Hi,
Siggo sounds like Jill is HER2 positive and so will be on herceptin after chemo,etc. It is a long haul but you have to be glad that it is not a few years back when they would not have given you the drug without private insurance or lots of cash. I would not look too far ahead, just concentrate on the next bit/appointment. Many people are back at work when they are on herceptin or rads, and chemo too. Good luck to her.
Had a slug of a day just lazing around and still kept falling asleep. I think someone is doctoring my cups of tea!! Managed to stay awake for x factor though. I am really putting on weight at the moment, probably the steroids again but also taking on fluid. Joanne how long after a chemo dose did you dye your hair, I need to do somethning to liven myself up? Hope your tummy is starting to improve, it must have been terrible.
Speak more tomorrow
Lily x
hey angie, glad you got yourtime of month, mine seems to have dissapeared since last chemo. getting a bit worried about hormone treatment as heard most people get it either before rads or just after, suppose Im going to have to wait until after op and worried what happens in meantime.
Lee hope all goes well.
Everyone else, evreyday, kirsty,nicky, lily, enjoy the rest of the weekend. Im having a afternoon out tomorrow in the pub with friends, then 9am monday my, cant believe it month after op check up, hope its all okay, then straight to friends dads funeral, so much for nice day off work!!!
xx
Hi everyone
Lee - some very good words from Angie, well worth taking note. Hope Jill’s scans etc come back fine and she can be on the road to treatment and beyond. It’s a long slog but as you will have read on here it’s all do-able - although slightly scary at times for some if us! I went for the wig option and bought it from a local shop but you can ask at the hospital where Jill will get her treatment as they may have a service there or issue vouchers which I think everyone is entitled to. I wanted to have more choice so did my own research! Either way make sure you don’t pay VAT on any wigs as they’re exempt for chemo patients. By the way mine is still looking so natural that when I met with OH’s family this week, for the 1st time since starting chemo, none of them thought it was a wig it’s so close to my ‘old’ hair and style. I don’t like wearing it but it gives me confidence to carry on as normal with no sympathy stares! Each to their own though and I’m not the sort to have worn hats etc beforehand so I would have still been stared at if I started wearing hats! Take care and make sure she’s building her strength up before chemo etc.
Lisa - periods seemed to have given up after 1st chemo with me but I am a bit older than you. Here’s the gross bit - I did have one really odd one round about FEC No5 which I can only describe as ‘very old, let’s squeeze the last bit out’ blood - sorry lads and ladies. Whether this meant they’d stopped for good I don’t know as I’m now on Zoladex. Worth discussing with Dr tomorrow about hormone tablets etc because even if you’re having your ovaries removed you’ll still be on some sort of tablet (assuming this hasn’t been done yet?) Enjoy the pub today - we usually go and meet friends on a Sunday but they’re on holiday at the moment - it’s not fair! And the weather’s not so good today so probably won’t bother with the walk either.
Lily - I did well on the weight gain during chemo ie didn’t put on much at all but after last one it seemed to shoot up. I’m sure this is linked to fluid retention as both you and I know that’s what they watch for in pre-eclampsia. It’s coming back down now but I was getting a bit worried! Having said that I’ve still got the old puffy hand and I think oedema in my left leg (like you mentioned). This sounds a bit weird but I’ve been trying to get a new pair of boots to wear and keep trying on the left one and I can’t zip it up! Believe me I don’t look as if I’ve got fat calves but the boot tells me I have. Anyway the other day I tried on a ‘right’ boot 1st and hey presto I could zip it up but when I then put on the left boot the zip wouldn’t do up so there’s definitely some fluid retention there! The left side is my chemo side so don’t know if this has anything to do with it
To everyone else enjoy the rest of the weekend whatever you’re doing, and hope those who’ve been down the rabbit hole are climbing out and this week is better for you. (Sorry you’re on your second dose Lily - and Julia? - but it’s so much closer to the end now, hang on in there)
Nicky xx
Hi,
Lisa hope you had a good time today. Did you mean a month after chemo check or have I missed something? I can’t work out when I get checked although i have to see onc before starting rads but that will be in Dec. You will probably be through your next stage as well,by then! Hope the funeral goes as welll as things like that can. I get very upset at them. Did you enjoy x factor? I think Cheryl Cole has added quite a lot to the show, do you like her on it?
Nicky I hate everyone who goes on holiday too. Will we be able to get travel insurance for next summer do you know, or will it be a problem? I am not staying in the UK again if I can manage to arrange something.
I had a bad night, spent large amounts of time humming in the bathroom with griping pains. Still feel better today for it. I laid in and everyone else got up to watch the GP. Yes my fluid is in the chemo leg too, glad you said that. we will just have to hope it goes in time, yours first I guess being ahead of me. I think I need to head for ugg boots as very wide!LOL.
Well will go and sort out dinner for the family, hope I ordered something big enough from Tesco delivery. I am ordering very odd thing at the moment! Hugs everyone x
Lily x
hi lily
i died my hair after first cmf then again last week so far so good
joanne
hi everyone
hope you all managing to keep smiling (difficult somedays i know.) ive just had grandchildren for weekend and been back to work as well, so going climb into bath and relax. i feel so lucky to be having a break from chemo, and keep thinking of what some of you are still going through. cant do any of my clothes up, because of weight gain, and cant afford to buy a new wardrobe. hair is coming back like lilys black with lots more grey in than before, i think when its long enough i too will be reaching for the dye. its strange how my grey has come back i have like a moekan (bad spelling i know) down the middle, dont know where thats come from.
lily 2000
im still praying for you, im asking that tuesday will be without compications, and as pain free as possible. you are so brave , but it does seem harder as you get near the end. but youll soon be looking back and thinking how quick it went. best have bath before son comes in for his, hes 13 and he’ll use anything as an excuse not to have one.
my thoughts are with you all, try to ;make the most of each moment , thats all we can do.
goodnight god bless x
hi,
Joanne thanks for the advice about the dye, the organic ones are quite expensive aren’t they. I asked my girls’ advice and they think I should hang on a few more weeks and then have long stragglers chopped off and go short and copper reddish. Not too bright, just warmer than it is so I don’t look so pale. So the hair plan is postponed for now.
Lorraine, you are going to make me boo, if you keep being so nice, but genuinely thank you for your support, thoughts and prayers. You make me feel like I am wrapped in pink fluffy cottonwool. I don’t think I am any braver than anyone on here, maybe a bit more vocal and get down what others are thinking. You have a mohican , well I have the mallen streak down one side. What a sight. I bet you had a fab weekend with the llittle ones and good weather to go out too.
One of the ladies on another thread called this bit ’ the 8 day challenge’ for me and that sums it up. So Julia hope you are ok for your 8 day challenge too and Joanne your day one challenge this week. I am actually getting a bit chirpy as I feel I can start to see the finish line as I finish number 8 if my bloods are ok on Tuesday. My port is doing seriously weird things like pushing right up to the surface and sticking out like a button. Good for robot and Frankenstein jokes! The tubes are all starting to feel hard and move so that might be why it is playing up. I do intend to mention my worries though before I start the next one. I would like to know what they do if the port won’t shut, just to check they know!!! My husband is coming this time so at least I have someone big enough to throw me over to A & E if necessary.LOL. Does anyone know how easy or difficult it will be to get travel insurance for next summer. I want to book at the end of this year but will take insurance out there and then just in case.
Hugs everyone in this week or having results back. Thinking of you all
Lily x
Hi All: Just did message and hit wrong button and lost it! DoH!!
Anyway quick message to LILY - hope you have a better day tomorrow and they get your drugs in the right order. Went to dracula this mornig which was quick and easy but am bruising again. Think I will bruise anywhere at the moment. Will start on the tissue salts today for veins but don’t think they will help this time. Am getting to the point where I will take anything that will help. Not looking forward to tomorrow but at least we have only three more to go -Thank you God!
Getting really fed up now and tired - can’t wait for end November.
WIll come back and check on everyone later in week - am off to finish quince jelly and to poach some pears to take to friends as pud for supper tomorrow night.
Love and hugs to all
Julia
XXXX
Julia: I didn’t know this until the last couple of rounds but I read that bruising is connected to red cell count, it when you’re anemic bruises form easier and take longer to heal so maybe take this as a warning to start eating cherries and red meats if you’re not veggie but cherries are excellent, or cheat like me at take a spa tone with some smoothie 
Hope you and Lily have an easier day tomorrow and then enjoy the fortnight “off” as soon as the side effects pass.
I shall be attempting to make it to rads again today, fingers crossed. I have already had a near miss with a very very large birds nest falling out of a tree. If I had lingered any longer than 30 secs it would have been right on top of my head!
Hope you’re all enjoying this fine and windy day, remember to duck if anything comes flying at the head.
Lots of love
Angie
Hi all, just a quick catch up before ‘enjoying’ my trip to Tesco.
Lily - Insurance shouldn’t be a problem for next year. There’s quite a few threads on here but the cost will vary as to how long away you are from treatment so it may be worth delaying rather than rushing to book somewhere. For primary dx there’s quite a few companies but I’m struggling with those for 2ndary dx. It’s OK for Europe (for me) but a no-no expense wise for USA. I’ll check that one out for next year. One company which has been mentioned on here is miaonline who have a webaddress based on that. Also the BCC leaflet for travel insurance has quite a few companies. Travel ins to USA after primary dx was very expensive when I looked a few years back but it did get cheaper certainly after the 2 years post dx. Having said that about holidays we are going to Paris at the weekend, with our 2 girls as the family holiday we missed. Not as long as I would have liked but I think we’ll all have a good time. I need to sort out insurance for this but in any European country I would get treatment in their national health hospitals if needed, plus we have an annual policy anyway that covers losses etc so it’s not as crucial as going elsewhere like the States. Good luck with this week’s dose, hope all goes well.
Angie - a flashback to your question about why do we get hot flushes etc when Tamoxifen acts on the BC cells. I thought that was a veery good question and tried to find out. However nothing seems to say why. They only website I found which had more info said that Tam acts as an anti-oestrogen on BC cells but can act like oestrogen on other cells! Very confusing. Maybe it’s a question for the oncs? Hope rads went ahead and you’ve ticked one off. How many do you have? Look after yourself, I’m sure you will, and rest when you need to, they can be draining but nothing like chemo.
To everyone else, sorry if I’ve missed any questions directed at me. ! have read all your posts and it’s good to know we’re all keeping in touch. Hope you are all well.
Take care
Nicky xx
Hi Lily
Just to let you know I have booked my travel insurance with Mia and it was very reasonable - and that’s based on me having secondaries - so I can’t think there’d be a problem in your case. £34 up to 5 days and £39 for 7 days. This is to Paris but assume mainland Europe would be similar. Also, from January, they are covering ‘us secondaries’ to USA etc so, again, I would expect they offer that already for primary dx’s. Good luck this week and when treatment is all over you can look forward to a well deserved holiday I hope
Nicky xx
ho ladoes
We;; off to see onc tomorrow and wont br coming out till i know that they are going to do spmetyhing about my chemo I couldnt go through that again/ So fingers crossed
Joanne
Heya Ladies
Rads went fine, nothing happened so I think my run of bad luck might have passed for now.
Joanne hope you get a change in regime or support drugs at least. Remember you are the patient and you have the right to refuse anything at all. Not saying you should just that you have that right.
Lily: Hope that port behaves itself. Message to Lilys port “Behave yourself” (I have a knack of being able to send remote tech karma to machines don’t ask but they behave when I tell them to… exception is cars of course)
ohh dinner back soon
RightyO. So I have a copy of my pth report now and it is interesting as it says that I should have come off the pill at the start of chemo to reduce the risk of throbosis basically. Only problem is I was told the opposite and stayed on it during chemo even though I wanted off it ASAP… ho hum, that’s what you get for not pushing for the path report back at the time… .grr
I will be offered hormone treatments and biphosphonates for 5 years. so yeah to the biphos then.
Hope you’re all doing well and tomorrow is smooth for all.
Angie
Hi everyone,
Julia thanks for the message and of course I will be thinking of you too and hoping the veins do a stretchy scooby doo and become big enough to stab easily!! I went to the vampires today too and pulled rank and jumped the queue as it was huge again. Mine is not bruising but is bleeding a lot more these days. It ran down my arm today and caught her out. Hope my platelets are not down. I think they hit the same vein every time and it is understandably pood off . Just like us! I have the same thoughts, only 2 after tomorrow and the end in November. yaay I think we just caught sight of the finish line - how many years have we been doing CMF ??? LOL. I was a young girl when I started this!! Hugs for tomorrow x .
Hey Angie, is this a new line in post chemo hair - the birds nest look. Great story. Thanks for the Karma for my port. I am open to help from anyone or anything if it gets me to the finish in one piece, bowels still attached! I am going to have a moan as too much went wrong last week. Good job I only see the unit onc tomorrow and not the main one or he would be really cross and heads would roll, he doesn’t tolerate incompetence or mistakes well. Glad to see car and rads are rolling along now, boy did you overtake me in all this, keep on cruising to the end and don’t look back. I feel like I am in one of the races on Top Gear but most of you are Jeremy Clarkson and I am always last.LOL. That is so annoying and potentially dangerous not to tell you to come off the pill. Some of these docs just get hung up on babies, they even told my friend of 52 it was better to have a coil in case she got pregnant!! They obviously don’t realise that chemo has a bit of an effect on that side of life and think we are all bonking all day long.LOL LOL. Could I manage a quick one before the next dose of the runs. Hmmmmmm. Sorry couldn’t resist! Are the biophosphamates done iv, because 5 years of more iv. yikes, yikes, faint away. I will not have the port taken out if that is coming my way. Please tell me it is not true?
Thanks Nicky, I heard that USA would be the last one to want to see me. I ran this past my cousin in law, who seems to think that you could go there with no insurance and their state scheme would have to treat you. She really believes that but is very affluent so not sure if it is fact or hope. We can go and stay with them so it is annoying that that is the most expensive place to visit. Then I think what I really need is a relaxing sit around under an umbrella with lots of food holiday, to pick me up. I was also told a good firm for insurance after BC is insurepink but have not tried it myself. Just read about your insurance, that looks very promising. I gather Canada are much more lenient and are ok from 90 days after treatment, a relative over there says. It makes sense that you would be better risk early on as long as fit to travel.How was the Tesco trip, I can’t stand it and my eyes go mad so now have a Tesco delivery. It costs about £5 at busy times but when you deduct the petrol and putting things in the trolley, on the checkout, back in the trolley, into the car, out the car and then unwrap and straight down my family’s throats I thought it was worth it and saved hours in time too. How are you managing with work as well? Have you got your energy levels back yet?
Joanne giant hugs for tomorrow and that the onc gives you the careful concern you deserve. Do I need to prepare myself for you finishing too?? Good luck and thinking of you. Lorraine have you thought what else to do,with the shop being closed now? I am sure you miss all the activity and social side of it particularly. Bevy, Kirsty and anyone I have not mentioned, hope you are ok too.
Well here comes the 8 day challenge and I am in the right mood to tackle it despite raging trots tonight. Still the anti-sick will soon cancel that out. I might have to be careful on the fry up though and stick to eggs and toast. I have ordered, yes I did, the top level stabber to be there for my appointment and hope he won’t fail me. Will tell you how it goes tomorrow
Hugs
Lily x
hiya all
Had my month check up which went okay, no problems to the eye but if I continue with the aches and pains might do some scans as terrified as had headaches and a stiff neck for about a week and Im always red when nervous but theres a red patch on my bad side at neck area so bit worried, think its all come to ahead as went to friends dads funeral today and just after my mam started crying, my aunt who’s go breast cancer and spread to liver has been told that she only has months, devasted. she had had numerous chemos but she was most recent on lapintab (god nos how its spelt) with some chemo but hasnt worked but hten today she gets a call saying her bloods are good so gona try just the lapintab on its own???!!!
Hi Lisa,
sorry to hear you have had so much going on. Funerals are nightmares for me even when I hardly know the person. If anyone cries near me, well they would have a job to get in first really, I am sobbing. I am not at all surprised that you would be anxious after that and thinking about your poor Aunt too. Did the doc comment on the red patch on your neck or was it just you concerned? If this is a normal thing for you I would not get tot worried now. He would have jumped on it , if he was concerned you know that. Glad that the month check up went ok. I have to say that scans do take away a lot of the worries about aches and pains for most people. I would keep having them if I was allowed to. I know things can change and they don’t spot tiny things but it made me feel much calmer as my imagination tends to go mad if I have anything wrong. Why don’t you just ask for one to settle you. I have read about how they are finding that some drugs work better alone and others work better in groups. There is a lot of research on that right now for secondaries. It sounds like they are still giving her options which is good so she still has a chance of some remission.
Sounds like a tough time again, mate, chin up and big hugs
Lily x
Thanks, red patch had merged into others when went but my neck is aching just above the area and have headaches and indegestion, what a twine eh, just in paranoid mode, fingers crossed nothing but mind working overdrive at minute as she said it shouldnt effect my neck.
Hope you are doing okay
xxxx
Hi,
just sitting thinking about more chemo tomorrow. Might have a bath to help me fall asleep. You have had this aching for so long I sort of feel that they would have found something if it was a real problem. There are lots of other ordinary things it could be. If I was that worried constantly, I would phone the BCN/onc and ask for a scan to know either way and most likely put your mind at rest. The othe route is through the GP as normal for problems or to go to a chirpractic who takes x rays there and then and see what they say.
Love
Lily x
Thanks, good luck for tomorrow and enjoy your bath, havent had one of those for ages, too much thinking time for me and then feel drowsy and could do with a shower by time I get out. Tried it with a glass of wine and a book but dont know how people manage to keep it dry! Of to watch hells kitchen in bed, tv in bed always makes me drop off!
Nearly done now xxx