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.
Hello everyone at last!!! I have been unable to get into the site. It authentication error and would not let me in no matter what I tried. So frustrating. Its done the same again today so I came in through the breast cancer care website, pretended to change my profile and then went to forum and I'm in. Perhaps somebody could report the problem as the lack of posts imply that I am not the only one locked out. Carole you were ok in France! I am so sorry to hear about your accident with the dogs and I know broken ribs are very painful as well as slow to heal. It must be difficult to sleep and do everything, on your own. Poor you. I hope you are able to manage the pain and struggle through until somebody gets back to help.
Nicky I have been trying to ask how your latest CT went which added to my annoyance at not getting in the site. What are the latest results from this chemo? I hope they have been effective in making a difference, especially as you gave up your lovely hair by taking this chemo. I guess you will either be happy to continue or will be changing depending on the results. I hope to hear from you when you get the chance. Hugs.
Lisa I can't look back at your posts, so will just say I hope the job is going well as I know the social life is always fab . As Carole says, I hope dad and mum are ok too.
Back to work argggh. The pace went from fun at home to totally manic at work. All I can say is, the week goes by fast. I am battling to keep on track but the in pile is going at a faster rate than the out pile. The 3 new cancer dx of people around me (not actual family) are unsettling and one is a child so upsetting, especially when you have a fairly good knowledge of what is involved. Mum is battling through nicely and appreciating me. Its lovely but I am prepared for the weather to change suddenly! We have booked a holiday in October to catch the end of the summer sun. If we are lucky that is. I plan to just sit in a big all inclusive hotel and do absolutely nothing unless I fancy a swim. Just feel that's what I need to get some more energy. New baby is absolutely gorgeous but being a little terror for his parents who are on their knees. I go over there when I can to do the late evening slot and the girls all help each other out so much. I am very envious I never had a sister to share that part of my life with. Well better buzz off. Hope everyone manages to get on the site soon love Lily xx
How are you all?
Well after my last post since then I've had an accident with the dogs and after suffering chest pain for almost a week, an xray today confirms 3 broken ribs Home alone until Thursday so will have to get on with it.
I was indoors, crouching down to tummy tickle Mea, Aero the lab came crashing into me and I must have been pushed over, in doing so I have an enormous black bruise on the back of my leg as I hit a chair. I was almost on the floor in the first place so can't understand how i've done so much damage to myself. Of course when I was on the floor the dogs thought I was playing and were delighted to be on top of me. It was only play so I don't hate them for it. Just won't bend down next time to stroke a tummy.
Hope everyone is ok? xxx
It's been a quiet week for me, still hot and hot but last couple of days a bit cooler than the awful high temperatures we had before. We have contacted the insurance, but they're slow, in fact almost at a stop! I have been chasing up the MRI scan my doctor asked for on 24 July as I haven't yet had an appointment. Only to be told they haven't received any request. Grrrr. I'm sure they've lost the fax for giving me an appointment. My hands are better on the steroids, not so painful but my fingers are still extremely stiff and difficult to operate.
Lily no doubt you are back at school this week. Is it my imagination or were you taking a promotion? I hope your daughter is now managing to sleep a bit, it's really hard to be sleep deprived with a baby, I remember it well. I did watch the first Deep Water, but can't say I enjoyed it so haven't watched anymore. Sorry to hear about your 2 friends dx with cancer.
Lisa how is your dad now? Hopefully out of hospital and making a good recovery. How about you too?
Nicky I do really feel for you with your hair, my eyebrows and eyelashes never came back and the my head hair is very fine, thin and I have partial alopecia. I'm managing to cover up baldy bits at the moment. I'm trying to grow it into a bob. Here's hoping your CT is good, and the chemo is not wiping you out too much.
Well better take the dogs out I suppose, but I don't really feel much like it as they are not properly lead trained and pull me like mad. It's only for a short distance as I head straight for our nearest field where they can be off lead. Love to all xxx
Hi everyone, how are you all on this extremely hot weekend? I am enjoying it very much but know some people find it difficult. This includes baby who is struggling to sleep and in the early difficult days when there is not much between short sleeps and crying. She is rather frazzled and comes in for a sleep sometimes while I look after them. It must be really annoying that he doesn't shout here! I remember it well.
Nicky are you coping ok with the heat. I cannot imagine anyone standing to wear a wig in this heat! Sweat would be dripping down your head. Of course we understand you wanting a break from BC chat and thinking about other stuff but always here when you do need an ear to listen or a shout. Really good news that your bloods have held up. Hope you haven't jinxed yourself saying that though. Please keep me up to date with the CT latest results when they are in. Fingers crossed as always for some decent results from this regime. I think you did quite well on this one last time? Good luck with your hair and I hope it can grow back and cover gaps quickly. I never lost my eyebrows so most likely the cold cap protected them. This is a good time for eyebrow products and stencils so I hope you found something that is not too tricky and you like to draw them on. Really annoyed me that I still had hairy legs, just not reasonable sometimes! Have you been out and about or is the heat keeping you in. I think the mornings would be nice before the sun gets too hot. Any news on the girls and their problems. I can't look back but remember both had upsetting incidents. Mine is looking happy and going out far too much so I hope he has managed to weather his issues, rather than putting his head in the sand.
Carole have you managed to make a claim for all your ruined electrical products? Or are they saying it was a natural disaster the ….
Lisa I hope dad continues to improve after his terrible illness and take them to the cleaners with a medical claim company. I have appointed a firm to try to gain some help with mum's increased care bills after her accident. Its worth a try. They seem to think it is a good claim, we will see.
Better buzz off now. The hols are sliding away a bit too fast. I have had news of 2 cancer dx very quickly, which has been upsetting. One is original little chap's dad and the other a child. Not one of ours but with contact. It was un-nerving to have 2 within days but trying to help all I can and rally the troops and take a little of the scare out, when I can.
On a cheerier note I am enjoying Deep Water which I downloaded. Lots of bed action but fortunately they don't make you watch much. Victor says good grief every time there is another twist in the tale ha ha.
Hugs and good luck this week Nick. Lily xxx
I've managed to keep away from the forum for a while as it's my week off treatment so I try to do as many things as I can that are not remotely linked to BC! I'm sure you will all understand.
Anyway, back on the treadmill next week so I'm sure I will be reading the news a bit more than the last week or so.
Bloods so far have been good, except for the initial cycle so I hope that stays that way. I know soon the results of my CT which will give me an idea as to how things are going. Hair is a disaster! So much thinned, about 10% left!! Straggly and grey, how glam. Although wide hairbands, caps and a sun hat have been helping - no wig as I hate them. I think it is gradually growing back ie new growth but that will take a while to establish itself but it might start hiding the really baldy/thinning parts. Eyebrows and lashes falling out as to be expected as well. All such fun. Energy levels tend to be higher on my week off, there's a surprise (!) so it's nice to do a few more things rather than take it easy. Sorry about the short style of my reply, I'm trying to remember things that I've been asked!
Carole, how frightening about the lightening strike, goodness me that must have been awful
Lisa, how awful about the Legionnaire's disease, I do hope everyone is recovering well with no long term ill effects. Let's hope there's some compensation due but no doubt this will involve a lengthy procedure trying to prove it.
Lily - hope you are enjoying your time off work and your pupils all did really well with their exams.
That's about it from me for now, enjoy the Bank Holiday everyone.
Hi everyone, it seems a busy time on here and a lot of things happening that we could do without! Firstly thank you for your good wishes for our little chap, he is a really cute baby with the same enormous eyes as his mum and sister. Everyone who sees her goes on about her beautiful eyes and seems he will be the same. Ed had a slightly rocky start and despite the extra time in hospital has decided to switch to bottles. They are both very happy and he loves it, so that's the important thing. I think small baby boys tend to be a bit like piglets to catch up, which can be tough for some mums!! They both look really well and are settling back into normal life with one extra. Big sister has accepted that she has a brother now but has had some big emotional swings in the last week or two, keeping them busy reassuring her and keeping her routine. Settling well now.
Lisa I was so sorry to hear about your dad. That is such a serious illness and there must be some sort of compensation for it. Look it up as there have been others in the past or ring one of the no fee no win claim companies. Have you been tested to check you are clear if you have an infection? I hope he is on the mend now.
Nicky I hope your blood counts are staying high enough to keep your doses on time. How are you feeling on this regime after a few rounds? Did you manage to keep more hair as hoped? Hope that was the case. No weather for hot wigs is it? Nightmare. The long list of robberies you spoke of! Its terrible isn't it. Son's equipment had a tracker and the police refused to help them get it back. Thankfully he is back on track and even working nights so I just have to pray nothing else happens to unsettle him. They bought him a new vehicle with updated security so hopefully that might help and he often has a big security man with him. Hoping your daughter gets a job somewhere she can be happy and feel valued too.
Carole the lightning strike sounds so scary. It must have hit your home to do that. I hope your insurance pays out but we lost our holiday due to lightning so I know it can be tricky if a natural event. They wriggle out of everything they can!! As you say, the main thing is that everyone is safe. Thank you son is doing ok so far but I still keep an eye on him. Do your wild tomatoes taste and look like regular ones or are they different? Sound lovely. What didn't sound lovely, was the amount of blood they took from you, yuk! That is a lot in one go. I hope they can sort out the palpitations. I have never experienced that but imagine its very unsettling. Sorry to hear about your friend with BC too. Is it a good dx as far as these things can be? She is lucky to have you to offer support, as you understand well how it affects you. We are going to the Cotswolds for a few days before I go back to work, so will find somewhere and whizz off. Its been a stressful time with one of our little chaps having a horrible face wound and needing an operation to repair it. That has to be high on the stress levels, handing over a 5 year old. I stayed in hospital with yd and we managed to convince him it was all fine right up to the second he slipped off to sleep. They were excellent as he is scared of needles so they gassed him instead and he went off in a strawberry flavoured dream without a single stab. Its looking brilliant already. I get all the worst jobs and was nominated to try to get the bandages off which were cemented on the wound! Very difficult but we did it. He has had so many presents his brother thinks it might be worth getting injured !! Then my uncle with dementia overdosed on paracetamol and I had to take him in and we were there a very long time. I felt really bad as I bought them and so busy with everything else and the baby I didn't think about what he might do. He never has before but he did this time!! Not sure I have had 2 days sleep in a row tbh, so need a bit of a rest. Take care. Lily xx
Hi Lisa, oh my goodness, how awful for your family especially your Dad. Is there a case for claiming compensation? Not that it will help, but financial help might be needed as I expect your Dad will be off work for quite a while. Sorry that your trip was so awful. Hope you are feeling a bit better by now? Big hugs xx
I've had a bit of a stressful time since Monday afternoon. At around 3 pm, it started to rain very heavily here and with it just a couple of rumbles of thunder. Then out of nowhere a lightning strike through the house (it seemed like it was from the patio doors at the back to the kitchen window at the front) took out the electric. I was really scared, never seen lightning like it and the 2 dogs who are not usually worried about storms were also very scared, they didn't know where to go to be safe. Anyway the electric came back on after about 15 minutes but in the strike we lost an LNB, a TV, 2 digiboxes, a dvd player, an extractor fan and the Livebox router. So an insurance claim will have a few things to replace, and no doubt they will try to get out of it. Our insurance cover is for natural catastrophes.
It did shake me up a bit, but I'm ok now and am thankful I wasn't standing in the way. Love to everyone xx
Hi all, apologies this will be a bad spelling post as judt on my phone... First glad you are doing okay nicky, Carol glad daughter is better and lily congrats how exciting. Hate typing on phone but left my laptop at work... Sorry I've been missing in action, when I last posted was tired and said going to Edinburgh but it was to the airport for a trip to s'illot in majorca for the family that me and brother treated us all to for mam and dad.... I'll fill you in when back on line but huge mix up with rooms despite my arguments and wasting 1.5 days of our 4 day break ended up in grotting rooms, I can back exhausted and chest infection, dad came down ill ended up with 2 ambulances for him and him in awful state sugar was over 35 temp over 40, chest infection, then said pneumonia and when I told them about hotel tested him and he's got legionaires disease so been in hospital for 6 days, home now and on mend but it's been a rough time and I've been shattered so not logged on, will update you all tomoz when gor proper access but wanted to just check in with you all xxxx
Hi to all
Firstly, CONGRATULATIONS LILY, HOW EXCITING, ANOTHER BOY
Sorry for my absence, no reason really, I've been checking but just haven't got around to replying.
I'm happy to say since my last post that YD's pneumonia has gone and she's back to normal for now. Yes Lily they found it on xrays. She had a follow up last week to be sure it was finished. Thanks to both Lily and Nicky for asking.
Lily I love the name Albie, thank you for telling us. Hope all the family are doing well and I bet you'll have your hands full during the holidays. Lucky you, I'm a bit green! I'm very sorry to hear your son is suffering a bit with anxiety, which isn't easy to treat because of asthma. Perhaps some counselling might help? I know that men rarely talk about how they feel but try to coax him to speaking about it.
Nicky and sorry to you as well for your ED's work problems, it sounds a horrible situation for her, is this the D who is a chef? Restaurants can be a very stressful place of work (I don't know how Mr P has managed to cope with some of the situations he's had to deal with). Living in UK sounds quite a time for burglaries and robberies. Thank goodness he was at home, doesn't bear thinking about if the men had acted when he parked up. Hope you are getting on with chemo well, how is your hair now? I've had a product recommended to me by a lady who has/having chemo, her hair is very thin. It's a Yves Rocher product for volume, she says it made her hair very fluffy but fuller. I think I might give it a go as it's not very expensive.
Our weather was extremely hot until Saturday, no rain for weeks so I was watering but fortunately most of the plants have an irrigation system so it was just a few pots. We have our crop of wild tomatoes again, how they got there we don't know, we didn't plant them but they're ripening very quickly so I'm having to give away and will freeze some for soup/sauces. Friday was a very humid day so very uncomfortable and I just couldn't stop perspiring.
I had to go for a blood test today, 10 vials, with results going to 2 different doctors. It was suggested to me last week when I had a routine check with a gynae, that I may be deficient in selenium, vit D3, Omega 3 and a few others. He also thinks my palpitations and irregular heart beating could be down to too much Thyroxine. So, I've halved the dose of thyroxine for nearly a week now and the palpitations have stopped. Actually the blood test wasn't too bad, the lady knows I have difficult veins but she always manages to find one.
Recently a friend here has been diagnosed with bc, she had a lumpectomy and is awaiting for the results. Fortunately it was small, so hopefully they will have clear margins. Hopefully I've been a support to her.
All from me for now, take care Love Carole xxx
Congrats on becoming a grandma - yet again! My goodness, how many littlies do you have now? Lovely for you though. Hope your daughter recovers quickly and an extra stay in hospital can help. A good friend of mine’s daughter lost a lot of blood after her delivery and they kept her in for about 3 days. Luckily the ward was very quiet so the midwives looked after baby at night so she caught up on sleep and during the day they were on hand to give her great breast feeding advice. My friend and I had said to her to stay in as long as possible! It is a lovely maternity unit and they live locally enough for her partner to be able to go back and forward to visit quite easily. Certainly helped with this baby as it’s her first.
Both daughters are OK, thanks for asking. When YD had her bag stolen, with credit cards, the gang or person knew exactly what they were doing as the cards were all used within minutes locally and used contactless up to the £30 limit in a number of shops. They buy cigarettes as they can’t be traced but can be sold. Credit card companies are on the look out for this type of behaviour on an account so all of them had blocked the accounts by the 2nd time of use. Annoying still to get everything stopped and re issued.
ED is looking for a new role! She’s had a couple of interviews come up that she was suggested for, ie she hasn’t been looking so far but other people recommended her for them. Funnily enough the person recommending her had just got the sack from the place of work and the roles weren’t quite right fir him so he suggested her. Depending what happens with them she will start looking properly if they don’t come off.
And talking of vans I’d forgotten that our son in law had his works van stolen the other week. It is parked outside their home and they couldn’t understand why the alarm hadn’t gone off as it was late evening and they were in bed with the windows open. Anyway they live near a corner shop and they had a look at their cctv. There was a gang of 3 men in balaclavas who pointed an electronic device at the van to disable the alarm! No wonder they didn’t hear anything. The gang just wanted the equipment in the van and luckily SIL hasn’t left any of his own things in it that night, quite often he does as he has some early shifts. The van had a tracker so they knew when it was stolen and where they went before parking up and ripping out the tracker! Nothing seems secure these days does it?
Anyway, good luck to all in UK with this bad weather coming in, sounds like it could be pretty bad in places so lock everything down!
Hi Nick, sorry I realised I forgot to mention your daughters. It is such a worry isn't it. Being robbed is so personal and can be damaging to your peace of mind. The whole side of his work van was cut open in broad daylight and everything stolen including all his personal stuff, so he had to tell his boss everything was gone. The equipment is worth huge amounts and its not the first time its happened to him. It just hit him really badly, so upsetting to see him affected so much. He took himself to the gp who offered antidepressant (he turned down), a fortnight off (which he took) and there are tablets to prevent panic attacks but he is not allowed to have them due to his asthma, as the tablets can bring on attacks. I think he was ready to give up work altogether but his boss was very kind and spent a lot of time telling him how much they appreciated his hard work, all wanted him to stay and said that he was not to worry about the cost of replacing everything. He also got a pay rise so that was brilliant to head him back on the right path. Looking stronger each day but being sent back to the same place every time, which is not so good!!! I have everything crossed that nothing else happens. He has had to cover the cost of all his personal items and as you say cancel everything you have as fast as possible. He didn't know how long they had his cards before he found it. It was ok but you never know what else could happen when they get things. What a worry for you to have ED having problems too. Will she stay there or look for something else. Its so difficult when you like most of your job and it just shouldn't happen. How are they both? Lily x
Hi everyone, good to see the thread is working normally and easy to post. Did anyone else have trouble posting? The weather is so strange this year and so varied across the country. We were planning to head up to Yorkshire this month but will postpone it. So sad to see all the damage to towns and homes, on the news. How is your area Lisa? I know you have previously had bad damage from swollen rivers locally and the whole bridge down from memory? Terrible for locals. Meanwhile Carole is cooking hot this year! Are you managing to save your plants? It takes a lot of energy to keep watering. Do you have hosepipe bans in hot weather? Hope your daughter continues to improve.
We have a new little chap. We are all fairly surprised as we had all guessed a girl except his dad, who thinks he is the bees knees. He is a footy fan so is already dreaming of him playing for the team! He was not very big,6lb 9oz so well under the average these days, but considered a reasonable size for babies of our generation. It was quite a long wait as labour was erratic and didn't establish for quite a while so she was pleased when she went in for a check and was well on the way so they kept her in. He has been called Albie, which I thought was a nice mix of trendy but familiar. They are both well but shattered after a long spell of little or no sleep. They have had to stay in but all is well. Lily xx
Yes, I hope you’re not having problems with the rain Lisa. I know the dam in question isn’t anywhere near you but it looks like Northern England has had so much more rain than we have had in the South. OH and I had just fitted our new water butt to the downpipe of our garage at the weekend and we had a days worth of rain earlier this week. From pretty much nothing in the butt it was nearly to the top in that one day, off quite a short run of guttering so it just goes to show how it can all collect so quickly and overfill rivers and reservoirs. And just to think a week beforehand we were all complaining about the record temperatures!
Hows the weather in France Carole, unpredictable or just changeable? Hope YD is well on the mend, last thing she must need in the middle of the summer.
Lily, hope your son is OK. Funnily enough our YD had her bag stolen at work the other week. Some opportunistic ******* came into the restaurant whilst they were prepping in the morning, asked them a question to distract them and nicked her bag - which they have always left in the restaurant itself rather than the kitchen. And the tiny kitchen looks into the restaurant so it wasn’t as if it was left completely unattended. It caused her a lot of hassle involving the police, many phone calls to banks and credit card companies and of course no cash or means of buying anything until new cards were issued. Therefore she couldn’t use public transport or buy anything. Luckily her phone was on her at the time so they didn’t get that and she was able to block and alert those companies immediately. Was your son robbed in a similar way or by someone actually at work - that would be worse I expect, for it to be someone he knew. We also have ED off work with stress at the moment! Sorry I never seem to relate these stories to you, I guess I don’t tend to put their woes on here but should share at times. Her boss is just the most unreasonable person possible and as she owns the company there is no way that will change any time soon. ED is also a very strong capable young woman and not one to be bothered usually by anyone like that but the atmosphere at work has been awful fo a long time so her Dr signed her off for 4 weeks as she said there was no point going back after a week as it wouldn’t help. Btw it’s not just ED who finds this boss so bad, staff turnover is really high and moral very low. Unfortunately this boss will be the death of her own brand which is stupid as they are doing so well. I read an article recently that was discussing psychopaths (it was to do with the scrip writing of Killing Eve) and whatever the percentage of the prison system are psychopaths the same percentage are CEOs of businesses!
So, I’ve been on my week of but rather than have toothache this time around I have had a lingering stomach complaint! Typical, just when I want an extra few days of feeling better I get this. I of course was concerned it might be directly to do with the big C and my brain went into overdrive but OH casually mentioned a few days in that he had also been feeling unwell and is gradually getting back to 100%. I said to him can he let me know if he’s not feeling great as it does then help me realise not everything I have is C related! Typical man not mentioning anything at all about feeling unwell unless it gets so bad they need to do something about it, grrrrrr.
Thats all for now, a long post from me about various ups and downs. I will let you know how the wedding goes, I’m getting ED (who is professionally trained as a makeup ‘artist’) to do my makeup so I at least feel I’m less washed out than normal and how treatment is when it starts again next week.
ps Lily, Poole is a small town but quite a history and the countryside around is great for beaches and walks so not a typical seaside town but a nice place to visit for a couple of days like we did xx
Hi, I had trouble posting today so maybe that's why it is quiet on here. I got in and could read it fine but just got a strange screen each time I tried to post and an odd format. Anyway here at last. Lisa how was your Edinburgh trip? I haven't been there since a child and would like to go back some time. The journey puts me off a bit as a long way. Could fly but not sure if the airport is conveniently situated for a visit, anyone know? Weight gain grrr the scourge of our lives, so annoying to have to even think about it let alone do something about it. How are you getting on?
Nicky I hope your bloods are strong enough to have all the doses you are supposed to have. I hated the thought of you having toothache. Bloody not fair to have that as well. You know how Lisa and I feel about the D !!!! Typical to have a wedding with all the photos and seeing people when you probably just want to get on with it. Some people can be too persistent with their questions. I have lost track and am not sure if you have been to it yet, hope it goes/went well and was not too tiring for you. I don't know a lot about Poole, would you recommend a visit? Hope you are generally feeling ok and managing to get lots of goo days in and staying strong. Keep eating lots of eggs and protein xx.
Carole how is your hand now? Hope the steroids are having a positive effect and not disturbing other things like your blood results. One of my students has a gadget in her arm so she just waves a little receiver across the skin to find her sugar levels with no needles at all. Really nice for her as she is young, so type one and puberty can be a very unsettled time. She is very matter of fact and grown up about it all. Well have you had any more rain? We have floods up North and bridges down and floods. It looks incredible on the tv as our weather might as well be another country in comparison. So sad to see people lose homes. or have them wrecked. I hope you are ok Lisa, as I haven't seen them mention your area but know floods are possible in your area when water levels rise. Carole how is your daughter? I hope she is recovering well now. We are still waiting for the baby which is due any time. I have had a lot of worry with my son who was robbed at work and has been badly affected by it. He has been home, signed off by the dr but is just going back to work in the last few days. Going ok so far but I can't relax quite yet as he has a lot going on at one time. Work were brilliant which has made a big difference and they gave him a rise. Great timing for a boost. Love Lily xx
Hi everyone, how are you managing in all the heat? Trying to sleep has been terrible and I just n kept the fan going all night on the worst days. Victor had his birthday on the very very hot day and we had planned to go to the coast but decided to stay home instead and everyone came round. The littles all enjoyed the paddling pools and chasing their uncle round the garden with buckets of water. Ed is suffering terribly with the heat and unable to sleep, turn over, heartburn, all the usual things at the end of a pregnancy. She looks really beautiful when she is pregnant but won't believe me. Although they say everything is fine she gets sent into hospital after every midwife appointment due to the very large size of the bump, which is not measuring how they want. It worries me when they do but the hospital check everything and say baby's fine. She's being sent in again on Monday which will be about her 7th scan. As they don't want to know the sex this is always tricky in case they accidentally say while measuring and checking. I hate it when they are actually in labour but I'm very excited about when it is here. I have said it is a girl. We will see.
Carole I was sorry to hear about your daughter having pneumonia. My son had it in the summer when he was a teenager in both lungs at the same time and had a stay in hospital. They were very slow to dx it and I had to be rea;;y persistent as his temp was 39.5 and I knew it was something serious. He responded well to iv antibiotics. I hope she picks up very soon. I read that pneumonia can develop from peanuts if you choke and a bit goes the wrong way as there's something in peanut/peanut oil that in some way helps it develop. Not sure how true that is but when it appears in the middle of summer you have to wonder how. Did they pick it up on x ray? Both his lungs were packed with it and he just dodged intensive care. I wish her a speedy recovery, must be dreadful in this heat, poor thing.
Nicky how are you coping in this heat? It must make the side effects worse and harder to ignore.
Lisa how has it been with you? Lily xxx
Hi all, Nicky I really feel for you with your hair loss, it was one of the most upsetting things about having cancer I can remember. Is your scalp becoming itchy yet? After my first chemo about 10 days after my hair started coming out and the itchy feeling was awful. This was helped enormously when Mr P shaved it all off for me. We both had tears about it. So, sending hugs to you.
Enjoy your break away Lisa. Lily hope your daughter is managing to keep cool with her pregnancy?
After around 6 weeks of no rain, we have just had a torrential shower for around 1 1/2 hours. It was unbearably hot, I don't remember ever feeling so hot, even in the Middle East! There was no air and as well as being hot it was incredibly humid. Whilst I like the sunny days, topping 40 odd degrees is too much. Thankfully since the rain and storm today it is significantly cooler.
The steroids seem to be helping a bit with the hands. My dr is sending me for an MRI of them. YD has been very poorly with pneumonia of all things in the middle of summer. She is now on 2 different types of anti biotics, and all the medication to prevent thrush. She is slowly getting better but we're waiting on results of a blood test.
So have a lovely weekend, whatever you are doing Love Carole xx
Hi just a quick reply to Nicky. Very relieved to hear your treatments are going ahead as planned and that all is ok. The bloody hair!! I am really sorry to hear that as it was always one of the things that most upset me, so I am feeling for you. Well done for battling back with the wide headbands, they were my choice too as wigs are so very hot, especially this summer. A terrible year for people in wigs. Will catch up more another day love Lily x
Sorry for absence, no real reason just laziness I suppose as I don’t logon each day but I tend to read then forget to answer.
Hair is being a real pain and has nearly all fallen out which didn’t happen last time on this chemo. I know I used the cold cap but I also haven't come across any fellow Eribulin ladies where it has become quite so thin so it’s quite unusual. I’m at the point of wanting to cut it right off, in fact shave it off then allow it to grow back as it tends to do during this chemo. However I can just about disguise it still with very wide hair bands and caps so I’ll make a decision soon. One reason to hold on to the little I have is that we have a wedding to go to in the next couple of weeks. Something I really could do without but it’s my best friends son. Anyway I have eventually found a suitable hat to wear with an outfit I wore last year when we went to France for a wedding. So the cost is very low and I’m confident that I will look good, a real worry when you know you don’t look your best and everyone else there will be (and they won’t be on chemo either!)
The other thing that literally has been a pain is my tooth. It flared up again the last chemo cycle (I’m sure it’s down to when my immunity drops) and I’m waiting for this time. Nothing can be done just yet (due to bone strengtheners) and I’m waiting for a referral to the max-fax chap at the hospital. I’m doing my best to help my immune system but the little uggers seem to keep multiplying and causing the pain. Being on antibiotics is not what I want, especially on my week off chemo when I’d rather be feeling better and not dosed up.
Other than that bloods are fine and chemo has been going ahead on planned dates (I’ll find out tomorrow after my early morning blood test whether they’re OK for this weeks dose) which makes it easier for us to try to plan a few nice treats which we hope to do taking advantage of the nice weather we’re having. We’re also due a heatwave next week Carole but luckily for us we’ve had a bit of rain and some cooler days rather than your continued drought and heat. Also the night temperatures have been cool enough to sleep although, again, next week looks a bit toasty at night.
So that’s me up to date, Lily I’ll read your PM after and reply but maybe this has covered things?
Btw when we went away the other weekend we went to Poole which hasn’t got a beach in the town, just a harbour although there’s lots of beaches just outside of the town itself.
Carole, I hope your painful fingers are helped by the steroids but I know what you mean about not wanting to take them. They are one of the reasons I didnt want a different chemo as you have to take steroids for it, this one I don’t need them. A bit of a juggling act with your diabetes from what you say as well as being on them anyway, I do hope it’s a low dose. Also fingers crossed for the chest X-rays, we all know what the worry is like.
Lisa, enjoy Edinburgh, I didn’t realise it was going to be so hot up there, it must be a bit of a shock for everyone as quite often the heat doesn’t get there. Pace yourselves, find a nice park to sit in to keep cool, maybe a museum or something interesting that will be cooler.
Lily, only 2 days to go, yippee, and then a nice few weeks off. Are you going away as you usually do or staying at home to wait for the new bump to arrive? Any other news form you of interest? How’s Mum, or darent I ask? And all the family? Hope all is well.
GS is growing up fast and nearly 2. We looked after him on Friday whilst ED was at work but I’d only agreed as OH was at home as he is currently contracting at work so not working all 5 days of the week. He (GS not OH 😉) is such a chatterbox and loves learning new words. We do have to be careful what we say now as he would easily pick up anything we say, even if it wasn’t a bad word, maybe an inappropriate word. I was so tired from the chemo earlier in the week that I had a sleep when he had his - we both needed it!
Well, that’s my update, have a good week all, enjoy the sun but be careful, it’s looking hot 🥵🌞
Hi Buddies, how are you all? Carole I am very very close to your age, so I watched it too but can't actually remember it at all. Hope its not too uncomfortable with the next heat wave. Must be difficult with the animals too. Hope your daughter is picking up. You would not get antibiotics here just in case!! They are really strict on trying to stop super resistant bug by reducing their use. Well that would be if you could get to see a dr of course. My daughter's surgery has all telephone interviews first. You get a time the dr rings you back and then decides from the conversation if you are allowed an appointment. Very frustrating at times. I feel this could be quite dangerous for somebody who did not understand how to dx themselves. Nicky yes I too hope all is going well. I have been concerned that your bloods can stay high enough after the early problem. Keep me posted how you are getting on. Hopefully you are managing some lovely days out rather than unwell. Hugs and keep that chin up that has battled through so much c...
Lisa well Love Island is my guilty pleasure too although I seem to be getting bored this series quicker than usual. A lot of game players I think. I downloaded Chernobyl to watch, which was terrible at the very start but very moving, shocking and gripping as it got going. Then we have just watched the 2 series of Riviera, which I loved, apart from the ending. We have not finished school yet down here, with some schools going to Wednesday. We finish Tuesday and then I can relax and wait for baby to arrive. Hoping to have quite a lot of holiday to enjoy the new arrival. Hope you have a good trip to Edinburgh. S was there earlier this year to run the marathon but we didn't have time with work commitments to watch. Well better buzz off as I have 3 gs staying overnight, so there are bodies everywhere. Its been a lovely evening and one by one the littles nodded off watching tv. Biggy is still half awake. Take care, Lily xx
Hi Carol, what a worry eh, hope you are bearing up but like you say they've done lots of checks on your chest so hopefully all okay, let us know. Steroids are a pain but hopefully they will help with pain.
Heatwave sounds lovely, it's been a mixed bag here between torrential rain and glorious sun, who can tell what tomorrow brings.
I've been really busy, had my parents golden wedding so had meals out and a wee party, I was cleaning up the garden at 1am lol not like me, then followed by dad's 70th and he's still working lol. We also had distance family that have never met come up to see where their grandparent, great great grandparents lived and died, all new to me so I was on the research, graveyard searched and looking st all my uncles family history, it was lovely and another meet up planned.
Work bonkers as ever, but I've a week off, we are setting od in in a couple of hours to Edinburgh for 4 nights in the heat with my parents, brother and sis in law and niece and nephew. Its mam and dad's anniversary present along with a 100 page photo book which took me all through the night to do lol... Wish us lu k it's very hot.
So lily you must have finished work now, what's the plans for summer? You hooked on any TV, I hate to admit it but I'm hooked on love island lol... I've also gained almost all my weigh back on so need a kick when I get back.
Nicky, how's the treatment going? Do you feel up to much? Hoping you get some good days to have a walk or a wee trip and the hair is still hanging in xxx
Better go and get ready for my holibobs.
Oh forgot to say, logged on Facebook and angies partner had put a picture on of her saying how much he missed her, it was a lovely photo xx
Thanks Lily, I'm on to it. I've cut down on carbs as already it's sending my glucose higher. Yes veg is best, and I like hummus to dip but not sure how high carb that is. I make my own so it's better.
You're right in remembering I've had lots of chest xrays, for coughing probs and fractures. I saw my gp today and she checked oxygen levels with one of those finger things, and it was fine. So I'm not too worried, just hope the steroids help with the problem of hand/finger operation.
YD poorly today, a virus probably but shivers and heat, plus a cough. Our Dr couldn't detect anything so ibuprofen and paracetamol. She was given ABs just in case it doesn't improve.
So black cat Alfie still here, all seems ok now. He's just a very grumpy cat.
We're about to have another heatwave over the weekend and next week. So still plant watering which is very tiring. We've had no rain for about 6 weeks now. Our cucumbers are finished now but the wild tomatoes (that just appeared) are green so will ripen soon.
How exciting, I remember it well, Neil Armstrong walking on the moon. 50 years ago and I was only 10. I expect I'm the oldest buddy 😂😂.
Have a good weekend to all. Love Carole xxx
Hi, I just saw your post. You could do without another worry that's for sure. First if you are worried you will eat more and put on weight, can you buy things ahead to help with this. Maybe have a tub of chopped up salad or veg sticks so they are ready when you feel hungry. Try not to buy favourite goodies, although if you are worried they may be comforting. Difficult but try to get a reasonable balance. Hopefully if a weak dose they will do some good but not make you feel starving. Good luck with that treatment. Am I right in thinking you have had quite a few chest x rays in the last few years? When they were looking at rib pain? So you have had clear ones with pain and I hope it will be the same this time. Although having something they can improve would be the best. Good luck and talk here whenever you need to xx
Nicky how are you getting on with the next doses? Hope you are managing to tolerate the next one better. How is you little gs these days? Must be growing up fast and so lovely to have around.
Lisa just pop in when you like. We all love it when you are busy and having fun. Love Lily xx
Evening ladies. I'm on late because I'm stressed and worried.
Rhumatologist is puzzled about my stiff and very painful fingers , but on examination she realised how much pain I'm in , but doesn't know how to treat it, as all tests are clear,so has prescribed low dose steroids to see if that improves the movement of my fingers. Steroids are bad for diabetes and cause weight gain as they increase the appetite. So not happy to take them but not happy with the discomfort. I will try.
The other more worrying thing, she said my lips are blue tinged, did I have a cough, (yes which has got worse), breathlessness, and tiredness. So she is worried I might hàve a lung issue and ordered a chest x-ray for next week. She knows I've had cancer x 2 and is surprised I don't see an oncologist anymore.
Worried but not long to wait, x-ray next Tuesday.
My lips don't look blue to me but hey ho .
Have a good weekend all xxx
Hi all, sorry ive been so busy I've not been on, it's been a very hectic few weeks but I'm fine just fat lol. Will log on when my eyelids are working tomorrow xxx
Hi, sorry I seem to have read posts and forgotten to come back and reply! Peacock I am so jealous of your sun as I would like to have seen more this year. Its warm but often cloudy. Well in the hours I can be outside anyway. Lovely pictures, ahh. You are good at testing out the tech. Typical of the family to leave you to sort a grumpy old cat who bites!! No doubt because it hurts but take care, after last time. Maybe distract the at with something nice to eat so he learns there is something good too. Job front is not clear but it would take pages to explain. Bit of a hash with no clear division of roles still and all I can say is I have no idea what I should be doing any more. Will see what happens as we go on to the new term. Lisa how are you? Hope you are getting stuck into your new responsibilities and enjoying the power!!
Nicky I am sorry to hear that the chemo is a bit worse than last time. Do you think you were any more focused last time on things like resting or eating to fight back? We chatted a lot then about what foods to eat. Might be worth looking back if you can to remind yourself of any changes? We always said chemo was affected by your mood, so perhaps you are still getting back into your stride after this disappointing return to treatments? It has to take time to take it on board and build up to positive mood. You always sound upbeat but I know these things sit in the back of your mind and are hard to ignore. Hugs. The trip away sounded a lovely break. Where did you go? It was our wedding anniversary and we went to the coast. There is something about the sea air that always makes me feel like I can breathe twice as easily. Yes heading for every teacher's fav time of year, the summer hols. New baby is due in less than a month. She has had so many check because she keeps moving up and down on the growth chart and they don't like change. All checked every time and they say no problems. Its about 5lbs now they say. I am always scared for the girls, actually being in labour but very excited about a new member of the family as there will be nobody at home, all in school from September. Better finish off here and send hugs. Lily xxx
Hi Nicky. Sorry this time the chemo is making you very tired, it must be horrible that it's hitting you harder. I doubt it's to do with age (you're still a young one). Perhaps the dose is slightly stronger? How about nausea? Hoping that is not a side effect. Rest when you feel you need to and don't push it. You are a super trouper.
Our weather, well a cooler day yesterday and we actually had half an hour of rain. But, not enough as temperatures back up today. It seems never-ending! I'm a sun lover, not to sit and sunbathe but just warm, sunny and not humid is my ideal. Thank God we have the pool to cool off in. After all the watering in the evening I'm so hot and sweaty a dip in the pool is essential.
YD is staying for a couple of days before she goes to Bordeaux for a few days. She brought Alfie, our 16 year old cat (brother of Finn) for me to look after. She took him with her when she left last Sept. Anyway he had a vet visit today because of a strange claw. This claw had turned into his pad obviously causing an injury so now he's on ABs, and I have to clean his feet everyday. Great! Not looking forward to this as he was the cat that put me in hospital with an infection a couple of years ago after biting me at the vets. We gave him a pet sedative before we went, he looked "stoned" but was still feisty enough to bite YD and the vet. So it's not going to be an easy task bathing his paws on my own. Oh the things we do for our animals.
Hope everyone is ok, schools here have finished so for Lily, not long now. Any news about the job app?
It's late so off to bed. Love to all Carole xx
Poor you Carole, having such a long spell of hot weather. I know what it was like in France last year and when we got home. Lots of sleepless nights and no energy to do much. I hope it breaks for you soon.
We have intermittent good weather and clouds but also no rain, even when its been forecast. Luckily our garden is quite small now, unlike the last house, so I can use a watering can and do several (lots in fact) trips from the tap and back in the evening to keep things watered. I use it as my exercise rather than a hose, but don't have too far to walk each time otherwise it would be the hose. At the moment its not too hot at night, although has been, so I try to trap the cool air in the morning and then open the windows later on when it cools down. Doesnt always work though. However as our house is a converted bard it has very thick wall so it does keep quite cool in the day with no really direct sunlight getting in the bedrooms as it's positioned so it's not south facing. Our bedroom gets the brunt of it though when the sun is setting so I shut that up with blackout blinds until its gone down. Can't complain, its quite nice weather and not too hot.
I must say that my fatigue has been quite bad though on this chemo this time around, I didn't notice it as much in 2017, maybe its age as well! I just have to pace myself. I have had the complete dose this cycle and managed to get a repeat of a tooth ache that I had. It's all to do with a root canal and has been very painful. Back on antibiotics which make you feel grotty as well so not a happy bunny. I need to get the hospital dentist involved as I'm on bone strengtheners so theres all sorts of things I'm having to sort out at the moment and all things I could do without.
However as it was (and still is) my week off chemo OH and I had a short break this weekend down in Poole. The weather was lovely and even just a night away and a bit of sea air did wonders for us. No real agenda, just using up a voucher that ED had given us for Christmas so it was nice and cheap as well, all the boxes ticked.
Hope you are all OK. I expect it must be end of term time soon Lily, bet you can't wait to get away for a bit and spend time with the family.
Bye for now
Yes Lily, still sweltering in the heat. By 10 oc in the morning it's already pushing 30 degrees. It's too hot to be outside and watering all the plants is a very tiring, and hot experience. We have an irrigation system for some of them, but sadly not all. It's been this hot for about 3 weeks now. Whilst I love the sun for dry days, it is even a bit too hot for me Your physio exercises sound interesting, how is ED coping with the pregnancy now? Enjoy the coast weekend.
Hope you are doing well Nicky and like Lily, yes I hope too you can fit in between some nice things.
Have a good weekend everyone, love Carole xx
Hi, how are you all? Nicky that's great to hear the big improvement in your blood counts and I hope you can use diet to keep them at an acceptable level, so you can stay on track. I wonder if the body adapts to these things as well over time, so counts pick up faster as the immune system works to help you. The hair was always difficult for me when it was going or predicting it going. I think once its happened you can relax more as you know what you are dealing with. Is it looking like hairbands will cover any thinning? Mine grew back curly and darker, rather than straggly, but sadly the curly bit vanished. Another lady told me she went completely grey, strange how it affects different people rather than doing the same to everyone. How are you getting on with nausea/ We always felt that our mental state or any illness had a big effect on the level of the side effects. I have caught a summer cold which is annoying but seems wide spread down here so keep away from bugs. Are you managing to have a lot of good days in between to do things you want? Well keep me up to date with how the treatment is going and when they do scans. I have my fingers crossed as always for some good results.
Carole how is the temperature with you? Has the very hot spell passed? Its so mixed here, hot and sunny then disappears but never cool, just cloudy. Everyone seems very tanned but I seem to be out on the cloudy days so still pale, especially my legs annoyingly. I'm going to the coast for a weekend so maybe some sun. I have been to a physio fr exercises to do to support my internal organs, so trying to keep doing them. Then back to the consultant but they say any op can make it a lot worse so as I feel ok I will probably just do nothing for now, unless advised otherwise. I hardly notice it. So that's lucky really. Are you growing lots this year?
Lisa how are things with you? You always have so many lovely things planned, I am sure you are busy out and about. Better buzz off love Lily xxx