking in a surprise summer down pour, laughed it off drank cider and socialised, 6 days later was very poorly and in hospital.
Sammy, Gin on a Monday night, Mmmm slightly worried if you have poured milk into your drink have you poured gin into little H’s bedtime milk. (anything for a quite night) only joking…
Kate, have a good holiday and hope the weather gets better for you.
Well I have this week off work, went to an extra excersise class this morning then loads of ironing and food shopping, going good shopping tomorrow (clothes) and taking kids to london wednesday, dungeons, london eye, planet hollywood and in the hoods musical/dance show, will be a late train home so lazy day on thursday.
Trace happy travelling, where is Claire?
Love to you all, Debs XXXXXXX
Hey guys
Am recovering from a big fat hangover from a sunday all dayer by doing a nite shift…mmm not my idea of a recovery!!! But cant really complain after the length of time ive had off!! Ha ha
Kate have a fantastic hol and try and relax and let the others pamper you a bit…
Lyn, would be great if you could get to V, but…driving!!! No to that and an even bigger no to camping, we are gonna get train each day. I do have 2 friends that live in Chelmsford who have offered to put us up but there are 8 of us and trust me they really wouldnt want us there!!!
Totally agree with the queen thing too, its funny was talking about exact same thing with si yesterday ( but not with queen) and i decided that everyone diagnosed with a life threatening illness should be given a big fat cheque and allowed to retire so they can enjoy life instead of worry…maybe we should start a poll on facebook…
Debs have a good day in london sounds jam packed. Am heading out your way at end of may to stay in tewcester as si driving a ferrari at silverstone. R gonna go shopping at either bicester or swindon at designer village then hit pubs if your about we could meet for a drink at some point??? With the boys tho as cant really get rid of him when we are staying away for a night!!!
Sammy who cares what the gin is mixed with as long as there is enough gin!!!
Claire where are u???
Will have to let u no about 4th dont have rota that far yet.
Take care and lots of love .xxxxx
Trace - sounds good as long as not the last weekend as of to florida - bicester would be closer and great shops - and good excuse to buy dress for mouline rouge for my 40th - want something sex in the city and high heels to match. OOh la la.
XXXXXXX
That is just sooooo typical is last weekend the 26th, 27th as that is when we r coming!!! Hit the shops in florida girl theyll be cheaper! xxxxx
Just popping in to say ‘hi’.
had a wonderful time on the Isle of Wight after the initial cockup when they put us in 2 caravans 2 fields away when we had already asked the company and they had agreed to put us together and had put it on the confirmed booking form!!! Eventually, we got upgraded to 2 chalets together which I’m sure were warmer than the caravan!!! Well, the first night would have been warmer if I’d realised earlier that the heater was only on half and not full which didn’t help - tiredness, chemo brain - dippiness who knows!!!
lovely in the day and really warm on mon- wed but cooler today cos of windiness.
Have been very naughty cos I had the chemo on 3rd April and my rough days are the following mon- wed so just carried on taking the dex. It worked a treat and have kept going and done an amazing amount of walking. The last chemo stopped the bone pain within 48hrs which has always happened before but never lasts after finishing the chemo. My swallowing is better but still a struggle at times. I and everyone else had a horrible moment in Weatherspoons. I ordered sausages with mash and onion gravy and peas cos I thought that would be softer. there was little gravy, the peas were ‘al dente’ to be kind and the sausages were dried up. Don’t know why I didn’t reject it really - brain definately high on dex I thinks.Anyway, ended up regurgitating it back into the bowl where my son’s corn on the cob had been. Everybody was very well behaved but I think it gave the other diners a bit of a shock. When we asked for more gravy, we were told the portion came up as it was and you couldn’t get anymore gravy. After a lot of graphic explanation why I needed a damp dinner, they eventually came up with normal gravy. I hate using the ‘cancer card’ but the gravy portion was mean for anyone.
I did use a walking stick which helped but discarded it when I went on the rollercoaster rides!!! It said you had to have no physical disabilities so my 72 yr old mum held the stick and I got the ride!!! Think I will have to use my stick more - it did help my hip pain a lot as my left leg is so much shorter, Just got to await the result of the xrays I had at last chemo now. It also means people do give me a bit more help and sympathy which is what I want. Having Moira moments when I want it ‘to be all about me, glorious me’ as she wrote once but i can’t remember the context though!! Still miss her and wished I’d got to meet her sooner rather than just regularly emailing each other for a year before meeting.
Right catching up with OH now.
Not sure about 4th - think I can but need to check if meant to be at bbq. Let you know this week.
Kate
Kate,
Just wanted to say it’s awesome the way you’re still managing to get about on all these holidays and outings. Must be exhausting.
mousy
Kate
So glad u had a great time it sounds lovely and just what you needed. Have a good weeken GG. Love trace.x
Kate sounds like you had a good week, cant beleive you were on roller coasters, were they the ones sending you upside down, I used to always worry my prozzy would either fall out of burst under the pressure of the belts and fancy hiding the stick once at the front of the Q, I was going to post before you went away that you had better check on caravan status, at least you got upgraded to chalet as like you say they are warmer and it been bloody freezing as soon as sun sets. Good to hear the chemo has done its job and good idea on stretching out the dex, next time you will have to get some speed.
I’m still knackered from day out in London, although had fantastic time and NO queuing, straight into london dungeons, no Q at london eye and straight to a table at planet hollywood, went to riverside pub walking from dungeons to london eye, sat in the sun with jackets off, then me and kids had our photo taken and an interview on where we were from and our day trip plans by some promoters for the tower area, so watch this space we might be in a magazine, went to the theatre and graham norton walked in and was sat 5 rows directly in front of us so kids were all excited (they knew he was famous but couldn’t remember what programme though). Got home around mignight so had an extremely lazy day yesterday and was back at aerobics this morning and then met the kids in the pool, managed quite a bit of swimming but really felt it pulling and stretching on my tummy (and arms which are starting to get a bit flabby) so may be a good gentle exercise to tone. Have to go and take daughters friend home, am so glad I am back at work next week, no more sleep overs and can sit on my arse all day.
Trace how typical for timing, it would have been lovely to meet up and get OKH to meet S.
Take care GG and lots of love, think I may get a bottle of wine on the way home, think I deserve it after this busy week.
XXXXXXX
Sorry I can’t make the 4th so who can then?
having a real down day - feel so well yet so aware that I’m coming upto my last gem/carbo and then what option have I. If he refuses to treat me again, I need to sort out a second opinion pdq. Think I will go on the 24th regardless if my bloods are good enough for chemo so that I know what the plan is. So scared cos the rate my cancer grows once off chemo, I’ll be dead by the end of June. Yet this last week, I’ve been out and about so much and had so much energy and my breathing has been OK - it’s the swallowing and the thought that he is prepared for me to basically starve to death really that is doing my head in.
Most weekends now are taken up with kids birthdays so that doesn’t help me mentally. OH and I trying to go away and the first time we are free is 17th May!!
Hope to cheer up but think you’ll all in for a gloomy time till I know on the 24th what the plan is and then I may be better or worse off mentally.
Sorry for this.
Kate
Well had a night terror last night - never had one before and certainly not what you expect to happen as an adult!!! So then couldn’t get back to sleep as too scared incase it all came back so have been in bed all morning!!!
I just couldn’t move in this nightmare and my OH kept morphing into huge frightening shapes and was squashing me and I kept smelling horrible things - (probably the remains of the Laphroig whiskey, he’d had before going to sleep last night in real life).
I’d gone to sleep with my I-pod on and all that music was being distorted and I just couldn’t move to stop anything happening and actually now feel scared to listen to it again when I’m dropping off to sleep incase it happens again!!!
When I woke up, I realised I’d only been asleep about 45 mins but had to be up for 2 hours you get my head together.
I’d had 2 glasses of wine last night - have not been drinking any alcohol at all in recent months so probably a reaction with my other tabs - I used to take the same ones and a glass of wine on occassions before and was fine. I know the labels say ‘don’t drink alcohol’ but pharmacy said it was OK in moderation. I wouldn’t even think 2 glasses hit moderation!!!
Sorry - very unusual thread from me but just still feel so disturbed by it, I had to tell someone!!!
So is there any other date apart from the 4th I could try to meet someone. I would like to meet any of you at any time,any place, any where!!!
kate
Kate - I cant make 4th as away - but free next weekend and we can have good catch up and talk - will text you too, may be tiredness causing mares or perhaps dex.
Anyone else free next weekend - Kate do you want me to come to southampton, will start looking at trains now.
Keep posting - dont bottle it up, we will have big hugs next weekend.
Love Debs XXXXXXX
Kate,
Sorry you are having such a tough time.
It seems that what the onc said to you that day has really been knocking around your head- not surprisingly. Can you talk to him next time you go in- be brutal- tell him you are having night terrors about it and you need some resolution on this- can you get the macmillian nurses involved or the hospice lot.
I know it must be terrifying and makes me cry to type this but if you get some reassurances as to how it may end up for you maybe you can feel a bit more in control of it. I know there are no gurantees in stage 4 bc, but as you and your onc think it may be the tumour round your osephagus (sp) that will cause you the most problems so you need to talk through your fears with him and whoever is most appropiate to help you through this. I get the feeling thet oncs do not always realise how we dwell on every word they say and he needs to learn that what he says affects you deeply. And HE WAS WRONG before- you are here in april when he said you shouldnt have more treatment before xmas.
I know we cant take the terror away but keep talking and we are all walking down this road with you
lots of love
sam
and love to the rest of the gg x
hey ladies
Kate i always find you posts about you holidays entertaining because it always turns into some kind of some mothers do have them scene but on a serious note i have been having very bad nightmares i woke the other half up the other night i was screaming for my mom and was sobbing i didnt know anything was going on til i was shook awake i scared vikki because she said it took her ages to wake me. Think it the meds they’re pumping into us hun! And defo yes to second opinion!
Talking of chemos…I go into hospital thursday to get started on my steriods, then fri morn get the portacath fitted and my first lot of Tax! Im abit all over the place about it, i thought id a had a little break by now but turns out my cancers got other ideas hey? Ive found a lump on my side where my intestines are so i cried the whole of monday morning because im convinced ive got bowl cancer too and that im putting myself through all this pain and suffering but it gonna get me anyway. I nearly refused the chemo i felt like i was limbo and just existing rather than actually living! My back pain is still really bad im hoping the steriods will help with that! Oh and i found out last week ive know got to have the full 6 not just 3 so that upset me too!
Know what you mean about moira kate…its mad that little lady had such an impact on us all over such a short period of time hey? Its coming up to one year since she left how mad is that!
I will attempt to join you saturday i may be hyper from all the drugs and feel ok. Ill get vikki to drive anyway incase im ill. I could do with gettin out and doing something i did on my last chemo.
Sorry this post turned into a waffle about me
Love to all the GG ladies xx
Lynn it would be fantastic if you could join us saturday - me and Kate have arranged 11.30-12.00 Reading (not sure if coffee shop or pub) - you do have to have extra steriods on the tax and if i remember over 4 days so you may well be buzzing - if you can make it and want to meet somewhere vikki can park up then let us know and we can always get taxi from the station.
Crap news on new lump, I cant beleive how much treatment you and Kate have had and it still keeps on and on and its not been much of a break, its not surprising you are both having nightmares and crying, think we are all thinking of Moira especially with 1st anniv coming up but would imagine its harder for you 2.
Sammy is trying to make saturday too - will send another text to trace and claire (sure tace is of travelling again, is this the scottish weekend, I cant keep up with her diary of adventures)
have just made my son very very very happy, just received 2 tickets for WWE at NEC tomorrow - really good tickets near the front on e.bay and only a fiver more than face value, the seller had 100% positive feedback and tickets are genuine, OKH is taking him as I am doing girls aloud with daughter next month and have no desire to watch american wrestlers.
See some of you saturday - Lynn will be thinking you, Love you all Debs XXXXXXX
Hey girls
Lyn and kate, like debs has said i just cant believe so much has been thrown at u guys and u r both still staying so strong. Lyn honey cant believe u have another lump, that is just cr*p. R u gonna get it checked out??
I had lots of nightmares with the dex but dont think on the scale of u guys. The last time i had dreams like that was as a side effect of malaria meds so am in complete agreement with lynn that it is probably one or mixture of some of the meds u r being given. Is there any chance you could mention it at next appt and see what they say. On other hand with all that u guys have been and are going thro it is hardly suprising u r having nightmares. I would say it is ur brain letting off some steam and a normal reaction psychologically…
And kate unfortunately for us 2 glasses isnt moderation its a binge!!! Ha what do they no…
Debs, girls aloud or wwe i know where id be every time - right there with u, wrestlers are so unattractive, sounds like u had a good deal with tickets tho.
Wont be able to make it sat as am working til 3 then off to edinburgh via york to pick up G on evening train. Have a good day and hope to see u all soon. Love to u all x