Aye up ladies
Thought i better sign in and will try to keep moaning to a minimium…saying that I read Kates thread above mine and roared with laughter at the contact lense boiling 
sorry kate im sure it wasnt funny just if its gona happen to anyone why you all the time hey?? I just pictured your face when you realised you’d boiled them! You make sure you chase Primark…im fuming because my mom bless her has a slight weight problem and shop assistance in 2 shops now have now comments that shes overheard and my mom cause she has no confidence anymore didnt say anythign to them just got upset and walked out so IM FUMING and wanted to rip someones head off the otherday when she told me. So looking forward to going back to mids after next chemo because we’re going back into the shops to make formal complaints and i may have to restrain my sister (we’re irish and have bad tempers!) im not standing for anymore shite put on me (having crap time with work and the way my BC nurse and other cancer nurses are speaking to me at mo!) or any of my family and friends.
Kate I always forgot the nurses are coming round im normally still in bed snoring away and get woke by them and i sleep in very little so whoever lets them in never warns them o they’ve seen most of me now hey ho bothered.
Sam hope your sale goes well hun xx
Well ive not been on here cause have been in so much pain sitting up has been a problem i feel like my kidneys are on fire and even after some anti bs. Im back to very high doses of mst which makes me feel sick or when i am sick my kidneys ache even more 
im getting really fed up with it now and i had a dream the other night that i was laid in bed waiting to die…but it was the same hospital and side room set up moria was in and i woke up and was really quiet and then told vikki i dont think im going to be here this time next year and i think im upsetting her because im doing a morbid special on all my jokes which i know is making some of my firends uncomfortable.
Im due my 3rd Tax next week so looking forward to getting that under my belt, scan on or around the 9th June to see if its working i will be bricking it for that result! The lump under my arm hasnt gone down so im convinced its not working and that Im in kidney failure nice to see my brain is not affected still in overdrive!
Vikki noticed too last night that im shaking slightly…i have noticed it…it seems to be more of a nerves thing… could be the million drugs they have me on which scares me cause i dont know what is causing what is it my back, my cancer or the drugs?? I dont think the pro’s know either! My feet have started to go all pins and needles which is the Tax doing its stuff so that a new fun thing to annoy me and keep me in discomfort 24/7.
Stil not sure what to do about my hair! Because I have sooooo much hair loads has fallen out yet loads is left. I have some funny bald patches but because my hair has fallen out from underneth the top layer has it covered but i dont think i can stand the hair getting everywhere thing much longer! Im sitting here thinking about going to the barbers after this and getting a grade 1 but im unsure how ill react and i aint got anyone to go with me. Il keep you updated on that one.
Anyway Debs, Trace and Claire my love to you ladies and hope to see you soon
Gonna go get dressed and think bit more about hair thingy
love lynn xx
lyn - hun do they know at the hospital about your pain and shakiness and now the pins and needles in fingers and toes? Taxotere effects nerves so I wonder if it is that causing you the shakiness. My oncs reduced the dose of tax once I’d developed pins/needles and infact told me off for not mentioning it sooner. I’ve never recovered full movement or feeling in my fingers and toes so it is important that the onc knows.
If they are concerned about your kidney function then they should be monitoring you more and telling you what to look out for.
I have weird dreams about Moira and others who I’ve known and died. It’s very scary. at least my night terrors have stopped - that was so scary - being unable to move and all the sounds being distorted and unable to call for help. it scares me that this is will be like what it is like at the end.
I use black humour about death as well. Moira and I used to have quite long discussions about death/funerals etc and you know what her sense of humour was like!!! They were always amusing but poignant as well. I think we could be like that with each other as we were the furthest down the line and both needed to talk about death but in a humourous way. At the moment, I can’t access any of her earlier emails as the vista computer crashed and they were all in the email folders and were unbacked up as I couldn’t get them to back up. Hoping desparately that our computer friend can get the computer working so i can access those emails and some from another friend who died. They both contacted me at the same time after I got my path reports back from surgery and I kept in contact with both of them but only met Moira. I never thought I would outlive them both as my results were much worse and I developed secondaries first.
Reallt struggling with eating - seem to be back to soup and soft food again - apart from crisps!!! keep regurgitating every night now. Ok in day but at night it goes to pot. Tried again tonight after a glass of wine and a lorazepam but just fell asleep instead so poor son had to find a way into the house after scouts as I was asleep on youngest’s floor as he wouldn’t settle. I had no-one to bring him home as the usual crowd weren’t at camp tonight so someone else bought him home. They must have thought it rather odd that my son couldn’t get in his own house and seeing him struggling to get through the back to let himself him. The house was all dark as well!!! It rather shocked me to find him standing over me but it has woken me up now and I’ve eaten a whole can of tapioca!!! Seemed nicer than a fortisip but think I need the iron from the drink. The onc wanted me to have a blood transfusion last week but I felt well. This week, I’m dizzy when I stand up so hope it’s not dropped further.
Hair - really dreading mine coming out and as am having to come to terms with the fact that the gem/carbo is not working, can see weekly taxol looming really soon rather than the september that I’d hoped for.
Not sure if our post is just not turning up or have got lost in the rads, ct and echo system as well as Primark’s non reply. Can’t be bothered to chase as don’t want to know the result of any scans!!
Back to bed now.
Kate
wow girls… am doing short crap post again but the lenses made me laugh too.
Sale was ok thanks, met boris johnson and tried to get him to buy a red rose pendant- cheeky me as they are the labour party symbol but said the press would not let that one go
the piece I did for the mirror comes out this sunday - have talked abut it on t’other site as dont want to talk about it on an open site 
I cant believe how much you both have to put up with. as for morbid jokes if that is the worst your friends have to put up with well let 'em you are the one going thro it.
have a good bank holiday
xxsam
Hi Ladies,
Sam glad to hear the sale was good, will make sure we get mirror this sunday.
Kate yes you have made me laugh again, am going to start calling you betty spencer.
Lynn hope you are feeling better, if not take it out on those shop workers, you will do then. My feet are not the same after Tax the soles are still a bit peculiar, I also had a wierd circulation thing going on with right middle finger last week at work, it looked like it was going to drop off.
Had a really good night last night, me and my mate took our daughters to girls aloud in concert, it was a really good show and the girls got up really close (about a metre) when they walked the bridge and had a second little stage in the middle of the flat floor. My daughter swears blind she got a special wave from all of them and sarah and nicola mouthed hello, it absolutley made their night, the last time I took her to see them I had Tax 3 days earlier and the aches were just kicking in, so I made the most of dancing away last night. have 2 rehearals + 3 shows to chaperon starting tomorrow, taking son to oxford thursday to check his nose out, and off to florida next saturday, will most def need the break.
Trace make sure you have a good weekend in Towcester and will send text to claire.
Love to you all, have a chill out bank holiday, I am going to treat myself to a cold bottle of beer at 17.15pm and relax on the sofa while kids and OKH out.
Debs XXXXXXX
Debs - why a cold beer at 515pm? Is the time significant? You sound so busy. Glad you enjoyed the concert and hope the dance show goes OK.
Must remember to buy Mirror tomorrow!!!
Been out in the morris minor today with the roof down. Oddly, it was quieter with the top down than when it was up!!! Actually, the suspension was not too bad but the seat is low so my hip hurts now and the seat doesn’t have a neck rest so my back hurt when I got back.
Managed to eat well last night and tonight. It’s so heartwrenching. Poor daughter just watches me all the time I eat now incase she needs to run off to get me a bowl and tissues and often then runs away. I feel so awful and sad about it. It’s not right that any of my family have to put up with seeing me like this. It then starts to stress me and that doesn’t help me to relax and eat better. My swallowing def gets worse when in pain and tense so have resorted to taking a diazepam when hubby gets home to help me relax.
No funny stories today!! I inherited this incident prone habit from my uncle - things were always happening to him so I’ve just taken over that mantle now. Actually, that’s not true, he’s still as incident prone but does less now as he is in his 70s so gets into less trouble - well apart from when he is on holiday with my mum!!!
Got £50 vouchers from Primark today - over 3 weeks since my letter of complaint.
Kate
Glad to hear they paid out but shame you have to go in there again to use them…
mousy
Sam - I posted something yesterday to say I’d read your bit in the paper!! Lovely pics of you both and I thought the article was OK. Typical way the media portary it but you can’t control that and I think it must be the way the general public want to read stories like yours. The ‘pink and fluffy brigade’ rule in media world I think.
Nobody would want to read my cancer story as it will not have a happy ending although I feel very strongly that the media should publish stories like mine where you ‘live’ with secondaries but at the same time know the end is nearer than not. Many women live for many years with secondaries but the media do not want to know that. It’s either ‘pink and fluffy’ or ‘weepy’ - not day to day life as I and many others live through.
Saturday - we went out in the open topped morris minor to the New Forest. It was great fun and the
ride not too bumpy as OH had put in new springs - whatever that means!!! The only problem for me was that I’ve got the original minor passenger seat with no neckrest so my back was really playing up by the time we’d got back. He has promised to put in a new metro sports seat so it will be more comfortable for me. On the way back, it got cold so we had the roof up and it was so noisy!!!
I’ve now resorted to taking a diazepam or a lorazepam before dinner now and then I can eat better. I eat very slowly so have got used to having cold dinners now. It just breaks my heart when I see the fear in my daughter’s eyes when I choke and regurgitate. The boys just ignore it but are helpful in running around after me. I even managed a roast chicken dinner yesterday!!
My back is so bad - I really hope the date for the rads came through quick.
Daughter is beginning to get better now but still looks very pale and her joints are so painful. I’m taking her to the doctors tomorrow to see if I can persuade them to do a blood test for juvenile arthritis as this is the way her cosuin’s illness started and it was missed for a long time by putting it down to a ‘virus’.
Boys now have a wardrobe and a bookcase that isn’t falling apart - not sure they will keep their bedroom tidy but at least it looks better!!
OH and daughter and youngest swimming and I need to collect eldest son from scout camp. At least, most of it was in the dry but been raining all night and still pouring so will be a muddy pickup. Think I will text the leader and get her to send son to me so that I don’t have to get out as back so sore.
Not sure who’s around at present - half term and hols etc.
Lynn - hope you get somehting sorted for your pain when you next see the onc and tell them about your loss of sensation etc - they reduced my tax when that started happening as if it gets too bad it is irreversible as I know to my cost.
Love to you all
Kate
Hey girls…we are a busy bunch.
Sammy am gutted but just come on here for first time since before weekend so didnt realise ur article was out this weekend and so of course missed it. Does any one have a copy they can send me to see and ill send it back after???
Kate, 50 quid, thats not bad, u should be able to buy half the shop for that!
Debs u wear me out! I saw GA last year and loved them, cant wait to see them at V this year… Have a fantastic time in Florida im sure ul all love it. How is ur sons nose???
Lyn and clare hope u both doing ok…
Had a nice weekend. First we went to east sussex to the mother in laws to see a famous jazz player who she hired for a b cancer fundraising nite in a local pub. He was great and managed to sell loads of raffle tickets. She puts me to shame really with her fundraising attempts. We then headed off to bicester the next morning for a bit of shopping in designer village, then went off in search of b&b we booked in towcester…
Well, to say we werent impressed was an understatement! They had told me they were just past a cafe and on a main road, but what they didnt say was that the main road was the A5 and the cafe was a truck stop atteached to the b&b and where we were expected to eat breakfast!!! Needless to say we kept on driving and hit the pub for a drink to dull the shock!!! Ha ha. The pub turned out to be a very nice hotel called the saracens head so we asked at reception if they had any rooms and told them our story and they did it for the same price as the b&b!!! Am so glad i didnt pay a deposit or give credit card details, thought it was strnge they didnt ask for these when i booked…oh well, there loss!!!
Decided we needed a day in the pub so started at about 2 and finally fell into bed about 1 the next morning after drinking the bar dry in the pickled pig!!! Didnt even make it out of bed for breakfast. Woke up just before we needed to be at silverstone and si just made it, although how he drove a ferrari with a hangover is beyond me!!! He broke my land speed record - just at 120mph (mine stands at 114mph on m6), but not bothered as his was under controilled conditions on a track - am sure i can beat it next time im up that way!!!
Off to see sex and the city now with mum and sis.
Take care girlies. xxxxx
HI ladies, just a quickie as in the middle of pre holiday waxing and packing.
Another busy week, went to JR yesterday and was told sons nose not broken but he has bent the bone so due to being able to breathe ok they will leave it. Must say since swelling has gone down its only noticeable to us and does give him a slight little more character. no need to hang around hospital all day having x.rays so made the most of my dependancy day off work and went into Oxford and lunched.
daughters dance show going - am up there helping again tonight, am enjoying it I get the arty bit of facepaint make-up and hair, luckily helping the big girls, really do not like doing the babies, they are cute but have snotty noses and like to go to the loo alot. watched it last night and was so impressed, of course am very biaised on my daughter but I was a very proud mum.
Kate, if I was you I wouldn’t go back to that sh*thole instead give the vouchers to your daughter to cheer her up she can pick a mate and do girly shopping and lunch.
Trace sounds like you had fun, staying at the pub sounds more traditional, that A5 is not a quite road, love the story of an all day bender, cant believe he went driving at that speed next day, it would probably take me a week to recover.
Have just booked hilton hotel key largo for 2 nights while we are away to make sure we dont get mickey moused and forget to explore, the views look fantastic. I am finally getting excited and to think I was questioning if I would still be NED and fit to travel.
Take care GG, will catch up with you all in 2 weeks.
Debs XXXXXXX
Hi gang,
just spoken to kate on her way back from a good weekend away and she has asked me to post that our lovely fit brit is in hospital. (dont know which one) She went in to get her next tax and something showed up in her bloods. I will text her to say hi and find out where she is.
Kate sounds reasonably well but has horrible mouth ulcers and ‘had trouble with a sausage’ apparently
will keep in touch sorry have been a bit quiet
xxsam
dread to think what she has done with the sausage, but kate - look forward to hearing about it soon!!! Im sure it will make us all laugh
Thanks for the update sammy, hope u ok and reason for quietness is nothing more than being busy…
love to u all and have a good weekend (cant believe another one is here already)!
xx
Well you know me - I can manage to make a drama out of anything!! Not sure what I said about the ‘sausage’ - we were talking on the mobile whilst my hubby was driving!!! Think it was something very boring like I’d choked on hubby’s one and not my friends saucy one!!! (You realise I am talking about the way the sausage was cooked, by the way don’t you!!).
Fit Brit sounded quite poorly in her text messages and also sent me a picture message of her with no hair - I just wanted to go over straight away and give her a hug, she looked so sad and poorly.
Didn’t wake up till after 11am today and slept through the neighbours breaking up concrete which is a bit of a worry as I didn’t realise I was that deaf or that tired.
Had a good time in kent. Weather not wonderful but did spend saturday on broadstairs beach as daughter’s burnt legs will testify. Not sure how we missed putting sun cream on the back of her legs as the rest of her and us are not burnt or even brown from the hot day yesterday. Added more guilt to being a bad mum again!!!
Managed to see my sister and her daughters, mum and my uncle so that was good.
Mouth ulcers still bad but didn;t want to go to hospital today - will see what they are like tomorrow and may go then as don’t think my blood counts will be good enough for chemo on thursday and don’t want to spend thursday up there for hours and then not have any chemo.
will keep you informed.
Kate
Texted kate today and she was visiting hozzy to have her sore mouth checked. Hope you got it sorted Kate.
Have bin making big black and white rings today very 50’s.
With love to our poorly girls
xxsam
kate had a torrid time wiv h last night, was late and didnt want to disturb you. Am horribly busy but am thinking of you and lynn. Will try and get in touch latter, in studio all day.
Had a friend telling me about poorly relative, in there 80’s, made me want to weep for you and L, wish you girls had that chance.
Take care
Today will be casting roses!!
xxsam
Out of hospital now after 2 units of blood and various mouthwashes etc. Had a very odd asthma like attack at 5am so needed oxygen and nebuliser but soon got over it. Had chest xray and came home.
Seeing cons rads tomorrow re big ony spread in thoracis spine, ribs and shoulder blades - nice not to have been told!! Tey just sort of dropped it into the conversation as if I knew when I didn’t - I knew my back was woesening and needing more painkillers but didn’t know I had a big bony spread despite zometa.
Plan - delay chemo till next week and have last gem/carbo month after and then rads to the tumour in my lungs. So will have bony ones done first and then tumour!!
House a tip so must go and kids now back
Thanks for all your texs etc
Kate
Hi Ladies, its Vikki here posing as Lynn because i can’t seem to sign in for some reason. She has asked me to update you all on whats been happening since Friday, so here goes…
She was refused tax after her blood tests came back showing hg count of 6.1. She was allowed home on Friday but went back first thing Saturday to have a 5 pint blood transfusion over Saturday and Sunday. I’m sure she’ll give you all the details herself but a junior nurse didn’t flush her portacath on Friday which caused a blockage and problems all weekend as she ended up being stabbed about trying to find veins to get blood. Chemo was finally administered through a tiny vein in her hand yesterday, and she only got out of hospital around 6pm so she has been very tired and fed up
The good news is that the nurses in the Chemo suite managed to unblock the portacath today so she’s a little happier that at least there were no uncurable problems with that. oh, and there is a fridge full of chocolate at home so she’s much better off there!
There is talk of stopping the tax after this session because the numbness in Lynns toes has spread a bit. Does anyone have any advice on what treatments she should ask about if it does come to this?
Hope you’re all looking after yourselves.
Vikki
Hi Vikki and Lynn
Presumaby you read my post as also been in hospital and had blood transfusions.
Lynn did text me so knew most of this apart from the portacath cock up. I’ve frequently been the victim of incompetence so know how scary and frustrating it is. So glad they got the portacath working especially as it has been in for such a short time. Good news about the choccy - very jealous!!
I had numbness in toes and fingers when I had tax and they reduced the dose by 25% for my 4th and final one as I ended up in hospital with each tax!! My numbness is still there despite finishing tax in Mar 2006 so not worth the risk of permanent damage if you want to be able to button up your own coat or tie up our own shoe laces!!
As for further chemo, I’ve had vineralbine, capecetabine (xeloda) and gemcetabine/carboplatin so there are options. The next option for me is weekly taxol which is related to taxotere but slightly different.
Would they consider giving Lynn weekly taxotere or taxol as it is at a smaller dose so side effects are less but I know it is a hassle going weekly?
Are there any more hormone options for Lynn?
Vikki - I wondered if you or Lynn minded if you gave one of us in the Gobby Gang your mobile number. Lynn has mine and probably all of ours. It’s just if she is feeling really crappy and doesn’t feel like posting it would be nice to know how she is. We all worry about each other if we don’t hear from each other and I know sometimes I get someone else to post or text on my behalf when I feel low or just crappy. If neither of you are happy about that, don’t worry - I was just thinking it might make it easier for Lynn.
Now for my dilemma - spent over 2 hours with a migraine waiting to see the cons radiologist whilst my notes came in a taxi from one hospital to the other to discuss my radiotherapy options. Basically, the bony ones have grown and now in 3 vertebrae in my chest region and left shoulder blade and extended in my ribs so that explains why my pain has been so bad. They also will try to hit the solid tumour in my lung to try to shrink it so I can swallow better. No guarantee it will work and the rads will cause such inflammation and pain I won’t be able to eat for 2- 3 weeks. Trying to fit it in so am well for our holiday - destination unknown for 2 weeks from 16th Agust and really the whole of the school hols. the gem/carbo only helps with my swallowing for 2 out of the 4 weeks so choice is to have 1 or 2 more gem/carbos and when to have rads. then start weekly taxol in September if my breathing will hold out that long off chemo if only have 1 more gem/carbo.
Seeing cons for chemo next thursday now as not well enough for this week.
Any thoughts?
Kate
Oh, kate. I dont know how you keep up with it all, it all sounds far too confusing to me! I think go with whatever you feel most comfortable to you and whatever they will let u have. I cant believe they kept all that from u. That is total rubbish and completely unacceptable.
As for incompetence with both urself and lyn i can only say that as a nurse i am completely shocked and embarrassed that such people are allowed to work with any one at all let alone with u guys who need tlc. It is a total joke
Hope both u girlies are feeling better after ur transfusions
Vikki, sorry i dont have any ideas, the other girls will be better able to advise re tax as i didnt have it as patrt of my chemo regime. Have texted but send lyn my love
Love to the rest of the gg too
trace. xxx
I have had a thought re: the tax- will chilling the feet help protect the nerves like they do for the cold cap and your hair- but cant help but think they would do this if it was an option.
Like kate says check they have considered a reduced dose, and ask what the treatment plan is for next if they are going to stop the tax.
Kate hope you got my text
Kate I dont know how you decide. Does your team have any preference? I guess it hard cos they have no idea of the outcome till you do it- I would go for the rads i think to have a break from chemo but, as you say as you havent managed a long gap it is a scary choice
love to all gg too
xxsam
Just had a text from Lynn saying having emergency MRI as lost all feeling in feet. Have Vikki’s mobile number so will try to find out and prob txt you.
Kate