24-07-2017 09:26 AM
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,
24-07-2017 12:06 AM
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
21-07-2017 11:54 PM
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 🤗🤗😍😍😍
21-07-2017 07:48 AM
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.
20-07-2017 11:50 PM
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
19-07-2017 11:13 AM
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.
18-07-2017 11:12 PM
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.
18-07-2017 09:58 PM
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
17-07-2017 11:09 PM
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
15-07-2017 07:56 PM
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
12-07-2017 10:57 PM
Ha ha it was a guess where she might be, but I am a good guesser. Drives Victor crazy when he asks me to guess something and get it right. The table is absolutely lovely, what a great idea. Yes I was thinking of grey/green something like that. Not sure I would convince Victor about lavender but would get away with it if the duvet set. Brilliant ideas thank you. Lily x
12-07-2017 12:11 AM
Just a quick catch up.... lily how did you know where carole was today lol.
oh bedroom decorating how fab. How about pale grey lavender and green. Sounds weird but goes fab. I need to sort my living room but on the cheap as ever lol but want something a bit retro. Had this old table painted by our furniture store and put some new wallpaper underneath so may go with this....
11-07-2017 11:14 PM
Hi there buddies, nice to hear from you. Nicky the holiday sounds just the thing to celebrate apart from Oh's illness. Lucky you travel fully equipped for illnesses, as you say. Yes I hate holiday washing too but maybe satisfying when it is all done and dusted. I haven't been shopping for so long that I didn't even know salew were on!! This wouldn't have ever happened 10 years ago. I love sales but generally come back disappointed. I am not sure if I knew what YD had moved into, workwise but glad to hear she has found something to enjoy. Even if as you say, it will be very long hours. Its the moody ... that I think is hardest to take in restaurants. I once worked in a very nice restaurant and the chef used to explode and go mad at people if they did anything wrong. Luckily I was young enough to look like I would cry so the fury never came my way and i ducked the flying plates. The very worst was always when some customer sent anything back. I don't like to tell you what he did to their steak if any person's view of what the steak should look like differed from his. Surprised no-one died really! I never ever sent food back anywhere again! Thanks Nick, it is looking like it will be all ok at work after I had a major major tantrum and let my new boss know exactly what i thought of his decision and what had happened to me now. I also said I planned to look for another job.Then his boss said he had told me a load of rubbish, completely untrue, so I am fine now and someone else is sulking now instead. Hmmm well I will just wait to hear the official result before i hang up my sulky face again for good but it is looking like I am back where I should have been. Will keep you posted. Glad to hear Carole is having a good time. Pompei on a hot day, wooo she will know about that! Lisa well i love trasky tv too so I am watching love island but am a few episodes behind as Victor thinks its appalling so I don't watch it with him! Ha ha. Did you hear they plan to extend it as so popular? I love voice kids too, yes but don't know how they turn the kids down. I hopw your new boss doesn't cause you too much aggro. if they do then follow my lead and have a major tantrum!!! Let us know how you get on too. Yes I can quit imagine the trouble trying to get decisions and money offf people. Its bad enough when it is family. Good luck but the price was excellent, well done. Very resourceful. Now you do need to sort the bp out, do you need to have tablets for it? I am going bonkers until Victor agrees to totally revamping our bedroom. Its so old and dated and I seriously think it might be the carpet the people before us left and we have been here decades!! Mum is often very generous and gave me a big cheque to do something fun, so that is my target. Probably need to move out as there is a crack in the ceiling and it would be nice to get rid of it, so needs a skim plaster coat. I have some really nice cream units that are quite new, that solid wood that is painted cream so they are the only things staying. Any idea of colours? I want peaceful rather than harem ha ha. Might revamp Victor too ha ha. love Lily xxx
10-07-2017 10:44 PM
nicky welcome back, sounds like the hols was lovely, nice food, nice wine and nice weather what more can you want. Hope your hospital appointments go well.
lily, I know that combustible feeling at work, hope things were resolved today, there's nothing worse than being so mad near to tears and goes round when you lie down.
Looks like Carole is having a fab time but it's also very hot, seen some pics of Rome and sorrento and I think there was talk of sampling limoncello today 🤤
Nothing much to report here, new boss starts tomorrow, things are still messy and I'm not sure how much change there is going to be for me, a lot I think. Well I've mainly been missing as my life has resolved around trying to find a girly break in September, there's only 2 or 3 of us ever go away but we've all decided to have our first break away together in years so there is 8 of us was 9. Of course I like the challenge but this one nearly tipped me over the edge I tell you lol. Totally restricted by ones persons holidays so 4 nights was turning into just 3 full days and then one didn't pay me in time so all flights went up,matter much debating and cross to say a little spat we are down from 9 to 8 and off to Palma nova (I know a bit trashy) to chill all 8 of us we have never all been away together abroad different groups of us over the years so it will try us but hopefully fab too. It's hotel called Intertur Palma nova bay and for the area it looks nice great reviews and for £380 all inclusive including flights from Newcastle and private transfer I've achieved the goal of a bargain. Then moved onto ed Sheehan tickets and Sarah millican so all booked up.
in order to get my blood pressure tablets wanted blood pressure done and bit high surprise surprise, want blood sugar too but she couldn't get any and gave up after one try 😰😰😓.
off to watch lovely island, totally trash but I love it lol.... oh and anyone's watching the voice kids, it's fab!!
night xxx hope we all get some sleep x
10-07-2017 09:00 AM
We got back on Saturday lunchtime which gives OH a day to acclimatise to the thought of going back to work! And me the chance to get all the washing done, grrrr. Anyway we had a very relaxing holiday, not much driving and no real agenda, just did what we wanted depending on the weather - which was fab. A bit hotter than here but it's so different anyway when you don't have to go to work and you can walk or sit on the beach 😊
So it did what it said on the tin! Lots of lovely food - and wine! Although poor OH got a bit of a stomach upset half way through which didn't quite disappear so he was very careful about what he ate ie seafood/fish towards the end of the holiday. Only problem is that in Brittany there is a lot of seafood/fish! Luckily for me this time there were no upset tummies so I thoroughly enjoyed myself. Just as well that I now pack anti sickness and anti diarrhoea tablets for me, it meant he could have some!
So back to reality, and, as you say, hospitals! Day off today having a look at the sales as I haven't had a chance but it could mean there's only dross left! Heading off with YD as this is her last day off before she starts her new job as one of the chefs in a restaurant. Decided that brewing wasn't for her, too monotonous and lots of boring tasks involved and really wanted to use her love and skills learnt during her course so after a couple of trial sessions in this kitchen she got offered the job. It will be as you can imaging long hours and not that good a pay but it's what she wants to do and this particular restaurant does look like it does amazing food so she should learn a lot. It's within daily travel of here so she will be at home for a while yet but I don't think we will see much of her in her work days - out early, back late.
So - what's begins you Lily? Feel free to PM me to offload as I know you won't want to discuss anything on an open forum! Hope it resolves itself somehow and in the right way.
Lisa, how are you doing? Is the job OK with the new boss or not so good? Are you looking for a new job or sticking it out for a while? Hope it's not stressing you too much.
Carole, I expect you have been away now, maybe still there? Let us know how it all went, your epic Europe tour!
Have a good week, a bit cooler now for a few days at least which means sleeping is easier at least.
09-07-2017 02:19 PM
Hi everyone, how are you all? Nicky hope the french air has suited you and that you managed to do everything you planned. was it much hotter? Back to hospitals again now but some lovely memories to think about while having the public poisoning. Lisa how's the job going now? Have you seen anything else interesting or do you feel like thinga are settling there a bit? I am not happy at work but hoping to resolve the issue. Would like to share but can't on here. Will just say I have steam coming out my ears I am so cross and am struggling to sleep due to it, as really annoyed. Discussions tomorrow so fingers crossed. Carole I have lost track of whetehr you are still in pasta land or back. Wish I was there!! hugs Lily xxx
02-07-2017 11:37 PM
Hi everyone, I hope Carole is in the land os pasta by now. Lisa good luck with the next steps in your career, keep your head down just in case this turns out to still be your dream job. Changes can sometimes be good and maybe reduce your stress and workload. We can but hope.
Nicky I'm sorry I didn't reply before now, I just read it thought YEEEEEEES and logged out??? I think its brilliant news and very well deserved after a lot of patience and belief through other treatments. It only takes one goody to land on a ladder instead of a snake in this dratted bc. I think the report was short because it was so obviously clear what had happened. I imagine more detail is required when the difference is so slight that 2 docs might disagree or where measuremnets are minutely different. So I am declaring this result a runaway success I think stability would be wonderful but reductions too is just so very good news. Well done. I am not surpprised you have decided to have a bit of fun travelling, it sounds wonderful, especially to someone who spent the weekend working booo. Never mind not too many weeks to go until my holiday, well about 4 so no sign of cases or packing for quite some time. Good timing for your break before (at this point I went to write little chap and then thought do I know that?) bub arrives. I am planning another short break as Victor gets his free bus pass this birthday and has always wanted to stay in Bath instead of whizzing through. Has anyone been as I always try to stay close to the places you want to visit. I hate having to plan travelling to get into the city. Not looking for a posh big hotel just something convenient really, sort of travel lodge/premier inn level. I'm saving the rest of his birthday money for the amount he will eat ha ha. He is not actually retiring although he seems to be keen to do so before too long. Our age difference means I have to work until 66 to get my state pension at least, the work one could have started already if I wanted. I really enjoy work at the moment and have just applied for more responsibility. Don't think I will get it realistically, knowing who else has applied but thought nothing venture nothing gained. Probably regret it on the day! Well better go as need to be up early. Well done Nick. Chuffed for you love Lily xxx
29-06-2017 09:11 AM
Morning (or at least it is as I write this)
Hooray, last dose of this cycle done and now get a short gap before it starts all over again. Having said that, the fact I know it's working does make a big difference. Lily, I did get to see th report - I must say it was the shortest CT report I've seen! Not sure if that's a good or a bad thing. Anyway it confirms that everything is stable with nothing new showing up. No measurements were given as it was difficult to do this time but a good amount of reduction was seen in what was referred to as my 'solitary' liver met! Well, where did all the others go? I'm assuming he didn't ignore them so am hoping that the current treatment has rendered them so small they didn't pick up on the CT. Which is great.
So, OH and I have booked a week away, just in Brittany, to do a bit of mooching around on the beaches (fingers crossed for good weather) and general exploring. We used to go to Brittany, and a bit further south on the Atlantic coast, with some friends when all of our kids were small so haven't done it for ages. But as we were always heading for our final stop we didn't spend much time in the towns etc of the region so we can take our time this time around. Enjoy some nice lunches and some very interesting looking small towns. Plus bring back some wines as well as some of the French foods we always used to do but don't/can't do when you're flying. Should be very relaxing, just before all the schools have broken up and before it gets too hot if we went further South. We can then, hopefully, book another holiday after September when little one should have arrived to have a belated anniversary celebration and try to tie that in with OHs birthday for a change. Shame that Carole has left her 'left the country' note on her front door! However were not anywhere near there so we couldn't have dropped in anyway.
We also had a night away at this lovely hotel we went to for my birthday. That was last weekend, we enjoyed it so much in March we just picked a date to go back in the nicer weather and enjoy the beach more. We were disappointed, the weather was just right, no stupid heatwave, just sun, a few clouds and a lazy afternoon on the very quiet, unspoilt beach. Walk to the hotel to shower and change for dinner and a very relaxing night with great breakfast in the sun outside the next morning. Felt far longer than a one night stay!
So, Lily, should be in full countdown mode, how many weeks left? Any other plans in the Hols other than your trip to Crete? Bet you love the lie ins during those 6 weeks!
Carole, let us know how Italy was. Did it live up to your expectations? Hope you had a fab time.
Lisa, good to hear from you but sounds like it's all go at your work. Something I expect you were dreading but I hope it's not as bad as you thought it might be. As you used to work the extra mile for your boss maybe this is a chance just to get your job done, within the time at work, and still look very efficient but not go that extra mile. Not everyone is as conscientious as you I'm sure!
Well, ED is 28 weeks now and having a baby BBQ this weekend - no, not what it sounds like! They've decided to have a get together with all their friends, partners included, and not do the usual girly baby shower. Hopefully the weather will hold and they'll enjoy their afternoon. We're going as well and it's at the in laws house so no extra work for me hooray.
Have a goodness weekend all.
26-06-2017 09:53 PM
Hi everyone, back again together but not for long it seems. Carole this must be your trip to Italy. Have a lovely time, well I know you will! Glad the trip to family went well but must be very sad to leave each time. Not sure how you manage it. Lisa that's disappointing that it was so rainy, perhaps you could slightly adjust the dates another time or was it unusually bad this year? I am sure you still had a lovely time. Shopping sounds good though. How did you fit it all in your case? Sounds like it was back to work with a thump. Why not browse jobs and see if anything turns up. If it is making you unwell then maybe its time for a change. See how things work out. Nicky, have you been back for the report yet? I was just wondering as you were expecting a bit mor einfo when it was written. So pleased for you, still grinning about it. We have anothe one with chicken pox. He is extremely spotty and being sick too, poor chap so did not fare as well as his brother. Only one left to get it now. The day the latest came out with it, I kept feeling my skin prickling and half expected to get something myself but it went after a few hours, so maybe in my mind!! Love to all Lily xx