Hi everyone, ha ha I loved the emotional tag and thought it was a cool feature i didn't even know we had. I must use it myself when the moment arrives. Carole its chilly her too but hoping the sun will be back and its not autumn already. It must be exciting waiting to hear about your new little GD. I hope she arrives on her own and doesn't need some help, so much nicer than the induction walk into the hospital. Having had a big family I found mine were all different and didn't follow a pattern really. I am curious to hear her name now.
Lisa how embarassing and painful to fall over. I hope it wan't terribly painful and throw those rotten shoes away now in case you break a bone next time. What was the insurance policy comment about? I wasn't sure. Only about a week until your holiday now so I bet you are busy trying to get evrything up to date at work before you go. Spa day was a lovely treat. We are up in London in a big spa hotel for Eds hen do in a few months and a night out in a club and lots of food and fun. Very excited about it. Before then I am seeing the dreamboys and I will be the oldest person there I am sure so will be very careful not to be anywhere near the end of the aisle to be safe. The girls got the tickets and one of them booked the front arggggh. Might not take my glasses so the view is a little blurred ha ha. Then next week going to a George Michael tribute concert and very excited about that too. Going with work so should be fun.
Nicky I bet you are popping around to help with that little chap as often as you can. Which side of the family does he take after? Hope he is settling a little. What a lovely thing to take your mind of appointments. Love to all Lily xx
Welcome back Lisa, sorry about your leg and hope it doesn't affect you on your break. I have no idea what happened with my emotional tag, hit the wrong button I think instead of a smiley
All for now xxx
Hi all, quick catch up before I bash on and aim to get earliest night, sorry for absence, work is sooo busy and have som Night time meetings and been on a course, ha fell in front of boss and leg black and blue just before my hols typical, ha weather was terrible and my wedges slipped on silver circles that were indicating the dropped kerb, happened twice at both sets of traffic lights, needless to say those won't be in my holiday case. Mam not feeling great with awful acid reflux well she hopes it is and had a bug so been at there's a bit, nieces birthday and sorting out for girls holiday... phew so finally logged on before off to bathe my still weird eye..... and what a time to log on....
Nicky , amazing news the name is lovely really cute and hope you've had a lovely day spoiling him if you managed to help out today. Hope treatment still going well.
carole, oh how long till your new arrival.? Oh and what happened with your post, says wanting emotional at the bottom.
Lily, are you back to routine at school, did you go for a different job at work??
well nothing interesting to report her, been so sad watching the news... right off to try and find the dreaded insurance policy online, the joys of the form filling... oh old boss bought me a lovely spa day at a local place that I've never had the spas as too much money, was lovely, me and friend went, was bliss, sat around reading, was fed and watered, facial, tucked up in a furry bed overlooking the woods and country and then some pool time and outdoor hot tub with a prosecco overlooking the gardens (and in heavy rain lol), bliss but been exhausted every since ha.
night all, will try and pop back in more often as missed the gossip...
What a lovely name Nicky for GS, he was a good healthy weight wasn't he? I hope that your daughter is recovering well from the experience of childbirth. I know it's a perfectly natural thing but it does take it out of you.
We are eagerly awaiting the arrival of new grandaughter, we know the name already but I'll surprise you when she arrives. All is well so far.
It has been a bit chilly over the weekend, definitely autumnal and despite our best efforts to keep the flies out, unfortunately they seem to find a way to get in as they don't like the cold either. Today is quite bright and sunny, after having overnight rain. I shouldn't complain considering what The Caribbean and Florida are going through.
YD will be here for only another couple of weeks, and then will head off to her final year of her Master's, and studying. Let's hope she will be able to find a decent job when she finishes. Still, will worry about that next year.
Mum is still finding the odd BB, the council are fumigating next week. She often complains of "just not feeling right", so I suggest she tries to eat, even if only a bit of cereal and to keep taking her drink supplements.
Well, my housework is calling love Carole xx
Hi everyone. Nicky I love the name. Funny that I mentioned William or a modern/current name!! We must have a psychic link going on. I like family traditions with names, we have a few but not everyone continues them. Always up to mum or dad. Who do you think he looks most like? Well how lovely to have the excuse to monopolise the little chap while helping them out. New babies can be hard work. Main thing is not to both get up, to take turns looking after them so you at least catch some sleep. My best sleeper from early on was the only one that was born in the day time. All my night born babies seemed to think that was getting up time every day and had to gradually move their clock round. Well congrats again and welcome to the Nanna club. What have toy decided to be called? Lily xx
Hi, thanks ladies. A very busy Friday for me just making sure family and friends knew plus of course visiting my lovely grandson before he came out from hospital. Sorry I realise I have given you this info already.
So the details, for Dr Lily: As you have done I'll give you his name once and then refer to him as GS or similar. His name is Quinn William (William being his dad's middle name and a family tradition). He weighed in at 7lb 3oz and was a week early. ED and her OH are v tired as the lovely little baby doesn't want to sleep much. I think we will be relieving them a bit today so they can have an hour or so catch up with sleep. I managed a long cuddle on Friday as I was at the hospital for about 3 hours, visiting then waiting for them to be discharged which took an age. Luckily they live only about 5 mins away so it will be easy to drop in and help out if they need it, which going on this mornings cry for help might be more often than we all thought!
Niw we just need to wait for Carole's news of her GDs arrival 😊
Congratulations Nicky that's wonderful news. Very glad to hear he arrived safely even if he did take his time. First labours!! It sounds very familiar, lots of hanging around and wondering if it will ever happen. He was early wasn't he? Do we have a name yet? What did he weigh? I love the details. I bet you can't wait to have a cuddle and spend some time getting to know him. Lovely news Love Lily xxx
A busy morning for me as I have been updating family and friends about the arrival of our new grandson 👶🏻. Born late last night so ED and GS are still in hospital making sure they are OK. EDs waters had broken on Weds morning so they gave her a chance for the labour to start naturally, she was already having contractions, or she had to go in yesterday morning to be induced. I think if it goes beyond 24 hours after the waters break but the baby isn't born both mother and baby need to be observed for about 12 hours for signs of infection so she won't be home until later this afternoon. Anyway I'm sure I'll hear all about it when I see her but not a quick labour from what I can tell. However they are both looking great (good old whatsapp for sending photos) and she is very happy, as is the new Daddy!
Will catch up over the weekend.
Hi all, really sorry I've been missing things hectic and been away with work. Will read and catch up tomorrow, chilled spa day treat so hopefully in a more chilled place and more time, catch up tomorrow xxxxxxx
Lily it sounds a good plan to get tough with some of the parents, I find it unbelievable that some parents take no interest in their children's education. I used to spend quite a bit of time with all mine doing homework and projects, and I was never a brain box. Hopeless at maths but good at English and some of the other subjects. The council refuse to fumigate the entire building, even though I've suggested it must be more cost effective than keep going to individual flats. They just won't have it and then they blamed my Mum for hiring a private fumigator!!!! I'm told they take a long time to get rid of, my sister has to wash everything in a 60 degree machine (impossible as some clothes you can only wash on a 30) and then double bag things up so the council can go in and spray her wardrobes, chest of drawers, bed etc etc. The problem is that Mum's flat is tiny and just doesn't have the space to have loads of bags for storage. Fortunately Mum hasn't been bitten. Your decorating sounds lovely. Wet cars in the morning are a sure sign that Autumn is here. Sorry to hear about the damage to ED car, hope everything is sorted out with it now.
Nicky you're busy decorating too, how is it coming along? I think I would rather be at home with workmen than doing all the rounds of chemo and appointments, I expect you are too. Not long now for both of us ha ha.
Well today is a monumental day, 5 years to the day of starting tamoxifen and today is the day of my last tablet. Don't you think it a bit strange that I had just enough tablets to take me to the exact anniversary? I think someone is telling me it is time to stop. I hope my body will bounce back to pre tamox, stiff joints no more and a bit of weight loss would be nice.
I had to take a urine spec to the laboratory as I think I have yet another urine infection. It takes 3 days to get the results but luckily I have a prescription of antibiotics already so will start to take them, if the results show a different AB will work then I will change. I'm exhausted as up and down to the loo for 2 nights has worn me out. I've also found out that the thyroxine tablet I take has changed components recently and thousands of people have reported vertigo, fatigue, memory loss and muscle cramps. All of which I have so I am asking my pharmacy if there is another brand I can take.
Our son and his GF are looking forward to the baby arriving, hopefully on time but we won't know. I have a box of baby bits and bobs for them as I've been collecting for months. As I won't be able to get over to see the newborn to begin with, Mr P is going to take it over at the weekend when he returns to work. He will be spending 2 weeks in Falmouth as his ferry goes into dry dock so basically he'll be having a working holiday lol.
That's all from me for now girls, take care everyone love Carole xx
P.S. the last long post I made somehow disappeared from my keyboard, so this time i've copied all the way through lol
Hello everyone. Thanks Nicky, actually our little girl was in the car and it hit ED's side first then skidded along to baby's side, whose window was wide open if anything had shot off! Amazingly there was no injury to them so it is a very big bill to sort the car out. Apparently she was distraught when they towed the car away and she is not allowed her old car seat either. She keeps telling us all that 'my car is broken' and wants it back. Funny that she would attach to it. The other driver has admitted blame and there was a witness so things will goes as well as they can but as you say, the innocent party often loses out. We will see as it is financed. They gave her a huge 7 seater van type replacement and she has refused to drive it so they are waiting for a smaller family size car. She is used to a camera to park and lots of gadgets and the replacement is old school despite being new. I winder if we will all lose the ability to do these skills in the future as hers parks itself too. Sorry to hear your daughter's car story. Just grit your teeth on the bathroom work as I am sure it will be fab and worth it in the end. That's what i tell myself. I hvae had a ceramic sink put in this week and new worktops so we have had to empty the kitchen. Crikey there was a lot in the cupboards!! I managed to be at work so an unsuspecting Victor got it ha ha. He asked me if I knew exactly how many cleaning products I had and he had lined them all up to prove his point lol. He siad he wouldn't mind if I actually used them occasionally ha ha ha. Lovely and exciting waiting for baby. You wait until she tells you it has started, you will not know what to do with yourself!! Yes your whole world changes when it arrives but for the better and it sound slike she is going to be a doting mum. Carole don't forget to let us know when anything happens with yiour new grandchild too. Hope she is keeping well and has an easy labour. Its not the first is it? Lisa how long until your girly trip? Llovely time of year to get another break in. Hugs Lily xx
Sorry to hear about your daughter's accident Lily. Honestly you do look at some drivers, whatever their age, and think they are not concentrating. Was little miss in the car at the time? If so it would have been extra scary. Glad that no-one was hurt but I know after the event a lot of bruising can come out as you're not braced for the impact when its something you've not been able to anticipate. Hope it all works out OK with the car as well, I've also heard of stories where the driver who wasnt at fault ends up worse off financially. In fact that has happened to YD. Her car was written off a few years ago when someone went into the back of her at traffic lights. She was able to get a new car on finance but after about 18 months when she moved to Putney she didnt need a car but also couldnt afford the payments as her rent was London rates so she went to sell it. Lost alot of money, all because some idiot didnt stop at a red light. The car would have gone on for years as well as it wasnt very old, just not worth repairing. Anyway hope there's no issues like this for your daughter.
As to getting up early, yuk! I'm currently having to get up each day before 7 to be ready in time to let the builders and plumbers in. All 3 of us in the house (me, OH and YD) are having to use the one bathroom at the moment and as we all have to get in and out in an hour its a bit of a wake up call. Normally I wait until they've gone to work to keep out of the way but as I'm the one that has to make sure everrything is covered with dust sheets and moved out of the way each morning I have to jump into the shower early. Couldnt quite manage 6.10 though!
So, although I've had a week away from medical stuff it's been a week staying in all the time to make sure I'm generally around with the workmen here. Hope they get it all done in a day or two so I get some time to do things I want/need to do before heading back onto the chemo ward.
ED is getting impatient now but I don't think she realises she should relish these days with no full responsibility of a tiny baby! I found the one thing that changed massively when you have a baby is the fact you can't just act on the spur of the moment, you have to wait, or spend time getting things ready, baby included, takes quite a while before you can grab things and go! Will update on any news obviously.
Lisa and Carole, hope things are OK with you both?
Hello, I was thinking of everyone who would still be asleep when my alarm rudely awoke me at 6.10 this morning.I tried getting up at 7 yesterday to break me in but no use, I was still out for the count and probably would have slept until 9 if left undisturbed. The car seems to be a soggy dripping mess every morning, which I have missed as the sun soon clears it, but not on early work mornings, so got my squeegy wiper out already to clear windows . Always my first sign that summer is almost gone boo. Victor has been off, which he does every year, maybe to get me back for long holidays when he has to work. I haven't updated you, the bedroom is so nice and it has been exciting to come home each day and find another part completed. The room is all very peaceful in muted pale beige and cream, which has made it look much bigger. New very squashy soft pale carpet, wardrobe doors all painted a distressed cream to match other furniture and merchant chest. wallpaper is a pale beige with a paler off white cow parsley spray all over it. Love weeds!! I might have to abandon the curtains which are a bit too bright cream with a small gold pattern on. I think the pale room is making them look brighter. Alternative is to have a bed throw that picks up the gold, well just a little.Don't want it to look like Vegas! So many things went wrong its frustrating. One of the workmen had chipped a chunk off the merchant chest, right on the side that you look at, no idea who did it. The radiator leaked and came through the ceiling and spoilt another room slightly. Victor snapped the phone cable off so no phone in there. I pulled the thread to pleat the curtains and both ends came free so I spent quite a bit of time tonight with a needle trying to thread all 3 of the strings through about 3 feet of tape heading so i could pleat them to the right width. Mum has lost the plot with building work next door and is kicking out and being mean but worst off all, someone smashed into eds car on the side our little pink sits. They are ok but the idiot got every panel and has dented both wheels and the chassis' bent so not looking good for the car. They were all completely fine so must be a strong car on the sides. Always a worry with financed cars as you hear about people losing cars and still owing money. Main thing is they were all fine except her partner being furious that they had endangered his baby, just drove out a side road straight into them. So a very eventful week of good and bad things. Hoping for a more peaceful time next week.
Nick enjoy your lovely week away from poison darts and vampires. Do you have any plans? Nice to have ed around to go out with too. Not long now . Have they got any names or will it be a surprise? I am always curious to see if people will pick a traditional William type name or one of the current names ecah generation likes. I like both. Carole are you gettign excited too? Do they have any names in mind or do they keep you guessing until the end? Poor you two and the eyelash/brow problems. I don't think I would bother on an ordinary day either. Its still you Nick hope your workmen have gone and left you inpeace now. The smell of paint has been horrible but he bought quick drying gloss and it has gone much quicker than usual. Lisa are you in a decorating mood again yet? or has the kitchen calmed you down for a while? That was a long job but I bet it is lovely now. Well better buzz off to try out the new room for the first time. Enjoy your weekend Lily xx
Hope all is well with you and yours?
Ive just had the second part of my 7th cycle of chemo so looking forward to a week or so away from hospital appointments etc. The only type of medical event I will be looking forward to is of course EDs baby arriving, but who knows when that will be? How is your daughter (in law?) doing Carole? Sorry, I'm sure it's your DIL but honestly have a brain like a sieve. As to the lashes etc I'm in complete agreement with you and how awful that yours have never returned. Is that completely or just they are not very long or are a bit thin? I'll have to see what happens with mine after this chemo is over. I literally have none and that makes it impossible to use the implant type of semi permanent ones that Lily mentioned. eD uses them all the time but I think they anchor them to your own lashes and they fall out as and when your natural lashes do. I've got nothing to anchor them to! I've stopped wearing the false ones everyday and use eyeliner and then put the lashes on when I'm seeing people or going out - otherwise it's an expensive 'habit' as they inevitably get a bit mis shapen over a couple of uses so they are not able to be used for that long each pair. I look out for offer some in Boots and Suoerdrug and get them then.
Lily, poor you going back in August, pretty much unheard of in these parts as they never seem to go back before September but, as you say, it's not the kids, just the teachers. Our kids are still off until Monday so we're expecting busier roads as per usual then. We live quite near to the local village schools so get a lot more traffic through our quiet street and lots of parents walking their children to school, all with no paths where we are as the part we live in is very old in parts so there was no real traffic when the houses were built and therefore no need for pavements. I hope your bedroom is coming together and you can see the light at the end of the tunnel. We have builders and plumbers in again as we are changing around our en suite now. Ahhhh. Could do without the constant drilling, electric saws, dust and water being turned off but it's something we wanted to do since we moved in so I'm gritting my teeth and putting up with it. We are so pleased with the other bathroom that was done I'm sure this one will be equally as good and therefore make all of our days start a bit brighter than they have done with the previous bathrooms. Don't get me wrong, they were new and modern but not how we wanted them space-wise and also no natural light so we are also putting in a couple more skylight windows which should make a lot of difference.
How are you doing Lisa? And how is the weight loss going? Hope you are still making progress and noticing the difference. And how is work? Are things settling down a bit? Or getting worse? Let's hope not with the last bit!
No other news from me for now.
Hi everyone, how are you all? I am trying to stretch out my last days of summer holiday as we go back in August!!! So disappointing but will get some non pupil days so at least I can be half asleep and ease in gently. I have some very difficult classes in the coming year, so this is a warning that I may be moaning a lot. You usually get one class that is much harder than others but I am shouldering a much bigger load this time. I like the challenge and I am really patient but kids today can sometimes really push the buttons and you have to bring in good results or the teacher gets the blame. No allowance made for having kids who just don't care and if that combines with parents who don't care about education either then there is nowhere much to go unless you snake charm them. I'll have a try. So I am planning clear instructions about what I expect to happen, clear punishments for if they don't happen and then very long boring talks through lunch for anyone who needs to have a repeat, every week if necessary. Will let you know how it works out!
Nick, I hope this week has gone to plan and you must be heading towards the end of this first set of doses on this regime. What month will they review everything again? I am hoping you can have some good period of time on this drug as it seems to have been reasonably tolerable and give you less days afterwards of side effects. It would also give you extra time to spend oohing over your grandson when he arrives.
Carole you can get semi permanent eye lashes now that last much longer and they attach them for you. Might be worth while if you have some events to attend. The eyebrows can be tattooed as well and last about a year and not too expensive. If you feel like treating yourself. I did wonder about the eyelashes as mine are nowhere near as thick after chemo. I am thankful they are hanging on after hearing yours have gone permanently. I am rather lazy, in my later years about anything that takes time and bother. Oh no not the dratted bed bugs again! Were you very careful not to take them home when you visited? My friend brought them back from an Italian holiday after leaving theri suitcase on the floor and she had to have the whole house fumigated several times and throw the bed and bedding away to eventually clear them. Your mum is much too old to cope. Can they move her because of this? Mum has fluid issues too so we have slightly raised the end of her bed by putting a thick towel under the mattress. Its not much of a height but the garvity overnight definitely makes them more comfortable, plus the electric footrest on her chair during the day. Lisa I have taken a leaf out of your book and got some nice evenings booked. Going to see a George Michael tribute act, I do love the songs and intend to sing along ha ha. We are also going to see the dream boys and I am terrified as they have booked right near the front. I am going to make sure I am right in the midsdle and can't get out, just in case they are looking for an oldie. Hopefully not. But after being dragged out to have one sit on my lap and pretend to do saucy things last time I went to a hen do, I have no intention of getting caught again!! We also have Eds hen do, which this time will not involve a stripper she says. We had booked up and now the plans have fallen through so looking for a London trip that will be fun. Any ideas? School results for GCSEs today and I was really pleased with all my kids results. They ranged from level 5 to some brilliant level 8s, so brownie points for me at work. Pretty pleased with them as they are not the top set but they have been lovely and most worked really hard. Homework in from everyone every week, it makes the difference. On the decorating front I found some lovely wallpaper and they are starting next week. Bad news is trying to empty the room! Ceiling is plastered and I bought a huge rattan style off white lampshade, sort of clementine shape that throws lovely patterns all over the ceining through the gaps in the wicker. New bedside lamps. Throwing away the headboard too and ordered a cream metal ornate new one that will be annoying to lean on but lovely to look at! Still waiting to decide about the carpet as a lot of cream items in the room. Its been so long since we decorated i have got really excited about buying things. Then went out and bought 2 pairs of trousers and 2 dresses I fell in love with, so wrecked the bank balance rather this month. So our next little trip will hang over until half term while Victor recovers ha ha. Hugs. Lily xxx
Hi all, I hope this finds you all ok and coping with whatever life throws at you.
Nicky that sounds good, that wearing the cold cap is keeping your hair intact, do you wear the cold gloves too? Do you find the cap difficult to wear? I still have no eyebrows or eyelashes after 9 years. How do you find putting on the false eyelashes? I have worn them in the past but as I don't go out much there isn't much point when just staying at home. I always found them very fiddly. It must have been very exciting watching the athletics live. I enjoyed them on the television.
Lily the weather went from being very hot, to quite a chilly 15 degrees overnight last week but is back to hot now and I've been able to use the pool, although it's still a bit too cold for my preference. Are you enjoying your time off, can you manage to do some things that you like apart from baby minding of course lol. Are you back at work next week?
Lisa, don't worry about your accent, I managed to work out what you wanted to say. How is the diet going have you lost any more? Bet you can't wait for your next trip? I always liked Majorca.
I've been busy with Mum and her council again as she has bed bugs but this time they are all over her flat! The council have contacted pest control but goodness knows how long she will have to wait. In the meantime she's had a private fumigator in, who admitted to Mum that several of the flats where Mum lives have had these bugs. Makes me want to scratch just thinking about it. She's in quite low spirits at the best of times. Her feet and legs have been swollen with fluid for months and despite being on water tablets it doesn't seem to get better. We (my sister and I) have been told it's because she has vascular dementia and heart disease, consequently her blood and oxygen is not being pumped around like it should. I suppose at nearly 91 years of age nothing can be done.
I'm off to roll out my pastry now, I'm intending to make a sausage plait with apple and cider - bet it won't turn out quite like that lol.
Take care, love Carole xx
Hi everyone. Crikey that North/South language divide too, especially when mixed with text talk and prosecco Lisa ha ha. Mind you that's when we hear more from you, so don't be discouraged by our teasing you! We love you just how you are. I've often wondered how students get marked for English language GCSEs in areas with strong dialects?? Are they allowed to use regional terms like wee lassie? I was talking to a lady while out today, who was teaching her grandaughter to say wee rather than little. It did not make any sense to my little pink for whom wee means find the potty bloody quick or Next is going to have a minor flood. Don't the Scots use the term wee for going to the loo?? I am curious now. Lisa are you far enough North to answer this one? I loved the idea of your dad, arms folded outside the surgery 30 minutes before they open and the receptionists saying oh crikey he's out there again and you getting an appointment instantly ha ha. I wish my dad was still here, he would have done that for me too. Shame the US holiday changed but you know you will still love it. The big apple oooh I want to go back, fantastic trip to add in. Enjoy Palma too and choose yourself a nice roomy who sleeps the same amount as you and who you don't mind seeing you semi naked. I have to share a room for Eds hen do and they are trying to get me to share with a relative on the other side who is very nice but I'm a bit scared. I was told don't worry she snores and farts a lot!!!!! Well does that sound like a roomy to pick??? I wanted to go with one of my girls who will forgive me anything I do!! I was hoping to see a bit of the eclipse but ten tons of cloud here so no chance. Carole did you have any luck? How's the weather with you? Nicky how lovely that ED is on maternity leave now, although that's when I started to consider labour, oooooh. So much better to be ignorant first go in my opinion and after that you make an informed choice but it improves over pregnancies for most folk. I heard that number 5 is like number 1 and hung my boots up after number 4. Think by then Victor was nearly having a breakdown anyway when left on his own with them ha ha. Nicky I am surprised about the lashes and brows because mine stayed throughout and I always attributed that to the cold cap. Clearly not always the case. False lashes are really good now aren't they, did you think about the semi permanent ones? ED has had her eyebrows tatooed as hers are so thin she has to use pencil every day. They are amazing and people all want theirs done after seeing how they look. Might not be allowed while on treatment though, thinking about needles. Maybe after this course if they are slower coming back than you would like. i went on a look good feel good course and they showed us how to do great brows. Have you ever been on one? Lots of lovely free gifts, even Chanel on ours. Good luck with your dose this week and hope you feel well enough for the carfest. I hadn't heard of it so looked it up and note it is right in your area so should be a good day out without too much travelling time. We are just emptying the town of the V festival campers so no pounding beat to rock me off to sleep tonight. I have heard that Jay Z and Pink put on good shows, son went to see Banksy and loved it. Had to have the day off work to recover so must have been good night dancing to his music. I watched them going out in a mixture of girls in spangly scratchy hot pants and braless tops and the blokes in comfy shorts, walking boots, bandanas and waterproof jackets and decided its not a fair world!! Hugs Lily xxx
Goodness Lisa, that took a lot of translating ha ha!! I'm almost fluent in Cumbrian by now but I got thrown in a couple of places. Only joking, I don't even try to use my phone to post on here and I have to watch out for auto corrections or (un)preditable spellings.
Glad you have another big trip to look forward to but what a shame that you have to spend 3 days in NYC ;-)
Enjoy Palma Niova, I first went there when it was quite a sleepy town in the 70's, our first holiday abroad, but it has since been engulfed by Magalluf which was fairly 'British' even then. Having said that we (OH) and I have enjoyed our most recent trips to Majorca and especially the city, Palma. Lots of good transport using buses so you can easily visit for a night out and try the tapas bars - very pretty at night. Weather should still be quite toasty I think as southern parts of Spain (and Balearics) don't cool down till about November.
Hope this gives you light at the end of the tunnel to look forward to as work sounds very busy with lots of changes going on.
Cold cap is keeping the hair from falling out any more and it is growing and, dare I say it, covering the areas where it did fall out/thin. Only trouble is that this chemo has made all my eyelashes and brows fall out. This has never happened before, I've always been able to keep quite a lot of the hair there and I've only just had the same number of cycles as the oither chemios I've had that did make all my head hair fall out. Very strange and I've resorted to false eyelashes - which do look completely natural by the way as I've not gone over the top with the ones I use day to day - but do have a set of party lashes :-)
Nothing else to report other than I start round 7 of the chemo this week and will try to stay awake at Carfest on Friday as we have day tickets - but ordered them last year (as with the athletics) ages before I even knew I'd be on this chemo.
Hi all, thought ice post tonight when I have just cracked the wine open and not put to on yet because once that happens I'm tired and sick of looking at computers..
not much news news from me, still have a sore eye which is blurry and gunk your, goes through stages but I've got something called bletheritis so need to take more care and get a routine sorted and see if helps. Headaches eased off though, think they are stress related.
Work is manic, non stop and huge amount of learning, all our governance arrangement weren't up to scratch so working with consultant and involved in that but comms still aren't great so it's all a bit strange and I'm trying to do co. Secretary and health and safety and policies so I think they recognise that needs to change as too much. Boss official retires this week but been on gardening leave for few months so off to see him on Monday.
hols , well you know me love a good planning session but trying to please 9 friends resulted in chaos esp. as we all haven't been away together for about 15 years... trashy Palma nova here we come but hotel seems nice and 4 nights all inclusive so it may get load and messy, 21st September so hope the weather holds out..
next years is booked too, all excited having a sort of year off from Florida, so decided vegas, California and Hollywood, all ideas planned and brother and co. Decided the wouldmquite like to come to Florida with us again whilst my niece is obsessed with with Harry Potter, so it's Florida now and at Easter so most expensive time but found a cheaper flight back via New York so 3 nights in New York has been added to the hols 😘😘😘😘
carole, still jeleous of your weather and keep us updated re when you can plan visits, love the smell of new born babies but they are so fragile scare me lol..... spesh when people are watching how I handle them as not a parent.
nicky, glad you've got some days off from treatment, how is the cold cap working for you, I never bothered and always wondered if I should have, when I was on tax hair started growing back really quickly. Nice that your daughter isn't finishing work and I bet you are really excited about the new arrival, lots of hugs and cuddles. So where are you planning for next trip, love your trips...
lily, how was your hols, thinkmive missed a chunk of message she on here? Glad your back on line too... sound roughy still with your mum and brother not helping much, always falls to one I think.... have you anymore plans for the school hols? Weather has been awful here.
well laughing at the doctors appointments, ours have to know your ill 3 weeks in advance to get an appointment, doesn't help when it takes 4 times to get your bloods lol. You can get an appointment on the day but only save 3 and phone is constantly engaged at 8am when open so dad usually goes down and stands outside at 7.30am, break through last week, get a text to say now an app for our doctors and can book appointments, couldn't not find any, text them, not working yet but you can use it to write a reminder down when prescription due then phone them to order it..... rocket science eh lol.
well off for my wine, it is Friday and my fix of pretty little liars as finished prison break and lucifer.... no lap top this week either so weekend void of work.
have a lovely weekend all, sorry for typos and very long post, not even rereading it, but hey you like the challenge of working out what I mean....... good job it doesn't need come with a Cumbrian accent.
Morning from a dull and damp UK! Nothing like as nice as you have Carole and not a holiday in sight for me for a while. Where are you planning Lisa? Hope work isn't too manic, especially with the changes that have been made and that you are coping OK and not getting stressed. None of us need stress! But we do all seem to get it however hard we might try.
Ive been enjoying my 10 days away from hospitals and just pottering away, no real plans but getting on with some of the things that we all put off. Weather was Ok yesterday but in for a few wet days it seems - always in the school holidays! You must hate it Lily, the one time you want to be out with the littlies and have the time, the heavens open although, as you say, it's not cold, just a bit muggy when it's overcast. No doubt a nice September if previous years are to go by.
ED finished work, at long last, yesterday which will be good as she has a bit of a drive when she has to go into the office and getting a bit achey doing that. So, about a month to go which I hope she gets to enjoy and baby doesn't arrive early. I had 2 weeks off, with her, before being admitted to hospital and not coming out until 3 weeks later having had a very prem baby so I never did get that time off to myself before becoming a Mum as second time around you of course have a toddler in tow. Carole, it is difficult to plan isn't it, especially when travel is involved. We're the same trying to have a late holiday but not booking anything until we know when the baby has arrived and although I'm sure I will want to see him a lot OH and I still want our break! For you I expect it will depend on how close you are to your DIL. It can be a bit difficult whereas with your own family you know exactly where you stand and they know as well that they can say or tell you things without causing offence - well, let's hope so! Luckily ED loves about 5 mins away so I can pop in as much as she wants or needs without committing to set times. Also her OH is off for quite a while after the birth (how on earth did WE all cope before any form of paternity leave was given?) so I will be giving them space to become a family but of course on hand for advice and no doubt help! Well, that's the plan.
Anyway better get started on my list for today, I'd never remember any of it if I didn't write it down.
Hi everyone. I have been having IT problems after a windows 10 update deleted everything under the sun on here. I hate computers. Victor has been flat out trying to get it back but we lost edge for now, so back on good old internet explorer. Well I was annoyed at first but I have old favourites logged on there and found that treatment survival calculator someone sent us years/forums ago so I have been playing around with it, to see if another treatment would have changed anything. Do you remember you can put in all your dx details and it gives you bar charts and pictograms. then you can change the years, etc. You are supposed to be a Dr but hey you call me Dr Lily so I figured I had sufficient experience to cope, fascinating. Anyway i am back! Lisa are you planning another holiday, if yes where to? Carole I am trying to empathise and I was nearly there until you mentioned 33C and then i got far too jealous. Its just cloudy here but still in t shirts and shorts. Are you in your pool again yet? I think the when to visit the baby depends on the person/couple. If its your daughte in law tread very carefully. If its your daughter I think you will already know. Mine wanted me there as soon as they were born and then said come any time but ring first in case other visitors or midwife visit. All of their partners would be trying to get me doing nappies instead of them but some folk are more keen to close rank and have some alone time or are anxious about letting people watch until they feel confident. First time breast feeders need a huge amount of support as they have that wait for the milk and then when it comes they have a blues day and cry a lot. If its not a first then its already a busy house and noisy so next babies just slot into the noise from day 1. I think that's why a lot are better sleepers. I get very excited about babies int he family so I am pleased you both have such happy exciting times ahead. We have the wedding this year and I think if things go to plan we might see more babies after that. We will see what they decide. Nick yes I hat having to deal with dr surgeries, so stressful but what's the point when they are supposed to be helping you stay healthy!! Ours have put a new screen up as you could literally hear everything they said about other patients. You don't want the world to know you are booking a smear test really. I found out they had forgotten me and I am 15 months overdue, something I am not happy about. That mad eme wonder when I am due a mammo and I can't remember how oftern you get called, I am on the national register for all women now, kicked off the more frequent list despite my protestations. Yes we had a missed appointment sign and it went down dramatically after that. Ridiculous not to cancel. My brother is not in my good books as he left his dog with mum and I had to do an second trip there tonight to let it out as she felt ill and her speech went crazy today. It happens occasionally but there is always the worry its another biggy so I went. Yes I agree with the funding argument and its a good thing you are under the Marsden wing. Are your 2ndary friends under there too or does it have to be an unusual case unless you live in the area? How are you getting on with the cold cap? Has it worked for you? I used to have a scarf as I used to hate little bits of ice sliding down my neck at the start and end. They have probably updated the models by now though. Fabtastic about the athletic seats. 2 of my friends went to see Bolt and Mo, I haven't seen them to ask if it was very emotional in the arena. I watched at home, mixed emotions. Hope you manage to get a break some time but will you even want to go when the little chap arrives?? Have you decided what you want to be called by your grandson? Hugs to all. Lily xx
Hi all, will have a catch up tomorrow. Sorry been manic with work and hols plans. Hope everyone well xxx
I've been quiet as I don't have much news to report. The weather has been crazy, the last 3 days of last week were cold and very autumnal, one day I even lit the wood fire as sitting around made me feel very cold. However, today is lovely and sunny again and expected to go to 33 degrees. The problem with the swimming pool is that it needs around 3 days of that temperature to reach a nice warm 26 degrees, which is just right for swimming but with temperature keep upping and downing, it is not reaching a warm enough temp to swim.
Lily I bet you are lost for words with your brother's actions! Mine is pretty much the same. As for the doctors, well that seems ridiculous how your Mum was treated, my Mum is always complaining about her doctors surgery so perhaps her complaints are justified if your Mum is anything to go by.
Nicky I know what you mean about a baby arriving, no one knows exactly when it will be. I would like to get a flight booked to get over to see them, but first must allow her Mum to spend time with the baby so will have to take a step back until our grandaughter is probably a few weeks old. I love newborns!!
Hope everyone is ok? Signing out for now love Carole xx
What a bloody shambles Lily, good job you weren't being checked out for high BP as I expect it really was through the roof. Aren't receptionists the gate keeper? Trying to keep Drs and patients separated! I must admit I hear a lot of horror stories about how difficult it is to get appointments but our GP surgery seems to be able to fit you in fairly quickly either as a non urgent appointment or the same day if it is urgent but you don't have to phone as soon as they open to get an appointment. They run a phone appointment service which used to annoy me but does help cutting down the wasted appointment time that some patients would have taken up when all they need to do is talk to the Dr to ascertain if it's urgent or not. Also our surgery publishes its number of missed appointments each month and I'd like to give a piece of my mind to all those patients who couldn't be bothered to let them know they wouldn't be coming to their appointment.
As to your brother, well, best left for you to deal with him but I no wonder you were/are fuming.
You asked about self funding, well, yes I can but I have no I idea of the costs involved. Our chemo unit is happy to treat me if I did do this. However unlike primary BC it's an ongoing treatment rather than a fixed number of cycles so it could really stretch us financially. I would be able to get the same drugs on the NHS at the Marsden however, as part of the trials they run, so for the cost of petrol and parking plus more travel time, I think that's the way to go.
I am now on my 10 days sabbatical, ha ha. Just a gap in between cycles. All went very smoothly this Wednesday so much so I walked down the corridor towards the chemo ward, shown my seat and immediately one of the nurses was there with the portacath trolley to get me hooked up. Cold cap on and ready to go. Just as well as we were off that evening to watch the world athletics - yes, the only night it poured down but you don't know that a year in advance when you order your tickets! We had seats way up in the gods so went all the way up loads of steps to end up not finding them and annoying lots of people already in their seats as we shuffled along looking for them. Then went all the way back down again to speak to the volunteer who had said where they were. She went off for ages to speak to someone and we were getting a bit impatient waiting around when things were obviously going on inside the track. Anyway she comes back with the team leader who had some special seats we could have instead and we ended up around the other side of the stadium right in front of the podium on the home straight!!! Fantastic seats and so close to the action, well worth going up there for. Luckily all the seats are under cover so we didn't get wet watching, just traipsing back and forward from the station. We stayed up there in one of the budget hotels which was a good move as getting back home that late at night would have been a pain. So, a little mini break, but not a glimpse of sun anywhere!
Carole, yes, wouldn't that be amazing! ED is due 14th but, as we have learnt only about 5% of first borns come on their due date. All this is of course lovely but it does scupper us for our usual late summer holiday! Can't book for 2 weeks beforehand in case she's early and can't book for 2 weeks after in case she's late. Coupled with the likelihood of me changing treatments around the same time which will involve me having even more appointments I'm not sure we'll even get away for some late sun. If we did have a glorious September weather wise we could of course stay in the UK which isn't such a problem, it's just if we go abroad. And it's not just me wishing for some relaxing time away from hospitals etc it's also OH who needs a break from his job which is why we usually do a few shorter breaks earlier in the year, not so much in the school holidays (did too much of that when the girls were at school!) and then go away later.
Anyway enough of my moaning, have a good weekend and hope the sun shines even if the temperature is a bit chilly!
Hi everyone, how are you this week? I have been very puzzled by our dreadful weather, even hailstones earlier this week, when MD was on the SE coast and was sending me snaps of blue skies and them on the beach. Bizarre.I feel quite chilly in the evenings, not sure if its just me or the temperature. I have been furious with my brother who I left in charge of the oldies for my 7 annual days off, pre-booked with him 6 months ahead so one of us is available for a crisis. So I was not impressed when YD told me that he had flown out the country while I was still away and mum had fallen. I also got 4 calls about my other oldy with a flood and then no power. He told me he made a mistake and I told him I had said a lot of very rude things about him, leaving my kids to have sort everyone out. Hmmm and now he has gone again on holiday again. Grrrrrr. It has taken me this long to be able to type about it without sending my bp through the roof. Had to take mum to the dr again today. We were left waiting for ages so I enquired why and was told we were 90 minutes early. I said I don't think so, it was definitely agreed. Receptionist said she would email the dr and see if we could be seen early, then waved yes. When we got in there we had been sent to the wrong dr to see a lady with the same surname. Even the dr couldn't get the receptionist to answer the phone to sort it out (no surprise there). So she went off to sort it out and told us we had now missed our appointment because they hadn't logges us as arriving. Mum was hysterical so there was no getting rid of us as she said don't bother with me you clearly don't want to see me. I might as well be dead! So we were senn and came out with antibiotics, so clearly that's how you get them these days ha ha. As we went out the 97 year old lady was trotting in and fortunately got her appointment. The receptioinist said what's the chance of 2 people with the same surname having an appointment on the same day? I didn't trust myself to respond and be polite. Then they said your mum needs a review and can't have any more prescriptions until it is done. When can i bring her in I said? Sorry we are booked up 4 weeks ahead and don't have any appointments for you, they replied. You will have to ring at 8am every day and see if you can get an on the day appointment. I was speechless. Too many patients and not enough doctors. What a rubbish service.
On a much more pleasant matter it would be sweet if they arrived on the same day. I hope both mums to be are keeping well. I see the bad weather is with you too Carole, any improvement yet? Nick how are you doing this week? Lisa how are you? Hooray the decorating plans are underway with a plastere booked to skim the ceiling and hopefully get rid of an annoying crack. Might fill it with the receptionist Lily xx
Welcome home Lily, goodness I bet that week went quick for you, like Nicky I thought you'd be away a bit longer and didn't realise it was a week already. Crete sounds interesting, was it very hot? The ancient site of Lato certainly sounds interesting, and I remember writing about Knossos when I used to do the travel guides. It seems as though you've had plenty of historical and mythological sites to visit, how lovely. Now back to reality!
Nicky and Lisa, how are you both doing? Nicky wouldn't it be funny if your grandson is born on the same day as our grandaughter?
Not much news from me, things are very quiet here. Weather changeable since yesterday and we had a fantastic thunderstorm overnight. In some ways it is nice to be cooler at only 23 degrees.
Signing off now, take care everyone xxx
Hi everyone, hope you are all ok. Yes it was a good place to visit and probably helpful to only get to 32C otherwise we would never have managed long in those big sun trap archeological sites. You know what I mean Carole! Pompei is much bigger. I need to work on keeping my tan moisturised because there is not enough sun here to top it up. I have had to look out jumpers, cardigans and socks for the evenings as feeling a bit chilly. I think next week is supposed to be warmer, fingers crossed. Its so annoying if it warms in September when I go back to work. Nick I'm sorry to hear about the peripheral neuropathy is starting and good plan to mention it, so a decision can be made before you get left with worse effects. Although I know you will be keen to complete the full course if you can. I guess they will weigh up the pros and cons of each scenario first and then advise you. You have done really well to get through 6 double doses. I remember struggling a bit in the later ones as they just go on but it was the blood tests and wasted time that got me most. Its encouraging to hear about these ladies breaking all the rules and keeping going on treatments. Good for them. It sounds like you have a lot of other options, should you need them, which must be reassuring to hear. then there are different combinations with the ones you have already had. That's without the new ones coming in all the time. I don't know if your unit/onc would oblige but my onc always said I could get a drug from anywhere privately if I had the means to pay, if not given on NHS and he would do the rest. Its big money though but is worth looking into and finding out more if faslodex becomes something you want to try. It annoys me that people can't just have anything that would help them.It shouldn't come down to money grrr. Yes I always understood that my low hormone figures meant that the tablets were not going to be as effective for me. Glad that yours are high to give you greater effectiveness. it will be lovely to have your little grandson to coo and fuss over. Is he due early September just so I know when to start a countdown . I have to say it is the most anxious time when daughters go into labour, worse than doing it yourself, not that i thought that was possible at the time! I think everyone is different about what help they want and also it depends on their labour and confidence. Ifthey have spent much time regularly around new babies they already have a lot of knowledge and confidence, compared to someone who hasn't. Victor had never even held a babyso he was a complete nervous wreck! I bought all of mine a couple of books in their latestages of pregnancy and they found them really helpful, both to plan ahead what to expect and also to look things up when they were having an anxious moment and wanted to know if something was normal. What an exciting time, I love it when babies are due and the tiny new babies are one of my favourite parts. It is potty training non-stop here with all 3 of our youngest ones attempting to be dry. They were born in the same year so everyone takes a potty wherever we go. They all like their own one too. Our little pink one has to go commando as she can only stay dry if wearing no pants or nappies. Once one goes, they all start and everyone wants to wee ha ha. At last I am getting going on decorating again after receiving a large tax refund. The bullies would not believe me and over taxed me for the whole year. I am getting our bedroom ceining replastered to get rid of a persistent crack. Hope it works if they tape it. Anyone had any success with this method? Then I need to go to choose wallpaper and decide on a colour theme. i think I will just see what wallpaper I fall in love with and decide the colour scheme from that. Also changing the carpet which is the original from when we moved in and i didn't much like it then, so well overdue for the skip! Have a good week. Good luck with the next dose Nick. Lily xx
HiLily and welcome home, I had expected you to be back next week but I know you said it's difficult for Victor to get so much time off now he's doing his own thing. Wow, you packed a lot in! I think I would have just sunbathed all week ha ha. Interestingly the real heat wave is missing parts of Greece and hitting Southern Europe more so you orobably got away a bit lightly than some. Anyway you're back now to enjoy seeing the family for the rest of the holidays which is good. Very fascinating about the sights (sites?) you visited in Crete, I used to live reading the stories of Greek Mythology when I was younger but unfortunately haven't remembered all the gods and their attributes although everyone must have heard of Hercules.
Yes, I'm on cycle 6 at the moment, second dose next week. I will continue with the GCSF injections but not on such a regime, just enough to boost the but not suffer the knock on effects. Although I've not had peripheral neuropathy on any of the other chemo's I've had that lost it I do think it's just coming on now, in fact I mentioned it to OH the other day. I will let my onc know when I next see him but hopefully be able to continue through to the 8 cycles that has been suggested. Funnily enough there is another lady on this regime who has just done her 17th cycle! The longest I've ever heard and most oncs don't prescribe for as long so presumably she copes well with it. If I go onto a trail it will be at the Marsden, our local hospital is not a research one so they don't run trials. It will be a faff having to travel there but I feel more positive and strong than I did earlier in the year when j was about to embark on one so mentally I hope it puts me in a good place. Also I was chatting to my own onc and asked him what he would do next (as I can't get faslodex locally as its not NICE listed) and he said there were other chemo's still available and I had also forgotten I haven't has all the hormones (yet!). I am 8/8 ER and 6/8 PR which is important as I read many years ago that you respond better to hormone treatment if you are highly PR as well as ER+.
Enough about me!
Lisa - well done you with the weight loss. I have to admit I couldn't understand what you had written and just thought it was one of you little expressions ha ha. Thank you Carole for interpreting! Keep at it as its always difficult to get the weight to start coming off but once it does it gives you more motivation to keep at it.
Carole- way too hot for me! Keep cooling off in the pool. Sorry to hear about the leg cramps, ED suffers with restless legs and loses a lot of sleep which doesn't help. Have you had certain mineral elements tested in your bloods, like zinc and potassium? I'm sure I've read that taking supplements of these types of things can help with cramping.
Well, we're just going about our usual stuff, no holidays now until after the baby (boy) arrives in September. Hoping to go a way afterwards but will want to be around to help out a but afterwards as wel, if needed. I was saying to OH that I was pretty much on my own, as most of us were with our own baby's, as he didn't have paternity leave, just a couple of days off. So I'm sure she will manage when he OH is off and they need to have their own time together, not have the MIL poking her nose in!
Hi everyone, oh how sad to be home and my holiday over but lively to see all the family as I miss the little ones and wonder what they are up to. Crete was hot but there was a reasonable breeze most days which meant you could stay out in the sun fairly easily so have a pretty good tan for a week. The hotel was right on the beach front and we paid for a sea view so I have just enjoyed gazing at the turquoise waters all week. We enjoyed walking around the town, which seemed to be a main area for visitors, so good to be close enough to stroll around a couple of times each day. A lot of shopping too We seem to be in an archeological/historian phase and plan most of our holidays around somewhere significant or plain fascinating. I thnik you could visit Cret 10 times and still not see all the sites. It is a very large island with 2 airports so you have to make sure which side of the island the places are you want to visit. We did not know much about the other big site nearby, which is the ancient Dorian site of Lato. This was from about 5 BC and really amazing considering the lack of advertising and only E2 entry fee. The hotel suggested we could bus and then walk. Fortunately we decided to have a taxi and to be honest i think I would have had to have a helicopter to rescue me if I had walked from the bus stop! They suggested it was an easy 3km walk. It was at least 5km and 380metres upwards on a dusty road with no vehicles, no shade and nothing alive (person or plant) to be seen from the start until the very top. They had a small building selling entry tickets but not a lot else. It was amazing in size but just completely open to wander about and very few people there when we visited, on our own for the first half an hour. That always spooks me and I start to think about snakes and scorpions, etc. Luckily the taxi driver realised we didn't know what the hell we were encountering and he said I am staying and won't charge to wait for you, I am the only taxi and no-one else will come!! I wa still pretty pleased to see him still there when we climbed back down. Then we looked around the traditional village of Kritsa which was sweet but a lot of hard sell from the ladies making linen products.
We booked on an excursion for the Knossos trip as in Greece you have to have a degree to be a tour guide so they are incredibly knowledgeable and interesting. Well as long as they don't leave you in the sun too long! The palace of knossos is the oldest civilisation in all Europe and was built incredibly 2000 years BC. It was quite unbelievable that 4000 years ago they were building 150 room places to live and used baths and had an incredibly advanced level of knowledge and skills. The Minoans must have been like a superior race, they were so advanced. I don't know if you ever read Greek mythology but Heraklion the capital of Crete is called that as it was the land of Hercules. Having watched those programmes with my kids it all seemed a bit familiar. We also went to the museum in the capital where there were thousands of artefacts from when it was discovered. I liked the skeleton curled up and buried inside a big pot. It was so puzzling seeing all the things they made and designed 4000 years ago. No surprise at all that is was considered one of the 7 wonders of the world. Definitely worth a visit if you are there but go early as the queues become enormous. There were 45 coaches arriving from the cruise ship in port as we left. Ice cream and crepes were worth going to Crete for too ha ha. I had rather a lot so now I need to join Lisa and shift some pounds. Well done for the stone, excellent effort, keep it up. Carole thank you for your trip story too. I was very travel sick on my holiday so i was really feeling empathy for your tiredness after such a long trip. i did warn you about the driving! It sounds like a lovely trip though and Pompei on a hot day is unbelievable isn't it? Someone shgould plant more treesin these places.How are you feeling now? Lisa have I missed your test results? How did you get on? Hope all is ok with you. How about your job, how is that going now?
Nicky it sounds like a very reassuring as well as encouraging appointment.I am pleased you gained so much from it, most of all some confirmation of current and future treatments. Is peripheral neuropathy troubling you at present on this regime? I am trying to work out which dose you are on now but it is easy to lose track with the double doses. Are you on around number 6? Have you looked up the trials yet as they are usually open for quite a while, some up to a year. I know local hospitals decide which trials they want to take part in but are you able to join trails throught he marsden too so you can access a bigger range? Good explanation on the HER part thank you. That makes it much easier to understand and clearly the ER+ part is the one that needs addressing to keep you stable. Did you have PR + as well? Its a complex business to keep up with. Have you had any ideas about how to boost your blood counts through diet if they were just a little low? That might be all you need to keep a little higher next time. Worth a go. Good luck on the next one. Keep smiling you know that's the best treatment for us all. How many weeks until you have someone really special to smile at? Love to all. Lily xx
Good to hear from you Lisa, and even better that your bloods were ok ish, but well done with losing a stone, how did you do it??? I just don't seem to shift an oz
Hope it's going ok Nicky.
No news from me since last night so TTFN xx
Hi all I'm around just work has been bonkers 😫😫😫😫.
well Nicky, its good your all on the same page. I must admit I get a bit baffled by the her+ stuff. I think I was her+2.... but I was so out of things I didn't understand. One of the reasons he said to stop the arminidex after 5 years was that he felt it was of little benefit and in fact my her level would have probably Reduced further with having my ovaries out etc.... all baffles me, so glad you have a handle on itxxxxxx how are the side effects of this chemo?
carole, wow it sounds really hot 😍😍😍. I know what you mean about coming off the tablets it did really shake me up.
well hope lily is enjoying her hols and not giving us a second thought lol.
bloods back, all fine. Liver function is still a little high, like it to be under 40 and mine is 56... not sure what all that means, know I have a fatty liver which is why it's like this but doctor didn't request to see me and marked it as stable so it's still where it was about 2 years ago which is Lower than when it was first identified....
funally hit my stone off mark yesterday, been such a long time coming but have to have fun along the way, just another 4 to go lol
night all xxxx
Blimey Nicky it is a good job you are so knowledgeable about your cancer and the hormone HER side of things, I think I would be completely in the dark. I'm pleased that you had a good lengthy appointment that answered your questions, and hope from that you feel a bit more reassured. How many cycles have you had so far of this current chemo? I still have peripheal neuropathy which now combines diabetes side effects as that is one of the problems, From reading your details as I had Herceptin I assume I was quite highly HER +. I don't think my notes ever showed how +. Your blood test sounded easy this time thank goodness.
I only have one more month of Tamoxifen, my Oncologist was happy for me to stop because I had no lymph nodes affected. I suppose I will feel that my defences are gone when I stop but in another way I am looking forward to seeing if my body becomes normal again, by that I mean hair regrowth, nails improving and most of all less knee pain and perhaps a drop in weight. We will see.
Today has been 35 degrees so I've been in the pool a couple of times to cool off, I like swimming although these days it's a very slow swim. From 6 am this morning until I got up at 8 I had continual leg cramps so was in and out of bed several times, in the end I just got up. I've drunk 5 pints of water today to keep hydrated and think tonight I must take a crampex (a very out of date one!). It's so annoying and painful and as my blood results were good last week I can't think that there is anything causing it. It is apparently a common thing with thyroid disease and diabetics!
Good luck with your chemo tomorrow Nicky and I hope you don't suffer too badly from the dose. Lisa like Nicky hope all is ok?
Love Carole x
Wow Carole, that was a LOT of driving! Although I'm sure it was a fab holiday I expect you both need one afterwards as well. Great to do an Italian trip, it is such a lovely country and you would have seen plenty of it. It will be nice to have YD at home to keep you company now Mr P is back at work and theres always the downer afte having such a long break together. Hope the weather is good enough for you to enjoy your pool but nit have to do too much watering of the garden. We're now on typical school holiuday weather - literally changed here the day they broke up last week - wet and not sunny at all.
Lisa, how are you doing? You've been a but quiet over the last week, hoping iut's just work and play and nothing else.
Lily will be sunning herself I expect and walking around the bottomless lake!
I had my appointment at The Marsden and we all seem to be on the same page. I had a long consultation and felt all my questionswere answered. It is likely that I will go up to 8 cycles of Eribulin but stop then to make sure any side effects don't get too bad. Things like peripheral neuropathy can get worse, especially if you've already had other chemo's that have it as a side effect. Then move on to either a hormone on it's own ir in a trial situation where other treatment is added in (and not available through NICE), CT at the end of the 8 cycles to get a baseline and see what's going on. I obviously asked about the whole HER2 question and had a good explanation. Basically even though one part of the sample showed as being positive it was only very weakly positive, similar if you had a score of 1 out of 8 for being hormone positive. Therefore some of the cells are definitely below the positive score some are slightly above it, but only just which is why none of the herceptin based treatments have worked for me. The only time they have appeared to work is when I had chemo alongside or a hormone treatment alongside which of course worked. Btw everyone has HER2 receptors on their BC cells its whether there is an over expression of them that denotes if you are HER2 + or -. Hope this explains things and I was comfortable with thus explanation. In fact the result that came back as a positive is only 0.09 above the original reading for being HER2 positive and it's only recently that they have moved that downwards. If I'd had a score of say 6 above (on this type of test) they would have definitely retested as that would have been an anomaly.
Well, back on the treatment cycle again this week. Bloods a bit low from yesterday so, lucky me, I had to go back again this morning, yay, two mornings in a row having a blood test. Thank goodness the lovely girls in the blood department at our hospital are so good so this morningwhen she said 'sharp scratch' I didnt feel a thing!
Have good week, hope it's not too soggy where you are.
Lily I looked up the bottomless lake, lots of history and legends there by the look of it, so enjoy! No doubt you are there by now so won't see this but anyway, have a great time and RELAX.
Nicky how did your appointment go? I hope that you returned with some useful information that is positive for any treatment you may need in the future. Your weather sounds a bit depressing, mind you here, when the sun is out it is hot, but we keep having very cloudy mornings and then hotter later in the day. For the last 2 nights we've had terrific Dordogne thunderstorms, so not much sleep for the last couple of nights (coupled with my usual sleeping not too good).
Lisa, any news about your blood test? When is your next trip away?
As promised my holiday : we travelled with our new car but old caravan the first day for 11 hours, by which time I had had enough and wanted/needed to stop. Obviously we had toilet breaks etc. but it was getting on for 7 pm and we both needed to stop. Typical for us we couldn't find a campsite so ended up staying in motorway services, still in France amongst all the lorries! We were so tired that we actually managed to sleep well, despite a terrific thunderstorm and heavy rain pounding on the roof.
Day 2 we travelled to the Little St Bernard Pass, it was a bit scary but I found it very scenic driving through the clouds and the scenery was amazing. We arrived in Aosta and decided to stop over for 1 night. Day 3 we journeyed to Lake Garda. On our second day here we went into Venice, it was extremely hot but still amazing so lots of photographs. We didn't go on a gondola as a bit expensive.
The next stop was near Rimini, just a couple of days here at Cesenatico as this is where Mr P used to holiday every year with his parents and grandparents. We visited San Marino which of course is a country in it's own right, and tax free so we bought some souvenirs here. The views were beautiful.
Then we travelled onto a campsite in Rome and stayed here for 3 days. The Italian transport system went on strike the first day we had planned to visit Rome, so we had a chance to just relax. Then the following day we caught a train into the centre, it was unbearably hot so we bought Roma passes which meant we could hop on and off buses, some were air conditioned thankfully. We saw all the sights from the bus but got off at the Trevi Fountains (before they were turned off lol) then after lunch back on the bus to the Vatican City. The queues were 2 hours long, so unfortunately we didn't see inside, nor did we see the Sistene Chapel. We did see and take photos of the Spanish steps, Colosseum and various other famous statues and churches. We had our photograph taken with "Gladiators" at the Vatican which was quite amusing.
After Rome we then travelled to the Pompeii campsite. Walking around Pompeii was an incredible experience and I feel so humble that those poor people were caught in the Vesuvious eruption. We caught the train into Sorrento and had a day here. We found Sorrento very expensive.
So then we started our journey back, we left Pompeii on Wednesday morning and arrived home Friday lunch time.
During our stay at Pompeii we saw the Vesuvious forest fires, and then heard they were evacuating people from homes on Vesuvious. It also affected Sicily and Capri. On our journey home passing through Naples it was just full of smoke. We also got caught in some fires in Nice on our way home, which created a huge traffic jam.
Nicky the driving in Italy was definitely the worst I've ever seen. Even Oman is better and that is saying something. The French drive quite considerately compared to Italy.
So to sum up our holiday, all the travelling was very tiring, it was too hot but, we would love to see those sights again perhaps in December or January/February before it gets too busy and too hot. We would definitely NEVER drive again, or take a caravan as its just too far.
I'm still suffering from tiredness, I don't know why because I had a blood test last week and everything is ok, nothing like anaemia showed up.
Mr P is back at work for a month now but at least YD is here, albeit working very hard to save up for her next Uni year. Tomorrow I'm going to see Dunkirk (French subtitles but in English), has anyone seen it yet?
So that's all my news, I hope you are all ok and keeping as well as you can. Nicky and Lisa let me know about your appointments.
Love to all, Carole xx
Hi all. Just a quick post to hope that you gain a lot of information tomorrow Nicky to help you to see a clearer path ahead. I think I would be forward planning too. I know some may choose a different approach whereby you make decisions when you get to the next crossroad but I would be like you, planning all possible routes from the next junction, whenever that might be. Any way good luck and I look forward to hearing all about it. I may get online beforee i get back but you never really know until you get there! Check out 'the bottomless lake in Crete', we are staying very close by, so this is going to be my evening walk until I get back. Take care. Love Lily xx
Well, as one holiday ends another begins!
Carole do tell us about your travels and adventures when you have time. By adventures I mean the Italian roads ha ha. In the past we have found French road signs to be really good but, boy, do the Italians need to learn! Suddenly you find the place you were trying to get to disappears completely from any road sign you see - as happened to us going from Lake Como to Lake Maggiore. A journey that should have taken about an hour took ages and involved going round lots of roundabouts many times! It is always a downer when you get home so take time to pick yourself up. Hopefully the cramps in your legs are not keeping you awake too much, if not maybe you need to see your doctor if it's something you don't normally get? ED suffers badly from restless legs so I understand how lack of sleep can add to the general feeling of not feeling great.
Lily, enjoy your holiday. I think the island you are talking about is featured in the book by Victoria Hislop called (you guessed it) The Island. Worth a read as its a very good holiday book especially if you are visiting it. This year I read Ernest Hemingways A Farewell to Arms (not my normal holiday reading!) as the characters met in the bar of the hotel we were staying at on Lake Maggiore, it was set in the First World War but places hadn't changed so much.
Lisa, hope all is well with you? Any big plans coming up for the weekends? Any news on the blood results?
I have my appointment tomorrow so hope to come away with some answers and a plan of what to do as and when it's needed. As always I have what I expect to hear in my head, which covers all scenarios, but then the oncologist chucks in a curved ball which then throws me! We will see. Other than that a quiet week which I have enjoyed just pootling around with no hospital appointments hooray. The last few times I've had this extra week during chemo we have gone away which has been lovely of course but meant I have not had a week just doing odds and sods for quite a while. Rubbish weather though! It would have been nice to have had a sunny week but as our schools broke up on Wednesday it means there will be no nice weather until September ha ha.
Happy holidays Lily and have a good weekend everyone else.
Hi everyone. Carole I hope you can rally yourself, its probably a big drop to normality after having trips and a lot of company and getting used to a quiet house again. Thinking of you. Lisa any news on the job front? Have things settled a little or do yuo have a lot of extra things to do?
Nicky I don't think you mentioned which day your appointment is, so hope you gain/ed a lot from it if I don't hear from you before I go. Started packing and had to go out to buy bigger shorts!! Not a good sign as I surely can't blame the tumble dryer for all of them> hmmm maybe I can. Anyway it was nice to have a few new outfits. I only have to pack as everyone else is staying home, so not too much to plan and the dog can stay home. I am very excited about seeing the palace of knossos so hopefully we will get there. I also love the look of Spinalonga island which is picturesque and very near, it was a leper colony in the past apparently. Probably why they didn't get a chance to over build there. We are staying very close to the bottomless lake, which is in a very pretty area too and as we are right on the sea front I am hoping for some nice evening walks around the harbour. May be back on here but if not speak soon love Lily xx
So sorry I haven't been on, since my return as welll as being very busy with this and that I have also been extremely tired, not sleeping well and having cramp every night is not helping.
Anyway I just wanted to say to Lily Happy Holibobs, you'll be fine in Crete I'm sure but yes can imagine your worries. Nicky I see that you are seeing a private specialist and hope that you get some answers to your questions. Lisa how are you and how is work going?
I haven't had much of a read back on posts, but promise to do a proper catch up at the weekend.
Love to all Carole xxx
Hi Nick, I think it is a brilliant idea to follow what has been suggested. I can't imagine how frustrating and agonising the decisions are when you get conflicting views, when it is your future they are talking about and not just something mundane! Even though it is their evey day job so you can't help but feel that you are another one in the very deserving line. I'm very glad you are able to do this. Will you take someone with you to take notes or maybe they would let you record it on your mobile, so you can refer back to it? I think I would want to know if I was on the very best option or just one of the possible treatments. What would be the natural next route to take when/if you need something else. What brilliant new drug is out there waiting in the wings that you should try to get as soon as trials start. Should they leave your current cancers or try alternative treatments like rads or surgery, especially the breast lump.I would also wonder what treatment you would be having at this point or previously if you checked in a hospital in America or Paris. How many years ahead of us are they? Anyway just a few ideas you might consider although I am sure you are on the case already and having been reading up everything you can find. It is always this possibility of 2 different dx that leads to most questions. If you did have 2 different types of bc, then would focusing treatment on one to tackle HER regimes allow any more ordinary oestrogen positive ones to grow. Anyway I hoped to ask a few questions that might develop/articulate your own ideas to make the very most of this important review. Good luck and come back and tell me EVERYTHING. love Lily xx
Hi Lily. Enjoy the lie ins and also your holiday. We will hear all about it when you are back I'm sure. In answer to your (many!!) questions I am paying for a private consultation at the suggestion of my cardio oncologist! As he pointed out its all well and good going for a second opinion on the NHS for free but you only really get 10 mins or so in a rushed environment and not necessarily seeing the head of the team ie the real expert, even though I know they will have discussed your case. So, it is the same hospital I'm going back to, that I went earlier in the year, but will make full use of my (paid for) time, well, that's the aim anyway. I have my full list of questions and hope I get some full answers about what is possible, or best, for my situation either now or in the future when things start progressing again as they surely will do. I would obviously rather not pay but when you see a more junior member of the team who gives opposing guidance to previous members of the team it does confuse and worry you! So, let's hear it from the horses mouth so to speak. At least the appt is this week, in my week off, and I hope to have some info that I can go back to my current onc with about what the treatment plan is. Btw he is very supportive of this and happy to discuss what is said or suggested.
Anyway, by for now,
Hi everyone, I am abit puzzled as I replied the other night but it hasn't appeared so forgive me if I appear to forget something, I probably think I have already responded! I think this regime has had a positive run so hoping you can have some good time on it, although your comment makes me wonder whether you would like to try something more maintenance like one of the tablets? What normally comes after this regime if things have gone well or do they just run another cycle. My local friend is on around 150 doses of capecitabine now. She is one of 3 locally who are changing what the docs know about chemo. Its incredible and so is she. Is your private consultation with the Marsden or somewhere else? I wasn't quite sure why you have to go privately and can't just have a 2nd opinion? When will you see someone? Anyway i hope they can give you the information you need to understand more and plan future steps. Keep me posted so we can discuss it. How did the hospital check over the temperatures go? Are they changing the GCSF dose? Disappointing that it cut down your baby shopping time. How many weeks is she now? Getting closer now, very exciting for you. Also extremely alarming to be mum of the one giving birth I should warn you, made me terribly anxious each time. Yes I had pre eclampsia too but none of the girls followed my footsteps so hopefully yours will stay well too. Maybe modern diets have improved it? I have to say that would be my dream, to have someone in the family as a pastry chef, yum. Enjoy your free week coming up.
Carole how are you? I can imagine you over-run with home grown goodies by now and wondering what to do with them all. Maybe lots of soup frozen for the winter?
Lisa I was sorry to hear about your blood test concerns. keep us posted how you get on. It was nothing that needed treatment before, so hopefully this will not be an issue too. They do have to call you every time you go outside of the norms but often it is not by too much. Good luck and keep us posted.
Well I am on the countdown to my holiday in Crete. i was a bit shocked to hear about the earthquake and had a worrying moment as i didn't hear which island first time. Terrible for Kos though. Victor has been working like a lunatic, even getting up at 5 am on weekends so he needs a break. The joys of your own business. I have had a busy weekend but intend to switch the alarm off from tonight hooray. I went to watch the Race for Life today as my 2 eldest took part. I managed not to cry but it was very difficult with 'running for mum' on their back cards. Then seeing them hand in hand run through the line. They were very quick and back in 34 minutes despite no training. certainly don't take after me or Victor ha ha. The little ones were screaming and waving flowers for them which was also so sweet I could have howled! Mum has been so very difficult recently that a week off will do me the world of good. If I don't reply you know I didn''t get back on the plane and stayed forever on holiday . Love to all. Lily xx
Thanks Nicky, you are my inspiration xx ha maybe there will be no abnormalities they are just doing it because I'm on blood pressure mess they are doing everyone Mam is booked in next week too lol.
i bet lily is sitting with her feet up surrounds by lots of treats from kids lol 🤗🤗😍😍😍
I know what it's like, for me it is also like getting blood from a stone! Despite having to have regular blood tests is doesn't get any easier, I just get more grumpy if they mess it up! Also what a waste of time and money, your, the nurses' sand the flipping laboratory no wonder the NHS has problems. Anyway I hope they get the next sample easily and these 'abnormal' elements are nothing really unusual, maybe just a change in diet etc is needed? Holding your hand.
Hi Nicky thanks for the update. I admire you determination with all your appointments and consultants to look at future options and sorry you ended up being checked out in hospital grhhh. How exciting with your daughter whilst nervous at the same time xx
lily, you must be in a good mood, roll on tomorrow tears frantic and lots of smiles xxx
carole, you recovered yet?
bloods drama continues, don't even get me started.... you know I hate it and have one vien that works, well she hit the jackpot then finished about to leave and realised she needed more so had to go back in for round 2. She filled out the forms that I was given 12 days ago and off they went, phoned for results and told abnormal and to see doc but don't worry but wouldn't say why, went into a meeting and gets a call from docs to go back for more bloods, someone different, I said just been told abnormal she said yes but don't need to see the doctor they are abnormal as couldn't be tested as over 10 days old, I said it's Wednesday they were done on Monday later afternoon, it appears that the nurse didn't update the date so it had 12 days ago date on so lab destroyed and didn't test 😪😢😪😢 back for another set next Wednesday lol.
night all xxx
Glad you had a good time Carole and let us know what you did once you've recovered from your epic road trip! I think the weather was very hit so I expect that affected your excursions a bit but hopefully not too much.
Lisa, try not to worry - simple to say but not easy to do - I should know! You may have a few of the results a bit raised due to enjoying life but so what, just make a few changes and I'm sure you'll be OK.
Lily, bet you can't wait to throw that alarm clock away for a few weeks! Bliss. Some of my appointments are a bit early in the morning and I hate having to wake up to an alarm clock telling me to get out of bed.
So, onto your questions! I am currently on this regime for at least a few more cycles, possibly much longer if it stays being effective but that's a discussion I need to have. I am also pursuing a private consultation regarding HER2 status and what that means as well as whether surgery or ablation are options, or even if a different trial might be available. It's more to find out what to do or have next as well as still hoping this is effective for longer. However although it's good to have something working well when it's chemo it still has its drawbacks.
Other than that doing OK except getting a few high temperature readings and feeling a bit feverish with the GCSF injections (a known side effect), so into hospital on Friday morning to be checked out - something I don't need in between 'normal' appointments. Will see if I can change that regime slightly to make it easier on me as the injections are certainly keeping bloods levels up.
So, instead of going shopping for hospital bits with ED on Friday she ended up coming into hospital with me and keeping me company as I waited for bloods to be taken and results. We did manage to go into our local town in the afternoon and to be honest we only needed to go into Primarni, Wilko and Boots to get the things she needs so we managed to get things done so she feels a bit better and more prepared. She is well aware that I was already in hospital with pre eclampsia with her by this stage of my pregnancy so she wants to be ready! I also had her, by emergency Caesarian, by this coming weekend so she's under no illusions that childbirth goes to plan. She is suffering a bit with excessive itching on her hands and feet which is not a good sign as it can mean there are certain liver functions not working right so they are keeping an eye on her and doing regular blood tests. So far so good but best to be on the safe side.
YD has now completed her first week in the restaurant and enjoying it - so far, despite the incredibly long hours which she was very aware of. Luckily the head chef isn't a shouty person having learnt that he kept losing staff when he did used to shout! She is working in the pastry section doing desserts and petit fours - right up your street Lily. And they seem quite progressive and asking her for ideas for new flavours for macarons, pre desserts etc so she's being involved rather than just carrying out their recipes with no input. It's also quite high end stuff so she should learn a lot and should move to a different section after a period on pastry which is good. She gets Sun and Mon off each week as the restaurant is closed then plus an extra half day each week so it's not too bad.
Well, I'm in getting my treatment at the moment then get the week of, hooray, just hope I can keep away from the wretched place before I'm due back in 10 days time.
Hi all, yes carole do tell about the hols xx Nicky, hope your doing okay and interested to hear your responses to Lily's questions lol
lily, I don't usually get bloods but our doctors are doing mini health checks on people and wouldn't give me my full repeat prescription till had it done lol.... feel sick waiting for resu,to but will get the, tomorrow, he was doing about 12 checks on them. However, I know have fatty liver and had been good but with a busy slightly booze weekend and the 3 weeks in Florida eating very fat food I could think of and chilled wine I am a bit worried.... I did have 10 good days on diet and no booze and slot 7.5lb again but then thought my appointment was later this week and had some treats at weekend as was feeling in a grump and sorry for myself as everyone was away or out having fun inc. all my family so I was sitting feeling a bit glum lol, no reason for it. Ive still got headaches too which I think is sinus. She said my blood pressure was high too despite the tablet I'm on so will see what they say tomorrow, fingers crossed, it's that feeling of dread.
anyhow long day tomorrow and looks like we are in for some thunder and flash flooding, hopefully it won't last and it will start with the sun on Friday for you Lily 😂😂😘😘. Hope your getting spoilt this week.
how are you all? Carole you must tell us all about your trip. hope you are feeling recovered now. Lisa oh yuk, i didn't know you still had blood tests. Is it for the BC or the liver complaint? I haven't had a blood test for over a year so I will definitely be back to scaredy cat when i do!! Just like the dentist arggggh, hate them so much. I knwo you do too Lisa.
Nicky what is the plan now, do they keep going with exactly the same dose and regime or do they tweek it? I am hoping you can have a good period of stability or better so you can relax a little and enjoy some lovely things like your new grandchild before too long . Is she keeping well in this pregnancy? How is YD's job going? Is she learning a lot there? I am just waiting for Friday to come when I finish school and can switch my alarm off. The last week is very exciting in schools but also quite hard work keeping everyone calm. i thnik I will be my fattest ever this holiday as so many people have brought cakes in each day. i find it hard o resist. Maybe I should say impossible to resist from the number I have eaten! Well better finish here. Love to all . Lily xx
Hi Carole, welcome back.... have you recovered? Tell us all the places you went to, I'm jeleous xxx
well nothing to report here, finally managed to get blood from me today and when done about to leave and she realised that needed more so had to true again. Must admit I'm feeling nervous about results, hope fatty liver isn't to bad after 3 weeks in Florida, and hopefully nothing else lurking it's gave me a wobble.
hows everyone else's doing? I'm off to bed early for a change xxx
Yes, back from our travels, it was all very tiring and so we are suffering from being exhausted (after a holiday!!) but camping and touring in an older van is quite challenging.
I will post about our travels soon when I've caught up on some sleep. Lisa it right, it was extremely hot being in upper 30's most days.
All for now, will catch up soon hope everyone is ok and love to all xxxx