hiya all
Back from chemo on 5. no-one to do my bloods via finger tip so had to canulate me at 11am for bloods so didnt want to take it out and try and vein again so just hung around for chemo at 2 - least they are very friendly!!! Back home at 5 and 1 more to go yipppeeee!!!
congrats on the penultimate Lisa. Hold on tight, here goes the rollercoaster again.
Can anyone recall what normal, healthy and happy felt like now?
My body is having a tantrum today. runs, ulcers, knackered and cold. temp is 37 so phew there. gonna take it easy now. Hope you all have a calm night, especially you lisa.
tell you what hun when the chemo is over and we’re allowed do you fancy a coffee in keswick or somewhere (when all the tourists have left of course 
Won’t be offended if you don’t want to I promise.
Hi
the rotten site just crashed and lost my post. Grrrrrrrrrrrrrr.
I have been off enjoying being a Nanna land snail but had to hand him back boo hoo. The real land snail is still here though!
I would be a giant African land snail (as they just eat and get fatter), next dose is Tues 12th probably, no idea on the song but it would be very loud dance/ club with a shake your head off beat.
Lisa sorry I laughed about your photo but it is so good to know I still have at least one double out there! Hope next dose goes well for you and Nicky. I am so so so envious about your penultimate doses. Why oh why didn’t I stick to the standard treatment? Nic the news about the bone strentheners combined with chemo sounds good, is it the one you take? Will you still go to the chemo unit for it? Joanne hi, chin up and keep stomping through these doses I need your company on this marathon. Kirsty good luck and keep us posted. Bevy and Angie get well soon and stop terrorising the snails, they could be related to me!! I am all out of step with you now I have had it postponed. poo
Hi everyone else.
Lily x
Hi Lily (or should I say Sluggy?)
Apart from being a black panther (worried a bit about that Angie but probably nearer to me than I think!) sounds like we might like the same music - love a bit of dance/club, but also like Linkin Park from when my daughters went through their semi Goth/rebellious/scruffy stages!
The chemo/bone stuff combo isn’t what I’m on but it sounds very encouraging, in fact I’d heard about it a few months back but it was with another biphos that also had good results so sounds like their on the right track. What’s encouraging is they are already approved drugs so getting this treatment into the mainstream will be quicker than any drugs currently at trial stage plus they’re cost effective which OF COURSE is the main concern for NICE!! My hand will be one of the 1st up if it’s offered for 2ndaries.
I think today’s song would be ‘Things can only get better’ as long as I don’t remember Tony Blair’s false smile when he got elected as it was Labour’s anthem.
Will be in touch later on, hoping not too long a wait at unit but I see my onc today before hand so that always delays things. Having said that I see her more often than a lot of ladies, even those on trials so I should be grateful for that, I can ask my questions each time rather than save up a huge list for the end. Glad there’s some action on TV with the Olympics this time round so if the steroids are keeping me up I may be the lone GB supporter for some of the athletics! Looking forward to cycling on Friday morning (them not me!) could be loads of golds with any luck.
Take care all, Lisa, I’m with you on this one - different side effects but both feeling cr@p for a few days. Chris (Dipstick) Good luck, you’re in today as well I think - hope it goes OK, shouldn’t be as bad as the 1st one but take it easy - you’ll know what to expect this time round. And Julia - are you on treatment this week? Chemo brain from me so can’t quite remember, if you are Good Luck.
Joanne - glad you’re back on here, hope things are going OK for you, can I have some of your neuts please? Mine weren’t that high to start with let alone this far down the track. You must be fighting off every infection that shows it’s face! Take care and post on here if you need us to support you or to moan with us.
Angie - don’t overdo it, maybe you’ll catch a computer virus then they wouldn’t know how to treat you - ha ha very bad joke - sorry!
Take care all others, Bevy, Kirsty, Lorraine and anyone I’ve forgotten, I’m off to the abyss!
Nicky xx
Hi everyone
Thought i would let you know how i got on today after my scary weekend!!!
Next saga of hospital treatment… Saw the oncologist today and they have decided to take me off the TACT2 trial. I went for a blood test on Monday as you know, to see if i has a mild heart attack. They can tell by looking at the cardio enzymes. When they did the test they looked at everything except the enzymes…Doh. This means they cannot rule out that i could of had a mild heart attack!!! They don’t want me to start on a new drug until the one they have given me is totally out of the system, so it will be another 3 weeks before they start again. The new drug is called Docetaxel (tax for short). Anyone else on this drug and if so,how is it??? My next appointment will be Friday 29th August, for a review, then if i am okay will be starting a week later.
Lisa - congratulations to you, your nearly at the end!!!
Angie - sorry to hear your feeling yucky, hope you get better soon xx
Big hugs to everyone else and take care
Kirsty xxx
Hey again.
Slight chaos here this am. somehow half the bloods taken at my docs didn’t get taken to the hospital yesterday so I had to go back for another sample, fortunately same nice nurse with the tine needles so vein volunteered itself.
Nicky, hope the trip down the rabbit hole isn’t too bad this time.
Joanne hang on in there hun, they say time heals all which is cr@p but it does change things fortunately, how much more chemo do you have to go?
Lily, get worried about just how close you and than snail are getting LOL. If you kiss it do you get a prince 
Kirsty. Yikes you’ve had a scary time, hope it wasn’t an attack. Docetaxel is one of the taxanes so a lot like taxotere, Some people seem to do ok on that and others get a lot of bone pain but it does seem to be controllable with pain killers, maybe it will suit you a lot better. They’re powerfully effective. Being a triple neg patient there’s some thought that I should have had it but not having had any nodes involved they’re keeping that one in reserve for me so in short it’s good stuff but like all the chemo’s it’s got it’s effects. Hope you fair well on it.
lots of love, more computing for me today… I don’t get computer virus’s nicky (mac user, not a windoes machine in the house so that’s one thing I can steer clear off. Actually when I went to the docs for the bloods today there was a woman coughing and sucking a lozenge. I walked straight back to reception and asked how long it would be and said “I have a low immune system and I think there are poorly people here can I wait outside” and they let me wait in another little waiting room which was nice so if you find yourself vulnerable like that do ask.
I’ve now got a load of vicks first defence up my nose just in case (apparently works after exposure too :).
Lots of love
Angie
Hi all
Back from FEC No 5 - hooray it went ahead although neuts scarily low even after boosters - hmmmm doesn’t bode well for next time, best get on the Manuka honey and Chicken soup - as said before NOT together! And the exciting thing today was that Sky were filming in the wards about a week long series of programmes about health care and funding. Yours truly was filmed whilst having my Epi put in - lovely colours for TV I guess! Will let you know if/when it’s on (early Sept I think) so if you’ve got Sky you can put a face to the name! Wish I’d worn my wig but did have makeup on - how vain! Probably if I’d had my wig on I wouldn’t have looked like a patient so might have been ignored. My breast surgeon was interviewed as well - we wondered why she was in!
Have also got some extra anti sickness tabs - didn’t want an increased steroid dose - no thank you. I’m aiming for these to fill in the gaps for the 1st 24hrs when I felt rough last time but had to wait for my next doses.
Kirsty - scary stuff! Didn’t realise it had been as bad as that - no wonder you’ve not been around. Take it easy and hope the next treatment is better for you.
Angie - Mac user here as well I worked many moons ago for an Apple dealer and used to configure databases then moved on to training and eventually, with another company, sales. I’m a programmer by background - awful stuff like Cobol and some military languages - was glad to move away from them when databases became more programmable. Was there when the 1st Mac’s were launched and before then the Lisa and Apple II’s - we all wondered if a mouse would catch on! Glad to see Windows have made an effort to catch up.
Take care all, off to slug out for a few days but will be reading and, hopefully, contributing.
Nicky xx
ps Youngest daughter got her AS results today - brainy girl got AAAB - must take after her Mum
Yeah, congrats on getting no5 in and congrats to your daughter too.
Ah It’s nice to see another girl who was in on the ground floor of the computer days. most women look at me like I’m mad. My Mum worked for motorola who used to make the chips for the old macintosh’s so I grew up with them. I do an awful lot of database work.
I don’t advertise this on the forum for fear of getting mobbed but I work with the people who built the no10 petitions site, writetothem (where you can nag your mp) and various other democratic tools. Now you know why I really wanted to get back to work. It’s worthwhile stuff not the kind of job you dread
I’m glad I don’t have to answer the petitions email though, that would be too much
hope the extra anti sickness tabs work, much better than the steroids.
Just got my neuts count back… 1 exactly so yes there are 2 cells quivering in the corner after all
take it easy everyone… when’s the diving on… tomorrow?
I’m suprised you’re still talking to us now your famous nicky
Lots of love
Hiya all
hey lily maybe you should try giving your slug some of your sterion and just watch him racing around lol
Went for my 3 month check with my surgeon yesterday. But it wasnt my own one but his locum he was of on hoiliday AGAIN. This doc came in prodded my boobs for a bout 2 secs said everythings ok you can get ready and when I came out from behind the curtains he had gone. I had so many questions I wanted to ask him and was upset about this I felt no one cares cant really explain. Mixture of anger and disbelief. So who do I talk to, my onc is never their and the doc I sometimes see you get the feeling that your bothering her. I honestly think I’m gonna loose it big time with these doctors Its not them thats going through this. All i’m asking is for someone to take 10 mins to answer my question not much to ask is it.
Joanne
Joanne
Get on the phone to your bcn. I know exactly what you mean, who are we supposed to ask these things? It makes you feel like you don’t need to know doesn’t it but you are the patient not them.
Have you seen a movie called the producers… when everyone leans out the window and says “I’m mad as hell and not going to take it anymore”, it makes me feel like that sometimes. We have to remember that these poor people are overworked but we also have to remind them that we *need* answers, we have to live with this disease and getting answers to questions is the only control we have right now. So you go get them bother boots on, phone the bcn nurse and ask her, nicely, who could answer these questions for you.
Because you’re worth it, and you are.
Lots of love
Angie
Hi everyone,
how are you all doing? Hope all of you that are more recently poisoned are fighting your way back to the surface. It makes you feel like you are on a roundabout except they won’t stop to let you get off doesn’t it. You just see the same old things over and over!
Apart from our new film star Nicky, how brilliant and how fortunate you had some make up on, Just joking on the last part!!! You must let us know when the series starts and on what channel, so I can follow it and tape you on sky plus. My Mum was on Crufts and we play her back in slow motion which drives her mad. Hey fab results from your daughter, she will have to think about an Oxbridge place. Definitely got her Mother’s brains, well pre chemo brains!!! Now you just have to work out how to push those neuts up to protect yourself a bit from bugs. Easier said than done I know, but only one to go so you want to get it on time. Kirsty I am sorry to hear your news and how stupid that they did not check the enzymes. Now you will never know for sure but I am glad they are being cautious. You get a fab long break now, can you manage to go away at all? Angie I am also amazed that you had to give more blood because they bungled! I don’t think I even want to think about all the blunders being made around us or I will head for the hills. I have been trying to think who snail reminds me of? Prince Charming? No ! I know - the tank top terror, toothless gums in every suck!!!
Went to see the onc today and the head research nurse for the trials and they say I can start treatment again on Tuesday but have changed a lot of my drugs over. No longer having the major constipator ondansetron but now allowed to move up to another one, presumably more expensive, so had to suffer enough before allowed to try it. Also having new acid/heartburn tablets which do not come in those disgusting plastic tubes, which I can taste for hours afterwards. Now being sent home with antibiotics and fungus exterminator each time to hit any side effects fast. It all sounded so good until I found out why!! They are still going to give me the maximum dose and see how I go. Fab, thank you so much. So I go 2 weeks in a row then crawl in to see him afterwards and describe how it was for me!!! Hubby is off and taking me out every day to try to distract me from the impending doom of next Tuesday. However as our trips always revolve around tea rooms with all day breakfasts and then home baked cakes or cream teas in the afternoons, I will soon be offered an even bigger dose when my weight goes up! The diving is from 6.30 to 9.30 tomorrow (Friday) if you want to watch but I’m sure it will be repeated later on. I hope she gets on ok.
Take care and hi to everyone I didn’t mention, you were not forgotten
Lily x
Hi,
You might be interested to know that my Bc friend had her dose reduced due to continual delays from low neuts. When she asked whether this would affect her outcome, she was told that they can reduce chemo doses by 60% and they would still be effective!! Makes you wonder, if that is completely true why we all have so much?
Lily
Hi Lilly Ange and everyone else.
lilly you seem to be having a really bad time makes me feel guilty you were ahead of me on treatment and I now think you are at the same iam having cmf on wed for first time and I’m dreading it think it’s more about doing something new and what the side effects will be as ive been ok on epi just my luck to get the side effect on the easy one lol. Thought I would let you know something positive that has happened as all I seem to do is moan on here. 2 of my sons are now starting college on doing Computer Grahic design and the other Computer design and architecture so proud of them my other son has started a new job as a sales consutant. Ive never pushed my kids and theve made there own choices and Im so glad they are sorting their lives out at last. Oh and just found out i’m going to be a granny again for the 7th time. 6 kids and 7 grandkids christmas is going to be hetic this year lol Catch you all soon.
Joanne
Hi all
Joanne - after your cr@ppy visit with the onc - sorry locum at least you’ve got some fab news about a new grandchild - wow life will be busy but something lovely to look forward to especially as treatment will be over. As Angie says - get onto to someone at the BC unit and have a right go at them, is your GP able to help at all in terms of getting them to give you more time or answer some questions?
Lily - yes it was VERY lucky I had my makeup on believe me! As I’d been put in the ‘bed’ treatment room I had my feet up, not painted nails in a long time, and made sure I had my right arm across my belly to disguise any flubber - I hope! As they say the camera adds 10lbs on so I’ll look huge - only joking - the steroids hadn’t kicked in by then. We all looked very serious which was probably good for TV and as we didn’t know if he was sound recording us my bcn and I weren’t talking! A complete change from 5 mins earlier when we were all giggling away. We reckon she will be told off for her dreadful bedside manner and told to get her hair trimmed as it’s just getting a bit too long!
I was offered a lower dose of FEC or these injections and decided on the injections, we’ll see next (last) time. Will be doing all I can to boost the little blighters naturally as well as chemically. Good luck with next week, sound like you have a nice little ‘goody’ bag to help you!
Angie - I may go back to consultancy on db’s when I feel like it. The IT Co I work for have pre sales, development and implementation so there is a path there if I get fed up of tele marketing which is what I do at present. It suits me at the moment as I can work as and when and also from home if I want to, plus we have a good laugh so that’s an added bonus. Couldn’t you have slipped in some extra messages directed at the PM for everyone who emails there site, telling him to give up now?! That would have been great for either Tony or Gordon but maybe you have as Gordon won’t be long in the job me thinks!
Take care all, can’t remember everything (n anything) at the moment - just off to catch the cycling. Have a good weekend.
Nicky xx
Hi Lily: I’m starting the CMF on Tuesday too - not looking forward to that - its the double dose that gets me. Two weeks with crappy tastebuds, etc, instead of one. I’ve not suffered anywhere nearly as badly as some, you included, but now have sore veins and watery eyes 'cos the eyelashes have almost gone. Now I’ve finished the epi hope they will start to come back but I think it will take some time.
My first epi was done by my BCN who, when looking at my programme of treatment, agreed that they were probably over treating me!! You do get sick of them saying “just in case”, “just to be on the safe side” and then we all suffer from horrible side effects. Surprised with the NICE people around they don’t cut the amount of treatment on cost!
Joanne: there is nothing more infruriating than being treated like an idiot! Your questions are very important and the appointment “system” (so called) only gives 10 mins for a consultant - can hardly say hello in that time. I think a bit of ranting and raving and jumping up and down is called for - but it is so wearing having to keep battling with them.
Last time I had an onc appointment we were kept waiting one and half hours - they cheerfully told me it could be up to 3 hours! I don’t wait three hours for anyone. If necessary I will see him privately or make sure I have first appointment in morning. We don’t need this additional hassle do we??
Love to all, keep well. Lily: best of luck for Tuesday, we will compare notes at the end of the week.
LOL
Julia
Hi All
Nicky - let us know when you are on TV. Sky TV hey next will be Hollywood Congratulations to your daughter also, on her exam results. My step daughter also got her results yesterday ABC. Just waiting to hear fron my son and other step daughter for there G.C.S.E results now. Nerve racking time!!!
Joanne - Glad to see you back. I would phone your bcn for advise. It will put your mind at rest. Congratulations on becoming a Grandma again
Lily - Sorry to hear you still having a rough time. Will be checking the diving out and cheer on your friend. Good luck to her Will be thinking of you on Tuesday xx
Luckly for me i have 3 weeks grace before starting treatment again. Have decided to go away camping for a weekend in a couple of weeks. I know we are pushing it with all the rain we have had, but it will be good to do something normal. Just will have to grow some webbed feet LOL
Hope you all have a good weekend. Big hugs to those who have just had more treatment xxxx
Kirsty
Morning ladies.
Bad night last night, keep having the same nightmare where I’m frantically try to break loose of something. Chemo me thinks, getting really bored of symptoms now… so bored.
Watched the start of a zombie movie, I usually like them, love resident evil but this one was too much. Too many scenes in a hospital with gratuitous use of needles. I just passed out. then watched sink or swim on tv instead… that’s a sweet movie.
feeling wiped today. it’s the humidity I think. going to go up to the village bakery and have some lunch.
Hope you’re all hanging in there. You’re all sounding remarkably chirpy for people with such toxic blood streams
lots of love
Angie
Hi all
Thank you for your comments will talk to nurse on tuesday when I go for my bloods.
have you ever had a kind meaning person give you something that turned out to be so inapproprate.
my next door nieghbour knew I was spending a lot of time in bed and asked if I would like some DVD’s paticularly recommending a film with Jack nicholson and Morgan freeman both of whom I love it was called the bucket list dont know if any of you have seen it. I settled down with my popcorn and ices looking forward to watching it and about 20 mins into it you realise that its about the two of them having chemo and being told they only have 6-12 months to live. Is that being insensitive or what I was gob smacked. Havent said anything to her but was quite upset more by her lack of sensitivity.
but to give the film its due it was good and quite funny too. But made me face my own situation in a more morbid light.
Joanne
Hi Joanne
I have just read your thread and i would of looked at been given a film like that as insensitive also. Maybe you should recommend her visiting a website on chemotherapy and what people go through and how it can effect us, not just physically but mentally. I have also had morbid thoughts, but keep kicking myself and saying ‘i will get through this yucky time’.
Kirsty
Hi Joanne,
not what you need, looks like a good film but one I will leave until I’m more emotionally stable, ie post chemo… very post chemo.
I think it’s impossible not to have morbid thoughts when going through this. I wonder how people not dealing with something like cancer live in such blissful ignorance now? Life is short. I just keep reminding myself that hopefully I will be one of the masses who lives to a ripe old age and I would hate to live the next 60 years fretting that I might die soon so am actively trying to work through that one. Not easy, but hopefully possible.