Hiya lily
Hows you.
I got hickman line in today oooooooooooo its sore. They called today to see if they sould rearrange my appointment and gave me 2 hours notice i was suppose to get it before chemo tomorrow. I just hope the pain eases off. But its in now and hopefully no more pain in my arm God I wouldnt wish this Crap on my worse enemy.
Joanne
Hiya all
Back in the land of living just - had a rough few days and couldnt even log onto lap top! Had the tax pain, think I might have preferred the sickness back! Coming round a bit now, still on paracetomal for pain and off for bloods on fri but might try an hour or so in work on thur, just get so tired. was totally fed up and had enought but a few days later start to come round. Been so hot, ratty is expanding by the day, on plus side hair is sprouting a tad but sure day 10 will wipe that out. Mouth horrid but made some tea and a glass of wine tonight so must be coming round a tad!
Lily, sounds like youve had a tough time, hopefully we have a few good weeks ahead.
Vertangie - Cockermouth is lovely, go there a bit as have friends that live there - roll on us getting the genetics results - whenever! Got Hot fuzz to watch too.
To everyone else, hope you are as well as can be
xxx
Lilly - hi I am newly diagnosed and I’ve been reading through your thread. It sounds like you have had a tough journey and I hope you are feeling much better.
I am also in Chelmsford so I guess you must be treated at the Helen Rollason Suite -
With best wishes
Moonshinexx
Hi everyone,
I felt like it was my birthday with so many messages to read, that must have boosted the neuts all the chuckling and ooing. My mouth is now back to the standard of licking the dog’s backside all night. Not sure there are enough or sufficient words to describe the place my mouth took me to!!! It would have involved a manure heap, 4 dead sardines, a dirty dribbled tank top, a plate of tripe, a tube of copydex, a dead hedgehog, 10 day old socks, numerous farts, e coli food poisoning and a hand full of razor blades!!! Nobody can say I exagerate!!
Still you know they say you can’t keep an old dog down and this old dog has still got a lot of fight, how about you old dogs??? We are in this together, safety in numbers and we just need to keep remembering why we are doing this and keep checking that big picture - of us getting good results, improvements (go Nicky), finishing another dose, getting told to come back in 6 months, whatever is out there for each of us. Every little thing they learn from us helps the next generation and those of us who have families know we would give up everything for them in a second. We are walking medicine for the docs to learn from. Less of this psycho stuff I’ve turned you into a guinea pig farm now!!! Must be the epi!
Bevy oh I’m so sorry about the wound but the anti biotics should make your neuts bounce up and maybe a surprise result will be you feeling better next time. I hope so and my physio friend says keep stretching the arm as far and as long as you can until it loosens. Little and often with the exercises. Everyday it is such a shame that when you have had a better time, that your tooth had to play up. Let us know how you go with it and hoping you keep up this good run for the next one. Hoping it does not get too hot for you as that finished me off. Wishing for rain for you now.
Angie shall we start a new game bowling tummies, actually mine is a bit more like a landslide, looks like it slid down to the biggest point. your Mum will be busting to see you and she spends so much time caring for you with her homeopathy, etc that we will be waiting to hear her newest tips to try each day. Have a really lovely visit and hoping you are feeling a little more cheery now, I know you are an optimist, I can tell from your posts. Go smell that fresh air and look at those lovely views when you feel blue. Kirsty glad to hear from you and I think we all deserve medals, you all keep me afloat. Nicky I am so desperately sorry that cake comfort is not back in play and will hope to hear that you can soon start enjoying the good bits. It is annoying me that the not so good bits seem to be encroaching on my good days. Are you the same? Hope you get your trip sorted out too. Lisa soon as I heard you were on wine I was rlieved, good for you and so sorry you got the cr@p pains. Still waiting to see what the new drugs do to me in a couple of weeks. Keep in touch and be nice to ratty!!! Moonshine hi how are you? Yes I am in Chelmsford at HR. Are you in chemo at the moment? Trying to meet up Sharon on this forum, shall we have a big meet up if our calendars ever collide well?
Joanne well done, at least it is done now and it will ease over a few days. I was glad I had a port but it takes a while to really appreciate it. You forget how the surgery nags. Take care and don’t bump it or fall asleep leaning on it.
Hugs to everyone and sorry for waffling on forever but didn’t want to forget anyone, hope I managed it.
If this posts disappears now you will never read this!!!
Lily x x (part fungus kiss)
Dear Lily,
Poor you and your mouth - it must be bloody awful for you. You are so right, we are all in this together, safety in numbers - I agree!! Having a family is what helps us fight on I know, I’ve got 3 fantastic kids and I’m determined to be around for them.
I am waiting for results of MRI which I get next week, tuesday. I am at the tests - worry - tests - worry stage, as don’t yet know what surgery or anything I’ll be having. I’ve got it all to come HELP!! I am under Simon Smith (well not literally under him) he’s so nice, and Heidi is my BC nurse. I only live 5 minutes from HR - so I won’t have far to crawl back home - though it would be nice if I was walking. Have not spoken to Sharon on here yet - yes it would be great to meet up - boosom buddies together! Who is your research nurse?
I have recently brought a labrador puppy, he’s so cute and take him for lovely walks down by the river (at back of me) when I go down there it’s so nice and lifts me a bit. I think I am still in shock and coming to terms with this bloody dx which I could really have without (couldn’t we all) it’s so nice to be able to share all thoughts and feelings with you lot.
Hope to talk to you again soon and that your mouth feels better,
Love Traceyxxxxxxxxxxxxx
Morning Ladies.
Well something had to go put a damper on my good week didn’t it… lets just say (itch) off to get (itch itch) a tube of (itch itch, itchy itch) canesten in a mo. God I HATE thrush.
Sorry windge over (itch 
Glad you’re all stilll hanging in there, you can throw me down a bowling alley any day Lily
Hi Tracey,
I go in to get results and have a big chat next week too. I am trying to not think about it until I see the hospital approach road. This is my policy with everything I go to and boy have there been a lot to go to. In one 3 week spell I had 8 things done and just thought about the one next thing I needed to do and afterwards thought one down whats next. Nothing clever in that of course but I felt that I could run into a bit of a panic if I thought about all the things I had to do. I was desperate that they said I might need chemo and by the time I went back for the results and had spoken to a few people who had not had chemo and got it back, that i went in and more or less asked for it. It is really tough to take it all in. I used to say ‘you have cancer’ to myself, every day to believe it and then kept worrying that I had not reacted enough and was secretly having a nervous breakdown! My mouth is ok now or as good as I can expect, thank you. the pup sounds so cute, what is it called? We like dogs on this thread they have useful things like H. You know I will always think of you under Simon Smith now.LOL LOL. Keep chugging along and let us all know how you get on. The ladies on this thread and the whole site are amazing and constantly get my head back on track as I rollercoaster through this mad time in my life.I will know nearly everyone in the chemo unit soon and we can all cheer each other along
Lots of luck with the results
Lily x
Hi Lilly,
Just a sec (phew it’s hot under here) jut crawled out fom Simon - Christ how will I ever be able to look him in the face again now!!! hope his ears are not burning! gald to see that even though you have been on a difficult journey your sense of humour is still perfectly in tact.
I know all the staff at HR as unfortunately I have spent the last few years back and forth there with my lovely hubby, who sadly died in October. It will be incredibly hard for me going in there for my own treatment, when it is all still so fresh in my mind. But what can I do? I got the b*****d thing - so don’t have any choice. Still I musn’t moan too much there are plenty worse off than me. I do feel so incredibly helpless regarding Paula43, it’s heartbreaking, and I really hope this new chemo does it’s stuff.
My black labrador pup is called Ralph, he has cheered us all up so much. I’ve got three kids, boy 16, girl 14 and girl 10. They have been incredible about all this, my little stars.
Love Traceyxxxxxxxx
Well Lily - I’m glad I’m not your dentist I really hope this is only whilst on chemo otherwise I’ll have a totally different picture of you in my head! You do seem to suffer with mouth problems with Epi so let’s hope this doesn’t continue when things change. You certainly seem much better, as I am as well - thank god. You never think it’s going to lift do you? Then suddenly you start ordering the family around and looking at least a bit interested in life. But please stop referring to us as old dogs - we know you’re only after our H - how’s it going (staying?) by the way?
Angie - there’s always something extra to p*ss us off isn’t there? By the way that wasn’t meant to be a reference to your nether regions but seems apt. This month for me `I get the special treat of injecting myself 5 days in a row to boost the WBC. Having said that it’s not painful - way too much flubber - but I did need to go through it carefully with the practice nurse in case I got the procedure wrong. What is the point in the BCN’s telling you what to do when you’ve just had an arm and a half full of chemo? Fingers crossed it doesn’t delay me any more and boosts the neuts to a reasonable level - it’s been a bit scary knowing how low they’ve gone with no indication. Hope you enjoy your DVDs and thanks for the tips. Hope you also have a great time with your Mum, she’ll love to see you and will just be hoping you’re feeling OK so won’t worry about your bowling ball Aren’t we all gorgeous at the moment? Belly, bald, burping, anything else?
Joanne - you poor thing. Hope the soreness passes soon and you don’t have any problems. Just think, no more poking around for veins you lucky thing!
Lisa - must be tough going through different chemo and getting another set of side effects. At least you must be half way through so not too many of the new one? Glad you managed a glass of wine - that’s my aim tonight - what ambitions I have! A nice walk to the pub and a cool glass of rose - as you can tell I’m very easily pleased Take care and make sure you note any symptoms you get so you can be prepared for next time.
Bevy - I’m sure the antibiotics will help and shouldn’t affect your counts. I’ve been on them 2x now and neuts seem to go up when I’ve had them. Hope scar/soreness gets better very quickly - you really don’t want to have to deal with that as well. Nice to hear hubby got in on the act! What are they like? Good job it hadn’t been a gynae problem! That would have involved a bit of searching! My hubby nearly fainted in the chemo ward last time when they were discussing my injections. he’s so scared of neddles he fainted once at thee vets when the cat had an injection! Wuss!
Tracey - welcome to our lovely little group. Do ask any questions you’ve got as and when they come up - we’re so clever! We are a few treatments down the road to you so hopefully some of our experiences etc will help you. Hope all goes well with scan and treatment plan.
Take care and watch the sun
Nicky xx
Thanks Nicky the infection feels better but is covered so I haven’t peeked yet to see if it is working the joke is is now have a sore weepy eye too
sorry pressed the wrong button the problem with only having one good eye! I think it must be an allergic reaction to something I have come into contact with (maybe hubby!) and and then to cap it all the hair at the sides has started to fall out. Oh I make such a delightful picture. I have my next chemo on Wednesday so if the hair is falling out big time sod using the cold cap again but I will have to wait and see.
Joanne hope the hickman line has calmed down for you but at least there wont be that fight to find a vien.
Tracey sorry to hear of the sorrow you have already been through and your kids, life is so bloody unfair but keep on hanging in there for them!
Lily glad to hear your mouth is feeling better sounded really ghastly we would make a good pair red swollen eyeball and dog’'s breath don’t think we would get many offers of a night out.
love to everyone else from
old red eye!!
Hi ladies
Got my first chemo through the line today and I must say it was fantastic. The pain as eased greatly thank god which I hope I can sleep now… I also can syomathise with you ladies who have experienced sickness on chemo I havent had any up till now and havent had to take any anti sickness tabs at all so today I rold my nurse who was delighted and never gave me any. But me and my big mouth I feel slightly queasy tonight but hopefully it will pass think it may be down to the fact that I didnt sleep well last night due to the pain in my neck which felt more like a pulled muscle so ponce I got my head down i couldnt move even had to get my son to lift me up to go to the loo. thank god he’s now used to seeing me naked and doesnt faze him at all Bless hDo any of you get to the stage when you say enough is enough I feel like that most days and cant shake the feeling yesterday was bad enough I dont think I can put up with much more poking and proding maybe once i’m on CMF things will ease up a bit. Cant wait till that light at the end of the tunnel is closer.
night all sweet dreams
Joanne
Someone tell me how to whisper please!
lily are you still online i need to ask you something
Lily - would love to help but I haven’t got a clue myself!!
Let me know if you suss is!
Traceyxxxxxx
lily
Iam going through every site i can find on secondary liver cancer see if i can find anything helpful see what you think of this one as it keeps poping up
Hi Lily
I would imagine if there was anything to worry about they would call you. I think what getting to me now at the time of my results after surgery they told me that they only took one sentinal node out and that had cancer and rather than doing further surgery they would give me more chemo and more rads but in my neck area as it might have spread to there. at the time I didnt think about it as I thought they know best but the more i read these things the more Im starting to come up with questions everyone I read all say the had more than one taken so why me and maybe they didnt do any more surgery because they know it had spread further. boy do i need to ask more which is not like me at all. I’ve had no scans anywhere do you think I sould demand a check or am i being paranoid.
Joanne
lily
That worrys me as i know that they havent got it all so think ill make appointment to see onc and ask all the questions i should have asked ages ago guess at the time i didnt want the answers but i would rather know what i’m dealing with hear and if they think it might spread then gonna insist on a scan. They want me to finish this bloody trial for them then they can damn well do something for me.
joanne
hey guys… look at the box you’re typing into… straight above it is a box that starts with:
"Send a private message to "
if you enter the persons username into that box (it’s case sensitive so make sure you match where the capitals are) and then fill in the message as usual. When you send the message only the person you’re sending it to will see the message (and you can too) no one else can.
Does that help
you can also find message by a person by using the search function and searching for the username followed by a colon ev
vertangie:
HTH (hope this helps)
Angie
Hi you late night users!
Was going to tell you about the private messages but Angie has done the job. A whisper back will reply on this thread but if you want a totally private message go to the Private Messages bit on the left hand side and start a new one but remember to still put the user name in the box. You may need to let the person know you’ve posted a PM there as it’s not a place everyone looks at.
Hope I’m not butting in but I gather from the conversations Joanne is worried about spread? I’d say insist on some extra scans if you can. My onc/hospital didn’t do extra scans at all after 1st dx but they were completely confident they’d got it all - which I also do believe as I had clear margins and clear nodes (5 from 20). I also, from my team, don’t believe they would leave anything there if they thought there was spread, they’d deal with that 1st - as they are doing in my case now. It’s only nearly 5 yrs later that I have some spread and this got picked up on a routine scan. If you have any concerns I’d speak to your team and say you need reassurance.
Take care
Nicky xx