Hi all, I haven't fell of the end of the earth, although almost got blown off last night. Hope everyone is bearing up with this damn weather.
Carole poor you, my friend has that and it helps with answer to your pain but hopefully they csn tailor some treatment. You looked fab on your birthday meal out. Oh and Italy, not jeleous at all... Maybe we should rename this thread darling buddies who travel lol x
Nicky, glad you're brothers are helping out but like you say always falls to the nearest, it's same here but they need to consider you more. Hope there more plans sorted for treatment and your having a little break xx
Lily, just gotta lo r a new baby smell yum. Now thanks but I'm sitting at work with my legs crossed and a pain in my lower belly with all the implant talk. Even I've been considering braces. Bloke at work just had implant and looks great, my aunt had one too and she's worse than us for dentist fear. So spill the beans on the big birthday????
Not much here work is mega busy we are formally ceasing to exist which is sad but part of a much larger Co. So I'm involved in lots of the work by nature of my job. Had a few trips away too and tenerife in few weeks with friends. Been a bit quiet as been some health issues dad's got enlarged heart and irregular heart beat and mam been to check her ovaries for cancer which was clear and womb cancer tomorrow, god now I know what I put them through waiting for results.
Well back to work, catch you all soon xxx
How are you all doing? I hope that storm Ciara didn't cause any damage to your houses or gardens? We were lucky, just a bit of wind and rain which hasn't stopped for days.
I was in hospital last week for 3 days. I still can't say I have an auto immune disease as the hospital blood tests say I don't, but my local lab has said 3 times that I do with a high positive. So the hospital is double checking my blood again. I was diagnosed with fibromyalgia. The pain specialist said that it could be as a result of cancer, chemo, tamoxifen, radiotherapy even after all these years. So I am on anti depressants and gabapentin. My hands are still as bad so I think I'm going to have to learn to live with them like this.
Lily yes, our youngest granddaughter is walking now. She looked really cute on her birthday last month.
In a couple of weeks we're off to Italy for a few days. Lucca, Florence, San Marino and Rome are our destinations. It's to celebrate a big birthday for Mr P.
Well that's my news for now, hope you're all ok? Love Carole
Hello, Carole sorry I didn't have time to reply properly yesterday as I could tell things are getting to you. I can't imagine how constant broken ribs must be and hurt. Poor you. I hope the bone strengthener will help protect you a bit more. Haven't you had dexas? They give them here after most breaks and then if you have any of the density issues like I had osteopenia, you go back every 3 years I think. Mine went back into normal range as soon as I stopped the hormone tablets so no call backs any more. I hope the 2 medications can make you feel more cheery too although I read that they can make you feel a bit worse before you feel better, so try to keep that chin up and focus on the nice things around you and family perhaps, Maybe skype more often. Belated happy birthday to you. Did you have some nice gifts and calls? I forgot we are all close in dates. Is your granddaughter walking yet or cruising round the furniture. Our new baby is a very happy solid chap and no sign of doing much apart from wanting milk and shouting loudly so far. Yes I will get the dental issues sorted I think but it does also depend on what bone density my jaw has but hopefully not an issue. You have to be scanned to check they don't drill through something they shouldn't yuk!! It cannot be for quite some time to give a better chance of being successful following the abscess. Anyway take care and we are always here xx
Lily, you have a big one coming up ???? Well your plan of lots of little breaks and seeing all your family sounds a wonderful idea. £3000 for an implant? My goodness that's steep but, if it were me and it's a front tooth I think I would try everything to have a tooth, will they take payments over 6 months or 9 months? It sounds like your Mum is behaving well at the moment.
Nicky how are you getting on? I hope your CT scan results showed improvement or at least nothing new. The place that you're looking at for your Mum sounds just the ticket as she is still quite independent.
Lisa have you managed a trip away recently?
I still have no confirmation of my tests, and yes Lily the next visit is to do the same thing. They mentioned giving me a dexa scan as I've had so many broken ribs, and in fact have another episode now, x ray today to confirm or not but on examination my GP thinks they are broken. They will do a CT scan because of this persistent dry cough. So at the moment they are planning to give me a bone strengthener called Aclasta, and if they strongly believe I have Sjogrens Gougerot they mentioned a drug called Plaquenil, which is in fact an anti malarial.
I broke down in tears yesterday with my doctor, she's prescribed morphine patches for pain and Cymbalta which is an anti depressant, and also is known to help pain. I had weird thoughts through the night and don't believe I slept at all. Hope this gets better as I get used to them.
It was my birthday last Saturday so we went out for a lovely meal, and last Friday our youngest granddaughter was 1. Time flies.
Take care love Carole xx
Hi buddies, how has your weekends been? Lisa I wondered what was going on with your job now. There seem to have been quite a lot of changes in recent years. Do you still enjoy this new role? Carole any more news about your dx yet? I hope they can give you some help and support with some of the more restricting effects you have. Best pick up would be to visit all the grands I am sure.
Nicky well Carole and I especially know how you feel with mums. We love them all to bits but they can …….
I think my biggest worry might be that here is some sort of genetic thing that will make me do the same and be unable to stop myself argggh. Mine is being lovely at the moment as I have had some really bad trouble with my teeth and unless I want to stay in forever and resign its looking like £3000 for an implant. Not sure which I am most concerned about - having it done or not having it done. I saw that a petition is collecting names for cancer patients to have dental help as the chemo destroys teeth and I think it is right. The big concern is if I have enough bone density and I don't even want to think what they will do. Already had a bad visit and its still uncomfortable 2 weeks later and being scared of the blinking place doesn't exactly help matters. On a brighter note I have a big birthday approaching fast and I am trying to work out where to go. It will be later in the year and just a short city break to Europe but sneaking it in as well as a summer break I hope. Mainly I want to spend time with my close family and I have suggested that I could do smaller things throughout the year rather than something big in the worst time of year for weather.
Nicky it sounds like you have a lot going on at a time when you really want to research and think about what you do next. I understand the frustration as I get pulled in so many directions and my job isn't exactly any different! Very stressful at the moment. I would say being honest with your brothers was the best course of action, as we all know they don't read between lines or ask enough to know what is going on. I have to be completely clear about what I need mine to do. Oh and then repeat it quite a lot of times. It is a bit scary to move and leave memories of partners for oldies, so maybe a room plan of the new place and someone(else) talking about where she would put the furniture and special things she wants to take, would reassure her a bit. I think the problem will get harder over time too. I wish you luck with getting it all in progress. Mine still lives alone but we have 4 visits a day by carers plus everyone can drop in as we all live close to each other. the girls are fantastic at taking their share and taking the littles to see her most weeks, which she loves. Other thing is to find out if the new home has a programme of visits to places so she gets something new to enjoy and look forward to. Going back to you, I am not surprised you want some time to yourself. Waiting for chemo results and trying to second guess what they might be will keep your brain going over it. Would you be happy to stay on this chemo if it shows stability or even better results this time? I am out of date to know what the latest drugs for secondaries are. Are there any new ones on trial that you have seen which would meet your dx and would be a good plan to move to? I think you are right that you are definitely better under a team that have wider experience, probably more money. The other thing is that only certain hospitals run trials so you might get better access to new trials and regimes coming in. I don't know if its even possible physically and financially but have you ever looked into seeing a consultant abroad? America would be vastly expensive to visit and be treated even though they are way ahead of us by years but a friends' friend has recently been dx with bc and paid to have her cells tested in the states before she had chemo to see if they responded. So I guess there are some avenues if you pay. I am not sure whether these tests would be of use apart from initial dx but it might be something to find out about. It did not need her to travel. Would you ask for a second opinion to got to the Marsden again? That might be another route to think about. How long is it since you visited one of the top profs? I really hope that you have not got a decision to make on this treatment and that you can keep on this one or even better have a bit of a break to do some nice things. Always here if you want someone to talk to about it. Hugs all round Lily xxx
Hi Lisa, and all.
My brothers aren’t that bad, honest, they really do help but it’s the same thing with most family, the one living the closest does all the emergencies! I know one of my sister in law (on OHs side) has to do most of the visiting etc for his parents as she lives the closest and only works very part time so has the time to do it. Both my brothers live at least and hour and a half away plus work full time. My annoyance has been about my particular health issue not being taken into consideration, maybe I needed to be more honest with them - which I now have been ha ha.
Hi all, need to havr a good catch up tonight but wow nicky your brothers need a good kick up the 😉😉... Carol I hope you've had some news and lily poor baby with allergies 😕.
Whose ready for some sun, I know I am ☀️😊
I also haven’t read back other than Lily’s post from yesterday so apologies if I’ve missed some news. I have read them all but probably in the last week or so when I didn’t have time to log in and reply.
A very belated Hapoy New Year though as I don’t think I’ve posted since just before NYE. No real reason for this other than getting on in the real world and clearing up and getting back into routine after the festive period.
We were lucky to see YD for nearly 3 weeks as the restaurant had decided to shut, it’s not the sort of place that does Christmas dinners, far to trendy in Hackney for that! And as a lot of the youngsters who live up there do so in shared houses a big majority go back to their parents at Christmas so it can be a lot quieter both in the restaurant and in the house she shares. It was lovely to have her here for so long just to chill out as when she normally visits it’s for a much shorter time and tends to be a bit frantic around a birthday or something. Anyway it did her good to recharge her batteries.
It was also nice to get the house back to normal after the decorations had come down and all the presents eventually moved from where they had been left, plus a bit of ‘me’ time which I need these days with no decisions to be made other than what I need to do.
I had an extra week off chemo (a present I gave to myself ha ha - I did of course ask my onc 1st) again to recharge my batteries. OH and I on a last minute whim (and because prices are very cheap in January) decided to book a night away last Friday. We went over to Goodwood where there is lovely countryside as well as being close to the coast. We had a fabulous lunch at a popular quayside pub overlooking the sea and the sun was shining brightly (remember what that is?), it was a real surprise. The hotel was lovely as well, we had stayed in it before, with a nice evening meal and breakfast the next morning. All the good it had done us was then shattered by lots of messages going backwards and forwards between me and my 2 brothers about how low my Mum was feeling, and an extra message for good measure from Mum herself. She has had a bad cold over the past moth or so, one she is sure only she has had -ever- and that no one else has possibly had. To cut a very long story short we (Oh and I) ended up picking her up on our way home for her to stay with us for 2 nights. To say I was annoyed is an understatement and in explanation (which I’m sure you don’t need) is down to my condition and the fact the weekend was the last one before I go back onto chemo. OH and I just wanted to do our own thing, relax when we got home, no particular cooking requirements, see little GS on the Sunday etc but all those plans got changed. I did let my brothers know that I am currently the one needing care and am not a carer (which had already been explained when I started back on chemo early last year). If I was fit and healthy or even just not on chemo I could cope but I do not need the extra work involved looking after someone else. Grrrrr. Rant over. I know you ladies have issues with your own Mums that are even more involved and difficult but I really did not need this. So the ongoing situation is that Mum is still feeling low mainly due to the reality of Dad dying the previous winter and having a rotten cold which leaves her lonely and isolated living on her own. She has already addressed moving to a retirement village (does not need a care home or similar hopefully for some time to come) but this is now more urgent. Luckily we have already looked around a wonderful one in her own small town which is perfect for her needs but now the practice needs to be put into action. Over to my brothers for this one I think! Having said that I am involved, after all I have already done the preliminary viewings with Mum back in November, it’s just he sale of her place that needs someone other than me to be involved in.
So this, plus just catching up with things is what has kept me away from adding on here, as you can see it’s a long post!
Back to reality with chemo re starting yesterday and CT tomorrow - hooray, happy new year to me! Results not for a couple of weeks which I’m quite happy to wait for and then I hope to get a second opinion again to see what happens next whether the results are good or bad. I really feel at the moment our local hospital/oncology unit doesn’t have the level of expertise needed or oncologists specialised enough with patients like myself.
Well I’ve rambled on for ages, it will give you all enough time to have a cup of tea and cake whilst you read it ha ha.
Have a good rest of the week, hope the sun shines where you are at some point, and the continuous rain and winds stop.
Hello everyone, how are you all? Sorry its a really quick hello again but wanted to know if you had heard any more yet Carole? I never know whether it feels better to have a dx of a condition and then perhaps find out there are parts of it you haven't got or more worry not to know what is wrong. What is the reason for the feb checks, is that connected to the Gougerot condition or another thing you have, poor thing. What a collection of annoying things you have been sent one after another. I hope you manage to keep your chin up through this all, especially when you are on your own again. How are you feeling now? Good news about your daughter's job and the driving pass too. Well done to her.
Lisa hope all is well with you. Nicky how are you fairing on this regime now? I hope its one that you feel can fit into your regular life and everything else you want to do, without invading too much of your time. Certainly the time in hospital has dramatically reduced on so many regimes these days. I know you always have a plan, so how do you think it is going at the moment? I am so sorry I can't look back and check whether you will have had results. I must remember to read back a few before I start posting. Its really busy here. The new baby is so gorgeous but he is definitely going to be another one with allergies, already had a big chest/breathing problem and needed hospital treatment or a few hours and of course picks up any bug in a second. When well he is the cheeriest little baby you could hope to see and very cute. He is very sick but I think a lot is because he is such a little piggy, having bottles beyond the size he should as just wails if hungry. He has fitted in well with his sister, who has forgiven him for not being a girl and adores him. Very sweet together. Their Mummy is getting close to back to work time and wondering what to do but limited choices really. I had them all here while there was some smelly painting being done and it was lovely but a shock to have a baby here at night!!
My friend who originally had bc just before me has now had a big recurrence and is undergoing a reconstruction soon. It always makes you think, especially with 3 years between mammos now. They said she just needed a lumpectomy and rads when I had 7 months chemo too. I think they keep changing their mind about how much treatment people need. Better finish. Hugs to all love Lily xxxx
Hi to all
How are you all? Hoping you all enjoyed Christmas and New Year with your families and friends. It seems a long time ago already!
I'm still waiting for results of all the tests I had in the hospital. Last week I had a capillaroscopy which wasn't at all painful or unkind, basically just looking at my hands under a very fine microscope. He couldn't find any signs of vasculitis or vascular disease, so this is good news but still leaves me wondering why I can't use my hands and fingers without pain. The auto immune disease they are looking for is called Sjogren Gougerot, and another name for it is the "dry" disease. The lip biopsy should confirm this, but I've joined a forum for this actual disease and found that people have all the symptoms but still don't have confirmation. I'm back into the hospital for another 3 days 3 February for more tests including a CT on my chest. One thing I did learn from the last tests that as well as broken ribs I also have a broken bone in my spine, thoracic area. I have no idea how this happened.
The good news is that YD, who is now 25 has been accepted by the Civil Service in France (can't think what it is actually called) as an official interpreter. She also applied for official translator but they're saying she hasn't got enough of a diploma! Typical really as French bureaucracy goes. With Brexit about to happen as a translator she would be able to give an official stamp to things like birth certificates, marriage certificates etc. Apparently 5 people applied for translator/interpreter and only 1 got the accreditation for both. She is hoping to appeal this decision, but in the meantime can go ahead with being an interpreter.
Our ED finally passed her driving test, it's only taken 25 years to do it! Son's family have all gone down with a sickness bug so I'm hoping it won't affect any of you.
Our doggies turned 2 on NY day and are still bouncing about the place causing havoc. Mr P has been home since early December I'm sure going to miss him when he returns to work on my birthday.
Enough from me, how are you all? xxx
Hello and Happy New Year. We find ourselves here together still at the start of another year. So many dear friends who started this journey or joined us, shining away and not forgotten.
I hope this will be a good year for everyone and allow us to have some great trips away, fun days out, happy family days and each other to talk to whenever we need an understanding ear.
Happy New Year and lots of love buddies. Love Lily xxxx
Hi all, back and sorted, gutted for your news nicky but a blessing that it's same type. Here's to a healthy as possible year all and I'll be on more now as planning a better work life balance.
Weather was amazing but cold here. Love you all xxx lisa
A quick lull in what has been a very busy week to wish you all a happy and healthy 2020.
Hopeit is kind to you and yours.
couldn't miss a quick Christmas Eve post to send my love and wish you all a happy Christmas and I hope a good New Year for everyone. I am packed for the first time ever due to Victor's nagging and an early finish date for school. I have been to the pant today with YD and actually managed to nod off in part of it?? How I don't know. Nicky I can't believe you have a Christmas Eve visit booo! The recurrence is not what I had hoped to hear but you seem ok with this from what you posted? Having the same type is a big blessing and something to be pleased about though. My local friend is on almost 300 chemos now, so inspiring to others. She was lucky to find stability on one but never takes it for granted. Carole keep us posted about your results please. Lisa have a lovely break away. Thinking of our many lost but not forgotten friends and family at Christmas time. Hugs to all love Lily xxxx
Hello dear buddies.
Sorry for not posting much but I've logged on purely to wish you all a very Merry Christmas, and to all your families.
I'll catch up when time permits after Christmas.
Have fun and enjoy love Carole xxx
We all seem busy, as ever, this time of the year so I’m another one who hasn’t had time to post recently. Other than poor Carole who has had some time but in totally the wrong place. The tests sound quite intense, I assume you’re out now and do you know of any results or conclusions yet? My friend had an autoimmune disease (beginning with S but I can’t remember it’s exact name) so I know a bit about it but not much. Hope you're home now and able to look forward to Christmas.
Lisa, you lucky thing, enjoy your Christmas in the sun, or at least away from this rain! How has it been where you are. We have lots of lying water and mini floods which haven’t shut roads but caused some problems. Fields etc are soaked though so any extra rain just flows off the and into the road. Plus it doesn’t help when you’re out and about doing last minute shopping.
Lily, you must be looking forward to your break as well, Hope last night was a fun time and you can now get completely in the Christmas spirit.
Well my biopsy did show another local recurrence but we are just going to keep an eye on it rather than have surgery at this point (which is what happened with the other one some 11 years ago). It’s probably been there in some shape or form for quite a while as weirdly the CTs don’t really pick it up, despite being reassured they would 😉, and only mammograms would show something if it was very small. Anyway it is exactly as the other one was, receptor wise, so no changes in treatment. Treatment itself is going well but getting very boring now, I’m having an extra week off after this cycle to give my body a bit of a rest and then it’s back to another CT (wow do they come round too quickly) in mid Jan.
On a positive note OH and I went to Oporto for a long weekend a couple of weeks ago and had a really lovely time. Weather was great, sunny and warm enough to eat outside on a couple of occasions. Rained one day but we had expected that and took brollies with us and planned our day to keep out of the rain. It was so pretty as all the Christmas decorations were up so it felt very magical as it’s only a very small city and we were staying in the old quarter so everything was so pretty. A very good time to visit although this year they also have had a lot of rain so we seemed, luckily, to have just picked the only dry weekend in the month! It certainly got us into the Christmas spirit as we hadn’t done any decorations at home at that point so we got on with it once we got back.
Ive been pacing myself with shopping and managed to get everything I needed without getting exhausted as I’m still in the middle of treatment with the joy of my next chemo on Christmas Eve ☹️. We are going to EDs this year so that me off the entertaining hook and I’ll have YD here anyway to help with the cooking whatever I need to do. I’m having a quiet and very sober Christmas Day and a few days after but then will enjoy a glass or two of wine over the next few days once the effects of chemo settle and my taste buds reappear.
Anyway have a fabulous Christmas wherever you are and whatever you are doing. I may not get on here to post before then but will read any messages.
Hi all, sorry for my huge absence, I signed up to get an email when there was a post as a reminder to check in but its not worked. Nicky I had to cross my legs re biopsy have you had results yet? Carole are you outa hospital, too much prodding and poking me thinks. Lily havr you finished work now then? I'm okay but we are closing down where I work and accelerating takeover and I'm doing all the legal and governance which is the main parts so I've been busy and worn out, but I'm packed now and off to fuerterventurer for Xmas with family roll on xx I'll pop in more when on hols take care all cx
Hi Carole, well I was ok with the blood even though it was rather a lot, so probably a nasty bruise on the way. I liked the sugar cube test. Stick in the eye yuk but the biopsy, oh no poor you and a repeat. Well I feel I should dash over and rescue you from that one. How horrible, poor you. You must dread someone walking in the room, wondering what is coming next 😞 Just hold on to the fact that this may at least lead to some insight into what is he wrong and from that hopefully some help with your symptoms. Hang in there.
I am ready to retire with how busy this term has been but we break up end of tomorrow so hopefully that will change my mind! We have a Christmas late night out on Friday too so something to look forward. Music lifts the mood so much. Carole hugs for you love Lily xx
Hi all, thank goodness for 4g.
I'm in hospital, likely to be 2 nights/3 days. Thought I would be going home tomorrow but no. So far I've had a blood test with about 7 vials taken, some sticks stuck into my eyes to test for dry eyes, results of this 15% in one eye, 10% in other. A sugar cube in the mouth which didn't want to melt, in the end we got to 8 mins so we stopped. Conclusion dry mouth. Then they checked inside my mouth and decided to do a salivary gland biopsy, ouch this was uncomfortable. They couldn't find a gland, or it was too small so they're going to try again on Wednesday. So I'm feeling like I've done a few rounds with Mike Tyson.
Hope everyone is ok? Xx
Hi everyone, Carole I will be thinking of you and hope they can offer some insight into what is going on. Even better if there is something they can do to help you reduce the symptoms. Its one of those things when you almost want to have something wrong so they have an idea how to fix it. So often steroids are their first port of call. Pack some nice snacks and a good book to have something to do until you are back home.Hope to hear back from you soon and will be thinking of you love Lily xx
First part posted
2nd part. Hope everyone is ok?
I'm in hospital for the auto immune tests on monday and Tues. Wish me luck and hope they give me a treatment.
Feeling very down and it's not right this time of year xxz
Evening everyone I've just finished watching Strictly. Was pleased with who won but won't say in case you haven't seen it.
Our weather is very wet. Today we've seen new lakes on what should be fields/land. Even ducks finding a new place to swim. Incredible weather 0
Hi everyone, I have no idea where time is going to, apart from knowing I am not keeping up with it all. Work continues to be frantic and short-staffed and even people who temporarily fill the gaps, end up taking more time with a million questions and needs argggh. I am very very pleased to tell you that my daughter got the all clear from the hospital and has fat necrosis, which we are delighted about, despite it sounding terrible. So it is already disappearing and she did not have any tests just the usual grope. I went in and talked through the curtain. So while there we asked about our family history and were told I am too old at dx for them to track us as not any of their high profile triggers. So still no genetic test for me and no early checks for the girls. I have mixed views on taking them to this level of relaxation about it. This was rapidly followed by our new little baby being very ill and I had a night time call while he went into hospital with terrible breathing sounds but he was very quiet and not even crying. They were there all night so I babysit until 2 very weary folks got back to their house. The hospital gave them a nebuliser to take home as they said they should expect him to need to come to hospital quite a few more times as it hit its peak!! Fortunately that wasn't the case but he is taking a while to clear his chest with no medication. I guess its viral as mine always had steroids in similar cases. Or new nhs rules. This is my absolute worst year ever for xmas shopping as no shopping day, which I rely on. One more grandchild birthday to go before Christmas too.
Carole I could not believe you had cracked 3 ribs!! I understand it is very uncomfortable and restricts lot of what you can do. How miserable for you at this time of year as well. Glad to hear you have a little help with the dogs but I am sure there are many other things to do which are difficult now. How is your shopping coming along? Sorry I meant to tell you we spent an amazing time in Perge/Perga which was huge and such an amazing place. Also Aspendos, the best preserved amphitheatre I have ever seen. Then a really beautiful waterfall in Kursunlu park which must be a lucky place to go as there were brides going up and down throughout our visit, struggling with their long dresses! The water was turquoise blue, quite the most beautiful scene on the camera shot I took. I hope you feel better soon and as Nicky says, check out about bone strengtheners. Lisa I know how you feel, work is mad for me too. How was Tenerife, was it a family celebration, from memory? Nice to catch some sun at this time of year. Except you often catch a cold afterwards, I did from mine. Are you still making your jewellery as you haven't mentioned it for a while. What is popular at the moment? Hope everyone in the family is improving now too.
Nicky I feel like we are following a path of accidents and medical problems with the older generations. Ho are things now? I think the upper arm is a difficult injury to cope with. Any news on the plans to move them to somewhere with more support? I agree you let them get it sorted. You don't always get appreciated when suggesting things for inlaws! I don't think its selfish, I think its very sensible and you deserve a bit of peace in your time off chemo. So put number one at the top of the pile sometimes x. Any news from the core biopsy yet? I gulp when I hear that word. Poor you. I thought you said years ago that you had a bc lump that they had just left, or did I dream that? Is that the area where it is/was? Hoping to hear it does not mean more treatments when they analyse it. A lot of lovely things on your post. I would love to go to the shard as Victor has managed to go many times without me, while on business!!! Now I realise I read your email and just failed to reply!! Sorry as I really meant to keep in touch abut your results and now I haven't 😞 . I am sorry to not have replied before. What is the latest news? Any changes?
Well better go now or I will fail to reply again. Hoping to manage my time much better very soon.
Love Lily xxx
Aw nicky that's so kind of you, given what you have to bear. My last dexa scan in Feb seemed ok, but when I see the rheumatology dept this month, for my hand problem, I will mention about bone strengtheners as I think I might need some help. Radiotherapy to both sides may have weakened them? Anyway, the first day of December, time really does fly.
I'm looking after the shop for 2 days this week. It boosts my morale to help
Love to all xx
Oh no Carole. Sending very very gentle hugs your poor thing. You are in the wars and although I might struggle on a different level with different things it still doesn’t belittle what everyone has to cope with ! Just wondering though, if this has happened again, do you know if you have a bone weakness? I’m sure you’d love to have yet more tests 😉 but at some point it might be worth checking. Anyway I do feel for you because these sort of things really get you down day to day and the dreary weather can’t help. We’ve also had very wet weather here in the South but a couple of bright, cold days have cheered me up and I’ve been able to get out for some walks, something I don’t do as often when it’s raining.
Take care all, especially you, Carole, I’ll send over some cotton wool to wrap you in and keep you safe 😊
Hoping you're having some decent sunny days, unlike us. It's wet and cold here.
I'm suffering from broken ribs AGAIN, this time caused by my reflux cough. I was coughing most of the night Friday night and was in agony. On Monday I saw the dr, had a chest xray and it confirmed 3 ribs. So I've been suffering somewhat, what with that and my hands, I'm in the wars.
Still, that's nothing compared to Nicky, who is so brave and coping so well.
I'm typing from my new phone so just getting used to everything. Anyway hope you're all doing something nice this weekend. Love Carole xx
Ive been enjoying the week off treatment that I get during week 3 of this chemo and making the most of it. I tend to feel less tired (fatigued is probably the right word rather than tired) and can enjoy eating a few things that I don’t really fancy during the first two weeks. This is only due to taste buds which aren’t affected too much, unlike some previous chemos, and sometimes I just don’t fancy foods that I normally do.
We’ve had a lot going on recently, some good and some bad. The bad is that my father in law, the one with dementia, fell just outside their front door and was found to have broken his upper arm when he eventually got to hospital. This was 2 weeks ago and once he had been checked over more thoroughly it was found it was very high up and is his shoulder joint. Not a good place at all as the arm can’t be put in plaster when the break is that far up the arm- for anyone, not just him. So the worry from the family’s point of view is how to stop him using said arm if he goes home as he will have forgotten he’s broken it (and possibly doesn’t even know he has ) . Their house is not suitable for him to go back to as there is only an upstairs bathroom, no cloakroom and the stairs are very steep. They have been discussing his on going care with the hospital and so far he is still in, and has had an infection plus feeling up and down at times so not ready to come home anyway. Unfortunately the days of convalescing homes, where he probably would be best in, are gone in most authorities. The family are all helping get MIL down to visit each day but she is not helping herself by not eating, or forgetting to eat! Personally I am keeping out of it all as there’s enough of the kids to sort it amongst themselves and to be honest I spend too much of my own time in hospital to spend any extra time sitting at someone else’s bedside who wouldn’t recognise me anyway. Sorry, sounds very selfish but I have myself and my Mum to look after and don’t need myself to be spread too thinly especially whilst still on chemo. Which would, or could, cause issues with picking up germs if I was to go and visit when OH does. Have no idea what the plan is overall, neither do any of them or the medical staff, the only thing is he’s in the right place and it causing the family the usual concerns.
I have also managed to fit in an extra visit to my own hospital, lucky me, especially on my week off, grrr. On my recent CT the report mentioned something being picked up in the breast where my original lump was, and subsequent recurrence, so I requested an ultrasound to get it checked more thoroughly. This was a bit inconclusive, could be a lump or just scar tissue so I had a core biopsy done - remember those! The doctor and nurse were very good and kept asking me was I OK, I didn’t like to say that once you’ve had a liver biopsy done a breast biopsy is a piece of cake so, no, I wasn’t worried. We will see what the results bring, I wanted it done more to decide if any changes are needed in treatment after this chemo, in case receptor status has changed, or if it is nothing to worry about as the CT isn’t accurate enough to determine what showed up.
Now on to the better things I’ve been doing. OH and I have been doing a few different things whilst I feel less tired. A play at the local theatre which we took my Mum to for her birthday treat, plus a meal out before. Then up to London this week to celebrate her actual birthday with my brothers and wives which was a very nice day. We went to The Shard and had a fantastic view from our table, luckily a clear day weather wise and not too expensive as they do a set lunch. We all enjoyed it, especially Mum as last year we were gearing up for my Dads funeral just days after her birthday so we didn’t feel like celebrating much. We’re off tonight to visit YDs restaurant (again, but this time with friends) then it’s back to the grindstone with treatment starting again next week. ED and family have gone off on hols for 10 days to Tenerife, lucky them. And OH has got over his very bad cold that laid him low for about 4 weeks and didn’t seem to get any better until it cleared up over a matter of a day. I can’t believe I didn’t get it. I’ve also managed to fit in my flu jab and was offered a pneumonia jab as well, which I took, again, not things I actually wanted to do on my week off but felt I should. So, 2 separate Fridays with sore upper arms (our practice nurse prefers to give them on separate occasions plus I wasn’t booked in for the2nd one until she mentioned it to me).
Ive now finished writing and I expect it will be a very long message once I post it. Fingers crossed it saves otherwise I’ll write it again but in bullet points!
Have a good weekend, hope all is well with you all and your families.
Here's hoping this is finding you all well and avoiding all the bugs going around at the moment.
Lily you didn't say if you did any sight seeing in Turkey? Hope that your work load is calming down a bit now, although you have Christmas looming so I suppose it is generally a busy time for schools. Your wasp story, in Victor's hair made me cringe, I would hate that as I'm pretty scared of wasps. They just seem to attack for no reason. On the subject of BC, I did have the genetic test and was all clear so that was a relief for my girls and granddaughters, although even though I've had BC twice, no one in my family that anyone knows of has ever had it. I also breast fed all the children so I suppose nothing is guaranteed. Hope your daughter is ok?
Nicky hoping you've had some time off from treatment and have been enjoying some normal things, like shopping trips and trips out and about.
Lisa, you're a busy bee too. Don't overdo things or you'll end up with that awful chesty thing that seems to plague you every year. Sorry, nagging!
I was helping a friend out last week, and a couple of days this week. Working in his pool shop (the one YD used to work in) and answering the phone, we had a few customers, all French so I had to speak French which I rarely have to do these days except when making appointments or shopping. I rejoiced on my first day off, catching up with lots of washing and housework. That chore is beginning to get very difficult with my hands the way they are. Still housework is not very exciting is it. I have a chap who has been walking the dogs when Mr P is away, as they're simply too strong for me on leads. We took Aero swimming at a lake last weekend, he loved in 45 mins of swimming was good exercise for him.
I'm pleased to say that we're mostly done with our Christmas shopping. Just a few things left to get for YD.
That's about it for my news. Have a good weekend all love Carole xx
Hi all, sorry not been around major projrct at work so taking over everything plus wee visit to tenerife... Will have a good catch up tomorrow xxxx glad everyone is doing okay and hope this evening is above zero 🥶🥶🥶🥶
Hello girls, how are you all doing? I hope you had a nice weekend. We had some blue skies and sun which was nice for the time of year. How are temperatures holding up with you Carole after the rainy spell? Take care with self dx on google as some articles can scare the pants off you!! Also some of the nastier conditions are ones that they can actually help you with more, through medication. I hope that is the case for you. You struggle with a lot of things so well done for battling through and always thinking of others x. You have flies, we have a wasp nest in an old tree and they are still active so steering clear of them as they went in Victor's hair as he passed. I would have keeled over with fright so not going anywhere near that tree.
I am sorry I have been offline but work is quite crazy and a lot of staff absences have meant I have more to do than I planned, hopefully not for too long. I don't volunteer any more, its a young person's job ha ha. Its a while yet until I take my daughter for her check. I would say its comforting they have not kept the 2ww on her form but after seeing on the news that 712 people missed theirs too I am not so confident that was the reason. She feels its a bit better 🙂 and we all know that's not the case for bc so hopefully its the accident. Such a worrying time that we start to have these fears for our lovely girls. Nicky thank you for your story, you must have been worried sick too. I think the girls are about to ask about genetics, etc from what they have said but they all have to agree of course. New baby is beautiful and much more settled thankfully. He likes to chatter to his toys and make noises which is sweet, a real smiler.
Lisa how is the water situation near you? I hope there was no flooding near you as I remember you suffering a lot with floods in the past. Have we all started shopping?I have got quite a bit but nothing like the amount I need. Its a slow business and I really am trying to reduce this year. Unlikely to happen I know! Take care my friends love Lily xxx
Firstly Nicky, well done what good news about your scan.
Lily after the problems in Turkey I'm not surprised that there is extra security, but poor Victor. Your holiday sounds wonderful, I can't imagine what it is like to just rest, but did you do any sightseeing? So sorry to hear about your daughter, we of course have more reason to worry about these lumps so hope she gets her appointment quickly and that all is well.
I have a date for the hospital, 16 & 17 December. I've been researching with dr google, but have found a Vasculitis UK website so will glean information from that. My hands, and my lips this week have been quite uncomfortable, with dryness and swelling. Hand cream nor lip balm seem to help. I have discovered that there are over 100 auto immune diseases.
We have had so much rain since a week ago, every day is grey and grim so is very depressing. The flies which we managed to keep out through the summer are bombarding us now, goodness knows how they get in. Love to all Carole xx
Sounds quite scary all the security checks but it's good that they are doing them. However because of them I expect it made the reasons behind them seem more real rather than reassuring. Glad you had a good time though.
Very sorry to hear about one of your D's. My YD had a scare about 18 months ago and found a lump. She had an ultrasound and all was well. However when I was with her in the follow up appointment I mentioned my history, of which they seemed unaware (which is worrying) so they added an extra follow up a month or so later. Again, all was OK but I'm so glad she was checking herself and had found it. A worrying time and all fingers crossed for your D.
Hi everyone, how are you all? I've been catching up on school work and now on here at last. Carole I was concerned to hear about your troubles. I thought it did sound like autoimmune and maybe your other conditions have been caused by it too. The stay in hospital does not sound nice as they will obviously be planning to poke and prod you. We just don't need it these days. On the other hand if they are then able to offer some relief and help, then it would be wonderful and worthwhile. So I feel you need to go to find out more. Do you have a date yet? I hated the sound of the harvest mites as even one gnat bits drives me mad especially as they seem to target the crease on the back of the knee! Good luck with the test and let us know as you find out more. The trip back to see the family sounded perfect.
Speaking of test results, fantastic news Nicky. So very pleased that this regime has brought about some more stability. Long may it last. I hated the tooth story too so glad to hear it has improved. Hope the check up shows all has gone well too. It was strange to have an inconclusive so scan so I'm really pleased this one has been accurate as well as good news :). I had a drippy eye for my last 8 visits and I know how annoying it can be as well as getting a bit sore in the corner sometimes. Have you tried putting something like sudocrem to protect it at night?
Well better go. I have one really rotten bit of news. One of my lovely girls has been sent to the bc clinic as she has a lump. The gp hearing my dx triggered the lot and a quick telephone appointment expected to set a date. They are pretty convinced it could well be fat necrosis from an accident but we will all feel a lot better when its confirmed. My nightmare came quicker than I ever expected and my youngest too. Fingers crossed they are right or I'm just not going to be able to forgive myself ever. Love Lily xxx
Lisa how was Tenerife? WE had really hot weather in Turkey apart from one slightly cloudy but still warm day. That was the day we went on a tour so it worked out well to be looking at amphitheatres and ruins when not quite so hot. Not sure I would go back for a while though as we had a rather scary amount of security checks, told it was randomly picked for our plane. I am pleased they are doing security checks and understand why of course, but I really didn't like little children being searched so fully when they were clearly quite scared. Victor had the entire contents of his hand luggage emptied infront of everyone as they thought his car keys were scissors and was searched later on too? Son was searched twice in one airport and he said one was!! I was searched and my bag despite not setting anything off and going through x ray scanners beforehand. Then all flights from Turkey once boarded have to sit in the airport and just wait for 10 minutes. It just made me overthink and get a bit scared thinking about why they were doing it. The weather was perfect and the hotel amazing, very big and very empty so sunbeds and food never went even half used. Staff at the hotel very kind and helpful, nice rooms, just a really nice relaxing break while there.
Carole, what a palaver, a stay in hospital to identify something you probably don’t want to know about and would rather it all went away (don’t we all!!) . I hope whenever that happens that the stay isn’t too bad and whatever they do find is something that is easily treatable and doesn’t get any worse. Something however that I’m sure you don’t need.
The weather here has been a mixed bag. Quite a bit of rain on and off for the last few weeks but also some lovely autumn days. OH and I have been out for some nice walks over the weekends and done a bit of tidying up in our very small garden, so it doesn’t take very long thank goodness. The trees around here have been lovely to see as you drive around, lots of lovely colours so even my usual drive to the hospital at least is pleasant to take, even if the end of the road isn’t where I want to go. I had my week off treatment last week so made the most of it as I didn’t have any hospital visits to interrupt me, unlike last time when I had my tooth out. Not some h luck this week as it’s back to blood test and hospital appointments. OH and I managed a short stay on London overnight on Friday. A visit to YDs restaurant for a belated birthday meal for OH and then stashed up there to go to the theatre yesterday afternoon to see a play with Stephen Mangan in which I’d wanted to see since it was announced earlier this year. A nice break away from reality.
Lily, hope you had a good holiday, how nice to be away at this time of the year with some sun, bliss.
Lisa, hope you’re doing Ok. Any trips planned soon and how is work going after the big upheaval last year (or was it earlier this year, my very bad memory fails me!)
Have a good week all
Hi all, well it's been quiet on here for a while so I guess you're all away, or out and about and hopefully all having a good time.
My news is that my Rhumatologist has diagnosed an auto immune disease, but isn't naming it until I have a 2 day stay in hospital to complete tests. So not looking forward to that or a sort of diagnosis.
Weather very wet here and very grey and damp.
Not much news, looking forward to hearing all yours. Love Carole xx
It's nice to read all your news, hope you are by now on holiday Lily and enjoying warmer climes. How wonderful to get a ppi payout. We tried, and I'm sure we should have received something, but unfortunately because of the fire we couldn't provide any account numbers etc. so didn't get anything. Enjoy spending it.
Nicky enjoy your trip to London, what play do you want to see? As always here is hoping for good CT results.
Lisa have a good time in Tenerife and hopefully your family will not suffer from the same problems as before. Did you claim compo in the end?
I had a few days with the UK children and grandchildren, the littlies are delightful and the youngest looks so much like her Dad at that age, it's quite emotional looking at her. Of course the oldest GC are now 15 and about to finish their last year of school.
My second hand MRI did show up something, but I don't quite know what as I see the Rhumatologist next week. My fingers are so sore, the skin keeps peeling away and both hands are definitely a bit swollen. Dr google suggests it could be Rhumatoid Arthritis or Lupus. I know something showed up as positive on the blood results and the CRP test (protein reactive) was 11 which is higher than it should be. She was checking for both these auto immune diseases with the blood test. As I already have T1 diabetes and thyroid issues, I think it is quite possible to add another auto immune disease. I struggle to hold a knife and fork, peeling veg, cutting and chopping even holding the dog leads is difficult. Anyway I hope next week the Rhuma will be able to do something to help as day to day life is definitely affected.
Well I better get myself together to walk the dogs. The horrible harvest mites are about at the moment so we are all scratching like crazy. They itch like mad for around a week, much worse than mossie bites. Love to all, Carole x
Hi ladies, just checking in quickly.
So far tooth has healed well but it's the next few weeks which might show up any complications with the jawbone (or so I was told) so I go for a checkup in about a month. Fingers crossed for that. Yes, Lily, yet another CT (the other one was fairly inconclusive) so we will see what the results of that are in a few weeks. Treatment generally going ok and I'm able to get on with things as I'm not suffering too many side effects (well, none of the big ones like nausea and the Big D! Just annoying ones like watery eyes and no eyelashes or brows, grrrr). Keeping busy with family things since getting back from hols. Poor OH has had a man cold and I'll give him his dues he has been quite poorly and is now on antibiotics for his throat which is very sore and inflamed. Not so good as he then wasnt able to enjoy family time on his birthday. We're up to London in a week or so though to go to YD's restaurant for a birthday meal for him (just us 2) which will be nice and we've decided to stay up there and then take in a play I wanted to see so that should be a nice mini break. After that nothing planned yet as I wait (yet again) for scan results.
Have started the dreaded Christmas shopping as I need to get ahead this year - being on chemo my energy levels are not as good as last year. Mainly it's the stockings I have to do, which the girls still think are the best bit, so I try my best to find different things which all takes time - and money.
Currently watching any good dramas (Dublin Murders etc) and also have got back into Strictly this year having not bothered at all last year - well, until the final couple of shows when we did watch it.
Happy hols to everyone either if you've just been away are about to head off.
I everyone, how are you all? Nicky how are you getting on with the latest regime? I think you must be heading for a review so keep me posted. Also keep slipping those lovely trips in between. Keeping positive is such an important thing and I think helps more than we will ever know.
Lisa I loved my trip to the Canaries but haven't been to Tenerife yet. I looked for a trip there but found it is quite expensive compared to other European countries at this time of year. I think its because it has such a good record of having no rain! We have been to Turkey twice before but different parts, wanted to keep well away from troubled areas. I did wonder whether we would lose our holiday again when the fighting started. Hopefully it is ok to travel, and we can relax a bit and find some sun! Its around 28C at the moment. My car said it was 8C here yesterday morning and some frost for the first time. It gets dark much earlier over there, so I plan to get up early to make the most of the sunshine. Hope you get the chance to relax and enjoy your trip with the family. Is it another celebration trip? I know its a big year.
Carole yes I was wondering how your hand was now, as well. Any news on the insurance yet? On a whim and following advice on the tv we sent off a ppi check and despite never having anything along that line got quite a good sum. I have sent off for all my oldies too and waiting to hear if they are eligible for anything. Someone in my family got £8000. Its crazy, this claim culture and big business for the firms working in that line of business. All is ok here, out littlest one is doing well but he is sick so they are still debating whether he is dairy intolerant. We have quite a few but none in that generation so we are due somebody. Not always very easy to tell when they are tiny. He has just learnt to smile and is at such a sweet stage. Well I better buzz off. Love Lily xx
Hi all, I'm around just wasn't getting notifications of posts and then couldn't get logged in 😭. Think I've book marked it now. Carole think you've been away too hope you've had fun and your hand improving. Lily are you away now? Friend is in Turkey, never been but weather and hotels look fab 😍😍. Nicky had to cross my legs for tooth extraction talk hope it's healing well xx your trip sounds lovely I adore Italy and totally fell in love with bologna and the train service is fab eh... Not much to report here work is very hectic but off to tenerife next week with parents so ready for a rest 👌👍. Celeb x factor on my list lily but been watching random box sets. Xx
Hi, sorry everyone I seem to be having trouble getting on the site. Even my search does not take me straight to the right place any more. So annoying to keep changing when the very thing you want. to post, becomes the things that becomes difficult. Carole I hope they can give you some advice regarding your hand, to help. I don't know a lot about insurance but new for old actually means that here I am told. Never had to claim it, so might not be as simple as I think. I hope they are becoming more helpful to you.
Nicky you have made me think about holidays again with your lovely trip to Tuscany. I have heard so much about the region but have not explored that area at all so far. The tooth story was awful, yuk! Just pleased to hear it is done and all went well. I think we forget how dangerous this type of thing can be. You did well to sort out the timing and to nip a holiday in too. You really deserved a nice break. We are off to Turkey as long as there are no warnings not to. I am kicking myself for deciding to try turkey again but will have to hope that it does not become difficult for travelling as its such a beautiful place and we have always received such a warm welcome. I think they have some of the best hotels in Europe too, always very grand with marble everything!! We have been told there are a few rainy days in October but it has still been 30C so hoping for some relaxing in the sun and doing nothing much at all. I do want to visit Perge but not sure how easy that will be from where we are staying so might have to leave it for now. I hope your bloods were/are ok for your latest chemo. How long before they review the effectiveness of it? You sound like you are feeling well and I do feel that is not only good to enjoy but a sign that things are fairly settled. Fingers crossed this is good for you again. Lisa how are you? We love to hear what you have been up to when you have time to post. Always keeping an eye on you xx.
Well work is manic and I really need a break. A lot of changes have not always gone my way but I am still happy with a path of good pay and reduced responsibility so I can get home early and do more with the family. Or just slouch on the sofa and watch tv. Did anyone watch the capture? I downloaded it along with Temple from sky. I love both of them but I am trying not to watch it back to back so it finishes. Also enjoyed Riviera (end was not up to scratch though) and was morbidly fascinated and shocked by Chernobyl. I think everyone should see that series to realise the utter size of the problem and extreme destruction when it goes wrong. Fascinated to watch celebrity x factor too. What are you all glued to at the mo? Love Lily xxx
I have a good reason for not being on here for a week or so, we managed to go away for a week, hooray! OH and I usually go away for our anniversary and had hoped to this year as well, especially as we've not done much over the summer due to chemo other than a few nights here and there in the UK. However I also knew I had the nightmare (for Lisa and Lily at least) hanging over me of a tooth extraction, yes, the grotty one that had played me up a few months ago. I'd had a referral to the max-fax place at the hospital and although I hadnt had any problems with it since those 2 episodes of excruciating pain there was an area of infection shown up on their super duper X ray which needed to be sorted. Without going into it all, I'm sure you don't want me to, I had to have the tooth extracted, not an easy choice given I'm on bone strengtheners which can cause jaw problems as well as on chemo. It had to be done on an extra week off my chemo so fitting in a holiday as well looked a bit tricky. Anyway I got the various appointments and timings sorted (no help from anyone at the hospital, just me sorting it out) and so we booked a holiday to fit in around it. We chose Tuscany which is a place we'd always wanted to discover more of having already been to Florence and Pisa which are the main cities in the region. We had a night in Florence when we arrived then hired a car and stayed in 2 lovely places in the heart of the countryside which were both lovely with fantastic views then a night in Bologna where we flew back from. We had a lovely time, visited some very pretty places, saw beautiful towns and countryside and managed to relax, bliss. Weather was great except one day when there were thunderstorms and a huge downpour but we knew about it beforehand so had packed in preparation and it only lasted for a short time before the sun came out again.
Anyway, back to reality so the tooth came out yesterday afternoon, a large back tooth so don't worry I'm not gappy! At least not at the front. Recovery this week and back on chemo next week, how to come back to earth with a bump! However we did have a fab time which wasnt ruined at all knowing I had to have this done.
Hope you are all well, Carole your hands do sound like a bit of a mystery but at least you are being thoroughly checked out and hopefully something positive will come out of it all. Enjoy your trip over to see the grandchildren, not a good weather week but I'm sure that won't spoil your fun with them. As to insurance I think it depends on what your policy says when you took it out. Some are new for old, no questions asked, others will deduct wear and tear if it doesn't state 'new for old'. Also sometimes they will not give the money but supply the replaceable item as they often have special pricing from certain manufacturers, this is annoying when you don';t actually need to replace a damaged item as you no longer need or use it and would rather have the money to buy something else you now prefer or need! Good luck with it all, they are slippery little critters!
Lily, sounds like you have a lot of relaxing and reading planned for a few weeks time. I hope you are off to somewhere that is keeping Victor busy as well. You mentioned the place a while back but I'd not heard of it so I'm not sure where it is but presumably still sunny and hot which suits you. Hope all the family are well.
Lisa, hope you are OK and busy, busy, busy. Any treats planned? Hope all your family are OK as well and Mam and Dad recovered from their illness, poor them.
Take care all
Hi everyone, hope you are all okay and especially Nicky? Hope the winter bugs haven't started doing the rounds yet.
I went to have one hand MRI'd on Tuesday, nothing showed up in the report. I am completely baffled why my hands are like they are yet nothing to indicate what is wrong. I stopped taking the steroids a few days ago, and find that they are very stiff again. I have the next hand MRI'd in a couple of weeks, and then seeing the Rhumatologist with all the reports at end of October.
Apart from that, i'm just plodding along as Mr P is away again. Our weather has been pretty variable this week. Sunday was upper 20's, and felt very humid but thankfully we didn't have a storm. Talking of storms, I am still fighting with the insurance over what they are going to pay. In the UK, if you have new for old insurance does that mean they will pay exactly what the price of the new item is, or, do they make a deduction for the age of the item? They've really done us down so far.
I'm pleased that I am visiting my children and grandchildren for a quick weekend visit in a couple of weeks so looking forward to that.
Nicky here's hoping all is going well and you're still managing a bit of shopping treats and trips away. Lily not long to go to your week away in the sun, good job you didn't book with Thomas Cook. If a big company like them can go bust what does that say about all the others, especially smaller companies. Lisa how are you doing, do you have any trips planned? How is your Dad now?
No other news from me, I live a very boring life Have a good weekend all xx
Hello everyone, are you fed up of the rain yet? I am just taking a raincoat or umbrella every day and seem to need it. I can't cope with a jumper all day but a t shirt isn't always enough, very changeable weather down here. When I logged on I was reading about you having the hangover from hell Nicky. Then noticed it had been reverse ordered and that was in 2009 after New Year's Eve. How much has passed in all these years we have been fortunate to have. Sometimes good to remember what we have had. Well I did look at Thomas Cook but they didn't have a hotel I liked, where I wanted to be so that was fortunate. They say holidays will be much more expensive because TC have gone but its often cheaper after a very hot summer in the UK so maybe that will even it out a bit for us. Work is very very busy and weekends are not long enough so I can't wait to be sitting on a sun lounger listening to the sea and feeling the warmth of the sun. Bliss.
Well hope to catch up with you all soon. Hugs Lily xxx
Hi all, I'm here at last so much been going on and had cold and cough again so been V lazy, plus I usually get a notification when someone has posted but didn't. It'd been hectic and managed to post tonight just cos I fell asleep in chair and now in bed wide awake.
Got to say nicky my blood was bolining for you, people's lives are in their hands and put you through hell... Its crap when they put new doctors in, I only ever seen an oncologist once its that different here but been same staff nurse every year apart from 1 year and then they worried me. Glad it's turned out to be stable you are doing amazing. Xxxxx keep enjoying those treats. Carol hope you're doing OK, sounds painful... You should defo ask about bone strengtheners I had to take them for 5 years xx
Lily, sounds like it worked out for the best re job, although can't believe you enjoy interviews, I've had one in last 24 years and was awful, just managed to be in right place at right time internally and worked my butt off xx hope you aren't booked with Thomas Cook for your hols, how awful for all those people xx
Well night and ill be back this week 😊😊😊👍👍😴😴
Hi everyone, glad to have you back again. Nicky I read your post in trepidation not knowing how it would end, so I have some small idea of how worried you were, but only as long as it took me to reach the end!! What an idiot! Competence is something we may have taken for granted a little over the years but surely we deserve to have high paid consultants who do their job efficiently. I am not at all surprised you were upset and didn't get to ask the questions you planned to. It must have been very upsetting and you must tell the twit so when you go back, to make him think next time and check more thoroughly. After that I am very relieved and pleased for you that he was completely wrong! You know I was always obsessed with my tumour markers and always had them done. I hope your onc will inspire you a bit more, next time you see him. Can't believe you and Carole's little gc are 2 now. Its such a cute age apart from teeth!! Our tiny is settling a bit more after being moved to reflux formula and sleeping more, just not in long slots yet. He is gaining weight nicely having started off quite small. Their oldest has just started school, so she can snooze if he nods off. With only one baby in the family we are all fighting for cuddles every visit. He has a very sweet face and enormous dark eyes like big sis. Well I didn't get offered any thing in the job stakes but that's not necessarily a bad thing. I love the chase of a new job, especially interviewing but then think about how much extra work I have to do! I can retire any time I like now but keeping going will push my small pension up significantly. Plus the state pension starts so late that I think as long as I am happy and feel I have something to offer students I would keep working. Then there's me being available for mum 24/7 has to be seriously considered!!! So I am not unhappy at staying how I am as a I have a senior level salary, long holidays and no extra work. When I thought about it, it seemed a good result. People who got roles, took on huge amounts of work for a small amount so ha ha. I feel really busy this week without anything else to do. We are having a break near Antalya, as Victor told me to go as far south as I could manage to get longer daylight hours and warmer weather. It looks amazing views and a big hotel with lots of restaurants, pools and bars to enjoy.
Carole hope you are starting to heal but I think it takes some time sadly. Also best wishes to Mr Nicky. I have persuaded Victor to chop down a huge laurel bush and have been planting lots of nice flowering plants. The bed is huge without the green giant and its one of the best positioned ones we have. Trouble is having to keep watering them until they settle in. I am pleased with it though. Did anyone watch last night of the proms? I sang, bobbed and whistled in all the right places. What a friendly conductor this time. Take care all love Lily xxx
Nice to hear from you Nicky and what a complete mess up (stronger words come to mind) with your appointments, chemo, scans. I can only imagine how angry you were. Fancy telling you about new lesions when you didn't have new ones. Like you say you might have changed chemo's and then found this information out. On the positive side, things seem stable which is good and has your hair started to grow back a bit? Keep up with the little treats and I hope that Mr Nicky has recovered from his ribs.
Strangely enough they did xray me even though I and the dr thought I did have broken ribs. I'm not sure what the difference between broken and fractured is? Anyway I now have the help of Mr P and will try the next 2 weeks to rest up when I can. Yes, still suffering pain and I know you just have to give it time. I've had many broken ribs in the past 9 years so this will just add to the list. I think it might be worth asking my GP if there is a bone strengthening treatment that might help to prevent this in the future.
Have a good weekend all, our little grandaughter will be 2 on Sunday and we will manage a video chat with her.
Sorry for very long absence. I also had problems logging on so couldn’t add any post although I had read any that had been posted. Sounds like the same problem as you had Lily as a page full of ‘information’ came up, none of which applied. Strangely when I came on again later in that day it showed me as being logged on so it had either accepted by original attempt or had logged me on at some point as I know I always log off after posting so I don’t leave me permanently signed in.
Oh well, trials and tribulations!
Firstly, Carole, poor you and how painful. And annoyingly there’s nothing that can be done with cracked ribs is there? ED cracked one of hers a few years back at uni when she had an awful cough, so bad that it made one of her ribs crack! Then only a couple of months ago OH was being a MAMIL (middle aged man in lycra) on his mountain bike and came a cropper and landed on his chest (don’t ask me how or how he avoided his face) and after a few days went to A and E at my nagging to be told it was a cracked rib but not even worth doing an XRay as you can’t do anything about it. He was in agony for weeks so I know how you must be feeling - very uncomfortable, unable to sleep properly as you can’t turn over and dosing up on painkillers. All of this and you’re on your own and still have to walk the dogs, do take it as carefully as you can.
Lily, poor new parents, I'm sure foreign governments must use newborns as sleep deprivation torture! It’s a tough time and , if I remember correctly, they still have a toddler to cope with so it’s not as if they can just crash out when the baby actually does sleep, they still have their other child to look after. Oh the joys. Hope for them it’s short lived and they end up having the perfect little sleeper.
Glad to hear you’ve got a holiday booked, I don’t think you got away this summer hols did you? Where are you off to, if it’s sunny in October I’m thinking Greece, Cyprus or southern Spain, or Canaries? Spill the beans! Hope all isn’t too manic back at school though it sounds like it is. Any news on your promotion, sorry if I’ve missed it and you’ve already mentioned it.
Anyway onto me and my general b*lls up at the oncology department! Firstly treatment is going well, bloods holding up or improving and generally feeling much better during the cycles so able to get out and plan some nice treats. All of that side is going well. The oncology/consultant part not so good and in fact the worst I’ve had to cope with in all the time I’ve have SBC let alone primary BC. There’s been a lot of changes with some senior oncologists retiring and of course none of the same expertise replacing them. This has lead me to having several different oncologists over the past year, none of whom either have the time to read my (admittedly extensive) notes or even to to have treated me long enough to understand where I am with my treatments. This initially lead to delays in getting an MRI back in April to confirm what the March CT had alluded to and then a delay in the start of the actual treatment plus of course my bloods not playing ball and me not getting onto a full cycle of this chemo until much later. That’s the context of what happened when I went for my most recent CT result. So, after only a few cycles of chemo I had the CT, a bit early as remarked by my now oncologist but we kept the date. I got the results at my next 3 weekly appointment and was gobsmacked for him to say that although some liver mets had responded there were 2 new lesions! I had not expected that, especially so soon after starting a chemo regime so this threw me into an instant panic about what do I do next, stay on this chemo (and risk it not working any more) or go onto another one, bearing in mind I am running out of options after so many years. So he was pretty much telling me to start a new chemo. Anyway he started looking at bloods results etc just to see what was going on other than the CT and all of those were good and way better than back in March plus he then looked at my tumour markers which are now taken (but weren’t in the past at our hospital), these were dropping. This didn’t make sense to me so I was asking about the scan and then he says it was compared to the one taken in March! Not to the MRI and I’d had many weeks of no treatment at all at a time when we (I) knew my cancer was active! So I asked him to try and get the MRI and this event CT compared or I’d need an MRI to confirm any changes. Anyway he said he’d speak with the radiologist after clinic which he did. He then called me an low and behold there weren’t any new lesions, they were ones seen on the more accurate MRI! So everyone was stable and considering I hadn’t had any treatment for weeks earlier in the year it wasn’t surprising that no dramatic changes had been seen as everything would have grown a bit before I did start treatment. To say I was angry, later when I got home and knew everything was oK is an understatement! I of course didn’t get round to asking any of my questions that I wanted during the appointment as I had been so stunned, and upset, with what he had said. If I’d had some consistency, or he’d read my notes, he would have known about the delays etc and not relied on me, the patient, to tell him to check a more recent scan. Still fuming by the way! To be honest if I hadn’t now got tumour markers showing a totally different picture or I was someone not used to challenging the ‘expert’ I might already be on one of the few chemos I can now have and have consigned the current, effective one to the bin. Don’t worry I will be mentioning this at my next appointment next week and also make sure I get a second opinion (again) as and when I need to.
Other than all this medical stuff we have been getting on and enjoying a few things like grandson’s 2nd birthday, can you believe it? 2 already. Plus a few days out with OH as he’s not working full time at the moment, just contracting, so whilst the weather is still nice it’s worth getting out for a few lunches and walks.
Well that’s my very long catch up, let’s hope it posts OK!
ps Hi Lisa, how are you? Hope all is ok.